Tuesday, August 19, 2014

I Will Catch You

Claire & me  ~  August 2014

A few days ago, I had a minor freak-out moment when I was trying to get a picture of Claire on the couch. Due to her high tone, her legs cross/scissor, and often times, her legs are straight out in an X formation. It's pretty rad looking, but the problem is that the tightness of her muscles have pulled so hard on her hips that they are now dislocated. The good news is that she is not in any pain from this. It probably happened so gradually that she didn't even notice. We monitor her hips/tone/body closely & work with our awesome PT twice weekly to help her with this issue. There are more drastic medical interventions which may or may not help this problem long-term such as surgery, medicines, etc. However, we can never reverse her cerebral palsy or stop her hypertonicity completely. Due to Claire's extreme sensitivities, we are not able to anesthetize her. Surgery is out of the question. Ditto harsh medicines & Botox -- our tiny girl just cannot handle it.

A few months ago we had a consult with a fabulous orthopedic specialist from Kansas City whom we adored. He too agreed that surgery for her hips or spine could be fatal. His exact words to me were that he was "terrified" to put her under for fear of losing her. Not to mention that some kids I have known who have had hip surgery had to have the surgery repeated due to the fact that the tone was never corrected. The muscles continued to pull on the hips, thus creating yet ANOTHER dislocation. I simply cannot take that risk with Claire..

(And I won't even go into details about how much it shatters me that Lola's hips are ALSO dislocated in the same damn way. Fuck these orthopedic issues. For real. Don't even get me started on the kyphosis/scoliosis shit either. Please know that I love every single dislocation, every "imperfect" curve of your bodies, sweet girls o' mine.)

So back to the story... I was trying to sit Claire up for a picture, and she had one leg bent and one leg straight. I tried to wedge her against the arm of the couch that would support her in this position, and she just arched out of it & buried her head, destroying the fabulously cute hairstyle I was intending to photograph in the first place.

So... I restyled her hair, repositioned her this time in the center of the couch, sort of wedging her adorable little teensy head between the two cushions. She got pissed as hell and tried to arch some more, but I kept her contained with bribes & singing some Lil Wayne for her. (Pretty sure the girls love him because they think he's "their people." Hint: keyword is "Lil." LOL!) I slowly scooched (skooched? skuched?! FRICK! Spellcheck highlighted all 3 words, dammit! Don't F with me!!!) her slightly to the center of the cushion thinking this might have a better result because then her head wouldn't be jammed between two cushions, thus giving her the illusion that she can arch back FURTHER. (Did I seriously just use "thus" a second time in this blog post? WTF! Does it make me sound like a badass?!) This diva is hard to outsmart, but I'll be damned if I was gonna back down!

As soon as I sat her in the middle of the couch in the center of the cushion, she actually relaxed & seemed happier there. I grabbed my iPhone like a ninja & flicked the camera button to start snapping, knowing full well that my photo shoot was gonna be a quickie. As soon as I honed in, focused & was ready to snap, I see Claire starting to literally fall to the side. I throw the phone down & grab her before she face plants on the couch. Claire's eyes widened but she stayed in that same position as she tipped over. I sat her back up, took aim again with my camera, and yet again, Claire's nose made a beeline for the seat of the couch.

I watched in disbelief as yet a second time, she didn't seem too bothered by this. I don't know if she reacted that way because she's a daredevil, because she trusts me, or because that was her initial intention - to FALL (AKA - get out of Mommy's Picture Time!). I once again caught her before she "fell" from a sitting position onto her side/face just inches below.

Now, you KNOW I love my girls as they are, where they are, and even if they stayed at this developmental level for the rest of time, I would be PERFECTLY OK with that.  Not sure why I feel like I need to make that disclaimer every time I spew out a fear/concern/worry of mine, but I do. But I think what got me the most about her falling twice was how no attempt was made to catch herself. I am positive she knew she was falling -- her eyes were wide both times & she seemed startled -- but the thought that she was unable to put 2 + 2 together, extend her right arm, stabilize herself on the couch, & stay upright made me sad. I have seen some amazing progress in Claire during PT the past year or so, and maybe that is why I still have hope that someday something as minor as her using her arm appropriately could possibly happen. I don't know...

What I DO know is that my girl is happy. There is no doubt in my mind. I really need to just follow her lead and not "go there" worrying about why her brain doesn't allow her to do _____ or _____. Until then, I will be her eyes/hands/intuition... as best as I possibly can.  I just hope it's enough & I can continue to be all she needs me to be.

My beautiful Claire, I will GLADLY catch you every time you fall, EVERY SINGLE DAY, for the rest of your life if you need me to. I love you THAT MUCH. You are my heart.

Photo shoot was relocated to the beanbag, which was positioned safely on the floor.  Claire "rewarded" me with some classic, typical teenage "PLEEEEEEEEASE PUT THE DAMN CAMERA AWAY, MOTHERRRRRR!!!!" type glares.  OMG, I love this child.  SO MUCH.

“I love you without knowing how, or when, or from where. I love you straightforwardly, without complexities or pride; so I love you because I know no other way.”- Pablo Neruda



Beanstalk said...

Lovely Claire-- I vote that she just trusts you that much. Plus she was over the photo shoot.

Daniel's never once caught himself either. Not going to happen. So we'll be his safety net and catch him before he faceplants. It's a mom thing.

Anonymous said...

You are a such an amazing mother. The love, dedication, and faith you have in your children is so inspiring. Your daughters have beaten all of the odds so far, and I bet they will continue to knock down all of the obstacles in their path.

A few weeks ago I found your blog and youtube channel, and it is amazing how much they have progressed over the years. Claire is doing amazing in PT! She has made so much progress in a very short amount of time. She is becoming very expressive, her personality is really showing. Lola is looking a lot more aware and responsive, especially in your recent videos. I think she is really beginning to understand the world around her, and her personality is shinning through more as well.

You are doing a wonderful job of caring for them, and you are giving them all the love and support they need. All of what I just said is proof of that.

momsmom said...

When I go to church, I trust what my pastor says because I believe in him that much. When I go to my Dr, I trust what she says because I believe in her that much. When you do what ever it is you are doing with the girls, I think they just trust that you are doing everything right because they believe in you. You are doing a great job. Just have to trust and believe in yourself.

Vanja said...

So damn cute. I can´t tell you enough how adorable your girla are. If I would live in your neiborhood, I would crawl on my knees to get a chance to babysit and play with them. I could eat them both up <3

Vanja from Frankfurt, germany

Anonymous said...

Hello Gwen, from Beth in CT.

I think I may have posted comments on your Facebook.
I feel as if I know you, and I feel the love for your children.

Having never met you, still, I know you, I know the overwhelming love that you have for your girls, and I have for my girl.

I visit your blog at- least twice a week.
This video of Claire is very special; she is a very special girl.

And Lola! I wish that I could come by and hold her all day so you could sleep, get a facial, mani- pedi- anything. And I would just hold and snuggle Lola as long as you'd like. (I'm an RN, mom of four, and have snuggled lots of kids )

Nothing much to say. You have shared so much that I feel as if I know you.

I think it's time that I introduce myself.

I am Beth Huntington, and, from so far away, I send love to you and your family.

BTW, Cal is a rock star.

Gwen said...

@momsmom -- THANK YOU FOR THIS. I mean it. THANK YOU SO MUCH. xoxo

Gwen said...

Thank you ALL so very much for the kind words & for the reassuring comments. It really means SO MUCH. HUGS from us to you. <3 xoxo

Anonymous said...

When you are with her in the sofa and you stare at her eyes:

Can you feel how she talks with her eyes and say: mum i love you?

That must be a beautiful moment

You are a brave mother!!

Smith said...


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