The irony of Will competing and advancing in his first speech meet has not been lost on me. In fact, I may have been the only mom in the audience yesterday with a tear (or 3) in her eye. You see, we've been watching Will's moth and jaw since those scary ultrasounds. Part of his syndrome can include jaw and mouth complications. We began meeting with his pediatric craniofacial surgeon when he was just a few days old in the NICU. He began speech therapy at 3 months old and had 2.5 mouth surgeries by age 2.5. (The half surgery includes that time they put him under anesthesia and realized his jaw wasn't big enough to complete the operation on.) We've traveled as far as Boston (twice) to get second opinions from one of the world's most renowned pedi craniofacial surgeons. (Turns out, we had a world renowned one closer to home too!) We continue to see his surgeon for consults and to explore possible options. By age 6, he began regularly seeing an orthodontist. Few know this side of his medical journey as I suppose, limbs are more obvious. Also, we don't focus on his differences so it just is all part of our normal.
Goodness the tears and many questions I've asked of that surgeon. If I could go back to that young, scared mama, I would assure her that yes, he will eat ice cream cones no problem. And yes, he will be a lover of words and expression. And yes, he will even win the first round of his first speech meet the same week he is preparing for a speaking role in his 4th play!
Except maybe I wouldn't take all that wonder and fear from her. That mama needed to learn to trust her God and to see Him work miracle after miracle with her son. Without that wondering, maybe this mama would take too much for granted.
Will didn't win the second round of the speech meet yesterday. But, oh the knowing of his victory over medical complications & his courage he displayed to go alone in front of the judges and audience! We are so proud of him. We are so thankful for this journey- though it is sometimes hard and grueling, the joys are great and the miracles we get to see (or hear as the case may be) are precious. This boy amazes me.
3 thoughts:
You weren't the only mama with tears in her eyes and a lump in her throat....😘
That is great to hear. Kharan has the scary cranio-facial 'stuff' always looming. They talked about how he absolutely would need jaw extensions surgery twice then his 8 year old apnea test was completely clear...dropped from 5 to 0.7 (due I think to having summer vs winter testing). Anyway changed to 1 surgery in teens/pre-teens but then/now they said at last visit the fear the surgery would be detrimental due to tongue which is extremely small and so they thing now any lengthening of jaw will mean increased risk of food aspiration. He is starting orthodontic now to 'set up for any future required surgeries' though (and to hopefully protect his two top teeth that have been chipped more than 12 different times in 5 years! Ice Skating is the thing that he loves to do that makes me teary eyed every time.
It's always been sad to me that Kharan still cannot lick an ice cream cone :(
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