Sunday, October 19, 2014

Counting emotions as lessons learned.

Seventeen years into mothering my amazing trio, we have faced more surgeries than I would have ever imagined. For children with Cerebral Palsy, most surgeries are needs but are not life or death situations. And yet, because of the fragility resulting from being born premature, no surgery is without risk.

We began walking this stressful road of surgeries around the trio's first birthday when Benjamin had eye surgery to correct his strabismus (crossing eyes). When he turned three we had to face it again:

May 10, 2000 -- "Today Benjamin's x-rays showed no signs of change in  his hips. This is both good and bad news however. It is GREAT that they haven't gotten any worse. BUT we've really been treating him aggressively and we were hoping for an improvement. Since there was none, the doctor wants to consider surgery to release the tendons (loosen the muscles) in an effort to allow that hip joint to develop better. This surgery.....would require this increasingly active three-year-old to be in a hip and leg cast for 6-8 weeks, which would set him back in his walking, and possibly frustrate him terribly!...there is no clear answer if we SHOULD or SHOULD NOT do the surgery. Please pray that we will have an answer as to which direction to take."

Oh mercy, this 31 Day Writing Challenge is testing my resolve to finish what I start. I love looking through old pictures and I love reminiscing about the sweet things my beautiful trio have done over the years. But delving into the surgery-decision-making times physically hurts my heart.

Wade was in residency during these early days of our facing the challenges of special needs parenthood. Already in Orthopedics, we were both feeling strongly that he should specialize in pediatric orthopedics in order to help boys and girls like Benjamin and Mason. But with that calling, Wade was also feeling the stress of having to make decisions about his sons' treatment -- balancing doctor and daddy.

Decisions concerning Cerebral Palsy are rarely clear-cut. Will this surgery improve the child's chances of walking? Or if they walk will the surgery improve their gait? Will the surgery prevent painful joints later in life?

What surgeries for children with Cerebral Palsy can NOT do, is cure Cerebral Palsy. So no surgery is a "fix" -- every surgery is just a help. This can be hard for the patient, hard for the Mommy and hard for the Doctor/Daddy.

This three-year-old surgery was simply being done to try desperately to prevent another bigger surgery down the road -- or in Benjamin's case to stave off the surgery for as long as possible. (More on this in a later post.)

As painful, stressful and hard as every single decision has been in terms of Benjamin and Mason's care, I choose not to count the tears, not to count the heartache. No. Today I know that what counts, what really counts, is that my wonderful Wade has taken every thing he has learned in our decision-making processes and allowed that -- the tears, the recovery process, the outcomes -- to color his role as a pediatric orthopedic surgeon for children with Cerebral Palsy. 

Carol - The Blessings Counter

Saturday, October 18, 2014

Counting more than steps.

I'm more than halfway through this writing challenge -- exploring old emails from a young mama me to my best girlfriend. I shared hopes, dreams and fears with my friend sending my thoughts across the web knowing that she would not judge me; knowing my deepest fears were safe with her; knowing that she would love me and more importantly love my children regardless of what I shared. 

It is no little thing that I am trusting you with the same. Thank you for joining me here.

May 10, 2000 -- "Let me give you an update on Benjamin: Since Christmas he has been experimenting with his own walker and doing remarkable. Then in late March we put wheels on the back of the walker and he has been walking independently ever since!! He is sooo proud of himself and his frustration level has decreased tremendously! He is quite adorable walking and walking and we are really focusing on transitioning in and out of the walker (he can't do that by himself yet) and working on his endurance (he gets really tired!). So this wonderful child has made huge progress in the last couple of months!"

Not so-young Mama-me can speak authoritatively about how walking is not the end-all, be-all. I can urge parents to embrace their child's abilities. I can urge them to focus on their child's strength. And I stand firm that all of those things are important.

But reading my emails takes me right back to the season when young-mama-me thought it was, thought walking meant everything as a matter of fact. Oh my heart.

Benjamin did walk with his walker. He could push it forward and then the momentum would take over and he would move to catch up. His little legs didn't always touch the ground in between steps and he was so exhausted when he reached his destination. 

But the focus in young children is walking, walking, always walking! We center so much on children walking -- it is usually the first question I was asked when they were little and I still get the question today: "Will he ever walk?"  Or more recently "Will the surgery allow him to walk?"

For some reason we equate walking with wholeness. We think that the ability to put one foot in front of the other is the pinnacle of development.

We worked hard to teach him to transition into his walker himself. One day his physical therapist had the walker right up to his stroller, with her assistance, he slid himself from the stroller seat into the little walker. But he was facing backwards. 

Physical Therapist: "Well Benjamin, what are you going to do now? How will you turn yourself around?"

Benjamin (with a huge grin): "Well, I guess I'll do the Hokey-Pokey!"

Oh dear ones, walking does not make us whole. Let's look at where our children excel -- where their strengths lie. My Benjamin does not walk at 17. But he still cracks the best jokes, is the most creative person I know, and makes me smile from ear to ear.

Can we learn to count what really counts?

Carol - The Blessings Counter

Friday, October 17, 2014

Counting two grandmothers with a thankful heart.

I'm especially homesick these days. The fact that my Mississippi State bulldogs are the #1 football team in the nation makes me want to plop right down in the middle of campus and just stay there!! (Did y'all notice I found a way to mention my team being #1 again?!)

Added to that ever-constant desire to be back at MSU, both my mom and Wade's mom have had a rough year.

Grammie with Baby Cate (Because she is not getting much attention in my blog series...I thought perhaps a few pictures of my Little Red were in order!)

Grandmar and Cate.

My Mom has bounced back beautifully from her heart issues of last fall. But even as she was in the midst of all the new routines the doctors put in place for her, a tornado hit her neighborhood damaging most of the homes and much of her town in general. It was a scary time for me and my brothers as we could not even get to her to help (Amazing family and friends jumped right in and took care of her for us -- I am ever grateful!).

And this week, Wade's mom began radiation therapy in a battle to fight breast cancer. The doctors are optimistic that they removed all of the cancer but the radiation is an extra measure of assurance. The distance to Mississippi from the desert seems increasingly far.

So it seems only right that tonight's post in my 31 day challenge should be about my precious then-not-quite-two-year-old Benjamin talking about his grandmothers:

Feb. 26, 1999 -- "Benjamin has started saying "Nanmar" and "Nammie"....what originally was Grandmar (Wade's mother...Grandmother Marsha....get it?) and Grammie (My mother....just cause I liked it!)....we'll see if the other two pick it up! He is such a loving little boy. I've been showing them pics of Marsha and Mother trying to teach them their names. And Wednesday night when Benjamin said Nanmar for the first time...I told Wade to show him the pic and ask him who it was. Well, Wade gave him the pic to hold...when I came back into the room I could hear Benjamin saying "Ooooh--weee" and I looked around (I was dressing Mason) and Benjamin was kissing the picture of Marsha! It was the sweetest thing! What a love!"

Even though the triplets grew up far away from the grandmothers, there was never a time that they did not know them. In the days before FaceTime, I would have pictures of these women sitting around their room in an attempt to teach them exactly who they were. And they knew.

Cate was no different. We talked about Grammie and Grandmar and she always knew. There was never doubt about who they were when they visited! What a gift.

Counting the miles from home can be a bit daunting.

Counting the joys of time together is a much better use of my time!

Carol - The Blessings Counter