I know that we still have a couple of weeks left in 2016 but I am ready to say good-bye. 2016 has not been my favorite and I am done with it. There has been political unrest, too much violence, personal disappointments, family illness, and frustrating unfinished business. Farewell 2016, you can go now.
This time of year always makes me a little bit nostalgic and this year is the same I guess, despite the disappointments. I am not unable to appreciate the blessings that have been bestowed on me and my family. We are strong despite the challenges of the past year and we have not been toppled by the hard days. I am proud of my children and their responses to discouraging situations. My sons and daughters are resilient and they depend on one another for strength. This makes me proud and fills my heart. 2016 has not broken us.
I have some specific hopes and dreams for 2017. Angie's wish to be adopted will be realized and she will legally become our daughter after spending over 3100 days in foster care. My grandson, Ezra, will be healthy and happy after a treacherous and unpredictable first year of life. The monstrous remodeling project that has hijacked our Christmas will be completed and our home will be dust-free at last. My parents health will be stable. Our businesses will prosper. My boys will continue to develop into the amazing young men they are becoming and my three adult daughters would be happy and fulfilled. Too much to ask?
I have few other hopes too........that our community could find healing and we could learn to accept and forgive one another. That children in foster care would always have a loving alternative home where they are safe and that the justice system would do its job and punish those who inflict pain on others. That we could all set our political views aside and realize we are more alike than we are different.
Okay, I am asking for a lot, but I have learned that if you do not ask the answer is always NO. I am going to dream big for 2017 and see what happens. Farewell 2016.
Monday, December 19, 2016
Monday, November 28, 2016
There is a memory that I have not been able to get out of my mind so I have determined that I must be meant to share it. When Angie was almost two years old she had her tonsils and adenoids removed and for some unexplained reason she became really sick the next day. We expected to go home from the hospital on the morning following the procedure and the next thing we knew, the emergency response team was being called to Angie's room. She was in severe respiratory distress and was immediately moved to the intensive care unit. She would stay there for almost a month.
While Angie was sick, we were given daily updates on her condition each morning. Day after day we received bad news and the doctors (who were amazing) continued to switch up her treatment plan to try to bring her back to us. Angie had severe pneumonia and her lungs had collapsed due to the infection. During this time, Angie was heavily sedated and her breathing was completely managed by machines. She was barely there.
One day, I mistakenly received a text message that Toby meant to send to one of our close friends that said, "It does not look good for her future and I don't think Kara knows". I knew. But how do you accept that you may not bring your child home from the hospital? No one wants to admit that.
Eventually, Angie fought back and she began to get better. Just when we thought the worst was over, she developed a hospital-borne infection in her blood due to a central line that was placed in her groin to deliver her medications. She was also physically dependent on pain medications and she had to be slowly weaned to avoid withdrawals before she could go home. Again, we waited. During this time, I spent most of my days in a hospital chair holding my girl, after three long weeks when I could only pull my chair up next to her bed and hold her hand. I had hours upon hours to do nothing but think.
For some reason these long days and my thoughts during that time have remained firmly ingrained in my memory. As I rocked my baby girl, I tried to imagine her life in the years ahead and I couldn't. I had no idea if or how she would survive. We were still dealing with catastrophic seizures that did not respond to medication. Her neurologist did not believe she was a candidate for surgery and the powers that be at DHS believed she should have a Do Not Resuscitate order developed to prevent life-saving measures when the next major seizure occurred. They did not believe she could have a quality life. The days were long and I treasured the moments that I believed could be some of the last I would have with Angie. I was scared, but I had an overwhelming feeling that her story was not over.
I will never forget those days, They are so vivid in my mind. I am convinced that her story was not over but I could not imagine the next chapter. Now, I know that she has been the recipient of a miracle. There is no doubt in my mind.
After Angie's lifesaving surgery, we were thrilled by her amazing recovery. Last summer, when we attended the 2016 Hemispherectomy Conference, we realized that her recovery has just begun. The research and information that we have now has opened doors for her that are limitless. Angie's school has taken the information to develop a program for her that completely meets her needs. Because of the information we have gained from the sponsors, the Brain Recovery Project, we have started new therapies that have literally changed Angie's life.
Tomorrow is Giving Tuesday. It is a day that is meant to highlight organizations and to raise money for worthy causes. I ask you, will you give? Our family, and many like ours, have benefited from the activities of the BRP and there is much more to be done. Please consider a gift on Angie's behalf, to honor her miracle and to continue the important work that still need to be done to her children with catastrophic epilepsy. We would be so grateful.
While Angie was sick, we were given daily updates on her condition each morning. Day after day we received bad news and the doctors (who were amazing) continued to switch up her treatment plan to try to bring her back to us. Angie had severe pneumonia and her lungs had collapsed due to the infection. During this time, Angie was heavily sedated and her breathing was completely managed by machines. She was barely there.
One day, I mistakenly received a text message that Toby meant to send to one of our close friends that said, "It does not look good for her future and I don't think Kara knows". I knew. But how do you accept that you may not bring your child home from the hospital? No one wants to admit that.
Eventually, Angie fought back and she began to get better. Just when we thought the worst was over, she developed a hospital-borne infection in her blood due to a central line that was placed in her groin to deliver her medications. She was also physically dependent on pain medications and she had to be slowly weaned to avoid withdrawals before she could go home. Again, we waited. During this time, I spent most of my days in a hospital chair holding my girl, after three long weeks when I could only pull my chair up next to her bed and hold her hand. I had hours upon hours to do nothing but think.
For some reason these long days and my thoughts during that time have remained firmly ingrained in my memory. As I rocked my baby girl, I tried to imagine her life in the years ahead and I couldn't. I had no idea if or how she would survive. We were still dealing with catastrophic seizures that did not respond to medication. Her neurologist did not believe she was a candidate for surgery and the powers that be at DHS believed she should have a Do Not Resuscitate order developed to prevent life-saving measures when the next major seizure occurred. They did not believe she could have a quality life. The days were long and I treasured the moments that I believed could be some of the last I would have with Angie. I was scared, but I had an overwhelming feeling that her story was not over.
I will never forget those days, They are so vivid in my mind. I am convinced that her story was not over but I could not imagine the next chapter. Now, I know that she has been the recipient of a miracle. There is no doubt in my mind.
After Angie's lifesaving surgery, we were thrilled by her amazing recovery. Last summer, when we attended the 2016 Hemispherectomy Conference, we realized that her recovery has just begun. The research and information that we have now has opened doors for her that are limitless. Angie's school has taken the information to develop a program for her that completely meets her needs. Because of the information we have gained from the sponsors, the Brain Recovery Project, we have started new therapies that have literally changed Angie's life.
Tomorrow is Giving Tuesday. It is a day that is meant to highlight organizations and to raise money for worthy causes. I ask you, will you give? Our family, and many like ours, have benefited from the activities of the BRP and there is much more to be done. Please consider a gift on Angie's behalf, to honor her miracle and to continue the important work that still need to be done to her children with catastrophic epilepsy. We would be so grateful.
Monday, November 14, 2016
We are preparing for Angie's adoption in full force now. Yesterday, my photographer friend captured some family pictures that will celebrate the formal addition of Angie to the Harris family. It was one of the best days I can remember in a very long time. Every single member of our family together in one place. Children and Grandchildren laughing and loving each other. In a beautiful barn. Then, dinner together afterwards.
As you might imagine, this is a really emotional time for me. We were recently given Angie's DHS file, which included documentation of every hospital admission, every diagnosis, every seizure, near-death experiences, and the recommendation for a DNR order for our precious child. The file included documentation of the fight we waged against the order. I forced myself to read every word and feel all of the feelings. And I cried. But what I realized was this........she has transformed our family. We will never again be the family that existed before Angie.
Because Angie has been in foster care for over eight years, we have had regular appointments in the county courtroom and before the Citizen Review Board. We have had so many people involved in our lives and all have known every detail of Angie's history. Something that Toby and I have heard repeatedly (and strongly disagree with) is that we have "saved her". No. We have not saved her. In fact, the opposite is true. Angie Rae soon-to-be Harris has saved our family. Saved us from becoming complacent and discontent. Saved us from taking our daily lives for granted. And saved us from a life without miracles.
Make no mistake, this child has had miracle after miracle bestowed on her as she has cheated death and overcome extreme challenges. We have become the recipients of God's grace as we have prayed for her to stay with us forever. We are blessed and better for her presence.
Toby and I were not seeking to add another child to our family when Angie came into our home. We thought our family was complete with the five children we had. But God knew better. He did not want to leave us without bestowing his grace and mercy on us through Angie and all that she has taught us. He knew we needed the hope and the wonder that would come with caring for her.
We are so grateful. Every. Single. Day. We look forward to sharing Angie's official adoption date with you very, very soon.
As you might imagine, this is a really emotional time for me. We were recently given Angie's DHS file, which included documentation of every hospital admission, every diagnosis, every seizure, near-death experiences, and the recommendation for a DNR order for our precious child. The file included documentation of the fight we waged against the order. I forced myself to read every word and feel all of the feelings. And I cried. But what I realized was this........she has transformed our family. We will never again be the family that existed before Angie.
Because Angie has been in foster care for over eight years, we have had regular appointments in the county courtroom and before the Citizen Review Board. We have had so many people involved in our lives and all have known every detail of Angie's history. Something that Toby and I have heard repeatedly (and strongly disagree with) is that we have "saved her". No. We have not saved her. In fact, the opposite is true. Angie Rae soon-to-be Harris has saved our family. Saved us from becoming complacent and discontent. Saved us from taking our daily lives for granted. And saved us from a life without miracles.
Make no mistake, this child has had miracle after miracle bestowed on her as she has cheated death and overcome extreme challenges. We have become the recipients of God's grace as we have prayed for her to stay with us forever. We are blessed and better for her presence.
Toby and I were not seeking to add another child to our family when Angie came into our home. We thought our family was complete with the five children we had. But God knew better. He did not want to leave us without bestowing his grace and mercy on us through Angie and all that she has taught us. He knew we needed the hope and the wonder that would come with caring for her.
We are so grateful. Every. Single. Day. We look forward to sharing Angie's official adoption date with you very, very soon.
Saturday, November 5, 2016
Adoption is not for Wimps
This adoption stuff is not for wimps. Let me be clear, this is not our first rodeo. We have already completed two successful adoptions. So why does this one feel so different?
Maybe because Angie has been in our home for eight years, six months and 5 days . That is 3105 days. The plan for Angie was changed from foster care to adoption in June 2015 and we were told that the adoption process would take 6-8 months. Seventeen months later we are still striving to get this thing done. Each step of the way we are told by the state that they have a certain amount of time to complete the current task. If it is 30 days, they do it on day 29 or even after. Time after time we have completed the tasks given to us, only to wait months for the state to complete theirs.and then insist that everything is "right on track". I am about ready to drive down to Salem and cause a ruckus~spoken like a true hick from the sticks.
Maybe because Angie has been in our home for eight years, six months and 5 days . That is 3105 days. The plan for Angie was changed from foster care to adoption in June 2015 and we were told that the adoption process would take 6-8 months. Seventeen months later we are still striving to get this thing done. Each step of the way we are told by the state that they have a certain amount of time to complete the current task. If it is 30 days, they do it on day 29 or even after. Time after time we have completed the tasks given to us, only to wait months for the state to complete theirs.and then insist that everything is "right on track". I am about ready to drive down to Salem and cause a ruckus~spoken like a true hick from the sticks.
Angie desperately wants to be adopted and she fully understands what that means. She is done with foster care and so are we. Recently, I was asked to speak to a group of potential foster and adoptive parents about what the experience is like and I had to decline. I have spoken to groups many times over the years, but I just can't do it anymore. How I can recommend becoming involved in a system that causes heartbreak for children and families? I am not just referring to our case, but countless others I am aware of. Children returned to nasty living situations time and time again. Parents given repeated chances to hurt and neglect their children. Children taken from the only parents they have ever known for years to be placed with relatives they have never met. The system is broken.
The holidays and the end of 2016 are ahead. We want so badly to make Angie a Harris forever before 2017. I still have a thread of hope for that, but I am increasingly disillusioned by a system and people who say that permanency is a priority but act as if they have better things to do. Thank you for listening to this rant tonight as I just needed to be heard. Updates to come.....
Friday, October 28, 2016
Busy Girl
It has been a while since I posted, mostly because I am not sure how to put this update into words........everything feels more "normal" for us right now than it has for a long time. I know, that is kind of a weird thing to say but we are just doing the things other families do without thinking,and it feels so good.
Miss Angie is completely rocking her school year. Her brain is in extreme learning mode and her progress just blows me away. Today she did 6 pages of math!!! This week, she began to read and understand plurals, and there is so much more. She has a new awareness of the world around her.
Tonight, I took Angie and a friend to the Fall Carnival at school. I love to attend community events with Angie. She has such a zest for life and she reacts as if every experience is the very best one ever. She reminds me to appreciate the little things. Every. Single. Day.
There is adoption news and I don't want to jinx it but I will say that we will be announcing our finalization date very soon. I hope I did not just jinx it. Oh no!! Let me say this, though.....we will be celebrating with a huge event and I expect every single person who has traveled this journey with us to attend. No exceptions. We wouldn't have it any other way.
Miss Angie is completely rocking her school year. Her brain is in extreme learning mode and her progress just blows me away. Today she did 6 pages of math!!! This week, she began to read and understand plurals, and there is so much more. She has a new awareness of the world around her.
Doing her job at school:
We went to a great pumpkin patch last weekend. Finally, a break in the rain. We had such an amazing day together. Hay rides, kettle corn, pumpkin bowling, shooting pumpkins and apples out of cannons. Again, just "normal" family stuff:
Tonight, I took Angie and a friend to the Fall Carnival at school. I love to attend community events with Angie. She has such a zest for life and she reacts as if every experience is the very best one ever. She reminds me to appreciate the little things. Every. Single. Day.
There is adoption news and I don't want to jinx it but I will say that we will be announcing our finalization date very soon. I hope I did not just jinx it. Oh no!! Let me say this, though.....we will be celebrating with a huge event and I expect every single person who has traveled this journey with us to attend. No exceptions. We wouldn't have it any other way.
Wednesday, October 12, 2016
We had an IEP meeting for Angie today. As I listened to her team's comments and the data that has collected about her progress I was completely overwhelmed. There seems to be no explanation for the explosion of learning that Angie is experiencing. Except, there is:
Angie has a dedicated, creative team of people working with her every single day. They "get" how she learns and they have adjusted their teaching accordingly. It is working. I have said this before but it bears repeating. At the beginning of this school year, six weeks ago, Angie had no consistent sight words. Today, she is READING!!! Color words, number words, high frequency words, nouns, verbs, you name it. She is reading it.
We shared information about the effects of hemispherectomy on education and they listened. The results speak for themselves. And she just continues to surprise us. I am in contact with many parents of children with special needs and I know this is not the norm. Many families struggle to get the services their children need. I want all families to have what is needed because their children deserve it.
I cannot write about Angie's progress without mentioning her sessions of the Anat Baniel Method. I still do not completely understand why it works but I am 100% convinced that it does. She is a different child since starting the ABM treatments. We are planning another series of session for her in early November.
The bottom line is that we are thrilled and amazed with the child that Angie is becoming. She is a mystery and a wonder and she has blessed our lives beyond measure. I can't wait to see her progress continue and to watch her continue to soar......
Angie has a dedicated, creative team of people working with her every single day. They "get" how she learns and they have adjusted their teaching accordingly. It is working. I have said this before but it bears repeating. At the beginning of this school year, six weeks ago, Angie had no consistent sight words. Today, she is READING!!! Color words, number words, high frequency words, nouns, verbs, you name it. She is reading it.
We shared information about the effects of hemispherectomy on education and they listened. The results speak for themselves. And she just continues to surprise us. I am in contact with many parents of children with special needs and I know this is not the norm. Many families struggle to get the services their children need. I want all families to have what is needed because their children deserve it.
I cannot write about Angie's progress without mentioning her sessions of the Anat Baniel Method. I still do not completely understand why it works but I am 100% convinced that it does. She is a different child since starting the ABM treatments. We are planning another series of session for her in early November.
The bottom line is that we are thrilled and amazed with the child that Angie is becoming. She is a mystery and a wonder and she has blessed our lives beyond measure. I can't wait to see her progress continue and to watch her continue to soar......
Friday, September 30, 2016
Breathing
Tonight, I realized how precious Angie's breathing is to me. The fact that she is breathing is no random fact. It is an important reminder of the weight and the depth of her miracle.
So many nights, we sat by her bed in the hospital and listened to machines breathe for her. We stood in the corner of the room while doctors inserted a breathing tube because the seizures wracking her body were ruthless and were stealing her ability to breathe on her own. We prayed that she would breathe on her own again afterwards and we feared that she would not. On more than one occasion, we sat by her side in an ambulance and prayed she would breathe long enough to get to the hospital. At one point we received a phone call asking us to hurry back to the hospital to see Angie before doctors intubated her during a serious illness they feared she would not survive. That time, she did not breathe on her own for 21 days and then she came back to us. Breathing is really important and I think we take it for granted. We don't know not to.
Not anymore. Some of you may have thought the title of the blog, "Life After a Miracle" is a little bit dramatic, but I would argue that it is not. Angie is very much the recipient of a miracle, maybe more than one. How else can we explain the months between the time we were told, "Her next seizure may be her last", and the day she went into surgery without one seizure occurring? When she was having intractable seizures every two to three weeks before that? During those months we were told she could not have surgery due to her bilateral disease. DHS determined that a Do Not Resuscitate order was a better alternative to surgery. Doctors performed test after test to determine if she truly could survive and thrive with only the right hemisphere of her brain. And months went by. A miracle, I tell you. We fought for her life and we won, but it was more than that.
God never wastes a miracle and this one will not be any different. Angie is using her second chance at life to teach the world around her. She is showing us that there is no "impossible" and that no challenge is insurmountable. She models goodness and grace for those around her and she is a living example of what happens when you ignore what people say you can't do. She definitely isn't perfect. She is also stubborn, sassy, and she can swear like a sailor. She is feisty and naughty and she hates math. I wouldn't have it any other way.
Tonight, as I write, she is sleeping beside me and her breathing is music to my ears. I wouldn't trade this miracle for anything. I could listen to it all night long.
So many nights, we sat by her bed in the hospital and listened to machines breathe for her. We stood in the corner of the room while doctors inserted a breathing tube because the seizures wracking her body were ruthless and were stealing her ability to breathe on her own. We prayed that she would breathe on her own again afterwards and we feared that she would not. On more than one occasion, we sat by her side in an ambulance and prayed she would breathe long enough to get to the hospital. At one point we received a phone call asking us to hurry back to the hospital to see Angie before doctors intubated her during a serious illness they feared she would not survive. That time, she did not breathe on her own for 21 days and then she came back to us. Breathing is really important and I think we take it for granted. We don't know not to.
Not anymore. Some of you may have thought the title of the blog, "Life After a Miracle" is a little bit dramatic, but I would argue that it is not. Angie is very much the recipient of a miracle, maybe more than one. How else can we explain the months between the time we were told, "Her next seizure may be her last", and the day she went into surgery without one seizure occurring? When she was having intractable seizures every two to three weeks before that? During those months we were told she could not have surgery due to her bilateral disease. DHS determined that a Do Not Resuscitate order was a better alternative to surgery. Doctors performed test after test to determine if she truly could survive and thrive with only the right hemisphere of her brain. And months went by. A miracle, I tell you. We fought for her life and we won, but it was more than that.
God never wastes a miracle and this one will not be any different. Angie is using her second chance at life to teach the world around her. She is showing us that there is no "impossible" and that no challenge is insurmountable. She models goodness and grace for those around her and she is a living example of what happens when you ignore what people say you can't do. She definitely isn't perfect. She is also stubborn, sassy, and she can swear like a sailor. She is feisty and naughty and she hates math. I wouldn't have it any other way.
Tonight, as I write, she is sleeping beside me and her breathing is music to my ears. I wouldn't trade this miracle for anything. I could listen to it all night long.
Thursday, September 15, 2016
Holding My Breath
I am holding my breath right now. Me and probably many of my fellow parents of children with special needs. We can't help it. We hold our breath for the first few weeks of school because we are afraid our children will struggle. Or worse. Transitions are hard for kids with special needs and the beginning of a new school year can be one of the hardest transitions of all. New teacher, new schedule, new clothes, new classmates, new bus driver......you get it. New=hard.
I have discovered, though, that it might be time to breathe again. Angie has hit the ground running and she is excelling at school. She is learning to read! And the end of the school year last year, she had (maybe) one or two sight words. Angie's brain is absolutely on fire and she is a total rock star! What happened, you wonder? I don't, I know for a fact.
Angie has an outstanding team of people supporting her at school. They have spent hours preparing her program for the year and they truly love her as their own. They are invested. Also, Angie started receiving treatments of the Anat Baniel Method after we heard Anat Baniel speak in Denver in July. She has had two intensive week-long series of sessions and the results are beyond anything we could have imagined. The treatments have truly awakened parts of her brain that she was not activating before. If you do not know about the Anat Baniel Method, please go to her website and read the testimonials and watch the videos (http://www.anatbanielmethod.com). The treatments are effective for a wide variety of special needs. I promise that you will be impressed. We are total believers and we will continue to access the treatments for Angie. If you live near Clatskanie, I encourage you to come to a ABM workshop here on October 25th and you can contact me if you are interested.
But back to Angie........I am considering starting to breathe again. Once again, she has risen above our expectations and has proven her resilience and strength. She is so amazing. I am grateful for the privilege of her presence. Every. Single. Day. I still have so much learn and I have no doubt that she will teach me:)
I have discovered, though, that it might be time to breathe again. Angie has hit the ground running and she is excelling at school. She is learning to read! And the end of the school year last year, she had (maybe) one or two sight words. Angie's brain is absolutely on fire and she is a total rock star! What happened, you wonder? I don't, I know for a fact.
Angie has an outstanding team of people supporting her at school. They have spent hours preparing her program for the year and they truly love her as their own. They are invested. Also, Angie started receiving treatments of the Anat Baniel Method after we heard Anat Baniel speak in Denver in July. She has had two intensive week-long series of sessions and the results are beyond anything we could have imagined. The treatments have truly awakened parts of her brain that she was not activating before. If you do not know about the Anat Baniel Method, please go to her website and read the testimonials and watch the videos (http://www.anatbanielmethod.com). The treatments are effective for a wide variety of special needs. I promise that you will be impressed. We are total believers and we will continue to access the treatments for Angie. If you live near Clatskanie, I encourage you to come to a ABM workshop here on October 25th and you can contact me if you are interested.
But back to Angie........I am considering starting to breathe again. Once again, she has risen above our expectations and has proven her resilience and strength. She is so amazing. I am grateful for the privilege of her presence. Every. Single. Day. I still have so much learn and I have no doubt that she will teach me:)
Saturday, September 10, 2016
After the Waiting
If I could define our parenting of Levi over the past year I would call it Waiting. First, we were waiting to see if moving him home from his group home placement was the right decision (It was not). Next, we were waiting to get supportive services in our home and at school to address his educational and behavioral challenges. Soon after Levi moved home, he became the victim of a crime and was a witness in a long investigation. Although we were promised that the offender would be punished, we are still waiting.
The longest, hardest period of waiting was when we realized Levi needed more supervision and support than we could provide in our family home despite our dedicated efforts. We reached out to the Department of Developmental Disabilities and they moved into action, but there were no placements available, so again we were waiting. During this time, Levi's behaviors became increasingly dangerous and he became involved in the juvenile system. We did not know what the consequences would be for him and again we waited.
Finally, in July, there was an end in sight and we entered the beginning of the end of our waiting. Levi was able to move into a group home in Hillsboro where he can be safe and his needs can be met. It is perfect. The staff is invested in his success and the four other boys in the home are a good match for Levi, unlike his previous placement. So what happens After the Waiting?
After the Waiting, Levi is able to do the activities he loves in an environment that is safe. He is swimming, riding his scooter, playing outside, and THIS:
Levi will be having drum lessons, which has been a long-held dream for him. His confidence is growing as he is in a safe, supportive environment and is experiencing successes on a daily basis. We are able to visit often, talk daily, and to enjoy day trips with Levi. There will be home visits, too, but for now Levi is where he needs to be.
After the Waiting, Levi will start school at Oak Grove Academy in Gales Creek. Levi and I visited the school yesterday and like his new home, it is perfect. There are 30 students in the school and he will be in a classroom of 7 students. The school provides individual programming for children in grades 6-12 who have special needs. I am so excited for him and he was happy to learn that one of his housemates will be in his class. Oak Grove has a highly qualified staff, increased supervision, daily individual and group counseling, and electives like sign language, cooking, and gardening. We love our local school district, but its budget and resources just cannot provide a similar setting.
After the Waiting, we can breathe easier and release the anxiety that waiting brings. Having a family member with Fetal Alcohol Syndrome is stressful and emotionally exhausting and there is healing that needs to occur for all of us. The waiting was hard for Toby and I, but it had to be even harder for Levi. I am a firm believer that FAS (along with Reactive Attachment Disorder, which thankfully Levi DOES NOT have) is the single most awful, heartbreaking, and PREVENTABLE disability in existence. Out of necessity, Josh and Angie have received less than their share of our attention as we have managed the consequences of Levi's disability and that will change. After the Waiting, we can look back and see that everything that happened was part of God's plan for Levi, and for us. He was not one minute late. After the Waiting, we are excited what is next for Levi and for our family.
The longest, hardest period of waiting was when we realized Levi needed more supervision and support than we could provide in our family home despite our dedicated efforts. We reached out to the Department of Developmental Disabilities and they moved into action, but there were no placements available, so again we were waiting. During this time, Levi's behaviors became increasingly dangerous and he became involved in the juvenile system. We did not know what the consequences would be for him and again we waited.
Finally, in July, there was an end in sight and we entered the beginning of the end of our waiting. Levi was able to move into a group home in Hillsboro where he can be safe and his needs can be met. It is perfect. The staff is invested in his success and the four other boys in the home are a good match for Levi, unlike his previous placement. So what happens After the Waiting?
After the Waiting, Levi is able to do the activities he loves in an environment that is safe. He is swimming, riding his scooter, playing outside, and THIS:
Levi will be having drum lessons, which has been a long-held dream for him. His confidence is growing as he is in a safe, supportive environment and is experiencing successes on a daily basis. We are able to visit often, talk daily, and to enjoy day trips with Levi. There will be home visits, too, but for now Levi is where he needs to be.
After the Waiting, Levi will start school at Oak Grove Academy in Gales Creek. Levi and I visited the school yesterday and like his new home, it is perfect. There are 30 students in the school and he will be in a classroom of 7 students. The school provides individual programming for children in grades 6-12 who have special needs. I am so excited for him and he was happy to learn that one of his housemates will be in his class. Oak Grove has a highly qualified staff, increased supervision, daily individual and group counseling, and electives like sign language, cooking, and gardening. We love our local school district, but its budget and resources just cannot provide a similar setting.
After the Waiting, we can breathe easier and release the anxiety that waiting brings. Having a family member with Fetal Alcohol Syndrome is stressful and emotionally exhausting and there is healing that needs to occur for all of us. The waiting was hard for Toby and I, but it had to be even harder for Levi. I am a firm believer that FAS (along with Reactive Attachment Disorder, which thankfully Levi DOES NOT have) is the single most awful, heartbreaking, and PREVENTABLE disability in existence. Out of necessity, Josh and Angie have received less than their share of our attention as we have managed the consequences of Levi's disability and that will change. After the Waiting, we can look back and see that everything that happened was part of God's plan for Levi, and for us. He was not one minute late. After the Waiting, we are excited what is next for Levi and for our family.
Monday, September 5, 2016
Back to School
Our teachers and students begin to go back to school tomorrow. The district operates a staggered-start schedule so Angie and Josh will have their first school days later in the week. Tonight my mind is on the upcoming school year and what it will bring for our family.
The professionals on Angie's IEP team (I think there are about 12!) have spent hours preparing her program for the year. With the wealth of information we gained at the conference this summer, our efforts are refocused. The team has been tireless, researching at home, asking questions and suggesting creative ideas of what might work best for her. We could not ask for a more committed, involved team and we do not take our good fortune for granted for a minute. Angie's education and her safety are in good hands.
So why am I so anxious? I cannot remember if this is normal for me at the beginning of the year or not. I am grateful for all I have learned about the needs of children after hemispherectomy surgery this summer but I also have a new awareness that Angie is not "out of the woods" and she never will be. While the surgery has certainly given her an exceptional quality of life, that could change at any moment. I realize now, that I had become complacent, even cocky, about her condition.
Too many children continue to lose their lives to Sturge-Weber Syndrome and each tragic event is terrifying and heart-wrenching. Many of them had well-controlled seizures before they passed away suddenly. Recently, a child we met at the conference this summer had a serious seizure after over 7 years of freedom from seizures. Another child underwent craniofacial surgery this week after his skull began to collapse. Serious complications can occur even 30 years after surgery. We are never "out of the woods". What was I thinking?
Last night, Angie suffered a fall in her bedroom which resulted in a large knot on the back of her head where she hit her headboard. She was alone when it happened and she does not know how or why she fell. I am fighting myself to not think the worst about her fall-that it could have been precipitated by a seizure. I am making myself crazy, I know. I know.
So now what? I cannot stay here for long or I will make myself crazy. Transitions are always hard for Angie so I am prepared for a tough couple of weeks at the beginning of the school year. She will need extra support. I have to shift my focus to all we have to be thankful for and try to leave my anxiety behind. Gratitude has to be the answer. And I am grateful so grateful, for all of you who help us to celebrate Angie's victories and also support us through the hard days and nights. Grateful for 5 years without a major seizure. Grateful for a child who has taught me to appreciate the miracles around me. Grateful for wonderful people in Angie's life who are committed to loving her and protecting her when we are away. Grateful. So grateful.
The professionals on Angie's IEP team (I think there are about 12!) have spent hours preparing her program for the year. With the wealth of information we gained at the conference this summer, our efforts are refocused. The team has been tireless, researching at home, asking questions and suggesting creative ideas of what might work best for her. We could not ask for a more committed, involved team and we do not take our good fortune for granted for a minute. Angie's education and her safety are in good hands.
So why am I so anxious? I cannot remember if this is normal for me at the beginning of the year or not. I am grateful for all I have learned about the needs of children after hemispherectomy surgery this summer but I also have a new awareness that Angie is not "out of the woods" and she never will be. While the surgery has certainly given her an exceptional quality of life, that could change at any moment. I realize now, that I had become complacent, even cocky, about her condition.
Too many children continue to lose their lives to Sturge-Weber Syndrome and each tragic event is terrifying and heart-wrenching. Many of them had well-controlled seizures before they passed away suddenly. Recently, a child we met at the conference this summer had a serious seizure after over 7 years of freedom from seizures. Another child underwent craniofacial surgery this week after his skull began to collapse. Serious complications can occur even 30 years after surgery. We are never "out of the woods". What was I thinking?
Last night, Angie suffered a fall in her bedroom which resulted in a large knot on the back of her head where she hit her headboard. She was alone when it happened and she does not know how or why she fell. I am fighting myself to not think the worst about her fall-that it could have been precipitated by a seizure. I am making myself crazy, I know. I know.
So now what? I cannot stay here for long or I will make myself crazy. Transitions are always hard for Angie so I am prepared for a tough couple of weeks at the beginning of the school year. She will need extra support. I have to shift my focus to all we have to be thankful for and try to leave my anxiety behind. Gratitude has to be the answer. And I am grateful so grateful, for all of you who help us to celebrate Angie's victories and also support us through the hard days and nights. Grateful for 5 years without a major seizure. Grateful for a child who has taught me to appreciate the miracles around me. Grateful for wonderful people in Angie's life who are committed to loving her and protecting her when we are away. Grateful. So grateful.
Tuesday, August 30, 2016
When You Least Expect It.......
Have you ever been bogged down by doubt, disappointment, regret, and despair? Sometimes life just delivers blow after blow and it feels like it will never end. I don't want to camp out here and the details don't need to be shared, but this has been my family's life this year. We have had it.
But then, when you least expect it, there is more joy than you can possibly contain. Things start to work out and slowly but surely hope is restored. All of a sudden, or maybe bit by bit, you can imagine a day when you smile more than you frown and worry is no longer a constant companion. Sometimes it takes a month and sometimes a year, but joy always comes after the storm, right?
We have found it. There have been large and small developments that have moved us past the disappointment but I would have to say that much of the hope we have found is due to Angie's amazing accomplishments this summer.
I wrote about the TOP Soccer program for children with special needs in a previous post. Angie was thrilled to play soccer for the first time this summer and I would not hesitate to say that the high school soccer players who taught her were equally blessed. Tonight, Angie was able to be introduced as a special guest at the opening high school soccer game. As you can see, she was pretty excited:
Angie started another series of Anat Baniel Method lessons this week and the results are far beyond our expectations. Since her last series about four weeks ago, she has continued to surprise us with new skills and abilities. It is as if the lessons have brought her brain out of a long hibernation and now anything goes. She is using her right arm and hand in new ways almost every single day. But the motor changes are not the only gains she is making. Her cognitive awareness and abilities are growing too. She is naming sight words, using a much larger vocabulary, and interacting with us on a much deeper level. Her provider, Kathy, is amazing and I could watch the sessions all day long........she is that good! And, it doesn't hurt that she and Angie have formed a strong connection to one another. Angie LOVES her time with Kathy!
We have crossed one more hurdle towards finalizing Angie's adoption. This one was frustrating for me as our family's situation had to be presented before a neutral committee so they could decide if we could be officially appointed as Angie's adoptive family. As the date of the meeting approached, we were contacted repeatedly by a DHS caseworker and grilled about facts, figures, and irrelevant information with the premise of "building our case". To be honest, I was offended. Angie has been in our home since the day we picked her up from the hospital over eight years ago and if we have not proven our devotion to her by now we never will. We had already participated in a 3-hour home study months ago. Angie is the heart of our family and facts and figures will never define our relationship. The child welfare system is broken and the resources should instead be used to protect endangered children, not put our family under a microscope. At the end of the day, we were "chosen" and now we can move forward through the remaining bureaucracy to become Angie's forever family.
Angie is set to start second grade next week and I feel that this could be her best year yet. We have so much new information to support her education and she is just blossoming before our eyes. So much joy. I met with her school team to plan her schedule this week and she is one lucky girl to have such a caring, creative team to support her at school. If you are a parent of a child with special needs you know how very uncommon this can be. We do not take it for granted and we are grateful for another reason to hope.
I am grateful for the joy we are discovering and for the end of the dark days, at least for now. The new school year always feels like a new beginning and for us this year it is especially true. There is so much to hope for and the waiting, though hard, is worth it.
But then, when you least expect it, there is more joy than you can possibly contain. Things start to work out and slowly but surely hope is restored. All of a sudden, or maybe bit by bit, you can imagine a day when you smile more than you frown and worry is no longer a constant companion. Sometimes it takes a month and sometimes a year, but joy always comes after the storm, right?
We have found it. There have been large and small developments that have moved us past the disappointment but I would have to say that much of the hope we have found is due to Angie's amazing accomplishments this summer.
I wrote about the TOP Soccer program for children with special needs in a previous post. Angie was thrilled to play soccer for the first time this summer and I would not hesitate to say that the high school soccer players who taught her were equally blessed. Tonight, Angie was able to be introduced as a special guest at the opening high school soccer game. As you can see, she was pretty excited:
Angie started another series of Anat Baniel Method lessons this week and the results are far beyond our expectations. Since her last series about four weeks ago, she has continued to surprise us with new skills and abilities. It is as if the lessons have brought her brain out of a long hibernation and now anything goes. She is using her right arm and hand in new ways almost every single day. But the motor changes are not the only gains she is making. Her cognitive awareness and abilities are growing too. She is naming sight words, using a much larger vocabulary, and interacting with us on a much deeper level. Her provider, Kathy, is amazing and I could watch the sessions all day long........she is that good! And, it doesn't hurt that she and Angie have formed a strong connection to one another. Angie LOVES her time with Kathy!
We have crossed one more hurdle towards finalizing Angie's adoption. This one was frustrating for me as our family's situation had to be presented before a neutral committee so they could decide if we could be officially appointed as Angie's adoptive family. As the date of the meeting approached, we were contacted repeatedly by a DHS caseworker and grilled about facts, figures, and irrelevant information with the premise of "building our case". To be honest, I was offended. Angie has been in our home since the day we picked her up from the hospital over eight years ago and if we have not proven our devotion to her by now we never will. We had already participated in a 3-hour home study months ago. Angie is the heart of our family and facts and figures will never define our relationship. The child welfare system is broken and the resources should instead be used to protect endangered children, not put our family under a microscope. At the end of the day, we were "chosen" and now we can move forward through the remaining bureaucracy to become Angie's forever family.
Angie is set to start second grade next week and I feel that this could be her best year yet. We have so much new information to support her education and she is just blossoming before our eyes. So much joy. I met with her school team to plan her schedule this week and she is one lucky girl to have such a caring, creative team to support her at school. If you are a parent of a child with special needs you know how very uncommon this can be. We do not take it for granted and we are grateful for another reason to hope.
I am grateful for the joy we are discovering and for the end of the dark days, at least for now. The new school year always feels like a new beginning and for us this year it is especially true. There is so much to hope for and the waiting, though hard, is worth it.
Monday, August 15, 2016
The Best Summer
Our girl is having the best summer! When I think back to the child who completed first grade in June, I can hardly believe she is the same person. Angie has grown in so many ways this summer. Since we returned from the conference in Denver, Angie has had a series of lessons in the Anat Baniel Method. This treatment has literally changed our lives. If you are interested in the ABM philosophy and its ability to change the brain in both children and adults, you can check out this link: http://www.anatbanielmethod.com.
Since Angie had her first series of lessons, she has begun to recognize her right arm and hand and her ability to use them. This is so huge! Angie now hugs us with two arms and holds our hand with "Righty". She is beginning to use move her right arm when swimming. None of this was possible before ABM. Besides the motor changes, we are also seeing cognitive growth. Angie is more aware of her environment and she is learning and taking in information at an amazing rate. We are extremely encouraged by these developments and we have scheduled another series of ABM lessons in Portland for the end of this month.
We continue to move through the adoption process, as one might walk through frozen quicksand. If it were up to us, Angie would have been adopted forever ago, but most (ALL) of the process is out of our hands. Next week, her case will be presented before an adoption committee who will decide if we should be chosen as her adoptive parents. Don't even get me started! If she was not meant to be with us after eight years in our home, someone messed up a long time ago by leaving her there. God must have thought I needed to practice my patience, but we will get there eventually and it will be worth every minute of waiting.
Last weekend, Angie spent time with Kirsten and Jordan. She went to the zoo, played at a splash pad, and shopped at the Saturday Market. Toby and I enjoyed a rare weekend with NO CHILDREN at home. We are so blessed to have adult children who embrace Angie and love her as if she were their own. She thrives on spending time with them and I think she appreciates the break from her "boring" mother. I am proud of the empathy and compassion my children have, not only for Angie, but for anyone who experiences challenges or is in need. They are exceptional people and are better for having Angie in their lives. I would dare to say that about everyone who knows Angie.
We will meet with Angie's school team soon to plan her program for this year. Angie has a great team who is anxious to help her any way they can. I am hopeful that this will be one of her best years yet, and again I am grateful. We could not ask for a more responsive, creative team of people to care for and to support Angie at school. God has provided for all of her needs, in every way, every single day. Who could ask for more?
Friday, August 5, 2016
One Week
One week. So much can change. I do not want to make this post about sadness, but about hope, and about a family that loves their child so much that they would do anything for him.
Early this Spring, Levi's behaviors began to escalate. Because of his diagnosis, he is prone to making poor, even dangerous, decisions due to his lack of impulse control. He is unable to predict the consequences of his actions or to plan what he would do in an emergency and he is vulnerable to victimization. At age 14, his challenges are not new but the consequences that can occur are much more serious than when he was 5 or 6. Despite his caring, compassionate nature and eagerness to please, his behaviors began to put him, and possibly others, in danger.
When we realized that our home, the community, and Levi's school were no longer a safe environment for Levi, we worked with our disability services provider to make a plan for him to move to a group home. We agonized, denied and justified for months before acknowledging this was the best option for Levi. We explored all options and we accessed every service available to try to keep him at home, having multiple providers in our home each week. A family does not and cannot come to such a decision without serious turmoil.
Now, though, we have hope. We declined the first placement that was offered for Levi because the home was not a good fit for his needs. Three weeks later we learned of another placement option and everything we heard sounded perfect for Levi. Levi was prepared for the move and he was included in the planning, but it still came up very quickly and they were ready for him to come within a week. Last Thursday, Levi moved to what will be his home for now in Washington County.
It is hard to put my feelings into words as we adjust to a new normal at home, but it is not my feelings that are important, it is Levi. He has been offered an opportunity to learn and grow in an environment that is safe for him. He will attend school in a large district with the resources to meet his needs. Levi has become active in the community and he has daily opportunities to learn important life skills. He has new friends with common interests. He is already thriving.
Levi is our son today as much as he was last Thursday. We will have home visits, family vacations, phone calls and date nights to keep him close. We will cheer for his victories and will support him in his new interests. This is not the end of our story as a family, it is just the beginning.
Early this Spring, Levi's behaviors began to escalate. Because of his diagnosis, he is prone to making poor, even dangerous, decisions due to his lack of impulse control. He is unable to predict the consequences of his actions or to plan what he would do in an emergency and he is vulnerable to victimization. At age 14, his challenges are not new but the consequences that can occur are much more serious than when he was 5 or 6. Despite his caring, compassionate nature and eagerness to please, his behaviors began to put him, and possibly others, in danger.
When we realized that our home, the community, and Levi's school were no longer a safe environment for Levi, we worked with our disability services provider to make a plan for him to move to a group home. We agonized, denied and justified for months before acknowledging this was the best option for Levi. We explored all options and we accessed every service available to try to keep him at home, having multiple providers in our home each week. A family does not and cannot come to such a decision without serious turmoil.
Now, though, we have hope. We declined the first placement that was offered for Levi because the home was not a good fit for his needs. Three weeks later we learned of another placement option and everything we heard sounded perfect for Levi. Levi was prepared for the move and he was included in the planning, but it still came up very quickly and they were ready for him to come within a week. Last Thursday, Levi moved to what will be his home for now in Washington County.
It is hard to put my feelings into words as we adjust to a new normal at home, but it is not my feelings that are important, it is Levi. He has been offered an opportunity to learn and grow in an environment that is safe for him. He will attend school in a large district with the resources to meet his needs. Levi has become active in the community and he has daily opportunities to learn important life skills. He has new friends with common interests. He is already thriving.
Levi is our son today as much as he was last Thursday. We will have home visits, family vacations, phone calls and date nights to keep him close. We will cheer for his victories and will support him in his new interests. This is not the end of our story as a family, it is just the beginning.
Sunday, July 31, 2016
Making New Connections
After the International Hemispherectomy Conference, affectionately known as HEMICON, I was determined to find a practitioner to perform the Anat Baniel Method of learning for Angie. Anat Baniel herself was the keynote speaker at the conference and her presentation gave me hope that Angie could continue to make enormous progress by making new connections in her brain. We met families whose children participate in ABM and their stories were full of hope and promise. The videos of the children's movements were remarkable and I knew I wanted this for Angie.
ABM is based on the theory that, "The brains of infants and children are extremely changeable needing to form all the brain patterns associated with voluntary action. Their brains are constantly expanding and mapping new territory." The method accesses the remarkable capacity of the human brain to form new connections and new patterns, and reach levels of performance never achieved before. After reading and believing that brain structures become fixed and cannot change after early childhood this is the best news ever. Brains can change at ANY age! Who knew?
We found Kathy, who practices ABM in Portland, and last week Angie had a series of 6 lessons, sometimes two in one day. It is hard to describe all of the changes we are observing because some are very subtle. These subtle changes will build into new experiences and abilities and we continue to facilitate Angie's learning. After her third lesson with Kathy, Angie and I were walking to our car and she said, "Mom, Righty wants to hold your hand". Stunned, I reached out and she held my hand with Righty. This was the first time EVER that she has moved the fingers on her right hand independently. Now this, was HUGE!!!
We are so excited to see the changes that will keep coming as we carry over what we have learned about ABM. Angie will have another series of sessions in 4-6 weeks and we cannot wait to see her victories. We are so thankful for Kathy and her patience and knowledge. This has been a huge game-changer for Angie, and for us.
Making New Connections
After the International Hemispherectomy Conference, affectionately known as HEMICON, I was determined to find a practitioner to perform the Anat Baniel Method of learning for Angie. Anat Baniel herself was the keynote speaker at the conference and her presentation gave me hope that Angie could continue to make enormous progress by making new connections in her brain. We met families whose children participate in ABM and their stories were full of hope and promise. The videos of the children's movements were remarkable and I knew I wanted this for Angie.
ABM is based on the theory that, "The brains of infants and children are extremely changeable needing to form all the brain patterns associated with voluntary action. Their brains are constantly expanding and mapping new territory." The method accesses the remarkable capacity of the human brain to form new connections and new patterns, and reach levels of performance never achieved before. After reading and believing that brain structures become fixed and cannot change after early childhood this is the best news ever. Brains can change at ANY age! Who knew?
We found Kathy, who practices ABM in Portland, and last week Angie had a series of 6 lessons, sometimes two in one day. It is hard to describe all of the changes we are observing because some are very subtle. These subtle changes will build into new experiences and abilities and we continue to facilitate Angie's learning. After her third lesson with Kathy, Angie and I were walking to our car and she said, "Mom, Righty wants to hold your hand". Stunned, I reached out and she held my hand with Righty. This was the first time EVER that she has moved the fingers on her right hand independently. Now this, was HUGE!!!
We are so excited to see the changes that will keep coming as we carry over what we have learned about ABM. Angie will have another series of sessions in 4-6 weeks and we cannot wait to see her victories. We are so thankful for Kathy and her patience and knowledge. This has been a huge game-changer for Angie, and for us.
Tuesday, July 12, 2016
HEMICON 2016
We have just returned from Hemicon 2016, also known as the International Hemispherectomy Conference. Toby, Angie and I traveled to Denver for what will be one of the most memorable trips of our lives. This was Angie's first airplane trip and she was truly entertaining to watch and listen as we took off for the first time. Her squeals were heard throughout the airplane and our fellow passengers could not help but smile.
As we planned to attend the conference, Toby and I were excited for Angie to meet other children who have had "her surgery" as she calls it. We were not disappointed as she boldly approached others, peers and parents alike, and introduced herself the entire time we were there. Soon after we arrived, we met Levon and his parents and the two kids were inseparable for 3 days straight. Aren't they cute?
I prepared myself to feel emotional in the presence of the strong, courageous, ferocious parents whose children have overcome overwhelming odds. And I did. A few tears were shed as I realized something: We all knew the same thing. Small accomplishments are actually huge victories and our kids can do anything they set their minds to. We have all cheated death and have come out realizing how precious and valuable our children's lives are; something we do not forget in the midst of the battles we face on a regular basis. I have found my people. Oh, and Angie caught Toby and I having fun and snapped this picture:
Many of the families have known each other for years but it did not matter. They embraced us just the same and we became members of a club we never asked to join but now would not trade for a million dollars. We shared stories of trials and victories and knew that we were understood. Interestingly, though, we were not sad. There was a collective culture of gratitude, acceptance of our situation, and pure joy. I have always recognized that Angie's resilience and acceptance of her condition are unique but now I wonder.........what is it that makes our children so brave?
For the first time, we met other families whose children are diagnosed with Sturge-Weber Syndrome. All of the children were younger than Angie and were were grateful to be able to share her positive experience since surgery and her many accomplishments over the past five years. We made connections that will last and hopefully grow over the years. I can't wait to see their children thrive and grow like our Angie.
I came home with a long to-do list. Therapies to research and schedule, new testing to arrange, and activities to explore. I am thankful for the team who organized the conference and the top-notch presenters that attended. Each one is a dedicated parent of a child with special needs who spent countless hours to plan and make sure our experience was the very best. You are all my heroes and I cannot wait to attend again next year!
As we planned to attend the conference, Toby and I were excited for Angie to meet other children who have had "her surgery" as she calls it. We were not disappointed as she boldly approached others, peers and parents alike, and introduced herself the entire time we were there. Soon after we arrived, we met Levon and his parents and the two kids were inseparable for 3 days straight. Aren't they cute?
I prepared myself to feel emotional in the presence of the strong, courageous, ferocious parents whose children have overcome overwhelming odds. And I did. A few tears were shed as I realized something: We all knew the same thing. Small accomplishments are actually huge victories and our kids can do anything they set their minds to. We have all cheated death and have come out realizing how precious and valuable our children's lives are; something we do not forget in the midst of the battles we face on a regular basis. I have found my people. Oh, and Angie caught Toby and I having fun and snapped this picture:
Many of the families have known each other for years but it did not matter. They embraced us just the same and we became members of a club we never asked to join but now would not trade for a million dollars. We shared stories of trials and victories and knew that we were understood. Interestingly, though, we were not sad. There was a collective culture of gratitude, acceptance of our situation, and pure joy. I have always recognized that Angie's resilience and acceptance of her condition are unique but now I wonder.........what is it that makes our children so brave?
For the first time, we met other families whose children are diagnosed with Sturge-Weber Syndrome. All of the children were younger than Angie and were were grateful to be able to share her positive experience since surgery and her many accomplishments over the past five years. We made connections that will last and hopefully grow over the years. I can't wait to see their children thrive and grow like our Angie.
I came home with a long to-do list. Therapies to research and schedule, new testing to arrange, and activities to explore. I am thankful for the team who organized the conference and the top-notch presenters that attended. Each one is a dedicated parent of a child with special needs who spent countless hours to plan and make sure our experience was the very best. You are all my heroes and I cannot wait to attend again next year!
Wednesday, June 29, 2016
Summer
This is how our summer is going so far:
Miss Angie is swimming almost every single day, sometimes twice a day. She is taking lessons and her progress is amazing. I am so impressed by the instructors at our pool. They are patient and kind and always make sure she understands what they are working on. It is the highlight of my day to watch her lessons after my day at work.
Toby and I celebrated our 29th wedding anniversary this week. Our good friends, Jeff and Heather offered to come to Clatskanie to stay with the kids so we could get away for the weekend. There are few people that we would/could leave in charge of our crazy household and Jeff and Heather are on the short list. We were so grateful for our weekend, which we spent in Oregon wine country in the sunshine.
Yesterday we attended a permanency hearing for Angie's DHS case. We have struggled with our relationship with the agency due to poor communication and frustration on our part. At the hearing, we did not share the DHS perspective that Angie's adoption is "on time" when we are 13 months into a process we were told would take 6-8 months. I am extremely proud of Toby for his request for specific dates when the remaining steps would be completed, even though we did not receive concrete answers. It is disheartening to feel powerless in a process that means so much to us. We believe that we are approximately 3 months away from becoming Angie's forever family on paper. Almost time to start planning the gigantic celebration that will follow the finalization of her adoption!
Next week, Toby, Angie, and I will travel to Denver for the International Hemispherectomy Conference. We are excited for Angie to spend time at a day camp with other children who have experienced the same dramatic brain surgery. Toby and I are looking forward to hearing the presenters speak about what we might expect going forward and how we can help Angie reach her full potential. I fully expect the experience to be life-changing for all of us. And again, we have someone special, our daughter Jordan, who is willing to hold down the fort at home.
There is a theme here, as I write. We are surrounded by special friends and family who are willing to come into the trenches with us to support our family. Please know that we see what you do and are grateful for every one of you. Your messages of support and prayers, gifts of time, and even brief "check-ins" to see how we are doing mean more than you know. We are strong because of the team of people by our side and we do not question that for a moment. Words are not enough to thank you.
Miss Angie is swimming almost every single day, sometimes twice a day. She is taking lessons and her progress is amazing. I am so impressed by the instructors at our pool. They are patient and kind and always make sure she understands what they are working on. It is the highlight of my day to watch her lessons after my day at work.
Toby and I celebrated our 29th wedding anniversary this week. Our good friends, Jeff and Heather offered to come to Clatskanie to stay with the kids so we could get away for the weekend. There are few people that we would/could leave in charge of our crazy household and Jeff and Heather are on the short list. We were so grateful for our weekend, which we spent in Oregon wine country in the sunshine.
Yesterday we attended a permanency hearing for Angie's DHS case. We have struggled with our relationship with the agency due to poor communication and frustration on our part. At the hearing, we did not share the DHS perspective that Angie's adoption is "on time" when we are 13 months into a process we were told would take 6-8 months. I am extremely proud of Toby for his request for specific dates when the remaining steps would be completed, even though we did not receive concrete answers. It is disheartening to feel powerless in a process that means so much to us. We believe that we are approximately 3 months away from becoming Angie's forever family on paper. Almost time to start planning the gigantic celebration that will follow the finalization of her adoption!
Next week, Toby, Angie, and I will travel to Denver for the International Hemispherectomy Conference. We are excited for Angie to spend time at a day camp with other children who have experienced the same dramatic brain surgery. Toby and I are looking forward to hearing the presenters speak about what we might expect going forward and how we can help Angie reach her full potential. I fully expect the experience to be life-changing for all of us. And again, we have someone special, our daughter Jordan, who is willing to hold down the fort at home.
There is a theme here, as I write. We are surrounded by special friends and family who are willing to come into the trenches with us to support our family. Please know that we see what you do and are grateful for every one of you. Your messages of support and prayers, gifts of time, and even brief "check-ins" to see how we are doing mean more than you know. We are strong because of the team of people by our side and we do not question that for a moment. Words are not enough to thank you.
Tuesday, June 21, 2016
Thank you for your prayers, my friends. After my last post I received multiple messages with kind words, offers of prayers, a coffee card, meals, and flowers. I never intended my story to make you feel you had to do for me. I was holding true to my original commitment that this blog would be real. But know that I am grateful. Your kindness has been a true gift.
We are plugging along and our strength comes largely from this girl:
Because of Angie, our days are filled with "I love you", "You are precious" and "I am so lucky". Who can stay in a mood with all of that positive going on? She embraces life with all she has got and she reminds me of all that is good.
Angie has become a pool rat since summer started. She asks to go swimming every single day. This week she started lessons and she is having a blast! I am surprised and thrilled at how free she is in the pool, unencumbered by the challenges she experiences on dry land. She is amazing! And so happy........
Toby, Angie and I will be leaving for Denver in about two weeks. We are traveling to the International Hemispherectomy Conference where Angie will attend day camp with other children who have experienced hemispherectomy surgery. While she is there, Toby and I will attend conference sessions about what we might expect moving forward and how we can best help Angie to reach her full potential. We are extremely excited and I have no doubt that even among others with similar histories, our girl will shine. She is so anxious for her first airplane trip. We will make friends that we will have for a lifetime, who truly know what it feels like to walk in our shoes.
We have been asked about Angie's adoption. It is still happening, although MUCH slower than we expected. We will go to court again next week and we expect to hear the same story as last time. DHS is overwhelmed, understaffed, and trying as hard as they can. We are tired, and so is Angie. She wants to be a Harris. For now, though, she is loved and safe. Some day she will be a legal member of our family and when that day comes, we will celebrate like crazy. I can't wait.
We have so much to be grateful for. Than you for reminding me with your kindness. We have been surrounded by love when we need it most. That is what life is all about, right? Showing up when someone is down and paying it forward. I can't wait until I can do the same for you.
We are plugging along and our strength comes largely from this girl:
Because of Angie, our days are filled with "I love you", "You are precious" and "I am so lucky". Who can stay in a mood with all of that positive going on? She embraces life with all she has got and she reminds me of all that is good.
Angie has become a pool rat since summer started. She asks to go swimming every single day. This week she started lessons and she is having a blast! I am surprised and thrilled at how free she is in the pool, unencumbered by the challenges she experiences on dry land. She is amazing! And so happy........
We have been asked about Angie's adoption. It is still happening, although MUCH slower than we expected. We will go to court again next week and we expect to hear the same story as last time. DHS is overwhelmed, understaffed, and trying as hard as they can. We are tired, and so is Angie. She wants to be a Harris. For now, though, she is loved and safe. Some day she will be a legal member of our family and when that day comes, we will celebrate like crazy. I can't wait.
We have so much to be grateful for. Than you for reminding me with your kindness. We have been surrounded by love when we need it most. That is what life is all about, right? Showing up when someone is down and paying it forward. I can't wait until I can do the same for you.
Saturday, May 21, 2016
A Tough One
This is going to be a tough one. I have avoided writing for the past couple of weeks because I have not wanted to spread my negativity to others. It is mine. Today, though, I realized I am not being true to my original commitment to be real and honest. So, here it goes......
First, Miss Angie is amazing. She is healthy and thriving and everyday with her is a gift. She had a sleepover with some of her favorite people, went to a band concert where she tells me she danced during the concert, and she is excited to start swimming lessons, which she tells me EVERY SINGLE DAY. She is doing "normal" like only she can. In fact, I think she is the strongest one in the family right now.
We have learned that Baby Ezra has West Syndrome, which doctors identify as "catastrophic childhood epilepsy". It is a lifelong disability causing permanent developmental delays. Some other test results are still pending, but this is what we know so far. Ezra is at home again now and he is receiving strong steroid treatments for the seizures. The treatment cost is an astronomical $2000/day. Don't even get me started on how I feel about drug manufacturers and insurance companies. Actually, the drug company has a program to pay the patient co-pays for the medication and Ezra's insurance company won't accept their payment. So many challenges ahead for little Ezra and his parents.....
Then there is Levi. I have been particularly quiet on this subject. Now, I am going to share with the hope that others will be educated and may be able to pay it forward to someone else who needs support and understanding. Levi has Alcohol Related Neurodevelopment Disorder, commonly known as Fetal Alcohol Syndrome. His biological mother used opiates, methamphetamine, barbiturates, and marijuana during her pregnancy as well. Levi's brain is severely and permanently damaged and his condition was 100% preventable. He was not given a choice. I could go into great detail about ARND and FAS but I will just share the basics:
First, Miss Angie is amazing. She is healthy and thriving and everyday with her is a gift. She had a sleepover with some of her favorite people, went to a band concert where she tells me she danced during the concert, and she is excited to start swimming lessons, which she tells me EVERY SINGLE DAY. She is doing "normal" like only she can. In fact, I think she is the strongest one in the family right now.
We have learned that Baby Ezra has West Syndrome, which doctors identify as "catastrophic childhood epilepsy". It is a lifelong disability causing permanent developmental delays. Some other test results are still pending, but this is what we know so far. Ezra is at home again now and he is receiving strong steroid treatments for the seizures. The treatment cost is an astronomical $2000/day. Don't even get me started on how I feel about drug manufacturers and insurance companies. Actually, the drug company has a program to pay the patient co-pays for the medication and Ezra's insurance company won't accept their payment. So many challenges ahead for little Ezra and his parents.....
Then there is Levi. I have been particularly quiet on this subject. Now, I am going to share with the hope that others will be educated and may be able to pay it forward to someone else who needs support and understanding. Levi has Alcohol Related Neurodevelopment Disorder, commonly known as Fetal Alcohol Syndrome. His biological mother used opiates, methamphetamine, barbiturates, and marijuana during her pregnancy as well. Levi's brain is severely and permanently damaged and his condition was 100% preventable. He was not given a choice. I could go into great detail about ARND and FAS but I will just share the basics:
Brain and central nervous system problems
Problems with the brain and central nervous system may include:
- Poor coordination or balance
- Intellectual disability, learning disorders and delayed development
- Poor memory
- Trouble with attention and with processing information
- Difficulty with reasoning and problem-solving
- Difficulty identifying consequences of choices
- Poor judgment skills
- Jitteriness or hyperactivity
- Rapidly changing moods
Social and behavioral issues
Problems in functioning, coping and interacting with others may include:
- Difficulty in school
- Trouble getting along with others
- Poor social skills
- Trouble adapting to change or switching from one task to another
- Problems with behavior and impulse control
- Poor concept of time
- Problems staying on task
- Difficulty planning or working toward a goal
Levi has every single one of these symptoms and some that are not listed. Just one more fact: Alcohol use is far more damaging on the developing brain than drug use.
If you know our family, you know that Levi has received a variety of treatments for his conditions since birth, including several out-of-home placements. In early April, we realized that we needed another secure placement for him when he started exhibiting risky behaviors, such as leaving home and school for hours at a time. Children with drug and alcohol exposure are particularly vulnerable to becoming victims due to their poor reasoning skills and inability to sense danger or predict consequences. Levi's social and emotional functioning level is at age 6 or 7. We were terrified for his safety.
Unfortunately, the Department of Developmental Disabilities could not find a placement this time. Levi became #16 on the waitlist and we were told placement might happen in about 6 months. In late April, we begged for a "crisis placement" which is supposed to take 24-48 hours and we were again turned away. We sought help at a children's hospital and with law enforcement-still nothing.
Last Friday, our worst fears were realized. Levi was playing with matches in the school bathroom and he started a fire in the garbage can. He was interviewed for over 2 hours, arrested and taken to the juvenile detention facility for 4 days. I am not ready to write about that particular experience yet, but I will tell you this-it was devastating. Levi is charged with three misdemeanor crimes and he is now involved in the juvenile justice system. The school IEP team has determined that his behavior was a manifestation of his disability and he will not be expelled but we have chosen for him not return to school this year. The legal process will take time and Levi will be held accountable for his actions. So, indirectly, will Toby and I. Toby is currently unable to work and is at home with Levi, who is under house arrest. Levi is very, very sorry and regrets his actions, which is often not the case for children with FAS.
I know this is getting long, but I share it in detail to try to facilitate understanding. The situation is so complicated. Toby and I do not believe that Levi should be relieved of responsibility for his behavior, but we do believe his disability should be considered and we believe it will be. Our family has been treated with respect by school staff and by the juvenile case manager and they have educated themselves about Levi and his disability. We are overwhelmed by sadness and feel that Levi, and our family, was let down by the systems that are supposed to support and protect children with disabilities.
Please share our truth when you hear people gossiping about Levi. We live in a small town and we know people are talking. Please think of Josh and how this affects him when you consider telling our story. Please pray for Levi as we continue to advocate for a placement for him where his needs can be met. I appreciate being able to tell our story and be heard. Thank you to all who have already reached out to support our family. It means more than you know.
Sunday, May 8, 2016
Mother's Day
I feel like someone punched me in the stomach today. It was not the Mother's Day I had imagined. Oh, there were many sweet moments and my husband and children showered me with love and attention. Toby made me the farm table I have been dreaming about for Mother's Day and this is what it looked like today:
I am truly in love with this table and I think I will be spending all my waking hours here this summer. It is perfect.
Kirsten and Ezra stayed over last night so they could go to church with us this morning. As we were getting settled at church, I held Ezra while Kirsten found a place to put his car seat. Then the unthinkable happened.......Ezra began to have a series of small seizures as I held him. Panic set in on Kirsten's face and I began to have flashbacks to the body-wracking seizures that we watched in Angie too many times. We are fortunate to have a very calm, clear-headed EMT in our congregation and he came over and reassured Kirsten that his condition did not appear life-threatening. Kirsten called her pediatrician, who suggested that she take him to the hospital to be evaluated.
I wish I could tell you what caused Ezra's seizures. but as so often is the case, the doctors do not know. Kirsten left the hospital without any answers and she is now at home feeling frustrated and overwhelmed. I can tell you with a fair amount of certainty how she is feeling, because I have walked in her shoes. She is terrified to walk out of the room for a minute in case the seizures return. She is fearful that the cause of the episodes is the worst imaginable condition. She worries that he will suffer seizures while she sleeps. And so much more.
I am a firm believer that God plans our lives so that our past experiences teach us lessons that we can use in our future. Once we learn, we will be given opportunities to help someone else in similar circumstances. This is the circle of life. But, I want to decline. I don't wish seizures on another family, but please God, do not give me this opportunity with this baby. Keep him healthy instead. I am terrified for Kirsten and would do anything to take away her pain and uncertainty. But that is not God's plan in our lives. He has something else in mind.
I am grateful I was there with Kirsten today. God is so good. He did not allow this incident to happen when she was alone. She is strong and brave and she loves her son powerfully. She is an amazing mother. I am unable to decline the opportunity. We will weather this storm together, and probably many more as we raise our families. I am her mother after all, and I am here for the long haul.
Saturday, May 7, 2016
Eight Years
Eight years. That is how long we have had the privilege of parenting Miss Angie. Seven years since she started having life-threatening seizures and six years since we were told there was no hope for her future and that the State of Oregon preferred that doctors stop trying to save her life. Five years since we fought for the right to pursue treatment anyway and four years since she had the brain surgery that saved and changed her life. And ours.
I am not the same person I was eight years ago. Not even close. I don't even know that person anymore. Eight years ago, I did not know how to fight for my child's life like it was my own. I did not know that doctors are not always right, and caseworkers very often are quite wrong. I trusted professionals to know everything and did not trust my ability to make hard decisions for the best interest of my child. I did not know the hope that comes from witnessing miracles performed through a child's life over and over again. I did not know that a child could defy all odds and become an individual who inspires every person she meets.
I don't want that person back. I am grateful for the lessons I have learned on this journey every single day. I can see God's hand in every trial we experienced and looking back I can see what He has taught me through the difficult days and nights. I am so thankful.
Angie has a very unique and definite purpose in this World. I believe it is to bring hope to the hopeless. She is meant to teach us that adversity does not mean defeat, it just means we have to try harder. She is here to model perseverance and courage, humor and strength.
I am so thankful for Angie. She keeps me from getting too serious and uptight and she makes me laugh every single day. I am grateful for the 2,917 days I have had her in my life and in my heart. Happy Birthday, Angie Rae, you have changed my life for the better and I love you to the moon and back!
I am not the same person I was eight years ago. Not even close. I don't even know that person anymore. Eight years ago, I did not know how to fight for my child's life like it was my own. I did not know that doctors are not always right, and caseworkers very often are quite wrong. I trusted professionals to know everything and did not trust my ability to make hard decisions for the best interest of my child. I did not know the hope that comes from witnessing miracles performed through a child's life over and over again. I did not know that a child could defy all odds and become an individual who inspires every person she meets.
I don't want that person back. I am grateful for the lessons I have learned on this journey every single day. I can see God's hand in every trial we experienced and looking back I can see what He has taught me through the difficult days and nights. I am so thankful.
Angie has a very unique and definite purpose in this World. I believe it is to bring hope to the hopeless. She is meant to teach us that adversity does not mean defeat, it just means we have to try harder. She is here to model perseverance and courage, humor and strength.
I am so thankful for Angie. She keeps me from getting too serious and uptight and she makes me laugh every single day. I am grateful for the 2,917 days I have had her in my life and in my heart. Happy Birthday, Angie Rae, you have changed my life for the better and I love you to the moon and back!
Thursday, April 28, 2016
Hard Days
Today was one of those hard days. If you are a parent of a child with special needs, or maybe just a parent period, you know the ones I mean. The days when you sit across the desk from a professional and he or she tells you what your child is unable to do, and may always be unable to do. What other kids her age can do. What you MUST do to help your child, although the results will be uncertain. They almost always throw in a couple of strengths first, but those you already know and you could have written the list yourself-and the list would have been far longer if you had.
The professional is just doing his or her job. Most of the them are really good at it and between appointments you can readily recognize their expertise. But, today, in the moment, I was not thinking, "How amazing that this person went to school for 12+ years and has studied hundreds or thousands of children before mine". "How magnificent that she works for a renowned children's hospital." No. Today, I was sad. Not surprised, angry, in denial, or suspicious. Just sad.
No one wants to hear that your child's IQ is much lower than you were originally told. After all, the IQ is the Gold Standard of human value, right? Or, that the gap is widening between your child and her peers and you and the school are not meeting her needs. Who wakes up in the morning thinking, "I hope today I will learn that my child needs far more than I have been providing". At least by someone's self-determined standards. No one.
You know what, though? At the end of the day, I will accept feeling sad. Because along with the sad, I am grateful, joyful, privileged, and proud. I have a child in my home and my life that was not supposed to live. I will be sad today but tomorrow is a new day. Tomorrow, I will have hope that Miss Angie has already overcome huge obstacles and I believe she will continue to do so every day she is on the Earth. This child has a purpose and she is going to fulfill it, regardless of the predictions of professionals.
Don't get me wrong. I am thankful for the professionals to give me a summary of Angie's skills and abilities. The same summary will tell them how far she has come when she has her next assessment. Miss Angie Rae (Grover) Harris will not be kept down by one assessment. She is powered by her own steam . Tomorrow is a new day and she will amaze us all. Hard day, please take notice. You are not the boss of us.
The professional is just doing his or her job. Most of the them are really good at it and between appointments you can readily recognize their expertise. But, today, in the moment, I was not thinking, "How amazing that this person went to school for 12+ years and has studied hundreds or thousands of children before mine". "How magnificent that she works for a renowned children's hospital." No. Today, I was sad. Not surprised, angry, in denial, or suspicious. Just sad.
No one wants to hear that your child's IQ is much lower than you were originally told. After all, the IQ is the Gold Standard of human value, right? Or, that the gap is widening between your child and her peers and you and the school are not meeting her needs. Who wakes up in the morning thinking, "I hope today I will learn that my child needs far more than I have been providing". At least by someone's self-determined standards. No one.
You know what, though? At the end of the day, I will accept feeling sad. Because along with the sad, I am grateful, joyful, privileged, and proud. I have a child in my home and my life that was not supposed to live. I will be sad today but tomorrow is a new day. Tomorrow, I will have hope that Miss Angie has already overcome huge obstacles and I believe she will continue to do so every day she is on the Earth. This child has a purpose and she is going to fulfill it, regardless of the predictions of professionals.
Don't get me wrong. I am thankful for the professionals to give me a summary of Angie's skills and abilities. The same summary will tell them how far she has come when she has her next assessment. Miss Angie Rae (Grover) Harris will not be kept down by one assessment. She is powered by her own steam . Tomorrow is a new day and she will amaze us all. Hard day, please take notice. You are not the boss of us.
Monday, April 18, 2016
Getting Real and Honest
The last time I wrote we had just returned home from the hospital. Angie's pneumonia lasted for 15 days!!! She returned to school for the first time today and tonight she is completely exhausted. This was a really long, scary illness.
It took me back to the days where we did not turn a calendar page without a hospital admission. I was reminded that we have not escaped danger, we have just entered a phase with nice long breaks between episodes of scary. This time, we won. And yet......
I have to be honest. I scroll by most of the posts about your children's accomplishments. Don't get me wrong, I am happy for you and I don't believe for a minute that you should not share your joy on Facebook or Instagram. But it hurts. It is hard for me to see the pictures of farm ball games, ballet recitals, spelling bees, play dates, and family outings to the rock-climbing facility. That is not and will not be our life. Please do not un-friend me. I can handle it and I do enjoy seeing your kids shine.
Angie is able to do so much more than we ever imagined. Still, she is not able to do most of the sports and activities enjoyed by other All-American children. She is not invited for play dates and she does not look forward to slumber parties or sleepovers.
Being a parent of a child with special needs is emotionally exhausting and we have two of them. Angie's medical concerns are sometimes dwarfed by the very different, but also huge, challenges that Levi experiences. We regularly field calls from the school and must be prepared to head over there for meetings about the latest crisis. We are threatened and insulted during fits of anger. We are fiercely aware of the need to protect the rest of the family from harm. We dread the day that our child could inadvertently hurt someone without meaning to. We are tired.
We chose this life, knowing that it could wear us down. Please don't mistake my words for regret. We did not walk blindly into a life that causes us to stay awake at night fretting about our children's futures. But, wouldn't it be nice if we had a magic wand to wave all of the ugly away?
Please keep posting about your children. There is hope in knowing that our community is thriving. I love to see the evidence and your children are amazing. Thank you for sharing them with me.
It took me back to the days where we did not turn a calendar page without a hospital admission. I was reminded that we have not escaped danger, we have just entered a phase with nice long breaks between episodes of scary. This time, we won. And yet......
I have to be honest. I scroll by most of the posts about your children's accomplishments. Don't get me wrong, I am happy for you and I don't believe for a minute that you should not share your joy on Facebook or Instagram. But it hurts. It is hard for me to see the pictures of farm ball games, ballet recitals, spelling bees, play dates, and family outings to the rock-climbing facility. That is not and will not be our life. Please do not un-friend me. I can handle it and I do enjoy seeing your kids shine.
Angie is able to do so much more than we ever imagined. Still, she is not able to do most of the sports and activities enjoyed by other All-American children. She is not invited for play dates and she does not look forward to slumber parties or sleepovers.
Being a parent of a child with special needs is emotionally exhausting and we have two of them. Angie's medical concerns are sometimes dwarfed by the very different, but also huge, challenges that Levi experiences. We regularly field calls from the school and must be prepared to head over there for meetings about the latest crisis. We are threatened and insulted during fits of anger. We are fiercely aware of the need to protect the rest of the family from harm. We dread the day that our child could inadvertently hurt someone without meaning to. We are tired.
We chose this life, knowing that it could wear us down. Please don't mistake my words for regret. We did not walk blindly into a life that causes us to stay awake at night fretting about our children's futures. But, wouldn't it be nice if we had a magic wand to wave all of the ugly away?
Please keep posting about your children. There is hope in knowing that our community is thriving. I love to see the evidence and your children are amazing. Thank you for sharing them with me.
Saturday, April 9, 2016
In-Between
Parents of children with chronic medical conditions live in a state of in-between. Our children are either recovering from an illness or medical crisis or they have one in their future. Usually both. We count the weeks, or hopefully months or years, between hospital admissions. We become a little complacent and cocky when the space between grows longer, forgetting how quickly the situation can change. We are never relieved of being in-between. We are always somewhere in the cycle.
We experienced the exhausting, mind-numbing, terrifying journey through a crisis this week when Angie was admitted to the hospital with pneumonia. Our in-betweeness is over for now. We are in the trenches for the moment. When Angie became sick with a cough last weekend, I began to plead with God (even though I know it is useless) to PLEASE, PLEASE , PLEASE not let this become a serious illness. PLEASE do not allow her illness to trigger a seizure-or multiple seizures, as in the past. PLEASE do not send us racing to the hospital in the middle of the night. And PLEASE do not require us to consider that this could be the illness that changes everything. Every one of these fears is completely reasonable in our family's reality. It is the reality for all In-Betweens. We simply never know.
I think I can say this pretty confidently for now......this is not the crisis that will break our hearts. We are sad that Angie's body continues to be wracked with persistent coughing, but we know she will continue to get better. We did end up rushing her to the hospital in Portland late Thursday night. Her breathing had become labored and she was extremely listless. Angie was admitted and treated with strong IV antibiotics and once again she was cared for by the staff that has a special place in their hearts for her. She was able to return home late Friday and as the nurse removed her IV, Angie told her, "Thank you for the sleepover". Sleepover? It definitely was missing the popcorn, movies, and giggles of a sleepover!
That is our Angie. She is taking the world by storm and she refuses to be kept down, by pneumonia, or any other obstacle she encounters. She understands as few other children can, how very important the doctors and nurses are to her continued well-being. She is grateful to them without us informing her she should be, telling every visitor to her hospital room, "Thank you". She told one nurse, who was finishing her shift, "I hope you have a very good night".
We are home now and looking forward to creeping back towards the in-between. I didn't appreciate it much before, but I will make an effort to be more aware of the positives. Every day at home as a family is a day to be thankful for. I am always learning and this week and taught me to be grateful, rather than complacent. I will not be cocky as our in-between stretches on, but I will also not be paranoid or fearful. As I read in a Pinterest post recently, "My record of making it through bad days is 100% so far."
We experienced the exhausting, mind-numbing, terrifying journey through a crisis this week when Angie was admitted to the hospital with pneumonia. Our in-betweeness is over for now. We are in the trenches for the moment. When Angie became sick with a cough last weekend, I began to plead with God (even though I know it is useless) to PLEASE, PLEASE , PLEASE not let this become a serious illness. PLEASE do not allow her illness to trigger a seizure-or multiple seizures, as in the past. PLEASE do not send us racing to the hospital in the middle of the night. And PLEASE do not require us to consider that this could be the illness that changes everything. Every one of these fears is completely reasonable in our family's reality. It is the reality for all In-Betweens. We simply never know.
I think I can say this pretty confidently for now......this is not the crisis that will break our hearts. We are sad that Angie's body continues to be wracked with persistent coughing, but we know she will continue to get better. We did end up rushing her to the hospital in Portland late Thursday night. Her breathing had become labored and she was extremely listless. Angie was admitted and treated with strong IV antibiotics and once again she was cared for by the staff that has a special place in their hearts for her. She was able to return home late Friday and as the nurse removed her IV, Angie told her, "Thank you for the sleepover". Sleepover? It definitely was missing the popcorn, movies, and giggles of a sleepover!
That is our Angie. She is taking the world by storm and she refuses to be kept down, by pneumonia, or any other obstacle she encounters. She understands as few other children can, how very important the doctors and nurses are to her continued well-being. She is grateful to them without us informing her she should be, telling every visitor to her hospital room, "Thank you". She told one nurse, who was finishing her shift, "I hope you have a very good night".
We are home now and looking forward to creeping back towards the in-between. I didn't appreciate it much before, but I will make an effort to be more aware of the positives. Every day at home as a family is a day to be thankful for. I am always learning and this week and taught me to be grateful, rather than complacent. I will not be cocky as our in-between stretches on, but I will also not be paranoid or fearful. As I read in a Pinterest post recently, "My record of making it through bad days is 100% so far."
Sunday, April 3, 2016
Almost every night, after Angie is asleep, I go to her and I lay my face next to hers. I breathe her in and tell her how much I love her. I just finished doing exactly this. I stay there for much longer than she would allow if she were awake. This child has changed my life and I do not want to forget that as we get busy and life moves forward. You see, I have already experienced how quickly time passes when you are parent. The days can be long but the years pass by like the blink of an eye.
Angie is growing and changing right before my eyes. She is so tuned in to what happens and what is said in her presence. She is an old soul and her heart understands things most 7 year-olds are far from knowing. She has experienced pain and challenges unknown to most and she seems to realize her good fortunate to have overcome huge obstacles. She has experienced a miracle after all.
I wonder sometimes about how much of her journey she remembers. Some with her brain, probably, and the rest with her heart. She has an amazing aptitude for people. She just gets them. If you don't know Angie yet, I hope you will meet her. Few have met her and not been irreversibly affected. She will leave her mark and you will be better for it. She is a puzzle, a wonder, a gift. She has changed my life.
Wednesday, March 23, 2016
One of Those Days
Today was One of Those Days. The days that remind me of the width and the breadth of Angie's influence on those who come into contact with her. Today, Angie had an appointment at Randall Children's Hospital for Botox injections for her shoulder. To be clear, medical-grade Botox treatments are nothing like those obtained by actresses and rich women to enhance their facial features. The injections that Angie receives are for the sole purpose of increasing the mobility in her shoulder. They are much more powerful than the injections that plump lips and enhance brow lines. And incredibly more painful.
The nurse that was assigned to Angie this morning knew right away that she was different. Angie didn't argue or complain when she was told about the procedure she would endure. She offered herself for all of the preceding screenings and she waited patiently for her injections. The nurse asked me if I wanted to decline the anxiety-reducing medications for Angie based on her calm demeanor. At that point, I remembered, most children don't behave this way. The screams coming from the other rooms on the unit confirmed this. And yet.....Angie waited patiently for what she knew would be the outcome,
Angie's rehab doctor came in and she greeted him as the old friend that he has become. They joked together as he prepared the injections and then he began the procedure. The needles that are used to inject Botox into carefully-identified muscles are large. The injection occurs over 30-45 seconds and is repeated three times. It is excruciating. And yet, Angie does not complain, but tries to distract herself from the procedure by turning her face away towards the wall and visiting with her nurse. She amazes me and the tears are in my eyes, rather than hers, as the procedure is completed.
After the post-procedure waiting period, Angie was escorted out of the unit and into the elevator. A nurse in the elevator turned to me and said, "Is this......Angie?". I nod. "She was just a tiny thing when I last saw her", she states, gesturing with her hands. At that point, I realized how I knew her, She was one of Angie's ICU nurses over 6 years ago when Angie spent almost a month in the intensive care unit with a severe respiratory illness, followed by a blood infection. At that time, it was a commonly-known fact that Angie was not expected to survive her illness. Miraculously, she did and it is rare for us to visit the hospital without encountering one of her caregivers from that time. That this nurse remembered her today reminded me of the impact she has had on the lives of those she has touched. It is incomprehensible, and not to be taken lightly.
Angie was placed on this Earth for a reason. She is a gift from God and she has impacted more individuals in her short life than we will ever know. Sometimes I am sad about her challenges but days like today remind me of the greater good. She is a light in an increasingly dark world and that cannot be discounted. What a privilege it is to have this child in our midst and to have her show us what life is all about. So grateful tonight to the nurse in the elevator for reminding me.......
The nurse that was assigned to Angie this morning knew right away that she was different. Angie didn't argue or complain when she was told about the procedure she would endure. She offered herself for all of the preceding screenings and she waited patiently for her injections. The nurse asked me if I wanted to decline the anxiety-reducing medications for Angie based on her calm demeanor. At that point, I remembered, most children don't behave this way. The screams coming from the other rooms on the unit confirmed this. And yet.....Angie waited patiently for what she knew would be the outcome,
Angie's rehab doctor came in and she greeted him as the old friend that he has become. They joked together as he prepared the injections and then he began the procedure. The needles that are used to inject Botox into carefully-identified muscles are large. The injection occurs over 30-45 seconds and is repeated three times. It is excruciating. And yet, Angie does not complain, but tries to distract herself from the procedure by turning her face away towards the wall and visiting with her nurse. She amazes me and the tears are in my eyes, rather than hers, as the procedure is completed.
After the post-procedure waiting period, Angie was escorted out of the unit and into the elevator. A nurse in the elevator turned to me and said, "Is this......Angie?". I nod. "She was just a tiny thing when I last saw her", she states, gesturing with her hands. At that point, I realized how I knew her, She was one of Angie's ICU nurses over 6 years ago when Angie spent almost a month in the intensive care unit with a severe respiratory illness, followed by a blood infection. At that time, it was a commonly-known fact that Angie was not expected to survive her illness. Miraculously, she did and it is rare for us to visit the hospital without encountering one of her caregivers from that time. That this nurse remembered her today reminded me of the impact she has had on the lives of those she has touched. It is incomprehensible, and not to be taken lightly.
Angie was placed on this Earth for a reason. She is a gift from God and she has impacted more individuals in her short life than we will ever know. Sometimes I am sad about her challenges but days like today remind me of the greater good. She is a light in an increasingly dark world and that cannot be discounted. What a privilege it is to have this child in our midst and to have her show us what life is all about. So grateful tonight to the nurse in the elevator for reminding me.......
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