Hope.

Something I've learned, albeit not well, along this journey of parenting my Deak, is regardless of the battles we've won, this Ring Chromosome that he was given still likes to jump out and prove it's around when we least expect it.

Last Thursday, I sat with my boy who was wearing no pants (don't ask, it had been a long morning), waiting to meet with our Orthopedic Surgeon for our yearly routine check-up.  This same routine check-up last year lead Deak to a neuro-surgery on his spine and a traumatic mistake during the anesthesia administration that nearly left us without a son.  So, I guess when I mention routine in Deak's world, it should be qualified with a disclaimer explaining that our version of routine probably isn't so much yours.  Nevertheless, 6 packs of fruit snacks, a package of candy, 25 stories and two hours later, I was again met with the following statement...

"Mrs. Howe, things don't look good."

You'd think I would be used to it, but I'm not.  My heart breaks every single time.

This time, it is Deak's hips. They have shown a marked decline over the past year, and Deak's hips are now functioning at over 50% outside of the socket.  They need to be replaced and fixed, and this requires my extremely active and mobile Deak to get new hardware inside his body and wear a cast from his chest down for approximately six weeks.

Six. Weeks.
This time I just don't know if I can do it.

I know I am not the first parent who has endured this type of thing, or even this type of surgery with their child.  It's not even my first surgery with Deak.

It just does not get easier to watch your baby in pain; it just never will for me.

I've selfishly indulged myself in tearful drives the past few days.  I've projected my anger onto the doctor, my husband and my kids.  I have asked "Why," felt defeated, powerless and alone. In fact, I've consciously thought, "This one is going to push me over. I can't do any more. I can't."

Then, something happened yesterday as I left an especially emotional physical therapy session with my son. I got an email alerting me of two new registered runners for our little race; a father and his son, also with Ring 18.

I read the simple email, and I cried.

I remembered that I wasn't alone.
I remembered that there have been times when I've been able to show strength beyond my capability, and stand by my son's side as he endured more than any child should.
I remembered that I do have power, and that I can do my best to help change things for future families traveling our same road.

I remembered that although I will not always feel appreciative of the "why," I understand that my son's life has purpose.  Through this understanding, I have hope that one day the "why" will become clear, and his patient suffering will have meaning.

I have hope.
Some days it blows loosely in the air like the wisps of fine baby hair.
But, some days it is so overpowering, that I feel I have been given a gift so amazing I need to stand tall and scream, "Hey guys! I get it. Spend some time with my kid...You can get it too."

I need this run.  I am proud of the money it has earned and the lives Deak has inspired.
But, I need it.


I need to have hope.

Come let me scream it in your face on May 12th :)
Register today.