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.
Monday, April 18, 2016
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.......
Tuesday, March 22, 2016
Progress?
One week ago today, Toby and I went to court for a review of Angie's case. Angie's lawyer explained to the judge about the lack of progress and the judge was frustrated too. We have had the same judge preside over Angie's case since she was a newborn and he knows the case well. He strongly believes she belongs with us and was thrilled when he was able to change her plan to an adoption track. I have not always agreed with some of his decisions in other cases but on this day he did the right thing....
The Department of Human Services caseworker was unable to attend the hearing and her replacement forgot to show up. The judge made a ruling of No Reasonable Efforts against the Department and set another hearing in 30 days to check on the progress of the case. A No Reasonable Efforts finding is a very big deal for DHS. They will now lose federal funding for Angie's case and they will be required to answer for the lack of effort on their part. It is serious.
I thought that we would magically see progress from that point forward. Oddly, I have not heard one word about going forward with the adoption. At first, I felt a little bad for the agency, but it seems that even this ruling is not enough to get their attention. On a daily basis, nothing has changed for us. We are still doing what we do and loving every minute of caring for this precious girl. As time goes on, the adoption seems distant and unrealistic but I know it will eventually happen.
We have not given up hope, but we are extremely disappointed. I try to stay positive by planning in my head the biggest party ever to celebrate Adoption Day, whenever that might be. More to come about that........
The Department of Human Services caseworker was unable to attend the hearing and her replacement forgot to show up. The judge made a ruling of No Reasonable Efforts against the Department and set another hearing in 30 days to check on the progress of the case. A No Reasonable Efforts finding is a very big deal for DHS. They will now lose federal funding for Angie's case and they will be required to answer for the lack of effort on their part. It is serious.
I thought that we would magically see progress from that point forward. Oddly, I have not heard one word about going forward with the adoption. At first, I felt a little bad for the agency, but it seems that even this ruling is not enough to get their attention. On a daily basis, nothing has changed for us. We are still doing what we do and loving every minute of caring for this precious girl. As time goes on, the adoption seems distant and unrealistic but I know it will eventually happen.
We have not given up hope, but we are extremely disappointed. I try to stay positive by planning in my head the biggest party ever to celebrate Adoption Day, whenever that might be. More to come about that........
Friday, March 11, 2016
Do Over
This year started out rough for us, marked by hurt and disappointment. I want a Do Over and I am going to have one. Starting now, my family is going to rise above our rough start and move beyond the hurt. We will not be defeated or defined by evil. There is too much good on the horizon. I choose to focus on the positive:
We are celebrating Levi's 14th birthday this weekend. Oh, Levi. You have changed my life forever. Your tiny little body was the smallest I had ever held when you were delivered to us in that snowstorm 14 years ago. You were frail and tiny and it was love at first sight. I could not have guessed how much I would gain from learning to care for you. You are generous, smart, and funny. You have overcome great odds to become the person you are today.
Then there is Angie.....our not-so-little anymore miracle girl. Angie, you have shown me that no one can hold back an individual who is determined to succeed. You set the bar so high and I strive to meet the challenge. You make me a better person. Every. Single. Day. And your dream of being adopted will come true just as soon as we can possibly make it happen. We are your forever family and a piece of paper will not change that, but will confirm what we already know.
We have four other children who are each amazing in their own right. Kaeley is a mother and a wife and has made her family a priority. Kirsten has made her son the most important thing and has sacrificed to make sure he has what he needs. Jordan has devoted herself to our family business while going to school. Josh is the kindest boy in the entire school (yes, I am biased) and is devoted to his brothers and sisters even when it is hard and sometimes embarrassing.
We are blessed beyond belief. We will not be distracted from that by the actions of others. I look forward to sharing our future victories as we reach our goals as a family. And we will. Thank you for your continued support. It means more than you know......
We are celebrating Levi's 14th birthday this weekend. Oh, Levi. You have changed my life forever. Your tiny little body was the smallest I had ever held when you were delivered to us in that snowstorm 14 years ago. You were frail and tiny and it was love at first sight. I could not have guessed how much I would gain from learning to care for you. You are generous, smart, and funny. You have overcome great odds to become the person you are today.
Then there is Angie.....our not-so-little anymore miracle girl. Angie, you have shown me that no one can hold back an individual who is determined to succeed. You set the bar so high and I strive to meet the challenge. You make me a better person. Every. Single. Day. And your dream of being adopted will come true just as soon as we can possibly make it happen. We are your forever family and a piece of paper will not change that, but will confirm what we already know.
We have four other children who are each amazing in their own right. Kaeley is a mother and a wife and has made her family a priority. Kirsten has made her son the most important thing and has sacrificed to make sure he has what he needs. Jordan has devoted herself to our family business while going to school. Josh is the kindest boy in the entire school (yes, I am biased) and is devoted to his brothers and sisters even when it is hard and sometimes embarrassing.
We are blessed beyond belief. We will not be distracted from that by the actions of others. I look forward to sharing our future victories as we reach our goals as a family. And we will. Thank you for your continued support. It means more than you know......
Wednesday, March 2, 2016
We have been keeping a low profile this week. I have felt the need to hold my family close. We are circling the wagons and this has been a tough week. The secret is out-our son is a crime victim and his offender has been released from jail. These are tough times and we have to rely on our faith to push on through it. God will have His justice and we don't get to decide what it is. Now, to explain to my son about a justice system that is bent towards offender's rights....
Please respect our privacy regarding this matter. We have refused multiple requests for media interviews so our son is not exploited in any way. Please do the same if you are approached. This is a small town and we all have to live here together. This is a time for solidarity, not judgment. Let's stand together for what is right without condemning those who disagree. Again, justice is not ours to determine, as hard as that is.
Our community will get through this. We need to help those who are hurt. Smile when you see them in town. Offer words of encouragement if you have an opportunity. Accept that they may be behaving differently than you would expect as they work through the pain. Don't assume you know how they feel. Be gentle and accepting.
We love the community of Clatskanie. We chose to raise our family here and we have never looked back or regretted it, even now. Bad things happen everywhere. But, please, learn something from our experience. Teach your children that although strangers can be scary, they are not usually the ones who will hurt them. Predators are looking for vulnerable children who look up to and respect them. Who have been enticed by a family relationship, special treats, and fun shared activities. Teach your children. Right now. Today.
Please respect our privacy regarding this matter. We have refused multiple requests for media interviews so our son is not exploited in any way. Please do the same if you are approached. This is a small town and we all have to live here together. This is a time for solidarity, not judgment. Let's stand together for what is right without condemning those who disagree. Again, justice is not ours to determine, as hard as that is.
Our community will get through this. We need to help those who are hurt. Smile when you see them in town. Offer words of encouragement if you have an opportunity. Accept that they may be behaving differently than you would expect as they work through the pain. Don't assume you know how they feel. Be gentle and accepting.
We love the community of Clatskanie. We chose to raise our family here and we have never looked back or regretted it, even now. Bad things happen everywhere. But, please, learn something from our experience. Teach your children that although strangers can be scary, they are not usually the ones who will hurt them. Predators are looking for vulnerable children who look up to and respect them. Who have been enticed by a family relationship, special treats, and fun shared activities. Teach your children. Right now. Today.
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