by Rachel Nichols
Hope is the thing with feathers,
That perches in the soul
And sings the tune without the words,
And never stops at all.
When you walk into our house the word “hope” smacks you right in the face. Immediately in the line of view, when you walk in the door from any entrance, there is artwork that reads, “hope.” It serves as words of encouragement and of warning: hope, in spite of everything, lives here.
Most people from the special needs community would describe me as an optimist; that couldn’t be further from the truth. I am actually a quite bitter, cynical, pessimistic, realist. I am also brutally honest, a quality that I’ve been told on more than one occasion is one of my most adoring features. The one thing that brightens my dark little heart is my two and a half year old son, Spencer. He is my super hero.
What changes my perception of hope is the gleam of it coming from my son’s eyes. I put hope in his strength and courage, his wonder and excitement. While on paper, his future doesn’t look the brightest, hope tells us that he is in for an incredible journey and he will do incredible things.
Hope Rising from the Ashes
Spencer has Say Barber Biesecker Young-Simpson Ohdo Syndrome, or Ohdo Syndrome for short. It’s an incredibly rare genetic disorder that is characterized by global developmental delays, low muscle tone (hypotonia), facial dysmorphia, hypothyroidism, feeding difficulties, hearing loss, vision problems, airway complexities and congenital heart defects. Spencer also has Pierre Robin Sequence and was born with a cleft palate, micrognathia (small jaw), bronchomalacia, tracheomalacia, laryngomalacia, and craniofacial muscle weakness.
In the beginning, finding hope was challenging. Spencer’s only medical issue we knew of before he was born was his clubbed foot. It wasn’t until he was a day old when the doctor’s told us he had all the signs of a genetic disorder and he was rushed to Cincinnati Children’s Hospital and Medical Center. With the doctor’s words, every hope, dream, and expectation we had for his future shattered right before our very eyes. For the first week or so of his hospitalization, I was in a very dark place and it felt like my whole world was caving in. I wondered why this happened to us and why to him. He was only supposed to have a clubbed foot!
After the initial shock wore off, I started finding little things to celebrate. While his doctors kept on adding to the list of things “wrong” with him, my husband and I kept finding things that were right. He was over a week old when he started opening his eyes for the first time and they were exactly the same as my husband’s wise eyes. His microarray results came back clean when he was two weeks old, so there was still hope that he just had a bunch of congenital birth defects. He started holding his head up on his own long before the parenting book said he would and he appeared to be right on track developmentally.
Then the surgery started. Spencer had his G-tube placed when he was a month old, due to feeding difficulties. I simply hoped for him to survive. It seems silly now to be so worried about such a simple surgery, but the first surgery is always scary and I was a nervous wreck. He had his second “big” surgery at two months old and I hoped that it would bring him home. To date, he has had 26 surgeries or surgical procedures and each time I hope for something new. I hoped that he would see better after his bilateral ptosis repair, or he would start eating better once he had his cleft palate fixed.
When Spencer was 83 days old, we brought him home from the hospital. It was right around this time that he stopped staying on track with typical developmental milestones. Soon after, I threw away the parenting book and we just winged it, because clearly this kid had a different opinion on what was developmentally appropriate for him. When Spencer rolled over the first time, months after he was supposed to, my husband and I were incredibly proud. The last thing on our minds was that it took him so long to do it. Instead we just though, “What’s he going to tackle next?!”
It’s also quite hard to feel hopeless with Spencer around. At two and a half he has an amazing sense of humor. He doesn’t walk or talk, but he crawls and dances, and lets his opinions be known. He is creative and smart. He is very mechanical in his thought process (just like his father) and he loves to tinker. He plays hide and go seek by putting his arm up over his eyes. He loves to explore, even with his sensory issues and tactile defensiveness. For an Ohdo kid, or any kid with his list of medical issues, he is doing quite well.
For the first year or so, Spencer being “normal” was still in our grasps. Spencer was still undiagnosed and the doctors reassured us that there was a logical explanation for all of his problems. My husband and I were still hopeful that Spencer would pull out ahead and someday be considered typical. We were fortunate enough to have a medical team that fostered hope. While his issues are starting to look more like long-term problems, his entire medical team is impressed by how well he is doing and how often he is proving what is the Ohdo stereotype wrong.
Hope is ingrained in every part of me, even if I no longer hope for normal. I never talk about “ifs”–I talk about when and how. There is no doubt that Spencer will someday walk, but it may be with a walker. He will someday talk, but it may be with his hands or a computer. He will play soccer when he turns four, but it may be in a wheelchair. He will go to school, but it may be a little different from how his cousins go to school.
My husband and I now hope for different things than the things we hoped for before Spence was born. While we will never give up hope that Spencer could someday grow up and be a doctor, lawyer, or whatever it is that normal parents hope for their kid’s career choices to be, logically we know that with him having Ohdo Syndrome, there is a good chance he won’t make lots of money and buy us a big house on the beach. However, he will grow up, and he will do something meaningful with his life.
My Hopes for My Child
While I have completely different hopes and dreams for him now, they aren’t so different from normal hopes and dreams:
- I hope that someday Spencer will have a best friend.
- I hope that he chases his dreams.
- I hope that he grows up to be a confident young man.
- I hope that Spencer will fall in love so deeply that it takes his breath away.
- I hope that he will be just as loved in return.
- I hope for him to live his life to the fullest and to have no regrets.
The thing that I hope for most of all is that Spencer will be happy. I don’t need anything other than that.