Hi, wonderful peoples. Still on vacation, wish you were here...to babysit. He, he. Today's guest post is from the supercool Sarah over at Baby Stroke Steps. She's mom to Avery, who's 4 and like Max had a stroke at birth, and baby Gavin. She's a lively writer who also takes gorgeous photographs. Welcome, Sarah!
There's a fine line between being a protective parent and being a paranoid parent. And as hard as I try to stay over on the sane side, more often than not, I'm riding the crazy train. It's not something I'm proud of. I mean, who actually likes being "that mom?" I hate sounding like the overbearing parent with a million questions and even more concerns, but for many of us with special needs kids, I think it simply comes with the territory.
Ellen's recent post about hopes and dreams for our children got me thinking and I was happy to realize that I have "real" dreams for my daughter. We always tell her she can be anything she wants -- a doctor, a scientist, a musician... anything. And I truly believe she will be whatever she wants someday. (Although, to be perfectly honest, the other day she told me she wants to be a mermaid. A purple mermaid. We hope she changes her plans a bit between now and high school graduation). Talk of the future seems so natural now, but thinking back, I wasn't always that "real" or hopeful.
When Avery was born, she seemed perfectly normal (as much as I hate that word, that's what she was to us--normal). She was our first, so we had nothing to compare her to. She cried a lot, but babies do that, right? She held her hands in tiny fits...but babies do that too, right? Then we realized it was just one tiny fist. And she barely slept. And it seemed like she never stopped crying. After firing our first pediatrician for not taking us seriously, we found one who did and who recommended we see a neurologist. After a freighteningly long evaluation, he told us she'd had a stroke.
That day snowballed into countless tests, appointments, and, of course, expectations. Scary, horrifying, depressing expectations. I remember calling friends and family with the news like we'd had a death in the family. And essentially, that's what it was -- the death of our hopes and dreams for her. It sounds dramatic, but the way those doctors talked, we'd be lucky if she regained any sort of speech (she's missing 3/8 of her brain, and the speech center is completely wiped out), who knows when she'd walk, she may have learning disabilities, she may never drive due to poor eyesight, and we could never let her play sports because of balance issues and the possibility of head injuries.
We're incredibly blessed that Avery's CP is mild. Her clinical diagnosis is right hemiparesis (her hand is more affected than her leg), she wears an SMO and will probably get OT and PT for the rest of her life. But she's so much more than that and she's proved so many doctors wrong. She now scores above average on speech evaluations, walked at 14 months, is incredibly bright and doesn't qualify for special ed, can spot a speck of dust a mile away (seriously, she really could find a needle in a haystack), and is a wicked good soccer player.
I may not know what caused her stroke or if there's anything we could've done to prevent it, but I do know that with the umbrella term "CP," doctors are stabbing in the dark. Every baby, kid and adult with CP is massively different, and they are hardly ever right with their predictions. So I've managed to block out all the dismal expectations and predictions, and when I talk about her future, I have no worries. (My husband and I joke that she'll be the one at Harvard, while our non-CP child is living in our basement at 30.)
But... I'm a mess when it comes to day-to-day stuff.
When we take a walk, I panic because I'm afraid she'll trip and crack her head open.
When she trips, I gasp so loud the entire neighborhood hears me.
And when she falls, I'm the one crying; not her.
If I could send her into the world in bubble wrap and a helmet, I would. With almost everything she does, I say, "Okay, but be careful." And I overanalyze, overplan and overthink everything.
Last week, my husband came home after picking her up from school and told me there was a field trip this week. At an indoor playground. And they were walking there -- one mile there, and one mile back. Normally, I'd flat out say no. But now that she's 4 years old and is creating real friendships and memories, we're really trying to make sure she's allowed to be a "real kid" by participating in this sort of thing.
I initially said, "I'll drive her there and back so she doesn't have to walk." But after he gave me "the look," I said, "Fine. I'll just ask if they need a parent helper." (I figured that way I could keep an eye on her, and be there -- with a first aid kit in hand -- if something happened.)
But after sleeping on it, I decided (against what feels like all my better judgement) to let her go solo. On her own with her friends. One mile there and one mile back. I'm trying to tell myself that even if she falls and hits her head or scrapes her hands, she'll be fine. It's not life or death. But in all honesty, I'm nervous. What if she falls and breaks her affected hand? Even worse, what if she falls and breaks her good hand? Or what if she hits her head and has a seizure -- or God forbid, another stroke?
I know it's a slim chance of that happening. But if you're like me, you don't put much stock in chances and percentages. The odds of prenatal stroke is about 1 in 4,000... and yet it happened to my baby.
In talking to Ellen about this though, she said she operates under the "if his NICU experience didn't kill him, nothing will" belief, which is awesome. I really wish I looked at things that way. But, for me, learning that Avery suffered a stroke in the safest place on earth -- the womb -- not only left me with a bit of guilt, but also an uncontrolable urge to protect her at all costs in the outside world. One specialist told us that she would have died had her stroke occured any earlier. It scared the hell out of me -- we'd almost lost her once. I'm certainly not going to let something like that happen again. I'm not God, but I can't imagine the guilt I'd have if I felt like I didn't do everything possible to keep her safe each day.
But, she's not a baby anymore. She's growing up, exploring and learning things on her own. And all odds aside, I know I've got to loosen the reigns a bit -- for her sake and mine. I can only protect her so much and for so long. And if I don't start now, how will I ever cope when she leaves for Harvard? :)
How do you personally deal with your child's special needs? Are you like me, pushing the line toward paranoia, or do you just roll with the punches (and bumps and scrapes)?
