All, as I had posted in the thread about Jamar Toombs' son passing, I also lost a child recently. This is my first attempt to tell her story. It is only now that I can begin to put things in order so that I can remain coherent and do her justice. I chose to begin this journey here first because my membership to this community predates most things in my life. I joined before I got married or had any of my children. I apologize in advance, but this forum is my first thought when it comes to sharing triumphs and failures. Please consider this the first draft of what will become the most difficult story I will ever have to tell.
Dorothy, my ray of sunshine.
There are some important things needed to understand my daughter. The first being, that she is my second, of now four, girls. The second thing being that I named her after my paternal grandmother who was the sweetest and kindest woman I've ever known. The third thing being that, from the moment she was born, Dorothy breathed fire. She breathed fire like it was life. When she was about two years old, it became apparent that you do not wake Dorothy because she'll make you regret it. Do not wake the sleeping Dragon.
The absolute last thing that you need to know about Dorothy is that she was born with a rare genetic disorder called Conradi Hunermann.
While we were expecting her, the doctors in Lufkin recognized that she was not growing as quickly as she should be, so they sent us to specialists in Houston. There, the doctor said there was nothing to worry about and she would just be short. Understanding that we are not a family of tall people, and that her namesake was a short woman herself, it seemed like an acceptable answer.
In January of 2007, she was born and right away we knew something was not right. She arrived with white calcium flakes stuck on her skin. Calcium that belonged in her bones. As he mother and I cared for her like a normal infant, the doctors told us of the diagnosis. Dorothy would indeed be short and she would probably have problems with cataracts. Critically, they said that her bones, specifically her humerus' and femurs, will grow asymmetrically, leaving her limping and fragile. Lastly, the doctors said that the white flakes would eventually fall off but Dorothy could develop terrible scoliosis and kyphosis. Terrible enough to limit her breathing and organ development.
Her mother pursued every lead she could find to get Dorothy the care she needed and after moving from Lufkin to Moscow, ID, Dorothy ended up seeing some truly inspiring orthopedic surgeons at Seattle Children's Hospital. Dorothy would end up having a total fifteen, or so, surgeries at first. So many we have lost count. Ears. Cataracts. She had a feeding tube installed into her stomach in case she couldn't eat. But most importantly, Dorothy had growing rods attached to her ribs in her back and these things were like magic.
Dorothy could breathe easier. She had no more pneumonias and she could eat better.
However, the doctors said that the rods were only the beginning. She would need them to be expanded periodically, meaning an additional surgery, every three months at first but could be delayed six or nine months as her growth slowed. The end game was to get Dorothy to age 12 or 13 and as much time to grow as possible and then fuse her spine. Once that was done, she would not need any more back surgeries. Over the next few years, I got to know the drive from Moscow, ID to Seattle like the back of my hand.
The next big event was me starting graduate school in College Station in 2014. The rods were doing great, but you could see that they were not doing as well as they should be. So, in the summer of 2015, we spent 6 weeks at Scottish Rite Hospital in Dallas. The 5-year-old rods were removed, and Dorothy was placed in spinal traction. Over those six weeks Dorothy had a great time, all things considered, and they really do deserve their own story. However, when it was time, Dorothy had new rods anchored directly on her spine. Now, she was 8 years old, and we were in the home stretch.
After graduation in 2016, I found a position in Olympia, WA and I thought it was the best possible outcome. An adult job near Dorothy's doctors in Seattle. We could go to an appointment in a day instead of having to make a weekend of it. It was great. My third daughter was born on Dorothy's 9th birthday, so they instantly shared something. A little later, but sooner than could be expected, my fourth daughter was born.
As the years passed and things got harder differently. Dorothy became more and more aware of how different she was as kids in her class grew like kids do. She was always the shortest but now she was head and shoulders shorter than everyone. She became resentful of how dismissed she felt as kids just did not look out for her in the school hallway. Dorothy had friends and she lit up rooms. But it was something that would bother anyone in the same position.
Then came middle school. It was tough for my wife and I because we had a terrible time with Dorothy's older sister at 12. Everyone has a tough time with their daughters at 12 and Dorothy was no different. She became moody, reclusive, and more engrossed in her anime. We became alarmed when we read her texts to a friend threatening that friend's bully with arson. Like an outline for plans of burning down the kid's house. So, we got her some help. After a few visits with professionals at Seattle Children's, Dorothy seemed to be better at managing her anger, and we moved on.
At the end of the expansion surgery in 2018, Dorothy's surgeon said that it was time. Dorothy was 12, almost 13. It had finally come. What we had labeled through the years as the "Big Surgery" was here. We were all excited. In hindsight however, I think it meant different things to Dorothy and, us, her parents.
Then the virus hit. Washington State completely shut down and for a social girl like Dorothy it was devastating. Worse yet, it delayed the Big Surgery until the beginning of October.
Eventually, the day of the surgery arrived and succeeded with flying colors. Better than anyone could have hoped for, except for Dorothy. I remember when we got the news we could be discharged because it was moments before Isaiah Spiller ran over that Florida linebacker.
After the surgery things went as expected. We gave Dorothy space to heal and let her get back to normal at her own pace, but you could tell it was different this time. Dorothy was more reclusive and angrier. At the follow up appointment with her surgeon, Dorothy got uncharacteristically mad. Mad at the pain. Mad at the lack of result. Her doctor explained that she was a month removed from major life altering surgery and to give it time. On Halloween, her plans with friends fell through. Thanksgiving came and went.
Saturday, December 5th was a glorious day. The perfect bright, sunny, Washington winter Saturday. 9:30am game vs. Auburn that we win convincingly. I took my younger two daughters to the park to play soccer. I invited Dorothy but she declined. And for dinner, my oldest daughter made her fabulous crust and we had homemade pizza. Like every other night, we went around the table and said what we were grateful for. Dorothy said she was grateful for her sister’s pizza crust. Later, we put the younger two to bed and I said good night to Dorothy. Like every other night, I told her that I loved her. My wife and I watched TV until 11pm and went to bed, like most nights.
The following morning, December 6th, when Dorothy did not answer to calls to feed the dogs, we found that she had made a trip to the Aokigahra Forest sometime during the night.
The best we can figure, she had grown isolated with social distancing, understated her pain, and in a moment of rage at her condition, she decided on a permanent solution to temporary problems.
We should have lost her any number of ways. Kids with her condition just don't wake up sometimes. Any one of the 22 surgeries she had could have gone wrong. The virus could have taken her swiftly with her limited lung capacity. But this way is devastating. She never threatened self harm. She never even kidded about it. My wife and I had multiple conversations with her about it and she always dismissed our concerns. With every surgery. professionals included self harm questions before we are discharged from the hospital and every time, Dorothy said she was fine. Eager to live.
I wish I could recount how many ways I failed her but that is my story, not hers.
To close, I can barely remember any of the last two months. I was a bit relieved when the Aggies missed the playoffs because I knew I could just not muster the joy it warranted. However, there are a few things that I have been able to work out. I am going to get a diamond fashioned from her remains to be placed in my ring and I am going to have her name added to her great-grandparent’s plaque on the Quad on campus. Dorothy loved Reveille and was a verbal commit.
The last thing. Please, on the next clear night sky, find the constellation Cassiopeia and tell Dorothy for me that her father misses her more than he wants he next breath and he will come see her as soon as he can.
Thank you to everyone who read this.
Dorothy, my ray of sunshine.
There are some important things needed to understand my daughter. The first being, that she is my second, of now four, girls. The second thing being that I named her after my paternal grandmother who was the sweetest and kindest woman I've ever known. The third thing being that, from the moment she was born, Dorothy breathed fire. She breathed fire like it was life. When she was about two years old, it became apparent that you do not wake Dorothy because she'll make you regret it. Do not wake the sleeping Dragon.
The absolute last thing that you need to know about Dorothy is that she was born with a rare genetic disorder called Conradi Hunermann.
While we were expecting her, the doctors in Lufkin recognized that she was not growing as quickly as she should be, so they sent us to specialists in Houston. There, the doctor said there was nothing to worry about and she would just be short. Understanding that we are not a family of tall people, and that her namesake was a short woman herself, it seemed like an acceptable answer.
In January of 2007, she was born and right away we knew something was not right. She arrived with white calcium flakes stuck on her skin. Calcium that belonged in her bones. As he mother and I cared for her like a normal infant, the doctors told us of the diagnosis. Dorothy would indeed be short and she would probably have problems with cataracts. Critically, they said that her bones, specifically her humerus' and femurs, will grow asymmetrically, leaving her limping and fragile. Lastly, the doctors said that the white flakes would eventually fall off but Dorothy could develop terrible scoliosis and kyphosis. Terrible enough to limit her breathing and organ development.
Her mother pursued every lead she could find to get Dorothy the care she needed and after moving from Lufkin to Moscow, ID, Dorothy ended up seeing some truly inspiring orthopedic surgeons at Seattle Children's Hospital. Dorothy would end up having a total fifteen, or so, surgeries at first. So many we have lost count. Ears. Cataracts. She had a feeding tube installed into her stomach in case she couldn't eat. But most importantly, Dorothy had growing rods attached to her ribs in her back and these things were like magic.
Dorothy could breathe easier. She had no more pneumonias and she could eat better.
However, the doctors said that the rods were only the beginning. She would need them to be expanded periodically, meaning an additional surgery, every three months at first but could be delayed six or nine months as her growth slowed. The end game was to get Dorothy to age 12 or 13 and as much time to grow as possible and then fuse her spine. Once that was done, she would not need any more back surgeries. Over the next few years, I got to know the drive from Moscow, ID to Seattle like the back of my hand.
The next big event was me starting graduate school in College Station in 2014. The rods were doing great, but you could see that they were not doing as well as they should be. So, in the summer of 2015, we spent 6 weeks at Scottish Rite Hospital in Dallas. The 5-year-old rods were removed, and Dorothy was placed in spinal traction. Over those six weeks Dorothy had a great time, all things considered, and they really do deserve their own story. However, when it was time, Dorothy had new rods anchored directly on her spine. Now, she was 8 years old, and we were in the home stretch.
After graduation in 2016, I found a position in Olympia, WA and I thought it was the best possible outcome. An adult job near Dorothy's doctors in Seattle. We could go to an appointment in a day instead of having to make a weekend of it. It was great. My third daughter was born on Dorothy's 9th birthday, so they instantly shared something. A little later, but sooner than could be expected, my fourth daughter was born.
As the years passed and things got harder differently. Dorothy became more and more aware of how different she was as kids in her class grew like kids do. She was always the shortest but now she was head and shoulders shorter than everyone. She became resentful of how dismissed she felt as kids just did not look out for her in the school hallway. Dorothy had friends and she lit up rooms. But it was something that would bother anyone in the same position.
Then came middle school. It was tough for my wife and I because we had a terrible time with Dorothy's older sister at 12. Everyone has a tough time with their daughters at 12 and Dorothy was no different. She became moody, reclusive, and more engrossed in her anime. We became alarmed when we read her texts to a friend threatening that friend's bully with arson. Like an outline for plans of burning down the kid's house. So, we got her some help. After a few visits with professionals at Seattle Children's, Dorothy seemed to be better at managing her anger, and we moved on.
At the end of the expansion surgery in 2018, Dorothy's surgeon said that it was time. Dorothy was 12, almost 13. It had finally come. What we had labeled through the years as the "Big Surgery" was here. We were all excited. In hindsight however, I think it meant different things to Dorothy and, us, her parents.
Then the virus hit. Washington State completely shut down and for a social girl like Dorothy it was devastating. Worse yet, it delayed the Big Surgery until the beginning of October.
Eventually, the day of the surgery arrived and succeeded with flying colors. Better than anyone could have hoped for, except for Dorothy. I remember when we got the news we could be discharged because it was moments before Isaiah Spiller ran over that Florida linebacker.
After the surgery things went as expected. We gave Dorothy space to heal and let her get back to normal at her own pace, but you could tell it was different this time. Dorothy was more reclusive and angrier. At the follow up appointment with her surgeon, Dorothy got uncharacteristically mad. Mad at the pain. Mad at the lack of result. Her doctor explained that she was a month removed from major life altering surgery and to give it time. On Halloween, her plans with friends fell through. Thanksgiving came and went.
Saturday, December 5th was a glorious day. The perfect bright, sunny, Washington winter Saturday. 9:30am game vs. Auburn that we win convincingly. I took my younger two daughters to the park to play soccer. I invited Dorothy but she declined. And for dinner, my oldest daughter made her fabulous crust and we had homemade pizza. Like every other night, we went around the table and said what we were grateful for. Dorothy said she was grateful for her sister’s pizza crust. Later, we put the younger two to bed and I said good night to Dorothy. Like every other night, I told her that I loved her. My wife and I watched TV until 11pm and went to bed, like most nights.
The following morning, December 6th, when Dorothy did not answer to calls to feed the dogs, we found that she had made a trip to the Aokigahra Forest sometime during the night.
The best we can figure, she had grown isolated with social distancing, understated her pain, and in a moment of rage at her condition, she decided on a permanent solution to temporary problems.
We should have lost her any number of ways. Kids with her condition just don't wake up sometimes. Any one of the 22 surgeries she had could have gone wrong. The virus could have taken her swiftly with her limited lung capacity. But this way is devastating. She never threatened self harm. She never even kidded about it. My wife and I had multiple conversations with her about it and she always dismissed our concerns. With every surgery. professionals included self harm questions before we are discharged from the hospital and every time, Dorothy said she was fine. Eager to live.
I wish I could recount how many ways I failed her but that is my story, not hers.
To close, I can barely remember any of the last two months. I was a bit relieved when the Aggies missed the playoffs because I knew I could just not muster the joy it warranted. However, there are a few things that I have been able to work out. I am going to get a diamond fashioned from her remains to be placed in my ring and I am going to have her name added to her great-grandparent’s plaque on the Quad on campus. Dorothy loved Reveille and was a verbal commit.
The last thing. Please, on the next clear night sky, find the constellation Cassiopeia and tell Dorothy for me that her father misses her more than he wants he next breath and he will come see her as soon as he can.
Thank you to everyone who read this.
