So…lengthy backstory before we get to starting preschool.
Hayden is about to start preschool!!! Before we get there, let me catch you up on our backstory. Hayden was born with bilateral cataracts, which i didn’t know was even a thing?!? Apparently it is, and it happened to us. The day after he was born, the pediatrician checked Hayden’s eyes for a Red Reflex, which is essentially what gives you red eye in pictures. He didn’t see it, but told us he would try it again the next day. Round two gave us the same results. We followed up with his regular pediatrician when he was five days old and she couldn’t find it either. We were told “don’t Google this” and that she was making an appointment with an ophthalmologist. We spent all weekend crying and completely panicking and (duh) Googling it.
She was right.
We shouldn’t have done that.
Results brought up all kinds of things from “just a weird fluke that happens sometimes” to “brain cancer”. After a follow up with a pediatric ophthalmologist in Jacksonville, the diagnosis was bilateral cataracts and surgery dates were scheduled. If cataracts aren’t removed by six weeks old, the brain decides that those pathways are dead and will shut down, so we had to do it ASAP.
I was disappointed, devastated and terrified. Who thinks that this is something you need to worry about when you have a baby? I knew parenthood would be full of sleepless nights and lots of crying and stress, but not like this. On the other hand, I also recognized that there were lots of parents out there who would do anything to get the diagnosis we had gotten, which added a heavy helping of guilt to my plate.
Fast forward a couple months: Hayden’s surgeries went fine and I ended up being a Contact-Removing Ninja. I still am and I’ve since added “Contact-Finding Ninja” and “Contact-Placing Ninja” to my resume. We got into a good rhythm of eye drops, patching, and normal infant parenting. Poor kiddo was blind as a bat and had the uncanny ability to look in two directions at once (he still can), but overall he was healthy his vision would improve with time. We were managing, but I was mentally overwhelmed and exhausted. I was making it day to day and that’s all I could do. Postpartum depression was also kicking my ass, but I didn’t know that yet.
At his 5 month check up, his doctor was concerned because he wasn’t holding his head up, so she referred us to a physical therapist. Hayden had hypotonia (low muscle tone) and needed weekly appointments at the office, in addition to weekly visits at home. We figured that after a couple of months, he would be caught up and we could move on. We had no idea how weak he truly was and what a long road we were facing.
Around this time, we also saw a geneticist, who in my opinion, did way more harm than good. She was awful, insensitive, and patronizing and just a general all-around horrible woman.
Side note: Why is it that doctors who have the scariest news to give, are the worst at giving it?
Shouldn’t there be some additional sensitivity training or Bedside Manner 101 or something? She threw out all kinds of horrible genetic disorders that he could have and possibly die from. After lots of bloodwork and MRIs, all the results were either totally normal, or not abnormal enough to say anything.
After talking with family, friends, and Hayden’s team, we decided to hold off on any further testing. We simply couldn’t take it anymore. He was healthy and his vision was continually improving, he was just very weak. I spent a lot of nights at home sobbing and terrified about what was wrong with my little boy. Chris and I traded off on panic attacks, but I was in bad shape. The tiniest thing would send me into a tailspin and it was getting increasingly harder to recover. We were missing his first year of life because we were just trying to hold it together until the next appointment. He was only making the tiniest of steps in therapy and the road to him being a normal kid seemed longer every day. Once we decided to let it go, we felt like we could breath easier and enjoy being parents.
On the Move
Hayden becoming more mobile was a big step (haha see what I did there?) because he could finally build some strength on his own, rather than us forcing it. At 15 months old, he started pushing up on his arms, and he began crawling around two. It got easier for us to see him as a toddler rather than a baby, and we felt like we could start expecting more out of him. I didn’t need to get a toy that was farther away than he would like. He was now capable of getting it if he wanted to…how mean am I?
Once he could handle it, we got a stander and eventually a walker so he could walk around the house. He picked up on the walker pretty quickly, and started spending a lot of the day in it.
About a month ago (his third birthday) HE. STARTED. WALKING. He can pull himself up and then takes off. This will probably be the last week we have the walker, and my toes could not be more ready. He gets steadier every day and he thinks he’s the hottest thing around. Every milestone with Hayden has been in slow motion, but we got there.
The latest big step: PRESCHOOL!!!!!
At first, I was very concerned that his teachers weren’t going to realize how much help and attention he still needs. Hayden is not like other three year olds. Besides all the major differences like barely walking and almost no talking, he is still very baby-like. Some days he doesn’t put anything in his mouth, and other days I can’t leave anything remotely small laying around. He also can’t use a utensil or eat unsupervised yet, because he will jam everything he can into his mouth. Would his teacher know that or would she assume he was past that stage and not even think about it? Once we met with her, all those fears disappeared. The other kids in his class have similar delays and his teachers seem wonderful.
Plus, it’s a big milestone that we are able to enjoy just like everybody else.
Maybe I’m the worst mom ever, but I can’t wait for the first day of preschool!
Slow & Steady
In a way, I feel like special needs parents appreciate things in ways that other parents don’t. Every mom is ecstatic when her baby rolls over, but it feels like more of a team accomplishment when you’ve had therapy twice a week for months beforehand. Because it’s not just “wow they rolled over!” It’s one week of “wow he’s holding his head up!” And then a couple of weeks later, they push up onto their elbows and almost make it the whole way over. Finally, after a month, they have made a complete rotation! All of Hayden’s progress has been that way: slow and steady.
Anytime I talk to a friend who has older kids, I hear that as soon as he takes off, we are going to wish he hadn’t. Not us. We can’t wait, because we have been in limbo for what feels like forever. Essentially, we had a baby for over two years and we are finally reaching the top of this mountain that we started climbing when he was six months old. We laugh and cheer over every inch of progress he makes, and we are ready to be at the end of this particular road. I can’t wait for Hayden to not struggle so hard for things that come without any effort for other kids.
We have tackled some major stuff so it feels like we can handle anything. Side note: if the universe could avoid testing me on this, that would be great).