“We have the family we were meant to have. It doesn’t look like everyone else’s, but our boys are perfect. As we celebrate our youngest Nicholas’s 2nd birthday and our family of four, I can’t imagine it any other way. Parenting is never easy, and sometimes as special needs parents we have a few extra curve balls thrown at us. Nicholas and Nathan are the greatest blessings and adventure we could have asked for and I know the best is still yet to come.
I was thinking about huge moments in our lives, and one I specifically remember is walking out of the hospital after an appointment with an orthopedic specialist in tears. I clutched my baby boy Nicholas in my arms, my baby backpack full of toys and snacks for what I had expected to be a long evaluation day. It was raining lightly but I was too numb to really feel it. The rain mixed in with the tears rolling down my face, so I could pretend when I passed other people I was ok.
The day had started normally enough, breakfast and snuggles with my two boys and dad. We sent Nathan off to school, said bye to dad as he went off to work and then Nicholas and I packed up and left for the hour drive in traffic to the appointment. The whole point of that visit was to just get an evaluation and discuss the possibilities for our youngest. We needed lots of information IF we decided amputation was the right thing to do. Nicholas was born in October of 2017 with a rare disorder called TAR (Thrombocytopenia Absent Radius). TAR causes very low platelets which requires regular transfusions to protect him from potential life-threatening bleeds. It also causes limb differences, and in Nicholas’s case, he was born without arms or knee joints.
Going back in time a little, our doctor had said at one of my ultrasound appointments, ‘His hands are connected at his chest.’ We were in disbelief at first, and I remember thinking he must have been making a mistake. What does that even mean? I drank so many milkshakes in the attempt to make him grow arms with more calcium. It wasn’t going to work, but I was desperate. There is nothing in the world that can prepare you for news like that. I cried and I felt guilty that somehow, I screwed up. The months till Nicholas arrived were hard. We had so many fears and the fears of our families weighing on us. We asked ourselves, ‘Is having him the right thing to do? Can we handle it?’ I hated those questions, because even in the middle of all of that fear I knew he belonged home with us. Still, we were scared.
Nicholas came into the world with a healthy cry at 4 lbs. 10 oz. I waited anxiously for a chance to see him but the giant blue curtain from my C-Section was blocking my view and no one was bringing him to me. My first glimpse of him was on the camera from a picture Chris had taken. His hands were at his chest and his legs were curled up tightly in a little yoga pose. He had 10 sweet fingers and toes, and I was in love. We were both in shock, the panic over doing what was best for him was all I could think of. The nurse put him on my chest and he was so tiny, and beautiful, despite looking ‘different’.
We spent 10 days in the NICU with a sign on his crib to be gentle with his legs. He was born with leg fractures and needed extra care. It was a on the fourth day in the NICU a doctor came in and after examining him said, ‘This is what’s called TAR. We will do a test to be sure, but it looks like TAR.’ He was the first doctor we had seen who made us feel like he really saw our son, and not some rare medical oddity. For the first time in days we felt a bit of reassurance. We had never heard of TAR before, but it explained the limb difference and the very low blood platelets. Nicholas had several transfusions while we were in the hospital and it continues to this day. It’s been two years and we have just graduated to 3-4 weeks between transfusions.
From the day he was born, we had two concerns that stayed with us constantly. His safety was first, and keeping him alive till he starts to make his own platelets. The second was giving him everything we could in life and all the possibilities. Could we give him the chance to walk someday? At the time we didn’t have any options we were aware of, but one. If we did an amputation, he would be able to walk. It became a discussion of which method to use. We could do an above the knee amputation and that would give him a joint. We could do below the knee, since those prosthetics are lighter. We also were told about an operation to amputate and reverse his legs so we would use his heel and ankle joint as the knee.
All of the options scared us…who ever thinks they will have to remove their own child’s limb?? But we were determined to be strong and do the best we could for him. So off I went to this appointment to just get information, we weren’t supposed to do anything but talk and understand what would happen. After sitting in the exam room for an hour the doctor came in with a handful of residents. He proceeded to tell me how he wouldn’t recommend doing anything at all or even discussing it until Nicholas was in elementary school. He sits in a permanent yoga pose with the bottom of his feet touching. ‘We don’t want to do anything until we know what he can figure out on his own,’ the doctor said. And that was that. As quick as that, we were done. No follow up appointments, we were just given an apologetic look and shown the door.
How was Nicholas going to sit at a school desk, in a movie theater, or a car? He was already uncomfortable in baby swings with his knees poking out, and it would only get worse. I tried imagining him as an adult and the discomfort he would have as time went on. I started to cry uncontrollably. I didn’t realize how much I had counted on that appointment for the comfort that we had options. Even if we didn’t take that specific path, it was at least an option and a choice we had. In that moment I felt like our whole world was caving in and we were helpless. There was no choice to be made.
I drove from the hospital parking lot with a knot in my stomach. I thought to myself, ‘What is his life going to be like?’ I had to create a whole new future in my head. ‘Will he struggle to sit in a classroom? Can he even be comfortable in a wheelchair?’ As a special needs parent we are used to thinking quickly through situations. We find ways to adapt and make things work for ourselves and our kids, but this was one obstacle I was not sure how to think our way through.
It was about this time we learned about an Orthopedic Surgeon who specialized in difficult cases like Nicholas and we called for a consult. There was a 3-month waitlist to be seen and we’d need to fly out of state to see him, so we waited anxiously until we could. All the while, our smart, amazing boy continued to learn how to work within his world. We had another path open up in front of us, and we waited to see what it held.
One flight and several x-rays later we were in the waiting room for what seemed forever, then all four of us made it into the exam room. The doctor came in and I am not sure I took a full breath from then on as he examined Nicholas and started discussing options. At one point the discussion started to remind me of the last doctor we saw for a consultation. I honestly don’t remember the exact words anymore, but the doctor said something like, ‘I’m not certain Nicholas is a candidate for surgery at all. The x-rays didn’t show enough muscle in his legs.’ Suddenly I started to feel really hot. The room started spinning and I was certain I was going to throw up. I stood there listening to the doctor and staring at my beautiful little boy on the exam table and I panicked. I must have not been holding it together as well as I thought I was, because all the eyes in the room slowly left Nicholas and were on me. The doctor asked if I needed some time and I was petrified of him leaving the room. Then Chris and I would have to wait again to find out if our son may ever walk! I told him to continue and Chris held my hand as I hung my head between my knees.
You want so much for your child to have everything you can possibly give them and I felt like I was failing at every turn. We were his parents; we were supposed to be able to fix everything and get him what he needed. Instead we gave him our faulty genetics. I know I wasn’t being completely rational, but I hadn’t realized till then just how much hope we had placed in this visit. We had let the question of, ‘will Nicholas ever walk?’ overwhelm us. This surgery wouldn’t change the strong determined boy he already was, and it wasn’t going to change anything about his personality or our family. It was just another path we had the chance to take or not take. Next year we will walk that path, and hopefully Nicholas will take his first steps when he is 3 years old.
It was a hard choice to make, even though we know it is the right one for our family. There will be multiple surgeries and months of a slow straightening process. It will also mean a long time away from family. We are scared, we never imagined in our wildest dreams we would move half our family to another state for that long. We will miss each other, our boys together and I know Nathan and Nicholas will miss each other so much. As frightening as this is, we know this is what. We have the support of our family and wonderful friends and we believe in miracles.
Sometimes we feel isolated listening to other families talk about the ‘regular stuff’. We listen to conversations about the silly and crazy things little kids do and the tantrums they throw like over the blue cup not being out of the dishwasher yet. We listen to friends talk about how their kids are playing on their first soccer team or learning to ride a bike or play an instrument. Meanwhile we are wondering if ours will have a chance to have straight legs and walk one day. We wonder if he will ever have enough platelets that we don’t need a central line or freak out anytime he bumps his head.
Those early appointments with the doctors were us holding on to some resemblance of the family and parenting life we knew. In a world of unfamiliar and scary, we were looking for something we recognized. However, our world is not going to be identical to our friends next door, and that is just fine. We are unique and our sons each came into this world perfect. Different is beautiful, and we use this as a chance to expand our world and share it with others we meet.
We have had some really bad days; some days we cry more than others and sometimes the mountain seems too steep to climb. We do climb it though, the multiple hospital, doctor and therapy trips. The days and nights in the hospital snuggling while we fall asleep sitting up. The creative adaptive items we find or create. We as parents climb those mountains because of the intense love we have, and we would do it a thousand times over for our kids.
Our first year was hard. We had two surgeries, bleeding episodes that landed us in patient at the hospital every two weeks and around 50 transfusions. We were exhausted and worried about his future. Now that he is almost 2, here is the truth. Nicholas is not lacking anything; he is perfect already. He has a spirit that lights up a room and fills us with joy. He laughs and giggles for his older brother in a way no one else can get him to laugh. Nathan will be the first to say, ‘My brother Nicholas is awesome just the way he is.’ Nathan is so very right; both our boys are perfect and we are all walking this new path as a family.”
This story was submitted to Love What Matters by Christina Cabral. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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