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.
As 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.
As 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.
#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