In it now.

Hello, world.  Please meet Mira.  Our divine wonder spawn.  We’re Nikki and James, and we’re so excited to finally start sharing this magical journey Mira is allowing us to travel on with her.

Mira has cerebral palsy.  We think, anyway.  We are still awaiting the results of genetic testing; when all is said and done, it will be about a 9-month process from first blood draw to final result.  And the craziest thing is the test may tell us absolutely nothing.  Nothing at all, after all this waiting.  We’ve been warned by neurologists and geneticists that a lot of families with children like Mira never get a diagnosis at all.  Lovely, right?  A potential lifetime of mystery and confusion and sometimes (often times) fear, worry, and heartache.  While all of Mira’s doctors hesitate to formally diagnose cerebral palsy until we get the final results of the genetic testing, all of her therapists immediately identified her disability as just that.

So how exactly does Mira’s disability manifest?  Well, in a lot of really cute, charming, hilarious, and heart-meltingly sweet ways, but also in the following, more alarming, physical ways:

-She has macrocephaly, which is a fancy term for a big ol’ melon head.  After getting an ultrasound through her soft spot and an MRI, doctors confirmed that she has more fluid than average and larger ventricles, but they aren’t necessarily alarmed by either of those things, and ruled out hydrocephaly and anything life-threatening.  So that was an enormous relief, to say the least!  She’s just got a big wet brain!

–Speaking of enormous relief, the days we got to rule out spinal muscular atrophy and muscular dystrophy were some of the happiest of our lives.

-She has been formally diagnosed with hypotonia, which just means low muscle tone, but the reality is she has mixed tone and it fluctuates constantly.  When the term “tone” first started getting tossed around, we had no idea what it truly meant and just assumed she could strengthen (tone) her muscles and everything would be fine!  Baby workout clothes are adorable!  Not the case.  Muscle tone refers to the way the brain communicates signals to the muscles in the body, so in Mira’s case…poorly.  Most of the time she’s “floppy” or described as having a “rag doll” appearance.  Other times, though, like when she’s super excited (like when she sees literally any book ever, feels cool breeze on her face, sees mommy and daddy first thing in the morning, just to name a few), her tone becomes far too high and she displays spasticity, or the more classical form of cerebral palsy.  Think balled fists, super straight legs and arms, and rigid to the touch.

-This comes and goes in waves, all day every day.  This constant (often rapid) fluctuation makes her exceedingly difficult to hold, it is nearly impossible for her to balance, she cannot hold her head in midline and upright for more than a few seconds at a time, and cannot sit or bear weight on her legs for more than a couple of seconds.  At this point, as optimistic as we are, it seems unlikely that she’ll ever walk fully independently, and we’re excited to get her a pediatric wheelchair this year.

-She can kind of hold onto things, but she drops them quickly or won’t let go at all, and has a very hard time grasping them in the first place.  This is getting better with therapy, but it’s definitely a work in progress.

-This bizarre tone situation also means she’s constantly doing weird things with her mouth, has trouble swallowing, and can’t chew, so at almost 16 months old, she’s still primarily bottle-fed.  And she has to drink Pediasure to help keep her weight up, because with all her difficulty eating, she wouldn’t otherwise be able to consume enough calories to gain weight.

-She doesn’t babble like other kids, and we have no idea if she’ll ever talk.  Her unusual tone affects every single muscle in her body, even her esophagus, so we had major reflux issues for about 14 months (another reason she couldn’t gain enough weight).  It affects her tongue and every muscle in her mouth and jaw, so making sounds other than cooing (which is SO freaking adorable, btw) is pretty damn hard for the kid.

-Her MRI revealed that her basal ganglia (the primitive part of the brain responsible for controlling voluntary motor movement) is smaller than average, but not noticeably damaged.  Her neurologist thinks this probably accounts for her muscle tone issues, but again, won’t yet call it cerebral palsy, as she doesn’t display classic CP and possesses no actual brain damage – just discrepancies.

-I had a totally normal pregnancy and Mira seemed “normal” until she was almost 4 months old.  So this was a huge shock, and one that we’re still trying to process most days.  

SO!  That’s Mira in a nutshell, although that description obviously does not do justice to the phenomenon that she is.  The stuff listed above all seems pretty bad and scary, but this kid…oh my god this kid is magic and anyone who crosses paths with her will tell you the same.  She truly radiates light and love, and is the most patient, kind, and curious soul I have ever encountered.  She is shy, sweet, brave, strong, and she is our whole world.

I stayed home with Mira for over a year while we figured out what our family’s next steps should be in securing her the level of care she needs.  We finally got her into an amazing therapeutic preschool in December and I returned to work full-time in late January.  That year at home was rough…sometimes really, really rough, and I honestly didn’t want to talk about it to anyone who wasn’t family.  It became so hard to relate to our friends, and we didn’t know anyone else going through anything like this.  I entertained the idea of starting a blog as a form of therapy, but thought it was self-indulgent and lame, and the idea kind of embarrassed me.

But you know what?  I’M OVER IT.  I deserve to be self-indulgent, dammit!  James and I are so dedicated to our child that sometimes I forget to allow myself to do the things I want to do.  And I’ve decided I want to share our story.

In addition to just sharing updates on Mira’s progress, though, James and I would like this to be a creative, playful space, where we can share our other joys, and remember what made us special as individuals before we had a special needs child.

James and I are pretty damn proud of the partnership we’ve forged on this journey, and not-so-humbly think that we’re a great example of a challenge making a marriage stronger rather than tearing it apart.  We are still madly in love with one another, and still prioritize making time to spend as a couple and alone, pursuing what we love.

Mira Moves Mountains will showcase:

*our adventures both as a couple and with a child with special needs

*thrifty fashion (I had to buy an entire work wardrobe at second-hand stores because this little lady sort of toppled our financial situation, and I’ll just go ahead and say it…I look fine as hell in these dead people’s clothes!)

*adventures in cooking – we both love to cook and are always trying new things

*and my favorite…James’ woodworking!!!  Eventually, James plans to open an Etsy shop, where he’ll sell small wooden objects and hand-made ink pens, the proceeds of which will help us buy Mira’s equipment.

So thank you for being here, thank you for supporting us, and thank you for your patience as we figure out how to be fully present in this challenging and beautiful new world.  

8 thoughts on “In it now.”

  1. Oh Nikki. I can’t even adequately put into words how proud I am of you and James for sharing your story. My heart swells with pride because I know you — and my eyes fill with tears because I have been you. Once upon a time, my husband and I were you and James and I can speak from experience – the love you have for your baby coupled with all the unknowns is completely overwhelming. Thank you for sharing your journey and trusting us with your story. From our own experience I will tell you that the greatest thing you can do for Mira (and you’ve already been doing it so you’re golden) is to be her biggest advocate and don’t always take the first answer you hear as the right one. Sometimes the answer you get will be right — and sometimes you’ll need to trust your gut and take the question to a different person. Everything you said about Mira’s bright and sunny disposition is so true — I only held her once and felt an immediate connection to her. I love every photo you post of her — it’s hard to choose a favorite. I’m looking forward to following Mira’s journey as you share it with us.

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    1. Well this made me sob! Thank you so much, Katy!!! It’s so comforting to hear these words from someone who has been in our shoes. You are such a strong, smart, wonderful woman, and your support means a great deal to me.

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  2. I am so proud of you and James for telling your story. Miss Mira really is a ray of joy, and I’m so lucky to have gotten to know her and her awesome parents.

    I hate that our time together in KC was so brief, but I am excited to share in your journey via this incredible blog!

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    1. Thank you so much, Emily! We should definitely find a way to reconnect in person sooner rather than later. It was such a treat getting to know you and spend time with you. In the meantime, we’re so grateful for your support and glad you’re following along!

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  3. Love, love, love this. And love you all. I am so proud of you both for how you have handled all the tough times. Mira is our little angel girl–so sweet and lovely, such a joy. To quote a song that’s been in the news a lot lately, she “can turn the world on with her smile.” That line makes me think of her. And the next one, too. “Who can take a nothing day and suddenly make it all seem worthwhile? Well, it’s you girl!!” It’s you, Mira!

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    1. That song is so perfect for her! I love it! And we love you so much, too! Mira is so very lucky to have you and dad as grandparents, and we can’t thank you enough for the amazing, generous, unwavering support you’ve shown us.

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  4. My name is Amanda, both of your parents were my teachers at one time, and I have a beautiful 15 year old daughter who has CP. Looking forward to reading about your adventures. You have no idea how much your beautiful daughter will teach you. If I can ever be of help, I’d be happy to. Blessings to you on this sometimes difficult and always beautiful journey.

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    1. Hi, Amanda! Thank you for being here! I will gladly take all the help and advice I can get, so if you ever see a post that makes you think, “Oh my, this lady is clueless!”, PLEASE provide input and feedback! One huge reason I started this was to try to connect with other special needs parents, so I’m already enormously grateful for your support.

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