Progress our Progress

At the Women's March in Chicago I found someone who had made this poster and I had to get a picture with it.
At the Women’s March in Chicago I found someone who had made this poster and I had to get a picture with it.

In the middle of the insanity that is our country right now we are being inundated, doing the inundating, and generally cramming political actions down everyone’s throat.  Anything that doesn’t pertain to our new president and his 19 executive orders, his cabinet made up entirely of oil billionaires, and his barrage of attacks on our media, feels worthless, insignificant, almost stupid.  Like really, people are being banned from entering our country based on their religion but I’m supposed to care about a scribble drawing made by your 6 year old?  OMG I really don’t right now. Please stop.

I feel badly for people posting about anything outside the topics listed above and know that this just isn’t the time.  Maybe a small personal share here and there that is witty and thought provoking, but for the most part, just leave it alone.  And if you are on vacation somewhere stunning and beautiful, well, you just don’t really exist at this moment since in order to be a part of the action you need to be here, physically and mentally.

And then Craig pulled me over while we were sitting on our couch, watching the news, frantically checking online sources and reading articles about coups and fascism, to look at this memory that had popped up on his Facebook page.  God bless Mark Zuckerberg and the ingenious feature that actively shares our own memories on Facebook, it’s seriously added a whole other level, a whole other reason for keeping your account active. For months I’ve been having nightmares of the revolution, trying to prepare ourselves for this new country that has barely begun to unfold in front of us, and then there is the video that first brought hope to our family, Aleck hits the elephant.

When Aleck was born, the parade of doctors walking into my hospital room, only hours after he had been born, told us he wouldn’t walk, he wouldn’t use his legs, and he wouldn’t be able to use his arms.  Even his pediatric orthopedic surgeon, after a careful examination shook her head sadly telling us that most likely he wouldn’t be able to walk independently in this lifetime. One of his pediatricians went so far as to compare him to a quadriplegic emphasizing that we better get him speaking quickly because that was the only way he’d be able to get what he wants since he couldn’t point or reach for anything.  He was only two months old at the time.

Every morning, after we’d finish nursing and getting him ready for the therapists that were going to march through our household, I’d lay Aleck on the floor and we’d stretch.  My mom gave me this soft red ambulance that I’d hold Aleck’s hand on and force him to roll the vehicle up and down while simultaneously stretching his hips and legs.  It was the first in a series of exercises that we engaged in daily trying to make as much progress as humanly possible as quickly as possible, before his contractions got worse and his limbs stiffened even further.  Then I’d lie him down on his play mat where I had hung a bunch of toys for him, specifically an elephant that rattled, hoping the sound would encourage the movement.  As he lay there I’d hit the elephant over and over, showing him how it made this fabulous noise, and using my hands to gently guide his little body towards it so he could feel the satisfaction of this rattle as well.  It was barely an inch from his body, he’d stare it down intently, but day after day he didn’t get the rattle.  He understood what I was trying to do, he understood everything very quickly, but it was clear that he lacked the ability to hit this rattle.  He was just three months old.  Then, one day, I could tell he was getting close. I grabbed my phone hoping to record the moment, and he came through.  He hit the rattle and I screamed and cheered with joy and delight.  It filled me with unlimited hope.  He was three months old and this was the first sign that his prognosis was wrong, though at the time we didn’t really understand.

Watching that last week video I was flooded with all of those old feelings again, how desolate and lonely I felt there on my living room floor.  How my world had suddenly shrunk from multiple careers, multiple properties, lots of friends, hosting parties, to the future of one little baby boy and nothing else mattered.  He became my world because I knew if we had a fighting chance I had to give him every ounce of me.

The weekend before the inauguration we went to Milwaukee to visit one of my closest friends who was coming in town from Denver to see her parents in the area.  To Aleck’s dismay she had left her two older boys at home and was only bringing her 4 month old.  While hanging with them in our hotel room the baby got tired of lying on his back, even though Aleck was cuddling and entertaining him non-stop, this little boy was ready to move.  So, I picked him up, put him on his feet on the bed, and began to simulate jumping.  Aleck demanded that one of us pick him up too and do the same activity.  Ever since he started school this year he’s been trying to jump on his own.  He’s practiced it in therapy, even using a harness to help simulate the feeling, but so far no air underneath those feet.

Our arms got tired and we declared this activity over but Aleck wasn’t having it.  He came down off the bed and decided to do his “jumping” right there on the floor without us lifting him up.  As he was practicing Craig suggested putting his hands on his knees as they bend, before the “jump”.  That was the key.  Aleck got air under both those feet for the very first time.  Quotation marks are done, Aleck was jumping.  Click here to see him a few days later, walking and jumping in puddles (38 seconds, good jumping at the end). 

The baby who needed his entire body to turn in order to hit the elephant hanging not even half an inch over him, can now get both feet up in the air at the same time.  Another big step in his progress, even more amazing when we reflect on what used to make us cheer when he was still so incredibly small and fragile.  Anything is possible, truly, anything. This life we are in, it’s not a sprint, it’s a very long and grueling Iron Man mixed with some Crossfit, dusted with yoga.  It will hurt, you will get injured, it will be exhausting, and along the way people will tell you that you can’t do anything about it, you can’t do anything to change it.  But we must stay strong, we need to be flexible, we need to heal and help each other heal, we need to come together and celebrate our victories while preparing for the next challenge.  In this life right here in the Persin home, it’s either stairs or dressing himself that’s coming next.  Out there in the USA, it’s fighting the ban on Muslims, it’s rejecting the cabinet nominations, it’s fighting the supreme court nominees, it’s stopping Bannon from having his finger on the trigger. While pushing forward don’t forget to reflect on where you came from, where you want to go, who needs your attention the most, and what you are fighting for.  Like Aleck we are all in it for the long haul.  After all, that video of Aleck hitting the elephant, that was 5 years ago and now look what he can do.  Hopefully our fight will only last for four, and then we can reflect on what we, a democratic nation, can truly accomplish.

Only 6 weeks apart, Eliana is the example of a typical baby for her age.  Notice the difference in their arms, his barely moved at the time while she could reach for what she wanted.
Only 6 weeks apart, Eliana is the example of a typical baby for her age. Notice the difference in their arms, his barely moved at the time while she could reach for what she wanted.
You can see how Eliana was able to reach up and grab whatever toys she wanted while Aleck’s arms were firmly stuck next to his sides. It took his whole body to move an arm to even just touch one of his toys.

What do you think?