For the most part, Lyra is super fun right now. She has a huge personality and recently has become mischievous and very curious about the places on the other side of the gate (aka the kitchen and the dog food). She crawls everywhere and climbs on anything she can. She giggles, claps and is generally a happy kiddo. She also seems to be gaining weight like a champ – something that has been a constant battle for us. While I am truly enjoying the leaps that she is making… somethings are just hard.
The other day I was working out at my local gym and saw a crowd of kids about Lyra’s age eagerly waiting for their “tumbling” class to start. It made me sad that Lyra doesn’t get to do things like that. Having her in a class with a bunch of toddlers climbing on things would be dangerous. She would be underfoot since she doesn’t walk. Plus, there is the added obstacle of her tube. She is connected to a feed most of the day, and she is still too small to wear a backpack with her pump in it. That means I am chasing her with the backpack and there is a line of tubing between us (perfect trip chord for an unsuspecting toddler). Before you say, “just disconnect her for class.” Please understand that it isn’t that easy. She gets her feeds at specific times with a specific duration for a reason. It has taken us about 2 years of trial and error to find a schedule that gives her the best chance at keeping food down. Even if we do find a way, down the road, for her to do some sort of class like that, it won’t be with her peers. It will be with children much much younger than her.
It just… made me sad. I want that for her. I want the social interaction, the independence, and the excitement I saw in the other kids. I want that for her so badly. It’s hard.
Another reminder of how different Lyra is, and her limitations, came a few weeks ago. I was trying to think of places to go with Lyra when the weather isn’t great for playing outside. I thought of a local butterfly pavilion and how much my niece loved it at her age. Then I realized, Lyra wouldn’t be able to see the butterflies. Now, her vision isn’t terrible, and right now glasses would be more of a hinderance than a help. But she wouldn’t see the butterflies… or a plane in the sky… or an animal at the zoo. To her, the animals are just fuzzy blobs that sometimes move. Nothing more.
I want to see the excitement on her face when an elephant walks by, or a monkey jumps from tree limb to tree limb. I want to see her reach of a butterfly, hoping to touch the colorful wings. Or have to point to one of the hot air balloons that fly out by house. But she is different. She doesn’t see those things.
Lastly, it is back to school time. While Lyra is still not old enough to be in school, the thought of her being in school terrifies me. I am not worried about missing her (I will), and do not feel an overwhelming need to spend more time with her (mommy needs a break). I worry that, while at school, she will not be taken care of. Over protective? Maybe. But I hear over and over again from special needs parents about how hard it is to get schools to provide kids with the care they need. Hearing the parents talk makes school sound like a battle where you can’t trust who is on your side. And the “guidelines” I see for incorporating your child’s feeding requirements (particularly for tube fed kids like Lyra) are HORRIFYING. For example “make sure it is in your IEP that it is NOT acceptable to simply turn off your child’s pump and not feed them all day.”
Are you f%#$ing kidding me!!! Obviously this happens enough that the well respected organization I follow on Facebook needed to point out you have to tell the school this. Can you imagine if an average child was withheld food and water all day at school because it was “too hard” to feed them?!?
So I am scared, and that makes me sad. I think of playing at recess, going to art class, singing songs, story time, making friends, and all of those other wonderful things I did at school. I also think of all the things I could do BY MYSELF while she is at school: grocery shopping, laundry, cooking, or (heaven forbid) consistently going to the gym. OH or maybe getting a part time job (I actually miss having an office job). But I don’t know if I can trust the people I am supposed to hand her over to. From the stories I have heard, I may have good reason not to trust them.
So, sometimes it’s just hard. I wish she could experience things with her peers. I wish she could experience more of the world around her. And I wish I could send her to do normal kid things without fearing her basic needs wouldn’t be met. It’s just… hard.
But her smile does make it a little easier.