Milestones.

From the second a child is born, a mother instinctively believes that the beautiful goodness placed inside her arms is the most perfect being to have ever graced the earth.
It is a good thing.
That overwhelming love protects, not only the child, but the mother.   Because, really, newborns are not easy.
Almost immediately, and especially with the first-born, we compare.  We research and read and dissect the pamphlets given to us by our pediatrician. 
When should my baby hold my gaze?
Reach up their arms?
Roll over?

We feel proud when they appear to have exceeded developmental expectations, and though we may not admit it...we worry when they don't.  We search for some external validation via checklists that will fuel our most divine desire to be a good mother, and somehow tell us, "Hey. You are doing a good job at this being a mom gig."

We (mothers) count them.
The milestones.

I tried this for a little while with Deak.  When that inevitably failed, I then attempted to compare his milestones with those few who are born with the same chromosomal abnormality.  Many years and few circles of acceptance later, I've mostly stopped.  The external validation for a "job well done" does not run rampant for moms of special needs kiddos.   I had to learn to accept that milestones may become "inchstones." This is not easy; it's painful.  Excruciatingly painful.  But, eventually you get there because you need to emotionally survive.

My boy has hit a milestone.
He has patiently inched his way along his own little cautious path, and reached a place, that admittedly I was learning to accept may not be a possibility for him in this life.

Last night, he walked.
Not just a step.
He walked.
He looked so cute. 
Six years.
Six.years.of.inchstones....and now, he can walk.

He walked back and forth for an hour at therapy; making it several feet before stopping himself.  It will take him a few more inchstones before he is walking around Target.
But, he is ready.

Our last physical therapy session, three weeks ago, was pretty disheartening.  I had just found out about the new hip surgery and the implications for progress that entailed.  Deak's therapist, Mark, was respectful enough to kindly guide an appropriate discussion of realistic expectations. My heart left broken.

Last night I mentioned to Mark that he had stood in our family room and had taken two steps towards me unprompted.  I had seen this a positive sign, but was cautiously hopeful.  My heart can only take so much...

Mark and I chatted, and then, Mark just let him go...and Deak walked away from him to his toy on a nearby bench.

"What? I didn't expect that!! Let me get my video camera!!"

Mark was beaming.

I was beaming. 

And like any proud mama witnessing a milestone, I took 700 videos.
Hundreds of physical therapy sessions in my boy's little tiny life had suddenly been so worth it.
External validation had found it's way inside my analytic brain, and it felt amazing.

Mark said he'd like to attribute Deak's new found fearlessness to acquired ability level. 

"He has made significant progress in the past three weeks.  He is ready."

Those unexpected miracles.
Actual, real miracles.
I get to live them.
They are the best kind of happy I know.

A day later, I am still beaming.
And, I am now watching his 700 walking videos over and over and over again.
Crap has happened at work, and I have been able to just smile it off. I drove to grab a Subway sandwich, remembered the feeling I felt last night and cried happy tears through the drive-thru.

This boy does this; creates a depth of feeling most do not get to experience.
He is joy.
He is my joy.
My heart could not be any more full.
How grateful I am to be his mother.

Hope.

*A re-post from our run site...

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.