Nothing can prepare you for being a parent to a child with special needs. Our journey together didn’t start off in the way many families do. For the first year we conducted a fairly “normal” life, you know, whatever that means. There was the first roll over, the first tooth, the first time he sat up and so on and so forth. I can remember meeting him for the first time and waiting for the moment our midwife or nurse would say something was wrong. I just stared at him with the intuition only a mother can have, and questioned why they weren’t saying anything. No one did. No one said anything was wrong, and I breathed a sigh of relief, but the lingering thought there was something, wrong, or maybe I should say different, about my baby stayed in the back of my mind.
When we brought him home, he just wanted to be held. I turned to my online community and was reassured this was normal. I placed him in a sling and he immediately became calm. As he nursed, and nursed and nursed some more, I continued to hold him. My arms would ache so I turned to using baby carriers as a means to keep my baby content and my hands free. He would snuggle his little head into my chest and spent many of his first months napping close to me.
I remember we would go to his checkups, his pediatrician would commend his great head control, and how strong he was. He rolled over right on time, and his little body gained weight like it was a race. At just four months old he had surpassed 19 lbs, and he was the squishiest baby you ever did see. He would nurse for nutrition, and comfort. I remember that if he wasn’t being held (or worn) he was nursing.
At the six month mark, we attempted and failed at giving him food. I again turned to my online community for support and they assured me this was just a variation of the norm. Looking back at our history, this is really when we should have started the evaluation process, as he didn’t accept his first foods until 11 months and at that point it was still very limited. He would throw up, and return to nursing. If he wasn’t nursing, he was being worn. He was always so mellow when being worn. He was happy, content and he felt safe.
Being safe and warm, pressed against his mama was where he always wanted to be, and I obliged. I remember having days where I struggled with constantly being touched, and never getting a break, but the same online community that supported me in our early days was there to support me now.
By 14 months we experienced the most frightening thing a parent can witness and that is your child seizing. It was late, he hadn’t been himself all day, and in the cold March night he had a febrile seizure.
The next few months are a bit of a blur of follow ups and hospitalizations. He got sick, he got better, he said words, he stopped talking, he threw up, and then we finally started getting help. Help and answers, it’s what we wanted most. Would our little boy full of light return to us? Would the glimmer he had in his eyes ever come back?
He started in therapy just shy of his second birthday. It started with seven hours per week and rapidly increased to thirty. His life no longer looked like the average two year olds, and our adjustment period was long. Throughout the process we turned to babywearing for comfort. The closeness and the touch gave him the compression he desired without needing to wear the weighted garments, his therapists had suggested.
His schedule became routine, and we added in new therapies including physical therapy, as his developmental delays also included some gross motor delays that were potentially related to pronation and low tone. He got little foot braces to help him walk, run and jump. He still doesn’t like doing two out of three of those things, but together we push to do them.
These days he is half my height, and I still use baby carriers to carry him. Occasionally we get a comment, about me carrying a child of his size, but I remind them that he has the best seat in the house and if someone wanted to carry me around all day, I would let them too.
Babywearing brings us both great happiness, and knowing that I can provide him comfort now that he no longer nurses and doesn’t always have patience for a back rub, makes me feel like we have bonded in a way that not all parents get to experience with their child.
He will be three this weekend, and he has come such a long way in his journey. He is aging out of the early intervention system, but will continue to receive the supports he needs to flourish and have a shot at leading a life more akin to his peers.
Sometimes I wish things would just come easy for him, and then I remember that each of the challenges he faces just builds character.
In our journey we have learned that there is always a story more severe than ours, and there will always be a story less trying. The important thing for us is that we live in the moment, and despite the rigidity of our therapy schedule, we do live in this moment.