I wore the thickest pair of rose colored glasses after Abby was born. It wasn’t wrong, and I think to a large extent it was my own naivete and denial. I patted my own back as I said, “Well, I’ve done special needs before with Casey’s autism, I can do it again. I got this!”
But “again” was the wrong word, and as I’ve spent a few more years doing this special needs thing with yet another child, the more appropriate word…the word that carries the real weight of what we’re dealing with is: “too.”
I figured I that I would be okay because I knew my way through Early Intervention. I am well versed in IFSPs and IEPs and all of the other acronyms. I had already had been schooled by life in special needs. But I hadn’t been in Down syndrome. And definitely not in having one with autism and one with Down syndrome, too. I saw the two disabilities as separate from each other. I didn’t think much about doing them at the same time. I didn’t see that they would be added to all of the “regular family” issues we deal with our two neurotypical kids.
Day to day, there seem to be a million little issues. The big issues come, and are mostly related to Abby’s health, but basically, what we are dealing with are small things. Too many small things. Today Abby had her post- op appointment with her ENT. We then scheduled an appointment for another swallow study, sleep study, and another appointment with him before we schedule the surgery to fix her laryngeal cleft. He said he’d work on moving her hearing aid fitting up with the lady who did her ABR and let me know. Tomorrow I have to call and get ophthalmology appointments for Casey (he’s starting to have a little bit of a lazy eye) and Abby. I will make a call to get her in to see an orthopedist because it looks as though she has hip dysplasia, along with the issues she has with her feet and ankles. Her immunology appointment is next week, and Casey’s appointment with the Developmental Behaviorist is the week after that. All four kids have dentist appointments and their yearly physicals in the next few weeks, too.
It’s a lot of appointments. It’s a lot of little freakouts by Casey at home. It’s a lot of frustration by Abby because she can’t always tell us what she wants. It’s a lot of Yo Gabba Gabba turned on too loud so that Abby can hear it.
And, quite honestly, it’s a lot of random pangs of sadness for me. I’m not a sad person and my kids aren’t to be pitied. They are happy and are going to have great lives. There just are times where I’m sad that it’s not the lives I had planned for them. Where I have to deal with what could have been and what is. The tears that came out of nowhere when I was in Toys R Us and realized that no matter how many baby dolls we buy Abby, she’ll never be a mother. The pain I feel when I visit the school and find Casey eating lunch alone. The weight I carry that I’m not quite sure how to take off, or if that’s even possible. And I know well that this isn’t about me. That some might see this ache as selfish, which is fine. It’s real, and something that I have to deal with, too.
Along with the million little hard things, there are enough freaking amazing things that keep a quiet balance of joy in our home. When Abby learns a new sign or when Casey makes a new friend who loves him for who he is. When Carter makes the basketball team or when we found out that Peyton is “gifted” (and also so super crazy). I wouldn’t trade my life and what I’ve learned. I wouldn’t trade the person I have become or even the little people I’m watching all of my kids become. Our family was meant to be this way. I believe that. And no matter how hard things get, it is all offset by the big hunk of a man I call my husband. He makes the hard days not so hard, the good days great. He deals with everything that comes at us much better than I do. With ease, and with patience.
And he has to deal with ME, too.