It’s been awhile since I last updated my blog. I’m happy to share that while I was away I have realized 3 important things about myself… Well I have learned more then that but I won’t bore you with the facts about finding out that I can go all day with food in my eyebrow and hair without anyone letting me know, so that being said lets stick to 3! And then for an update!
First is that I do a great job of shoving my messy life deep inside and ignore it all until I explode. And these explosions can happen anywhere and anytime. I apologize to all the employees of Bed Bath and Beyond for having to witness my sobbing and staring at pots for what seemed like eternity before I realized they were pots. And the second thing I learned is that writing is so cathartic for me and that’s why I found myself reaching for the computer yesterday to write this specific blog. And the third thing is that the more this disease takes over Jack’s body, the more the physical demands and medical responsibilities which equates to a very busy and tiring life that often leaves little space for self care. So I try to find what I can take out of these learning moments to help better my grief, if that is possible.?
Well the good news is Project Alive has reached 100k and we are moving research towards human trials for gene therapy. The Nationwide Children’s Hospital team is pushing forward with the toxicology study and preparing for the FDA thanks to all the funding! After these key study points we will need more money to go further so please continue to share our story and share ProjectAlive.org. We have some exciting shares coming your way. We will be actively seeking your help soon, so please stayed tuned.
The bad news is that Jack’s health often doesn’t come with good news. Just MPS news. What progression does, well it progresses. Jack is losing his ability to chew and swallow food now. Choking through long meals have replaced his excitement for eating. It’s been BEYOND painful to watch since he LOVES food – texture, taste, and smells. And I love cooking for him. His love for food and going out to eat happened early, he loved restaurants as much as any adult does. We made menus for him with pictures to ensure he always given the choice of what to get. To this day he perks up at restaurants and continues to hit the menu as if he is ordering. But back to the now, so yeah I am beyond heartbroken that we are at the stage that he now requires a feeding tube to keep him nourished. It took me about 3 months to work through the emotions of it all. Specifically him having another piece of medical equipment stuck in his little body, navigating this one around the others. And now we learn another huge responsibility that goes with taking care of him. Carrying that load on top of the other heavy loads that weighs ones physical self down, and sometimes blows out the light of ones soul. I find myself saying, we will do it because we always do it and always will. And this mantra might get me through that moment but it certainly doesn’t make it any easier.
On top of this heart wrenching news I have had to spent quality time at a wheelchair clinics shopping to find the best chair for Jack to be supported in. It’s like buying a new car times 100. Seriously. I think we have settled on a good option that will keep Jack supported and safe as he experiences more pain in his body and looses his ability to walk. For those of you clueless to this purchasing, insurance companies only allow 1 wheelchair every 5 years. This makes it very tricky when picking out a new chair for the now but must help him in the future. And with this wheelchair brings new conversations around how it will look transporting him into my vehicle day to day? Lifting or ramps? Modified vehicle or tearing ours apart? And then what about the house? Ramps and stairs and backs that ache…but one day at a time, as s I trip and fumble on today…
It’s isolating. It’s overwhelming. It’s simply about breathing somtimes. Breathe just breathe.
And so I ask that you continue to lift us up in prayer as we move forward with our new life with Jack. It’s affecting us all in many ways. The coping, dealing, grieving and living in it all is just plain messy. And in that messy all we have is our faith. My faith is the promise that one day Jack will be healed and no longer suffering. And this hope is an anchor for my soul.
Until then we pray.