Any parent who has been blessed with a child with special needs understands the commitment it takes. Our unique children require a lot of time— Hart has five therapy appointments a week (on average), plus he deals with a lot of frustration that manifests through his behavior.
I feel bad saying this but I’m going to because I think it’s important: the time and energy spent with Hart is like having two children wrapped into one. Hart has a brain injury called Periventricular Leukomalacia (click here to read my blog about his diagnosis) which mainly affects his motor function.
But I also have two other children.
Researching new and cutting edge therapies after my kids go to sleep coupled with devoting my time to Hart’s appointments is more than a ridiculously time-consuming full-time job: it’s emotionally draining and very personal. Alternatively, I often reflect on the guilt I carry for not being able to devote the same amount of quality time with Aspen and Hayes. Case in point: Just today I realized Hayes barely leaves the house. He’s 18 months old. I just realized this. *Cue palm to forehead and insert massive tinge of guilt.*
Let’s drive it home: I’ve been wanting to get Aspen into gymnastics or piano but I don’t know how I can possibly make the time to shuffle her around. So she doesn’t have any extracurriculars despite her desire for them.
Need more guilt? Here’s some: Another day passes and I realize I haven’t worked with Hart on his therapy exercises. In addition to these daily juggling acts, much of Hart’s treatment has occurred out of state. This is a huge sacrifice for our whole family as we have to weigh keeping us all together versus splitting up in order to stick with Hayes’s and Aspen’s familiar routines. I’ve done it both ways and keeping us together is better… but that’s more expensive, MUCH more expensive. And then I need full-time childcare just to watch Aspen and Hayes while I’m doing treatment with Hart… but then I’m not spending time with them and they become needy for me… Hart gets jealous because he’s used to having me all to himself. And I’m just exhausted!
If it seems like I’m rambling it’s probably because I am. My life with a child with a disability feels disorganized no matter what because it sometimes sucks my ability to mother bone dry. Despite our love for Hart, our desire to give him everything we can to help him to succeed, despite our sacrifices great and small, there’s always something we could do better. Not to mention that many people on social media love to police my parenting and tell me how I could do it better and that certainly doesn’t help me feel better about any of this.
As my kids’ mother, I must make decisions for them and also for the greater good of Hart.
It’s a large task to carry but I know any mother can relate, and mamas of kids with special needs you hear me loud and clear, but mamas of multiple kids with one with special needs I know you’re raising a nice tall glass of Charddonay (hint hint!) to me in solidarity.
So, what’s the answer? How do we balance the guilt? How do we pay more attention to our other kids? I’ve no clue. We do our best and we survive one day at a time. We got this. Right?