smiles through sadness and fear

Will the sadness ever go away? No I say, but I try like hell to enjoy the time with Jack even when I want to curl up in a ball and wish it would all go away.

The past months have been filled with fighting and hoping and fighting to be let down. To then stand up again to fight more, hope more, and be crushed again. Shire Pharmaceuticals continues to deny treatment for Jack. Over the past month a gentleman who heard of our struggle, and who is well-versed in the rare disease world contacted Shire. He offered his knowledge and support to help Shire create a stronger trial that would include non-qualifying patients. Hoping to help save all kids, include all kids, be fair and support the fight to save your patients who are dying. After a month of waiting, and no contact with this man, we learned yesterday that he feels like he cannot do anything more. Shire continues to be uncooperative and so not patient focused.
How does one make peace with all this? How does one be okay with letting your child die in front of you when one watches other children with the same disease be given the opportunity to live? Making peace with all of this means giving up control. And giving up control means more sadness, pain, and hurt. So much of my past 6 years have been out numbered by sadness and madness that I can’t bear to think of adding more of these days. So I write to you sharing a glimpse, letting you all know I continue to watch my little boy lose interest in life, all the things that made his day light and full-filled, now being replaced by a very nasty disease. Its unbearable. I am so fearful of what is ahead. I constantly have dark thoughts floating through my head, no matter how many times I try to ignore or dismiss through breathing or meditation they quickly resurface and get louder. I feel needy and unsure of how to cope with it all, feeling isolated and alone. I hold a stone of hope that one day soon I will smile again, and not through the sadness and fear but a real genuine smile filled with happiness and lightness (with sparkles). So I am doing what I can, I muster up more energy to continue to fight, at the sacrifice of taking away energy to give Jack, Juliet, Jason, friends/family, but I can’t give up and I wont give up! We need you all to support us so we can continue this battle. We need each and everyone to help meet us on the battleground to HELP SAVE JACK!

Please excuse my grammer or grammar, my thoughts do not follow the rules.

A HUGE hug and thanks to Josh Gorman who is taking on an Ironman in Boulder, Colorado. He is enduring pain and finding strength through Jack and the loss of his father. All donations will be directed to The Isaac Foundation, MPSII Research. Please donate if you can, or please share with all you know, or cheer him on.

28 thoughts on “smiles through sadness and fear

  1. I mentioned once before about going to Dr. Phil. He helps children in need. I really believe he could be of help. My thoughts and prayers are with you. Never give up.
    As far as I know that is an avenue, you have not tried. You have to keep going. Ask God for strength and you will find the answers.

  2. As much as this hurt my heart to read, I know it’s nothing compared to what you feel. I wish I knew how to help you get the outcome you all deserve. Please let me know if there is anything at all I can do.

  3. I am so sorry and wish I could make things better for you somehow. I know some of the fears you face, and that despite it all you trudge on with that smile pasted on your face when needed, while on the inside you’re are so scared, feel deflated, feel defeated, feel sad, and hopeless, not to mention physically tired. There are sleepless nights, tears, and sometimes panic. My heart aches for you my friend. Just continue to love your little guy with all you have and try to find some small joy in each day. He will always love you back even when he can’t voice it or even physically show it. I promise you will make it through this all. I am just a phone call away if you need to talk. I don’t care what time of day or night it is. I will listen, even if I have no answers. Hugs to you!

  4. I love you to the depths of my soul Jamie. It is so unfair and I wish I could take your pain away. All I can do is be here, for whatever arises. I am here to sit and talk and cry and love with you.

  5. Jamie,
    Not a day goes by that I don’t think of Jack and your family. The pain seems unimaginable to me. I pray that some good will come from this…what I don’t know but my faith tells me that something must come from this tremendous pain that your family is suffering. Shire…so unfathomable…with every day though there is hope. Hope is still there. May you find peace and know that there remains of army of people who are praying for you, Jack and your family. Never give up…..Lots of love and hugs…Mary Beth Cook

  6. I feel so helpless. I would help so much and do not know how.
    Why is there no compassionate people at Shire?
    Why allow the policy that people die?
    I pray for you.

  7. Oh Jamie, I am so sorry. Its so painful to read your thoughts & I cannot imagine what you must be feeling like on a good day let alone your darkest. But know this, not one day has been spent in vain. All the work, all these years you have put in to save your son to give him the tiniest of a chance at life inspires us all. Your effortless work is astounding & you not only do it for Jack but you shed so much light and knowledge into the MPS community and also to any parent who is struggling with special needs or just plain struggling!!!

  8. Jamie, you are an example of undying strength. I know so well the feeling of the medicine being just out of your grasp, while you watch other get it…and you see it helping in many ways. It’s nothing short of torture!! Sending my love…and hopes that there will be CA for our boys before it’s too late.
    Amy Kemp

  9. Thinking of you Jamie! I too feel your pain and it’s pain we parents should not endure. I pray that the hearts change within the CEO and others involved that are saying no to this drug that could help save our boys! You are a very strong woman and I thank you for that!! Love you Jack, keep up the fight, we are all %100 behind you! Much Hugs!!!

  10. Xoxoxoxo. I wish I could say something that would help. You are a kick ass mom and woman! I envy that in you. I know true happiness will come.

  11. I have taken a day to even try to think of how to comment on your latest post. My heart aches for you . I continue to pray for Jack to get that yes answer . I do know that there will be a time in each day when you can say or do something that will bring a sense of love and peace to you and to your son. My prayer now is that you will find that one thing and focus there on the good of each day. I wish i knew how to lighten your load. If i lived closer I would surely try to come along side in the form of a real person. From here all I can add are prayers. I will continue to write or call anyone anywhere to try to get them to rethink or listen to the pleas of a child and his family to say yes!

  12. Jamie,

    I am so heartsick for you and your family. I pray that YES is word you will hear in the very near future. It seems so logical that Shire would say Yes, I am utterly amazed that they won’t. I will keep praying for you and Jack!

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