For those of you who were following my blog at this time last year, you will know that we missed this trip because Lyra was in the hospital having surgery. Even this year I wasn’t so sure we would make it because Lyra and I both have colds. However, she is able to keep enough fluids down, so we made it! I am beyond excited to be here with my family.
While I am ecstatic to be here, there is something that I have noticed recently and is the real thing I wanted to share with everyone.
Lyra is just a baby.
Something I struggle with (and I am sure other special needs parents find the same thing) is striking a balance between wanting the world to accommodate your child’s needs, and wanting the world to just treat your child like any child. At this stage in the game I don’t have much to complain about in terms of accommodations for Lyra. She basically needs what any baby needs with a few modifications. However, I do get anxious about how others perceive her and I do have to be extra vigilant about who/what she is exposed to (germ wise).
While Lyra is medically fragile, she is no porcelain doll.
This kid is tough as nails. She can bonk her head and not even flinch. There have been times where her whole body looks like it was used as a pin cushion and she is bouncing around in her walker flirting with everyone.
It is hard for me at times. She rarely plays with other babies because it is too risky at times to expose her to them. She is also behind developmentally so sometimes it is hard for her to keep up. It’s difficult for me to see the differences between her and typical children. Also, I am always concerned about her attachments. They mark her right away as being different.
There have been a few key moments in the last month or so that have shown me that, it isn’t that people don’t notice her tube, it’s that they don’t care. To them, she is just a baby. It warms my heart to see her treated that way.
The first moment was when a good friend of ours came to visit from Maryland. S has been around a ton of babies and just loves kids. While I knew S’ heart was in the right place, I was a little worried about his reaction to the realities of taking care of Lyra.
I needed to have more faith in people.
S ment Lyra right where she was. He didn’t expect her to be doing certain things, or get weirded out by her being connected to a machine. He took note of her tube, where it was, and then just Lyra how she is. He played with her and carried her just like you would any other kiddo. He also watched me give meds, prep bags, and attach/detach her extension. With some written instructions I probably could have left her with him for a few hours. Uncle S would have been just fine.
The second moment was with my nephew. It was a simple, quick thing. We walked together over to our relative’s house for dinner. Once we got there, he picked up my daughter, threw on her backpack, and walked off as if that is what you did with every baby. Mind you, my nephew is 15. Lyra loves him and just sat on his lap for about 45 min while they took silly pictures on snap chat.
While it isn’t a moment, the process of getting here, to Hawaii, was more of the same. People look at her as a cute, fun, good baby… With an attachment. I have learned it is NOT that people don’t see her feeding tube. They see it, and even ask about it. People don’t focus on it. It’s a footnote for them: important for complete understanding, but not worth having in the main text.
With that in mind, it is time for us to enjoy some more sunshine.