Along our journey, I have been searching for ways to cope, grieve, and find some happiness. I am pulled in so many directions on a daily basis, that I rarely have the time. I enjoy those little moments when Jaylyn does even the smallest unexpected thing. Its a celebration. Those rare moments when she purposefully uses her right hand are monumental to me. She has surprised me and those "experts" with how well she is doing compared to so many others with the same diagnoses.
With that in mind, it certainly does not take away from the reality of it. The facts. So when I am excitingly updating a family member, and those unfortunate but well meaning words cross their lips, "maybe the Drs are wrong and she will be normal", my head falls heavy into my hands. I feel like you are calling me a liar and Jaylyn a faker. That perhaps I am exaggerating the severity of this. I assure you, I AM NOT. Its great to be hopeful and have faith that "everything will be fine". But the reality and facts cannot go ignored.
And just what prompted me to write this? The other day, after giving Jaylyn her first dose of seizure meds for the day, she gingerly reached for the syringe and explored it with both hands. Hooray! And as quick as I was to celebrate this event, the words that followed out of my typical daughter's mouth broke my heart. It certainly was not intentional, but it made me realize just how hurtful those false hopes AND reality really are. How do you explain such a thing to an 11 year old so that she could possibly understand? And so I remained silent, faked a smile and cried in private like I often do. It took over 24 hours to gain the composure to address just what she had said.
As Jaylyn explored the syringe, Sam had said "maybe she will grow up to be a doctor!". Those words were so full of hope and anticipation, that I was not prepared or willing to crush that dream...at that time. What was running through my mind was "if she grows up", "if she becomes ambulatory", "if she becomes verbal", "if she lives". I try my best not to be a Debbie Downer, but lets face it, when your child is diagnosed with not 1 but 2 brain abnormalities that shorten their lifespan, it does get me down.
The truth is, we do not know just what Jaylyn's future will hold, what she will and wont be capable of. There are many a "what ifs", but I am not prepared for the devastation my other children's false hopes may bring in the future either. So whats a mom to do? After thinking, crying, and talking with Jay, it was yet again time to sit my typical daughter down for a talk and a gentle reality check.
As kindly as I could, I reminded her of the conversation and of her words. She saw that I had tears in my eyes and began crying herself. She knew! I had explained again about Jaylyn's condition and her response was still so full of hope. "I was just hoping Jaylyn would grow up to do something big." I explained that her waking up to see another day is BIG. Every time she smiles is BIG. Her determination and drive and resulting progress is HUGE! And that is what matters. To focus on the day we have with her. To enjoy and celebrate the accomplishments she is making now, because tomorrow is a promise that is so easily broken.
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