more than words

IMG_2185It’s been a long 5 days of not hearing “mom”. It’s one of the last words that comes from your mouth every so often and I know it too soon will be gone.  I won’t hear your voice again, its pains me to think of this, it brings me great despair that can not be described.  All your words taken away from me because of this monstrous disease.  I video tape you trying to speak, I hold on to old videos and play them over and over.  Yet it is still not the same, watching those beautiful lips move out my name, “mom”.  Deciphering your needs and wants have become even more challenging then before.  Showing your pictures, or items and you tapping made it easy. Now your blank stare causes me to fall apart.  Ripped at all seams.  Its heart wrenching your leaving me, the pain deepens even more then the day before.  I never thought I could miss someone so much when they are with me every day.  But I do. So deeply.

My journey with you continues, although the challenges now become harder.  Losing your voice, losing your ability to eat, losing your ability to walk.  The chokes, cough, falls and silence are present now, the decisions are extremely difficult.  The HOPE becomes further and further, and surrendering to this life becomes closer and closer.  It doesn’t make it easier, it doesn’t make it fair, it just makes it all real.  The truth hurts.  Real bad.

No one is equipped for this journey, my tool bag is empty.  I ride each second as it comes, letting emotions take over and then figuring out how to pull myself up again.  Always knowing I will hit the ground again, soon.  MPS is Relentless.  Your winning MPS.  Cheating and breaking the rules, and winning.

22 thoughts on “more than words

  1. I am so sorry So very sorry. I would do anything I possibly could to fix this for you. I share your grief and sorry as best I can. My heart aches to read your words BUT I always will. Keep writing. This is your and Jack’s journey. You are writing it for both of you. Hugs and prayers.

  2. Dear God,
    Please be with Jack and his mommy & daddy and hug them close. Keep their hearts full of love Lord. Jack is a gift and his parents story is a true treasure. Hold them tight God, tighter than ever before. Be with them. Show them that MPS doesn’t win. It will never win. There will be a day with no more tears or hurt or pain and You hold the keys. Give them the gift of knowing You fully and show them your promises are true. We hate this disease, we hate that this is happening to Jack here on earth. Give their hearts eternal hope that this isn’t the end Lord. Thank you for the gift of this family and the gift of Jack. Keep him safe God, In the strong name of Jesus.

  3. I’ve sat with MPS for 9 years and I am still speechless that a disease such as one that slowly takes your child away while you- mom- have to watch, exists. It is impossible to comprehend. No one is equipped for this journey, but Jack and Juliet are so fortunate to have you as their mama. So present and open and willing. Your digging in and being in it makes it harder for you right now, but I have so much respect for your depth and presence and honesty on your journey and I know that you make it easier for other parents who are on similar journey’s because you can be there- in it- with them too. I love you so so much.

  4. Every time I see one of your updates in my inbox I open it hoping there will be news of a miracle. I wish that I could somehow give you one…

    Jack’s life is a miracle in and of itself though. The joy and pain that you and Jack and the rest of your family have experienced together has changed you forever, and your story has changed the lives of everyone who you have shared it with. I’d never heard of Hunter Syndrome before I read your story last year. I know there are many others who similarly learned of this awful disease through you and Jack. That alone is significant.

    I pray for a miracle for your family, and I pray for a cure so that others won’t have to endure this. God bless you.

  5. Always praying for Jack. So sad to hear your post that Jack is losing more of his abilities. Heartbreaking news. Larry and I will continue to keep you and your family in our prayers and thoughts.

  6. Jamie my hard aches as I know only too well what you are going through , I wish I had words to make you feel better and a magic wand to erase this horrible disease.

  7. You are so so strong! It amazes me to see your strength each time I see you dropping off or picking up Juliet. You are always smiling. I am so very sorry that you and your family are going through this. Your children are so lucky to have such a loving dedicated mom and dad.

  8. Jamie, my heart aches for you and your family. I wish more than anything I could help, or I could cure Jack!

  9. His smile conveys that you are live in his young life! Skip and I thnk of your families and understand the depth of your grieving. I am grateful to be part of your widening circle who are privileged to be in touch💝

  10. Dearest Jamie

    I am a mother who has lost a baby. I know the gut wrenching pain of losing a child. It is something I wish and hope you will not have to experience. I will keep your family in my prayers and pray Shire will reconsider their decision.
    I am appalled it is not considered murder for Shire to refuse Jack this drug. I would think it would make them more money if the drug
    Was to work.
    Please keep the faith and be strong

    Love to your family

    • Dear Yer, I am so sorry to read of your loss. And thank you for all your kind words. Shire is worried about one thing, drug profit, not my son Jack. It hurts but its the harsh reality. Thank you for following out journey. Be Well.

  11. I cannot imagine having to face what your family is facing….knowing what is coming..and having to be strong! I know God is holding Jack in his hand and walking with him on this journey….may he watch over the whole family…give you strength to face each day and love that is never ending for all…hugs and prayers to all!

  12. I can only say, I pray for you both. You are one strong woman, and I admire you for what you are going through. There is a special place in heaven for you. Keep going, that’s all we mammas can do.

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