Are you the parent of a special needs child with major delevopemntal delays? No? Then please, for my heart’s sake and my sanity, stop telling me all about how fast time flies by. Because here, at my house, it really doesn’t.
I mean, I get it: Time does go by so fast. I can’t believe Jonah is turning 2 this summer! But right now I have a 19 month old who doesn’t crawl, doesn’t babble, and can’t suck strong enough to keep his pacifier in his mouth for more than 20 seconds. Then, when it falls out, he doesn’t have the motor skills to pick it up or put it in his own mouth. Imagine 19 months of having to hold the pacifier in your kids mouth. 19 months of trying to play with your baby but being unable to because he doesn’t reach for objects, much less hold them. 19 months with none of those sweet babble sounds: nothing that sounds like dada, mama, or anything other than random yelling. Do you still have to hold your toddler’s bottle for him? Have you watched your baby rock on his hands and knees for 4 months with no progress and had to listen to people tell you over and over again that he’ll be crawling so soon? Have you waited for almost a year to finally qualify for medical help for your baby? No? Then trust me, you don’t understand just how slow time goes here. Years may ultimately go by fast, but the days, weeks, and months are so SLOW!
Jonah is a couple weeks away from being 1 year seizure free and as we prayed through his treatment we NEVER thought he would still not be crawling one whole year later.
You tell me to enjoy his extended no crawling phase, but you don’t understand how boring it is to sit around with a baby for 19 months. I want to be able to chase him around. I want to watch him explore. Instead, I watch him sit and stare, often aimlessly, at nothing and wonder if he’s even in this universe. There’s nothing fun about that. I don’t care what you say, it’s not a blessing to have a baby who can’t be involved in the world around him. You see crawling as a burden to your relaxation time. I see it as an exciting reason to finally get off the stupid couch!
Don’t get me wrong though, when I see your post on Facebook about which month old your baby is now and all the new skills they’ve acquired, I think, “wow! I can’t believe how fast he is growing!” And, “that’s so awesome! Look how big she is.” And, “oh cool, he’s so tall and can already sit up.” And also, “man…i wish Jonah could do that.” I can’t wait until he can finally do the thing that babies literally a year or more younger than him are doing. I am genuinely excited for you and your baby! I honestly am. I love seeing it. But it also reminds me how far behind we are. I forget how small and slow growing Jonah is until I ask how old your running, talking toddler is and realize that she’s only 2 months older than my boy, who is currently struggling not to fall out of a seated position.
But please don’t read this and think it means we don’t want to be included! It’s hard for my heart sometimes, but I want to be invited to mom outings and birthday parties, too! I want to celebrate your pride and joy! I want to get to know you and hang out with your kids. It just might not always look the same for my baby. We may sit some things out in an effort not to waste money on things he can’t meaningfully participate in. But that’s ok! I’m ok with that. It’s my normal. We can adapt and modify most activities as needed.
I know that, in general, time goes by so quickly. I know that, one day, I’ll look back on this time and wonder where it went. But the reality is, that day is a lot farther off for me than it is for you.
Please include us! Just please, please, please…don’t tell us how fast time flies.