Thank You Craniosynostosis

Wait what????

Why the heck would you thank that now? Are you crazy???

Nope....


If it wasn't for that, we would not have known what else was going on with my son..... A routine MRI, his first is what started the rest of the journey.....When he was born, it really was just beginning.  What I thought would be deja vu, God went, "Not so fast!"
Little did I know..... I get the feeling that craniosynostosis surgery, as hard as it is, is a breath of fresh air compared to what is coming next..... I pray I'm wrong...

"Only those who will risk going too far can possibly find out how far one can go."
T. S. Eliot

The battle of last week I survived, better than I thought I would. I'm still taking it all in.... Surveying what is left and what is around me.

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I am sitting here looking back on the last week and how crazy it was.... Thinking about what all was said, what it all means and what is next. In June my son will be facing another surgery. Almost a year after his last major one, another one is breathing into our faces.

This one is called a chiari decompression with laminectomy and duraplasty. That's the medical term. What that is generally is a procedure where they take out and shave down bone and other material surgery at the base of the brain and top of the spinal cord, it's a delicate surgery.... Just inside the covering of the brain and spinal cord...... It is to allow the CSF fluid to flow freely. Right now his fluid has areas that are tight. It is also the cause of the fluid filled cyst in his spinal cord called a syrinx. That is the hope anyway. There are children who only need this once and others that need it much more....

If allowed to continue in this fashion, he would decline greatly, which is why the surgery is needed. This is not what he had last July in Dallas. That was a posterior vault with suboppicpital decompression. That decompression just bought us time.... The vault helps to expand the skull to allow brain growth.


May I be ready for the next battle..... As long as I'm growing, learning and leaning on God and those close to me, that's how we get through. I have an army with me.

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I know we have a lot of prayer warriors. I wish it was easier to focus on them instead of those who I thought would stick with us, no matter what..... Pray for me on that.... Family isn't always blood, I'll say that. I know too that I think it's not me that's my son's biggest blessing, it's his sister. She is so protective of him! Her journey is similar but my son's is also totally different....

May I remember this:
"I actually am humbled when God uses me to go through a struggle because I know that I am going through this so I can help others down the road.

It is not easy.
It is hard.
It is uncomfortable.
It is painful.
It is scary."
~ Patty Myers ~

Two gemstones proving to be rare yet uniquely different. It is scary though not knowing what will be done.... What will they face? How? When? Will they survive to the other side? How will they take the battle scars as they get them?

"Courage is not the absence of fear. Courageous people do feel fear, but they are able to manage and overcome their fear so that it does not stop them taking action. They often use the fear to ensure that they are not overly-confident and that they take the appropriate actions."
~ Unknown ~

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“Maybe it’s not about the happy ending. Maybe it’s about the story.”

~ Author Unknown ~


Blessings!
~ Special Momma ~