Special needs siblings

I was curled up tonight with Lydia and it was clear she just needed some mommy time.

We have a different circumstance then many medical families in that both of our kids have the same thing. We choose to look at that in the positive that in that way they can relate to each other and thus support one another in ways other people can't. I don't know what it is like to have a feeding tube but they both do.

But at the same time they are both siblings to a child with a disability.

This week has been all eyes on Jilli. Lydia has had a runny nose a red cheeks for well over a week as she is working on molars. Last week for her sleeping was rough. She had one night where she mainly banged the side of her head into mine for most of the night because her mouth was bothering her. Yesterday I joked while we were at the 2hour wheelchair fitting and trying to keep Jilli ok and Jilli needed a neb and support sitting and I needed to talk to our therapists that Lydia was the rouge child. She just crawled all over the place and I stepped in when she was doing things like trying to crawl into the bathroom.

Jilli has needed a lot of care the past couple of days and that has left Lydi to find something to do and while I always say I am not a cruise director mom, the past few days I have been more hands off then normal with Lydia. Lydia is a really cuddly kid and has had to share her cuddle time.

There are some sibling programs, but the ones the hospital offers are not available to my girls because they both have medical needs. Most sibling programs are only for healthy siblings, which I understand.

But tonight was just a reminder to me that I often think of both of my kids as medically complex but I also have to remember that they are each a sibling to someone who is medically complex and in weeks like this that creates a different dynamic.

I'm not sure if this even makes sense to anyone else, in my sleep deprived adrenaline state this might have been a light bulb moment to me that just sounds crazy, and thats fine... sometimes we need light bulb moments to help us remember to work hard at being the best parent we can even if the light bulb doesn't make sense to others.