Our Stroke Story

 Recently, a reader named Hilary left a comment on my post about Big Cutie getting her new leg brace.  She asked me a question and mentioned she also had a daughter who’d had a stroke.  I went to her blog and couldn’t stop reading.  It was almost spooky how similar our stories were.  I felt compelled to contact her and reach out and say, “hey ~ I don’t know all the answers, but here we are about 8 years down the road from you ~ if there’s any questions I can answer or ear I can lend, let me know.”  Because when Cute Husband and I first heard the words stroke and Cerebral Palsy we felt incredibly alone.  And scared.  And overwhelmed.  Really overwhelmed.

And so Hilary asked me to tell our story.  It’s been a long time and I can feel my heart tightening just as I get this far into it.  But here’s the good news:  I know something with great confidence I didn’t know all those years ago.   I now know that our story ends up being one of happiness and joy and all sorts of very wonderful things and that my days are filled with way more “normal” than I ever imagined.

When Big Cutie was about 6 months old I was at her checkup answering the usual questions and made a flippant comment that she was “a lefty like her Daddy.”  The pediatrician explained to me about handedness not showing dominance until the toddler years and asked me to watch it more closely.  By her 9 month checkup I was concerned.  I had an active playgroup of similarly aged babies, and also attended weekly Gymboree classes; as we started to get to an age where there were physical milestones, Big Cutie didn’t seem to be doing what all the other kids were doing and was clearly now using just the left side of her body and not her right.  The pediatrician again said we’d watch it and reminded me that all children develop at their own pace.

The weekend before Big Cutie’s 12 month check up was her 1st birthday party.  There were about two dozen babies there, all actively crawling, cruising and walking, except Big Cutie.  She was Army crawling in circles using only her left arm, and continuing to not engage her right side.  Despite the joy of the day, I struggled in my heart, knowing something simply wasn’t right.

At this point the pediatrician did agree there was cause for concern and recommended we see a neurologist.  I came home and called an ex-boyfriend who is a pediatrician, and through my tears asked him why we’d possibly need to see a neurologist for one-sidedness and he answered that it sounded like Cerebral Palsy.  I was so gob-smacked by those words that I hung up on him and promptly went and threw up.

In our city, we couldn’t get an appointment with the pediatric neurology group for at least 4 months.  There’s no way we could live with waiting that long and called in a favor back in our hometown with my godfather who said if we could get to DC that weekend he’d have us in with a colleague first thing Monday morning.  And so we did.

We met with a great Neuro who gave Big Cutie a thorough exam, reassured us we hadn’t been imagining things and asked us to get an MRI upon our return home.  We scheduled it right away.  Within about 24 hours of the MRI, our pediatrician called me at home with the MRI results and explained they showed Big Cutie had suffered a stroke and that the resulting diagnosis was something called hemiparesis.  He also explained the “umbrella category” of Cerebral Palsy and we started talking about different therapy options.  I scribbled notes as fast as I could and called Cute Husband who came home from work and we pretty much silently watched her asleep in her crib and reminded ourselves that nothing was going to change the fact that she was still our daughter we loved to the moon and back and we’d do anything and everything we could for her.

The next day I started making phone appointments.  Within days our life had changed and we had started weekly Occupational and Physical Therapy appointments.  Big Cutie actually met her Occupational Therapy goals rather quickly and was “released” within about 2 years when she could essentially feed and dress herself and attend to her own toiletry needs.  She might possibly have been a “natural” lefty since both Cute Husband and his mother are, which could explain her OT success; we’ll really never know.

Physical Therapy, on the other hand, has been the heart of a our story.  PT facilitated Big Cutie’s first leg brace immediately and she has received a new one approximately every six months since then.  Big Cutie received her therapies at our local hospital and her therapist used to joke that she was the poster child for early intervention success.  She was a PT star!  She never gave less than her all, LOVED going and all of the Therapy Department there watched our family grow.  There were several times I helped in a therapy session with one arm while nursing Little Cutie with the other.  PT was our home away from home for more than five years, and we owe all of our success to two things: Big Cutie’s tenacity and her amazing therapist, Miss Carla.  Miss Carla was more than just an incredible Physical Therapist for Big Cutie.  She was our partner and teammate in our challenge, she was my cheerleader at my low points, and most of all, she was our friend as we learned what it would mean to have a child with special needs.

So here we are now.

Big Cutie is 9 1/2.  She has been “released” for a few years from all of her therapies.  She has worn a leg brace for more than 8 years and will most likely continue to do so for the rest of her life.  That was a hard pill to swallow at first, but it’s simply a part of life now and we’re all pretty OK with it.  Yes, she fusses on occasion, but she’s a kid; she fusses about plenty of things on occasion, and it’s a sure sign to me that she really has accepted this that she doesn’t complain about wearing her brace any more than she complains about having to make her bed or that it’s her sister’s turn to choose what TV show to watch.  We don’t “hide” her brace; it’s a part of her.  We celebrate “New Brace Day” with special treats and a big shopping spree for new shoes twice a year, and she loves to show off her new apparatus to her friends and classmates.  In fact, just this week, Little Cutie confided in me that she was jealous of her big sister for having so many great ideas about cooking.  She was rather upset, and in talking to her about it, I reminded her that there just might be some things her big sister is jealous of her about and maybe she could think of one or two.  All Little Cutie could come up with was that she makes new friends very easily.  Being more physically able wasn’t even on her radar.  As I said, the whole wearing a leg brace thing is just a part of life in our house now.

We’re blessed in that we happened to have moved within two hours of the #1 ranked pediatric neurology department and Stroke Clinic in the country.  And her new Neurologist just happened to have interned with the godfather who got the ball rolling towards a diagnosis in the first place {cue “The It’s a Small World” music, please}.  We’ve learned some more information even after all this time, and we’ll continue to travel there to make sure we’re staying on top of every opportunity possible for Big Cutie.

There are new challenges for Cute Husband and I now.  How much do we guide her towards “safe” activities like art or music and how much do we let her try to join in on sports when we know it’s a struggle and her peers are showing more and more athletic prowess?  I worry about things further down the road even now, like will she ever be able to drive, even with an adapted car?  How will we find shoes that fit her leg brace she loves for her Prom?  Will pregnancies be harder for her?  We really don’t know any of this yet.  Only time will tell.

But here’s what we know.  She’s funny, thorough, punctual to a tee, intense, passionate, tenacious, compassionate, helpful, loving, sassy and loyal.  And oh yeah, by the way, she happens to not be able to fully use one side of her body.  On my most rockin’ days I don’t work as hard as she does.  Her middle name is Grace, and I think she embodies that name heart and soul in the way she carries herself and her challenges in life.

There are many people I admire and respect, but Big Cutie is my hero.

So why am I sharing this?  When we first got a diagnosis and began researching pediatric strokes, hemiparesis and cerebral palsy it was information overload.  I joined bulletin boards and online support groups but nothing seemed to be the right “fit” for our family and our situation; no one else seemed to have a story like ours.  I couldn’t really find a place to ask my questions and share my concerns.  And so I’m sharing our story in hopes that somewhere out there if there’s someone that just got a phone call from their doctor with some scary news and they’re feeling lost and alone, they will stumble upon this and I might be able to offer some help.  As I said at the beginning, I don’t claim to know all the answers, but I know that we have been on this journey awhile now, we’ve learned a few things along the way, and we’d love some company.

If you’d like to learn more about children with strokes, please check out these links!
Kids Have Strokes Fact Sheet
Hemi-Kids
Pediatric Stroke

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17 Responses to Our Stroke Story

  1. Kristin says:

    I enjoyed reading Big Cutie’s story. My oldest has Autism so our stories are different. She graduated from PT quickly but OT is at the heart of our story.

    But I think there is always a moment that you look at your baby and your heart screams “there is something wrong with this baby” and your heart drops.

    I think we all have that moment.

  2. AJ says:

    Thanks for sharing and please know that you are not alone! Keep doing what you are doing… you will find the older she gets the more she will excel and overcome. My daughter had a massive stroke at age 7 and back then (19 yrs ago) the medical data and awareness was just not there (her entire left side brain was effected except for 7% of her front lob). We were at such a disadvantage in the standard of care she needed. We found a Pediatric Neurologist who took our case on pro-bono and never let up and her brain did amazing things – her right side took over for the lack of the left side and many things they said she would never do she began to do. The left side of her body was impaired with all of the text book stroke impairments (arm tone took over and she has no use of arm/hand and leg/foot gives her a bad limp) but my husband and I were determined to help her get into the main stream and to STAY in the main stream. It was a struggle for her and still is as an Adult, but she had so much determination and fire that you couldn’t help but lift her up and let her be anything she wanted to be; a cheerleader, amazing art student and we feed her passion for photography. She is now 26 and married, has a 3yr old son and is now expecting another baby in Sept and despite her impairments she is an amazing Mother, Wife, Photographer and Person. We had and still have the same concerns you have for your daughter. Of course, each child is different and faces different medical issues but the beautiful Grace of God and the Power of Prayer is what helped us rise above the medical issues and lift our princess up for healing. God bless you and your family and remember to walk in faith and you will be amazed at what blessings and miracles that will cross her path!!

  3. MrsTass says:

    Thank you for sharing your very personal story. You have a beautiful family !!

  4. Thanks for sharing! You are doing an awesome job!

  5. Nora says:

    Thank you for sharing! I have a 19 month old with CP and her right side is also her side that is weaker. She is quadraperesis at this point. Thank you so much for the encouragement! Your Big Cutie is just precious!

  6. I’ve been perusing the various blogs posted from Kelly’s Korner on special needs. I happened upon your blog and just know that I’m looking at one of the girls that was on the Oct ’01 boards on Babycenter way back when! Is that possible? She is as beautiful as she always was and I’m happy to hear doing so well!

  7. Meredith says:

    My youngest is 4 and suffered a stroke in infancy… It is so nice to find a blog of a child who is doing so well. I’ve met mothers of newly diagnosed babies, and spoken at MOPS meetings, about our experience but I have never met another family with such a similar diagnosis who was older than my child. Thank you so much for linking up! You have given me encouragement and hope:)

  8. Niki says:

    Hopping over from Kelly’s blog. My husband had the exact same thing. They say his stroke was caused because his birth mother was on drugs, but we will obviously never know the truth. And thats okay. So many things could’ve happened differently. I love to hear stories of Cerebral Palsy children thriving… because I KNOW all they can accomplish in the end. I can’t possibly imagine the emotions you go through as a parent, but as a wife, I am SO thankful his mother did every therapy she could get her hands on. I honestly didn’t know about his CP until we had been dating about 2 months. I realized he favored his left hand, but had always assumed CP meant wheelchair bound. I know it can mean that, our flower girl in our wedding has CP and is in a chair most of the time, but I’m so thankful he hasn’t encountered that his entire life. He is brilliant and very active. He mountain bikes, plays soccer and runs 1/2 marathons. I couldn’t possibly ask for a better husband to love and support me. I am praying for your beautiful, sweet little girl.

  9. Hilary says:

    Thank you SO much for your story. I know it’s so hard, I cry telling Blayke’s story and I cried reading yours. Your daughter is an inspiration. I honestly believe, just like you said, we are about 8 years behind you. I’ll be honest when I saw all the similarities and that our girls started wearing the same exact ankle brace at 14 months old, I was a little freaked out. BUT, now I am glad, I have realized that this is a part of her life, it’s not just going to ‘go away’ by the time she starts school, etc. It doesn’t change who she is though, she is the happiest little baby, I would do anything for her! I appreciate your daughter, please tell her there are little ones just like her and that they, and their moms, are looking up to her! (and I look up to you! I am still learning how to be a mom to a child with a disability, it’s not easy).

    BTW, would it be alright if I posted this on A Baby Stroke.com?

  10. gena says:

    Recently discovered your blog and fell in love with your Cuties and all your nifty and creative projects. Tonight, I was bored and was perusing blogland and what do I see – an AFO on your Cutie ! Of course I had to go back into the archives and figure out why this seemingly “normal”, average and adorable little girl wore ONE AFO – lol !

    My son wears two…. also because of a stroke, but a very different situation than your adorable Cutie. When he ( and his twin ) were 15, they got the flu. Joshua got better and Jacob did not. The virus invaded his heart and he went into complete heart failure. When he crashed he stroked and has been disabled ever since. He was in a coma, came out of it and fought hard, against all odds to survive. He had 2% heart function for over 18 months. He needed a new heart, but because he was now disabled, they would not list him. Mommy, however, would not stand for such a horror and finally 4 days after their 17th birthday, my boy received the gift of life.

    He is now 3 year 7 months post transplant and working hard to regain his physicality and independence. He can stand with assistance and we have hope he will walk again some day (a walker, crutches, a cane……. anything is ok with us !) His AFO’s are camo print. Sometimes I wish he’d gone with a solid so they wouldn’t look so “loud” when he wears shorts – lol ! At 20, he’s 5’8 and 185 lbs, I doubt he’ll be growing, so he’s sticking with these for a looooong time !

    I’m not sure why I told you all of this, except maybe because seeing your adorable Cutie looking so CUTE and active (climbing that wall ????? WOW ) gave me hope for my boy.

    thank you for sharing your gorgeous family,

    gena

  11. Beccah says:

    Did your daughter have cerebral palsy in utero or was her stroke after she was born?

  12. I found your blog from Kelly’s Korner link up from 2011. I look forward to getting to know you… as we just adopted a 2 yo with CP who had an intra-uterine stroke.

    I hope we can stay in contact and support each other.

    Thank you,
    Hannah

  13. Pingback: A Whole New World | Felt So Cute

  14. What a scary story with a happy ending. I know she’ll be fine no matter- she’s a great kid with a wonderful and supportive family.

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