The waves keep rolling in on us…

Believe me when I say I’m scared. Not a feeling I allow in my heart and mind frequently.
When I look at Spencer I really don’t see a different child, I don’t see a child with problems or life long issues. I see a young child that is fun loving and carefree. Boysterous and mischievous. An entertaining funny, charismatic little boy. I no longer notice his eyes or head, no longer see a pfeiffer child… Just my child.

Spencer has Chiari Malformation. He will have surgery to relax his brain that is being forced down into his brain stem. Eventually without surgery he will lose all sensation and feeling in his arms and legs. He will stop talking and go into a vegetative state for the rest of his life.
Even though I knew this time would come, you don’t want it to though. And usually this surgery is straight forward but the cluster of blood vessels in his neck with have to be worked around with great skill to prevent worst case scenario. So I’ll stop there, I don’t want to think that far.


Spencer will undergo the most serious surgery so far, with risk of stroke, hemorrhage, paralysis and death. It is beyond any fear I could know, beyond all limits of my mind and takes the involuntary pumping of my heart to remain alive myself to cope with this, because I can tell you now I am very very scared, I won’t look you in the eye and tell you but I am truly doing my best to keep it together as this wave begins its ascent to us.

I will however remain positive and thank god we are in Australia with the best surgeons in the world, I’ll stick with that because it’s all I got.

God did not put this beautiful boy on the earth not to be someone,not to take every complication and squash it with his smile, and not for one second will I underestimate him, not god, not Spencer.

Ever had that adrenalin rush when something is frightening, or a close encounter, when something takes your breath away and there is a tightness in your chest and a cold feeling in your heart?
Ever had a hot flush, a tingling in your arms and legs, a throbbing In your head and neck. Ever been so worried that stars flicker in your eyes, your belly not only has butterflies but wasps flying around and your waiting for that sting?
That’s what I’m waiting for a sting, a pain, a gut wrenching ache,a numbness so crippling it does not have words to really effectively describe.

God help me. God save my son.

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2 thoughts on “The waves keep rolling in on us…

  1. Dana,
    I’m not sure if you remember me, but we’ve talked on FB before. I’m currently 19 with Pfeiffer/Jackson-Weiss Syndrome.
    I just felt the need to comment on here & let you know that I did have a chiari decompression on September 19, 2012. I cannot say that it was easy, but I can say that it completely saved my life.
    There’s a lot that I can share with you, so please feel free to get ahold of me either via email ( Just put in the subject either “Dana from Spencer’s journey” or something like that, so that I won’t delete the email) or on FB. My FB name is Natalie Amy.
    My thoughts and prayers are with you as you embark on this hard, long journey. Please feel free to let me know if there’s anything you need, or anything I can help you with.

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