doctor visits and birthday cakes

Who looks forward to a doctor’s appointment? Marilee, our grandson Louis and I cautiously crossed over 2nd Avenue in Manhattan during rush hour. I was preoccupied with the total confusion. Not so Louis. He was excited about his upcoming birthday, spouting a long list of details. As if that weren’t thrilling enough, today he was about to introduce me to his favorite doctor!

Louis has had the best of care since birth. Fortunately a need for thyroid management was detected early on. Visits to the endocrinologist are now down to a few times a year. Most of us would relate the term thyroid to weight problems. But what does it do? Simply put, the hormones produced by this gland help the body in regulating energy and affect mental and physical development.

Persons with Down syndrome are more prone to a thyroid condition called hypothyroidism, with frequency increasing in the adult population. It means the thyroid hormone is below the optimal level. The common remedy is synthroid, a tiny pill that raises the hormone level, but must be checked by a periodic blood test to ensure it’s not too high or low. Anyone with Down syndrome should be tested from time to time. Also check out this link http://www.downs-syndrome.org.uk/for-families-and-carers/healthand- well-being/thyroid/ for tips.

So you get the picture. A blood draw was inevitable, but we’ll get to that a little later. We met our daughter at the doctor’s office. Louis was so proud as he took my hand and with a big grin, said to the doctor, “This is Poppy!”

He’s quite familiar with the exam routine and promptly lay down on the examination table. After he was checked, measured and weighed, he insisted on my being weighed and measured too. I won’t discuss the weight, but I am 1/2” shorter than I was last year. Next we were off to the medical center for the blood work. He’d done this numerous times, often with great trepidation. This was the first time I had accompanied him.

Today he was going to be “very brave”. We practiced in the waiting room. He sat on my lap and held out his arm. I joked that maybe we could fool the nurse if I stuck out my arm and tucked his arm underneath. “No, Poppy, you don’t have an appointment. It’s my turn,” he said as he put his arm back up. There was such honesty in this action. Louis has always been honest in his feelings, even when he could not express them verbally. As his birthday approaches, I’m reminded of the milestones he’s achieved, and how far I’ve come, too. I remember his persistent babbling as a two-year-old, and my feeble expectation that he might be understandable by age eight. He is now eight years old. Shame on me for not seeing the potential within. And that his spirit would shine, verbal or non-verbal.

We waited for his name to be called. Enough time for another diversionary conversation. Louis loves Halloween. He talked about vampires, monsters and zombies. About how he wanted his birthday party to be all about Halloween. I told him we’d make a special cake for him.

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Soon the call came. He hopped off my lap, took his Mom’s hand along with mine and together we entered the sterile little room. I sat down in “the chair” and he jumped back up in my lap. So far, so good. The nurse explained the rules: no kicking, no hitting. Louis was ready. He stretched out his arm. The technician probed and then the needle came into view. I prepared to hold him tightly. Jen stood beside, concerned but with a mother’s smile that said you can do this. Knowing the time had come, he exclaimed in one self-convincing sentence, “No, no, no, OK, OK, I’m brave, I’m brave!”

When Louis has his blood drawn, he actually watches the entire process. He is a big proponent of “Nothing about me without me.” As the vial filled he declared, “ I AM brave! I AM brave!” The deed was done. He commented to people in the waiting room about his bravery. In the hospital lobby, he proudly raised his bandaged arm to the deli clerk and cheered, “They sucked my blood!”

The following Sunday, the great “Halloween” birthday party was a big success. Grandma and I had made a chocolate-orange-chocolate layer cake with white and orange frosting. On top was a pile of crushed chocolate wafers with two zombie arms rising out of it.

Spooky spiders crawled all over the cake. Louis sat back at the table taking it all in. Focusing on the eight monster candles, he said, “OK everybody, this is going to be a big blow!” And so it was. My grandson lives his life with gusto! He loves the adventure. He relishes celebration. He thrives on feeling special – we all do. “Nothing about me without me.” As true advocates we become part of the “me”.

We at GiGi’s Playhouse invite you. Take that “me” part through our doors and experience the magic. Imagine the feelings of each individual in the space, sometimes feelings that cannot be expressed in words. Working together we continue to bring this environment of love to the world.

Happy Birthday, Louis! Happy 13th Birthday, Gigi’s Playhouse! October is Down Syndrome ACCEPTANCE Month. #Generation G! “This is going to be a big blow!”

Richard Reilly
The Grandparent Connection

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