In our minds, Zoe had cerebral palsy (CP) before she even had a face. We had medical information and MRI images of her before we ever saw her picture.
Because of that, I used to think I'd get a pass on grief in special needs parenting, at least with Zoe, because I never had to reconcile my dreams for a child with a diagnosis that came later. Disability wasn't a surprise that came after we were already in love with her; we fell in love with a little girl who would become our daughter who also happened to have CP. A lot of special needs parenting comes from grieving what might have been in the absence of a diagnosis' limitations, and I thought knowing her disability from the first moments we knew her -- before we even saw a picture of her, actually -- would eliminate that.
I didn't realize that watching other kids her age would sometimes catch me by surprise with a grief that she can't do a lot of fun little girl things that other kids can.
Part of why I didn't expect any of this is that it didn't hit until this past summer. We had two years of Zoe in our family before I met special needs parenting grief face to face. Up until then, when I'd talk or think about Zoe's limitation, I was matter of fact about it and not really emotional. Our knowledge of her needs prior to adoption did insulate me from feelings of sorrow for that a time.
And then I was skimming my FB feed in June or July, and a short video of a girlfriend's little girl on the diving board started with autoplay. I'm a little obsessed with this particular Sunday school classmate of Zoe's, so I paused to watch (whereas I don't for other kids because confession: I find most videos of little kids to be insufferable). This sweetheart is right around Zoe's age but what she was doing was so far from anything Zoe can do. I was overcome with a grief I didn't expect because we all want our kids to be able to do anything they want and because I know Zoe would love to walk to the end of a diving board and jump off but I also know she can't do that now and probably won't ever be able to.
I had to close the computer and let the tears flow and go clean something to take my mind off the sweetness of my friend's daughter's successes.
Before finishing this post, I paused to message my friend whose daughter's antics prompted an surprising grief to bubble to my heart's surface, because I didn't want her to read this and feel like she had hurt me or like she should hesitate to share videos like that in the future. I wrote (with a few edits to remove the identity of the friend because that's not relevant),
I'm not sharing this to make you feel bad at all - actually, it's the opposite! I adore your daughter, and I want you to keep sharing her successes and spunk and sweetness. In the same way that you wouldn't stop posting about your husband if a good friend of yours became a widow, you shouldn't ever hesitate to post anything about your girl or feel bad about anything you've posted because Zoe won't be able to do the things she can. Maybe you wouldn't have ever felt that way, but my biggest concern in my post was that you'd read it and recognize your girl in my story and think you hurt my feeling or something like that by posting the video. You didn't! The broken reality of this fallen world is what breaks my heart, not your precious girl's diving board skills. I love you and her and the rest of your sweet family, and while I think the story of my reaction to her video is one worth sharing to help explain special needs parenting grief to those who haven't experienced it, I wanted to make sure to message you first to share my heart so that you wouldn't read into my words any hurt or offense directed at you - that's not there, even a little bit. I'm actually thankful that God used your video to stir the feelings I didn't know I had because I think it would have hurt more and been harder if it wasn't a precious little girl I love as much as I love yours and a mama I love as much as I love you.
So, please, mamas whose kids are all typically developing, don't confuse our grief with jealousy or hurt feelings or any anger about the successes of your darlings. The realities of this world are what feel like a gut punch at times, not your precious ones and their on-schedule milestones. If we share our grief, we're not trying to make you feel bad for your typical kiddos' wins; we're not complaining about our amazing kids, and we're not seeking pity or praise.
(In fact, many moms have told me they stay silent about grief because of the awkwardness of pity/praise responses. When I talk about my grief for Zoe's disability or for the medical needs due to Robbie's epilepsy or for the stigma that our dear one with HIV will probably face, I'm sharing a challenge of motherhood much like I might also share the frustrations of juggling homework in the evening or the chaos of trying to get everyone out of the house in the morning or the disdain I have for all things potty training except for the end point of that painful process. Just as you'd let the conversation keep rolling when I discuss the latter, please feel free to do the same when I or another special needs mama friend of yours opens up challenges like the grief-related ones I listed. Sure, ours might be a different hue on the spectrum of mothering difficulties, but our feelings truly aren't so different that sharing them should bring ordinary conversation to an awkward pause or complete halt!)
This is just part of the parenting journey for most all? of us who are raising children with special needs or continuing to support them in adulthood. The joys, oh, they are plentiful for us! Our pile of stones of remembrance from all God has done in and through Zoe is greater than we ever imagined. But I'd be lying if I presented our lives as all cheer and no challenge, because that's just not reality.
And speaking of cheer, I'm getting through this week's grief by breaking out the Christmas music and decor before December, which I NEVER DO but this week my heart needs a little more tinsel than tradition and a little more What Child Is This than routine to help me prepare to have a heart of Thankgiving. Because while grief is sometimes part of our lives, it's not a place I want to camp out for too long because it's a wonderful world even in brokenness.
