Tiny Feet

There are some really beautiful and amazing days with Alexandra, but there are some really awful, painful, difficult and gut-wrenching days with Alexandra as well.

Today, yesterday and the day before (for that matter) were some of those hard days.

Why, you may ask? I mean, you’re right, we have recently posted photos that capture our little angel with the brightest of smiles on her face. What’s so difficult and gut-wrenching about that, right?

Photos are funny things you see, they capture a snapshot in time, a moment preserved for others to see….a moment that we want others to see. Alexandra is a happy baby, she really is, but there are so many other painful moments in between those snapshots.

sam_6334webAs I type this, Alexandra lies on the floor next to me. She is 20 months. Pitt Hopkins Syndrome prevents her from having the motor development to move her body. She does not move to a sitting position on her own, she does not get on all fours, she does not crawl, she does not propel her body to go get toys, she does not walk, run, skip, hop or jump. She is trapped. She can only reach for what is closest and if there are no toys near, she “idles” by rolling to her back, clasping her hands at a midline position and moves her legs to the motion as if she was riding a bicycle. We know now that she finds comfort when she does this. But this is it, that’s her trick.

While other 20 month olds (and younger) are walking, running and just plain moving, she does not.

There is no other way to say this, but it is so hard. Hard to know it takes her so much effort to do such the tiniest thing. I hate Pitt Hopkins. I wish it upon no one.

sam_6265webAs she plays beside me, I look at her tiny feet. Feet that I wish more than anything would carry her. Carry her to wherever she wants to go. I would follow her anywhere. I would give anything just to chase her through the park, run after her as she darts through the grocery store, hold her hand as she crosses the street. 

Truth is, I WILL follow her anywhere, she will lead the way as we push her in front of us.

I know we do have much to be thankful for. She is strong, she is social, she is learning, she is growing, she is thriving, she will indeed walk one day, whether it takes another year, three or five. She will. I know she will. One thing I have learned in these short months, is that Pitt Hopkins kids are so strong, brave and oh so courageous.

But today is just one of those hard days, where the brutal reality of living with Pitt Hopkins hits me like a ton of bricks, over and over again.

Tomorrow is a new day…and gosh, look at those adorable tiny feet.

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#CareAboutRare and help us find a cure to Pitt Hopkins Syndrome.

Please consider joining Alexandra’s Pitt Crew at https://alexandraspittcrew.org/pittcrew/

Learn her story here: https://youtu.be/P-JxvVd0R5g

7 thoughts on “Tiny Feet”

  2. cisforcorinne says:
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    My biggest trigger for mommy guilt is when madeleine is in the floor, on her back, doing nothing. I feel like I’ve been ignoring her too long and she’s bored, not stimulated, not learning, just stagnant. It kills me. Now that she does have the skill of independent mobility it doesn’t happen as often, but still does occasionally.

    I don’t know when Alexandra will be mobile, but I know she will be. Without hesitation I know this is true. Crawling has been the most amazing skill Maddie has learned so far. Watching her world open up to her, incredible! I wish for you and Matt to experience that with Alexandra so very soon.

    Monday at PT, I was working on adjusting a walker to fit Maddie and the PT was filling out an evaluation, so Maddie was free to crawl in the gym as she wished. I looked up and she was making a bee line right over to the uncovered electrical socket in the wall. I had to drop everything and literally RUN to catch her across the room. I’ve never been more proud of her! It was one of those moments when I felt like madeleine was a toddler, not a toddler worth PTHS, just a toddler doing dangerous things, getting into trouble. Sheer terror and pride.

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    • alexandraspittcrew says:
      Reply

      Corinne, your post brings tears to my eyes. Which lately, there are more tears than I would like to admit. I CANNOT WAIT until she crawls and gets into trouble. I just love your story about her beelining it!! WOW! Look at her go! And yes, I too feel the guilt when I have left her idle too long and she just lays there (thank goodness she now finds her way over to a toy most times). Love you friend, thank you for literally being there from the very first day of this new journey for us. Your support and encouragement means so much and Alexandra is so lucky to have Maddie on this journey with her.

      Liked by 1 person

      • cisforcorinne says:

        Let’s get together on Wednesday evening before the conference. I can’t wait to meet you and Matt and Alexandra in person. I fear I may loose it when I finally give you a hug in real life, but at least now you’ve been forewarned.

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  3. Tonia says:
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    I love you Nicole, Matt and Alexandra as I cry tears of sadness and joy for you while reading this please know I listen hard to every word you write/say I understand your pain and yet know how much you love that little girl more than anyone else ever could I am so glad she has you two to lead her through this xoxo

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