Monday, February 28, 2011


So I'm still trying to make sense of where we're at. I don't treat my kids any different post-diagnosis than I did pre-diagnosis. Yet, it feels as if something has shifted in my understanding of my life, my children, and our future.

I have more patience with their meltdowns because I know it stems from their inability to process it all. There's more understanding when things get crazy and I have one toddler banging her head, another throwing herself backwards and bumping her head before I can catch her, and a third one just flailing and crying. It doesn't help that they pick up on one another's cues which obviously makes every meltdown an epic fail in our household.

It's challenging for me to ascertain when they're just overtired like typical kids, or melting down like typical kids, versus something more going on. Post-diagnosis, they don't get away with more, but they do get more empathy while we're in the thick of it.

I also feel curiously validated. I wasn't just imagining some of their struggles. My concerns have certainly been dismissed by our pediatrician, our friends and family. In fact, our pediatrician didn't think it was necessary to send Ada for an eval with a neurologist, but because our PT insisted, I persuaded our pediatrician to give us the referral "just to rule things out."

After we received the first diagnosis, our ped didn't call or follow up. After the 2nd and 3rd diagnosis, again, nothing. Needless to say, I have changed pediatricians.

What was just a vague but persistent idea of slight atypicalness now has a name. There were things that I noticed, and wondered about, that I now know are related to paraparesis and hemiparesis.

The head lag they had as babies. The lack of protective reflex when they fall backward. The side preferences that Julia and Emma display. Little feet turning inward when walking. Standing on tiptoes. Ada's little legs caving in under her like jelly. She doesn't lose her balance like a tree being felled, she just kind of implodes like a building being detonated. It breaks my heart for a nanosecond, until I see her pushing herself back up and marching on. Determined.

My kids get tired easily. They sleep more during the day than other kids their age, always have. It's certainly a preemie thing, but it's also a Cerebral Palsy thing. Sometimes they flail more. They bang their heads when they're frustrated. They wipe out more than other kids learning to walk.

All of this adds a little more stress, and a little more self-doubt. I am already outnumbered, but there's nothing that makes you feel like an awful parent more than your kid getting hurt. My inability to protect them from themselves is what I struggle with most.

I am usually a step ahead when it looks like they're headed towards trouble. You know, walking towards a toy that they can trip over, or headed towards a ride-on toy that can slide away from them as they try to climb on, or sticking out a hand to pull hair/poke their sister in the eye/grab their sister's nose. That kind of thing. However, the suddenness of some of their frustrations and exhaustions escalating to a head-bang on a wooden floor, or a fall backwards on a hardwoord floor... that's the stuff that scares me. Because I often can't predict it, or hold all 3 simultaneously.

It's also weird in a sense, because they are so mildly affected that most people wouldn't even know they have this diagnosis. That's both good and bad. Good, because they most likely won't be treated any differently, and will be able to live independent lives. Bad, because they may need a little help and may not get it, because people won't realize they might be physically incapable of doing something other kids take for granted.

They may struggle with scissors and writing when they're older, or have trouble playing the piano. They may trip and fall more often than other kids. Their fine motor skills may be delayed. Or not. We just don't know.

All in all, I'm finding my way back to optimism, with sprinklings of gratitude and a dash of "I can handle this" mixed in with the worst-case uncertainty. I'm still working on letting go of the guilt. Check back in about 20 years on that one.


Kahla said...

I can tell that your girls will never lack (in education, caring, accomplishments) because their Momma is awesome. I can only imagine how difficult this is, but I have no doubt that you'll find a way to handle it just fine. Your love for your girls shows that!

Mrs. Gamgee said...

I don't have any words of wisdom... I can only offer to listen. I'm 100% sure that you are doing all you can. This is a big thing to process, and I can't imagine how it affects you on a day to day level. I think 'coping' is a good word, and its an ongoing thing.

I'm sorry this comment is so rambling. Just wanted you to know that you aren't alone...

'Murgdan' said...

Not that I am an expert by any means...but I read a few articles on this after reading your blog. The amazing thing is that mild CP is usually diagnosed so late that kids don't get the treatment or therapy that makes such a difference until much further on. I think the wonderful thing is that thanks to your fighting to get them in to the neurologist and your being in tune with all of these 'not quite rights' that got them all diagnosed early so that they get the intervention they need, which I read makes a HUGE difference when started this early on in the game.

I think you're doing wonderfully...and I can only imagine that having this diagnosis gives an answer to lots of question marks you had rolling around in your head.

Hang in there. One step at a time. You are a good mother who will make it all happen.

My Endo Journey said...

I'm just catching up. I just want you to know how sorry I am for all of this. But, how amazed I still am with your courage and strength during all of this. You are a wonderful mother and this isn't going to slow your family down. Just another bump in the road. Many prayers and thoughts to you and your beauitful family!!!

Shelly said...

I can tell you are coping well! Good for you! The girls are lucky to have you as their Mommy!

reiwaz said...

Wow, this post is wonderful. You saw it all well, what has happened, and what may happen. I am glad you trusted your gut, and that you will be there to fight for them, and help them fight for themselves.

mekate said...

Catching up and catching my breath at your recent news.. holy crap, so much to process, but so much affirmation too:good for you for trusting yourself and being such a brave advocate.

sending love to you and your wonderful beautiful magical kids,


A Nutchell said...

I can't even fathom how difficult it must be for you and at the same time, you handle everything with such grace. Your girls are so lucky to have you as their momma.

thinking of you!

Anonymous said...

Yes, this is the wonderful life of having children! Keeping mommy and daddy on their "worry-toes". I have read backward from your most recent post and I agree CP Kiss my....! They all appear to be doing marvellously and are still young - and have one another to imitate and learn from. Sure there are lots of things which may or may not manifest or be true to form down the line. The struggles are endless - healthy kids or not (1, 2, 3 or 6). It's the little surprises along he way that help in our understanding of the uniqueness of each little person and to bring that out in them, as you do so clearly - is a gift. The struggle will ease as the girls words pour out more. Miss A has only really started talking more and she is 2 1/2 - SO way to go Momma. Mr T on the other hand has a def dx ASP! So we are in the process of IEP's and the process of transitioning to mainstream about anxiety. It is tough - and so are we.....just have to take a day at a time and do as you are doing and take delight in their little advances along the way.