• bridget snell

I'll just never be ready for Disney

Updated: Oct 22, 2019

Day +171

It's almost time. My 6-month post-transplant MRI is in three weeks.

This MRI isn't a tell-all. It's not giving a pass/fail to the treatment. It's too soon. It's just to see. Just a peak. But come on! Is it working or not?! AmIright? [sigh]

The wet weather is what I'm blaming for the dips and lows I've been feeling. I have that heavy feeling in my body like after a long workout and the flood of lactic acid in my muscles. All of them. Such is non-linear healing. I won't go on.

So I'm biding my time by getting my house organized for the school year, starting with my kids' spaces.

My oldest daughter has always loved school. She loves to learn. She loves that fresh, blank piece of paper, covered in the ghosts of incorrect answers and the correct one written with her pencil pressed down a little harder that time. She loves math. She loves to write. And like her Mommy, her thoughts and her tongue work faster than her pencil.

The first month of school wasn't met with the same enthusiasm as previous years. She is girl of many, many (many) words but this time she tells me third grade is "just different." She was struggling with math and she hates struggling. She isn't used to it. When she wanted to learn how to ride her bike, she strapped on her helmet and was riding in under 30 minutes. Got it. Next. I saw that this time I couldn't fix it. Mommy couldn't snap her out of the stoicism I saw getting worse. I needed help with this one.

A text and visit to my friend Nicole Gambino and I was opened up to a new world. I couldn't believe what I never believed about the correlation between physical space and proficiency. Between regulation and arrangement. And it never occurred to me my daughter needed help with this. Fortunately, Nicole is an Executive Function Coach-- and holy eraser dust, batman, she changed everything! No, really, my living room is rearranged.

Nicole showed me how help my daughter get herself set up for academic success. We began with her space. We next worked together on a doable, realistic after-school routine. Next, my daughter made a schedule, a plan. She has a process. She is focused. Most importantly, my third grader has found her words again.

So now I'm a little on fire about it. I'm trying to incorporate what Nicole taught me about how our mental function relys on our approach and process. So here's my new plan: come up with a plan. With new stem cells comes great responsibility. I need to do all of those things I couldn't do before. The Adirondacks were just the beginning. My sites are set on running walking a 5K. Kayaking in Glacier Bay. Reading 20 books a year. Ride the Shining Sea Bikeway. Maybe agree to take that Disney trip.

My international HSCT family is full of motivation and great ideas to make the most of the good energy and good muscle strength days. Feel free to send me your ideas of fun, day-long or weekend adventures to challenge my strength. I'll get the list posted soon and you can keep filling it with me.

Remember that jar the girls started, with fun things we can do together when I'm better? It's time. I'll find a doable approach to these goals that won't put me into "analysis paralysis" as Nicole puts it. I have my homework to do.

But first, I have to find that damn jar. Where the hell did I put it in all this mess?

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I'm going to do it. I am going to shamelessly plug Nicole Gambino and her company. I knew when I texted her that day I would get great advice, but she really amazed me with the science behind her methods and her amazing Homework PreFlight Method. Full disclosure: I'm lucky because Nicole is my dear friend I have her personal cell phone number and our kids love each other. You could also be lucky and meet her and learn from her. But don't expect to get her personal cell phone number.

Note: This is my personal story with information about my own experience with HSCT for MS. 

The information on this site is not intended to replace advice from your doctors. I do not give medical advice.