Jack turns 7 on Sunday, his golden birthday someone says. Golden or not, when time is your enemy it’s extremely difficult to find the celebratory piece to it all. Today I struggle.
I always envisioned Jack receiving intrathecal drug by now, his brain stable and all of us going to bed knowing he isn’t regressing or slowly dying. And here the day comes and still he has no treatment option, so for 7 years I have had to watch this horrific disease swallow up my beautiful son.
Jack turns 7, however functions as an infant-toddler level, he functions way below his 3 year old sister. There are no more excitement around wrapping and hiding gifts to be opened, no excitement all over his face as he sees presents, no more studying of gifts, no more toys and books or character balloons floating around the house. Instead gifts become needs to keep his dexterity, to maintain his oral motor function and sustain his attention. I purchase these items often and view them as his needs, but never do I or will I consider them birthday gifts. And now I will watch his sister opens his gifts and I will hold my breath in hopes he will show some interest in what is in front of him.
I grieve, it’s impossible not to think of my once little boy laughing, singing, opening gifts, popping balloons, and smiling ear to ear. He loved his birthday more then anything, we had to mark and count down on his calendar because he would ask every single day if it was his birthday yet. To have that back. And it’s even more impossible to not wonder what I would be buying a typical 7 year old on his birthday.? Would this be the year of a super cool bike or some special gadget or a new series of books? Teenage Mutant Ninja gear (seen at Target), Minecraft garb (all over the neighbors playroom), or new iPad(don’t all kids want)? Would numerous little boys invade my home doing and being 7 year old boys? Wish.
Instead I swallow back so much pain and sadness. I muster up what strength I have to move about this day in anticipation of Sunday. And on Sunday I will look my beautiful boy in his eyes and wish him a happy birthday. And with the usual blank stare back at me, I will wish real hard that he knows he is loved and he knows that I know he is still alive.
Instead of happy birthday, I’m happy this birthday has came for Jack, because I know one day I will celebrate him alone.
Here are a couple of my fave birthday memories.
Here's Jack! 
I hold you in my heart Jamie.
Jamie, your most touching post yet. I hope somehow joy lightens up your heart at this moment.
Jamie- hugs and love to Jack, and all of you. Xoxo
Wish I had some smart, awesome words but I don’t. Just know I’m thinking of you guys and wishing for a good day for Jack and for all of you.
((Hugs))
Erica
Jamie,
Your post is beautiful. My heart breaks for you and I’m amazed at your strength. I am thinking of all of you.
Jamie, my heart breaks for you and your family. You are truly amazing- the fact that you keep on keeping on is a blessing for your family. I so deeply admire your spirit and hope that knowing people are thinking of you and praying for Jack can give you a little bit of strength in your battle against this horrible disease.
I am so very sorry for your sadness and pain. I don’t know or understand why they would not help Jack. I do however know that he does indeed know of your love for him. Love is so not about what is said. It is about what is felt. Jack feels your love everyday and it will be no different on his birthday. He will know and he will feel loved.
We love and miss you all and jack. Take care.
Jamie- that beautiful little boy knows he is loved. You are amazing at loving him, and he feels that in his heart.
Happy birthday Jack! Love and prayers to your family.
I know and feel what you are going through,know that I am thinking of you and Jack.
(((hugs)))
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He is so loved and you can tell. It just radiates from his face.
Happy Birthday Jack. Love and hugs to you!
Jamie, I’ve had more than my share of challenges and suffering over the years. None of it compares to what you live with each and every day. I’ll bet there are people who tell you they admire your strength. Little do they know that we do what we have to do. We put one foot in front of the other because there is no other choice.
How I wish I could carry some of the pain for you. But we know that is not possible. I have a sense of your experience because many years ago I cared for a child with MPSII. It was painful and heartbreaking but he was not my son and I did not live with him. I know what it looks like to see a child lose function to this horrible disorder. But I will never come close to knowing your experience. Hugs. From a friend of Deb’s.
Jamie, you and your family are forever in my thoughts and prayers. My heart aches for you as you navigate a world with MPSII as a part of it. I hold you in my heart and want you to know that you, your beautiful family, and most certainly Jack have left an indelible mark on my heart forever. Love from all of us at Prairie Children Preschool.
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