Monday, March 10, 2014

The Diagnosis.

*March is Cerebral Palsy Awareness Month. I am sharing a series of posts about my amazing children, in the hope that by hearing our story, you'll be more aware of the stories around you!*

I do not gamble. Ok, so I have never gambled -- unless you count the penny poker the senior boys taught us on the church bus driving to North Carolina one summer -- but if I were inclined to gamble, I certainly wouldn't any longer! Numbers seem to work in an opposite-from-the-rest-of-the-world-way for me.

For example, the odds of having triplets are one in 700 or something crazy like that. No wonder every one was shocked when an early ultrasound showed three babies!

And though the odds of premature babies developing Cerebral Palsy (CP) is high -- nearly half of children with CP were born prematurely -- there are usually signs in their Neonatal Intensive Care (NICU) stay that warn of that. We had none of those.

My Benjamin came home from the hospital more than a month before his due date. He was a strapping 4 pounds -- huge compared to the 2 lb. 15 oz baby he had been weeks before -- and was doing so beautifully. We had no indication that within months we would be concerned about developmental milestones and worried he might have CP.

Sweet Mason was more troublesome in the NICU. But he had barely weighed two pounds at birth so no one was really surprised. His every breath and every added ounce was a miracle. Any yet, scans of his brain showed no signs that developmental delays might be a part of his future.

It was our darling Claire who scared us the most in the NICU. She showed signs of seizure activity and so the doctors kept her extremely sedated. I wanted to see her little eyes so desperately, but she was content to sleep and get her beauty rest. When we brought her home, we were certain she was the special needs child of the three. When the neurologist cleared her at her first follow-up visit of any seizures or even the need to follow her -- we rejoiced.

We thought clearing that hurdle meant we had three healthy babies and we could begin the fun stuff! The odds were with us, right?

I had a girlfriend who had a baby boy born on the triplets' due date. I loved getting together with Jill for  months. We discussed everything from baby food to diapers to....well, you know, all the stuff new moms discuss. But then the kids reached the point where her cute little fellow was sitting up and none of my three were. Play dates became hard. I felt a stabbing pain every time we were together. (Oh, how I wish I could say this has gotten easier...but almost 17 years into this ride, listening to Moms list their son's accomplishments can still feel like a dagger.)

I questioned our pediatrician and she gave me every assurance that premature babies take longer to reach milestones. She was not concerned in the least.

But when they reached nine months and Claire was sitting, crawling and making the milestones my books said she should be making....and Mason was trying, oh how he tried. He would watch his sister and then work with all his might to emulate her behavior. But my Benjamin was content to sit with his Mommy and give me all kinds of delight. He was talking already. He could recognize the Mickey Mouse Clubhouse song in two notes and he was an absolute joy. But he didn't move. He didn't roll. He didn't try to crawl. And he could not sit.

Our pediatrician ordered physical and occupational therapy to begin for the boys. But she still assured me that all was well. They just needed a boost, she said.

I quit reading the books. I really didn't need to know where they "should" be. I quit meeting with my friend. It was too hard to see her son move and groove.

My best friend became the boys' occupational therapist. When Susan held up a strand of beads and told Benjamin to reach for it, I would ask why in the world he needed to do that. Susan would calmly explain that we needed him to reach across midline -- developmentally she explained, this is a huge step. Benjamin could not. Through tears, I would ask Susan what it meant for his future if he never reached across midline, she would cry with me as she explained and then she would go back to working, pushing, and teaching my boys to do what their brains were not wired to do naturally.

On the day before the triplets turned one, Wade and I took the boys to see a developmental pediatrician. It was the worst appointment of my life. We were this doctor's first appointment of the day. He was more than an hour late. (Traffic he said.) Benjamin had a temperature of 102 degrees. He was lethargic in my arms and yet, we felt the appointment was too important to miss.

"Of course these boys have Cerebral Palsy. What did you think I would tell you today?" he informed us within minutes of meeting our little family.

With tears running down my face, I explained about Benjamin's strabismus (his eyes crossed) and how he was scheduled for surgery later that week. I explained that his physical therapist thought once his vision was corrected he would reach across midline and begin making developmental progress. I am certain my tone was desperate, hopeful, trying to make him give us something to cling to.

"Ma'am, I have seen blind babies with more head control than your son. Eye surgery will make no difference."

We never visited that doctor's office again. Though months later we would run into him on our way to therapy. He didn't recognize the boys -- because although he was right about the Cerebral Palsy diagnosis he was wrong about Benjamin's head control. He didn't account for the sick, sick baby in my arms that day who simply didn't feel like holding his head up. So when he saw my boys sitting up, entertaining all who walked by them, he was shocked.  Of course.

My phone began ringing off the hook as the news of the diagnosis spread to family and friends around the country. And it was in those calls of encouragement that I realized we would make it.

I found my assurance as I offered assurance to all that called: Our boys had not changed one bit from who they were the day before the diagnosis. They were the same adorable little boys they had been before we had a label and they would continue to be the same. Our job as parents, grandparents and loved ones did not change with a diagnosis. Oh, there would be more obstacles to overcome and more fears, more tears and some heartache but our JOB did not change: We were to cheer them to their fullest potential; we were to knock down barriers and find ways to help them succeed.

The same job I have as Claire's Mom and Cate's Mom. No change.

We have chosen to add to those responsibilities: My husband works tirelessly to help families like our's. As a pediatric orthopedic surgeon, it is his job to help children with Cerebral Palsy reach their potential. Further, he does hours and hours of research to expand his knowledge as well as the knowledge of those who care for the more than 17 million people with CP around the world.

My boys advocate for special needs awareness, they speak to education majors each semester to inform, educate and ensure that they are better equipped to teach any students with special needs in their classrooms. My Claire doesn't have Cerebral Palsy, but yet she also advocates for special needs children through her blog, her work with the special needs ministry at our church and with her desire to become an occupational therapist. And our Cate....well, at three she almost socked a boy for calling her brother weird. She has mellowed in her methods, but at 8 years old, she is one of their biggest fans!

We are a blessed family -- and though there are certainly challenges the blessings far outweigh the trials. Far far outweigh.

So, though counting cards, or dice, or any manner of gambling is not my thing, you can always find me right here -- counting my blessings all day long!


Brianne Pitts said...

This post hits my heart. I remember my mom telling me a similar story about a less than kind physician that told her I would never walk and for my parents to accept that I will be wheel chair bound and mentally "slow". I have always been on the CP side of the equation, never on my moms. Hearing you tell your stories and now having a child of my own opens my eyes to just how difficult it would be to be the mother of a special needs child. It only makes me respect my mom and you more. Parents like you help "kids" like me show those doctors just how wrong they were! Thank you for always sharing. Your most make me proud to be in the same special group as your boys :)

Kaliki Ayche said...

Carol- thank you for writing this.

I bawled the entire way through it, as I'm a new mom to a special needs baby (Diagnosis uncertain so far) who also can't sit, can't walk, can't grab things midline, and is non verbal so far.

I hurt every time I see my niece- two months older than my daughter- talking, interacting, running, jumping.

I know this won't ever get better, but thank you for giving hope & inspiration. Grow With Me- Joy O- sent me to read your blog :)