I try to keep the tone of this blog so positive and upbeat so much of the time, because really, what’s the point of anything else? 90% of life is fabulous after all – a great family, a nice home, a good job. Compared to where he “could” be, Danny is light years ahead. There is nothing to be gained in thinking on the bad parts, the hard parts.
And the truth is, it is hard.
I don’t talk about it. I don’t admit it. I don’t let people know that no matter how good Danny is doing, I want more. I hide it like a dirty little secret, because any time I admit it I hear the exact same refrain.
“He’s doing so well though!” “Think how far he’s come!” “I know he’ll get there, it will just take time!” “It’s a marathon, not a sprint – he’ll get there!” “He is a little miracle, just be patient!”
It’s all true, and I know this. To all rights, he shouldn’t be here. To all rights, he should be severely disabled. If modern medicine were not what it is today, he would not be who he is today – it’s a true miracle. I know every child progresses at their own speed, and that Danny is doing amazingly well.
Sometimes, I just want to stomp my feet, plop down on my butt, and tantrum against it all.
None of these things help me out when Danny is throwing a tantrum because he’s pushing boundaries, as all toddlers do, but does not have the listening and comprehension to learn the lessons we need him to. After a conversation last night, I looked it up. In general, babies learn the meaning of “no” at 9-12 months, and will start responding to it from 12-18 months. In general, toddlers at 18 months start to push boundaries to see how far they can get. We are living in a house with a child who is typical on the boundary pushing but nowhere near typical level on the comprehension. The end result is a long, frustrating, seemingly endless battle that highlights everything we struggle with all at once.
And yes, I know totally typical toddlers go through similar struggles. That’s not the hardest part here. We went through that with Eric. We saw progress. We carried forward. With Danny, there’s no progress, it just – keeps – happening.
I’m trying to keep my cool and be a level headed parent, all the while listening to the voice of Danny’s neurologist in the back of my head whispering, you have to watch how he learns, because a learning disability is a strong possibility.
I take a deep breath, as I always did with Eric, and repeat my mantra “this too shall pass” when a tiny voice asks, are you sure?
Meanwhile, I see stories all the time of other newly activated children. The 5 year old putting 2 words together at 5 months post-activation. The toddler with over 20 words at 6 months post-activation. The baby that started babbling within 6 weeks of being activated. So no matter how often I can look it up online and remind myself that Danny is right on par with the language development of an 8 month old, I feel like he’s falling so far behind.
Of course, there’s plenty of good. I don’t like to post the hard parts, because then I know people will think the worst of me. They’ll think I’m depressed, they’ll think I’m always upset, they’ll think I need reassurance. That’s not true. Just because it’s hard doesn’t mean I’m miserable and struggling, it just means…well, that it’s hard. I can do hard. I don’t have to like it all the time, but it pays off. Moments like yesterday morning, staying home with the boys, taking them to the mall to play and watching Danny toddle around looking no different from any of the kids there.