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.

Normal.

I went to lunch with a friend this week, who so happens to also be a mom to a darling special needs son.
It was such a good lunch; full of laughter, some tears and a whole lot of honesty.
Because, life can be really hard, and really isolating in our world.
During the course of this much needed few minutes of respite, we discussed how we both feel jealous of other families at times.  How lucky "they" are to just grab their mobile children and "tell" them that they are going to the _________ (store, movie, bank...whatever). 

There have been moments, and there have been several as of late, where I have found myself in tears, by myself, because I just don't have the same flexibility other mother's do.  I can't do things "on a whim."  My activities with my children require lots of planning, and a painstaking amount of energy (both mental and physical).  It makes for a lot of lonely nights.

Then, there are the moments where my heart is encompassed in guilt; blaming myself for not trying harder to include Deakon in things I think he should like to do. 
Most days, it feels like I can't win the battle of inner dialogue I thrust upon myself.

This weekend, I chose to endorse energy, and energy it was...because heaven knows I needed loads of it to survive.

We had the opportunity to attend a Monster Jam Truck Show, courtesy of Hope Kids, and I decided I was doing it.
Yes, me, all by myself, with Abby and my non-walking 40 lb. son.

I did my best to prepare Deak throughout the entire week:
"Deak, we are going to a show with loud trucks that go "VVVrrOOOmmm" on Friday night."
"You will love it."
"It will be loud, but you will be ready."
"You like trucks, right Deak?"
I recieved some answers in form of hand-clapping, but I assume they were mostly given to get me to shut the hell up, so he could continue his youtube watching in peace.

This event required lots of walking (from the parking area, disabled parking spots are pretty much non-existent at the arena), so I had no choice but to bring a folding stroller.  Once I got to the arena, I was to pick up my tickets in Will Call on the lowest level (basement) of the facility, of which there was no ramp.  So, I had to wait in line to get inside, explain my situation to 55 customer service agents, be escorted to the interior elevator, and allowed downstairs to pick up the tickets.  The whole process...car to entrance...took about 30-40 minutes.

Once we got to our seats, I had to take Deak out of the stroller, ask the usher if I could leave the stroller by him for a minute (he begrudgingly allowed me to, only "if it didn't touch anyone else"), carry Deak to his seat, enlist Abby in ensuring Deak did not do a front flip off of the seat (he likes to do this), run back up the stairs to the stroller, fold it up, carry it back down to our seats, and shove it under the seats out of view of anyone who was in charge (I'm pretty sure it wasn't allowed).

Deak lasted in his own seat (earplugs in), about 15 minutes, and then I realized he was going to do best on my lap, which meant I needed to take endless kicks by brace-supported feet to the shins and knees for the team.
I did, and he loved it. 
He jumped with the jumping trucks, squealed his little happy squeals and double-fisted popcorn out of the bucket like it was his last meal. 
He did not cry once.
I will repeat that, he did not cry once.

At one point, I had promised Abby a slushy, so I, again, enlisted Abby's help and she held him while I ran mock 90 to the overpriced slushy stand to buy her well-deserved reward.
I returned about 5 minutes later to Deak sitting with a stranger (also with Hope Kids).  She smiled and said, "He is a very wiggly big guy."  I was so grateful for her kind smile and "I have so been here before" nod as I thanked her for her help.

We made it about 90 minutes, before I made the choice to leave.  I wanted to leave on a high note, with a happy Deak, so that the memory he forged would be one of joy, rather than uneasiness.

My eyes could not stop themselves from tearing up the entire drive home.
I was proud.
Proud of me for doing something hard, proud of Abby and her ability to be so unassuming and protective while Deak unknowingly garnishes 99% of the attention while in public, and proud of my sweet boy.
Not because he had made it easy, but because he sure makes things worth it.

We, for one night, were as close to our version of "normal" as we could be.
Our own little miracle memory-making experience.

Eating popcorn...

Listening to the big trucks and feeling the vibrations through his seat...

And, eating more popcorn.

Love.

I've been told recently, that I "love too much sometimes."
As if that is a bad thing...
I guess to some, it implies weakness; that if one "loves too much," they will inevitably choose unwisely at times and feel pain.

I distinctly remember the first time my heart hurt.  I thought, "Wow. My heart actually hurts."  It was painful and sharp and I didn't know if I was going to ever feel happy again.
But, I did
We always do.
It didn't make my experience of loving any less significant.

I had a conversation with a friend last week, and we were discussing what it takes at times to do the work we do (with struggling kids).  I relayed that when I first began working for the Division of Youth Corrections, I was at best, about 4 years older than most of the inmates.  In some cases, I was nearly the exact same age. I attempted to fuel my insecurity by setting strict limits and boundaries; I wanted to make it clear that the kids knew who was in charge. After a few months of attempting this strategy, I was frustrated, and wondered why I wasn't relating to any of the kids.  I had an excellent boss, who taught me my most valuable lesson to date:
"Guess what? No one is going to love you, if you don't love them first."
He was right.
The second I learned to stop pretending to be the hard ass that I never was, I found joy in establishing relationships with the kids who were serving time.
I loved them.
And, not unlike myself, that is all it took to create compliance (most of the time:).

Now, my job is a little easier, because the kids are cute tiny bodied humans.
But, man how I love them.
Especially the butt-heads.
I just do.

So...what this person didn't know who made this comment referencing the amount of love I share at work, is that he unknowingly gave me my most favorite compliment.

I do unashamedly love.
It's who I am.

Again.

We are doing it again.
The 2nd Annual Deak's Run for Hope is scheduled for May 12, 2012.
I wouldn't miss it, if I were you.
See www.deaksrunforhope.blogspot.com for details.

Christmas Day 2011

I knew it may be a rough day, when Abby came into my room at 5:00 am, not asking about Santa...but, asking to get in the tub because she was sick.  It took her a couple of hours to even really care about the gifts, but in true Abby style, she powered through and was sweet and kind and grateful all day long.  Our Christmas mornings are not short. It is very important to Abby that Deak gets to take his "turns" opening gifts, and she very sweetly helps him open each one; showing each package to him and explaining all the fun things he gets to do with it.  I don't know what could exemplify the true meaning of the day more.  She inspires me.

This was the first real "tween" year for Ab...full of JB perfume and a cell phone (which she doesn't use too often). She also loved the Monster High Dolls and pirate ship from her dad.

Deak, well, Deak's was about buttons...as usual. He also got a jumping horse replacement for the one he wore out a year ago.

A pretty perfect day.

The Cell Phone...

The Jumping Horse...

Our traditional homemade buttermilk pancake breakfast...

Deak and Trip (Maddi's puppy), back watching youtube videos on the ipad.

Christmas Eve 2011