The Ups and The Downs and The Depths of MPS

20131004-193713.jpgIt’s been an incredibly challenging month for my mind and my heart. A couple of weeks ago Jack went under general anesthesia for a few procedures- ear tubes placement, ABR (hearing test), MRI of the brain and spinal MRI. It marked my 6 year old sons 12th surgery. And by no means does it make it easier. With the progression of disease the airway becomes a greater risk, making intubation difficult. 4 hours under GA feels like eternity. Trying to read a book, search or surf the web, flip through a magazine when all along your focus never diverts from ones stirring stomach, pounding heart, and head noise that repeats “is he okay” “will I see him again” “when will it be over”. The reunion in the PACU has become ritualized with mommy crawling into the bed and rubbing my boys head and scratching his back as I whisper how brave he is and how much I love him. And then you wait for the report out. Each physician involved, usually more the one, meet with you. And you can never tell by there approach or face if the news is good or bad. Cut out the formality and give me the news is always displayed on my face. This past weeks news was bad. Hearing loss had progressed, significant spinal challenges ahead which includes surgery in the future to keep Jack mobile as long as possible. Cervical stenosis, kyphosis, degeneration – and 6 years old. And then hearing brain ventricles are enlarged again, possible shunt issues. Jab jab jab MPS is winning. And I feel I’m shifting down a hole again that’s dark and deep. My poor boy never gets a break. He just wants to be around kids, I just want him to attend school to be around kids.
So then more appointments after surgery, shunt was adjusted in hope to decrease the ventricles, a repeat MRI the following week to see if it has helped. The slightest thought of surgery makes me sick and sad.
Update: last weeks MRI showed small improvement to the ventricles so now we wait.
As we wait there are always daily challenges on top of the sudden stressors. We now have slowed down his weekly infusions to 9 hours, start to finish, and added many intravenous drugs so he can get through them. His body still rejects, and each infusion becomes more painful for Jack and for me. As of today my
mind races and struggles with how much progression of disease has occurred over the past 6 months. Withering away. It’s extremely painful to discuss and as Jason out of the blue said “the more I think of the use to, the more I have to focus on the now“. It’s so true. I miss my boy saying “shoes on”. “Bye bye”. “Blues clues” “school” and the list goes on. No words can describe the pain involved when I ask him a question now and all I get is a blank stare back. And I immediately answer for him as if he still replies. Coping. Hide- and -go seek replaced with peek-a-boo. Toys being packed away. This is my reality and the depths it is taking me. And I feel like a complete fraud when I say I’m fine.
I’m not fine, I’m not. But I realize I can be okay if I can continue my journey by focusing on the now.
~you do not notice changes in what is always before you~


14 thoughts on “The Ups and The Downs and The Depths of MPS

  1. Oh dear such a hard post to write and to read. I so hear your mother’s heart. I really do not know what to say or to do. I can pray. I do pray. I hope He hears and he listens to all of us as we walk this journey together. My now prayer is for a good afternoon with Jack.

  2. wow how I can relate I try not to think of all the bad stuff that I know the future will bring for now my daughter is head to head in the race but I’m so afraid that in the long run MPS will win.
    my prayers are with you and your son 🌻

  3. I don’t know what to say to you and all in your family…. While we send prayers to and for Jack… Know you are also sent a hug and hopes for a better hour… Day… Week… And the strength to get through each! You are all in our prayers! Bonnie and Steve Kretz

  4. Please know that we think of you often and the staff always asks about Jack and your family…Sorry that things have taken a turn for your little pirate…Praying for you all.

  5. Our thoughts and prayers are with Jack and your family during this difficult time. Cindy Frech and Prairie Children Preschool Staff

  6. Did we ever know when we were growing up that we would be mother’s that would be given the gift to love so deeply and to know what take nothing for granted truly means. Thank you for writing on behalf of mother’s in this small group of metabolic storage disorders. Mother too.

  7. Thank you for sharing your heart and soul with all of us. While I may never fully comprehend all the struggles you are dealing with, my mother’s heart is in tune with yours. We all love Jack! He holds a special place in our hearts. Know that you, Jack, and Jason our in our hearts and prayers. Mindy Donovan

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