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.
Friday, September 30, 2016
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.
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