Saturday, August 27, 2011

One year we are a year later to the date of finding out our life was about to change. In a much larger, hard to comprehend, impossible to know what to feel, think...plan...all so much of a blur and at the same time, so easy to touch it, feel it, remember it. We didn't know a year ago what this year had in store and I honestly wish I could say that it has been easier, more pretty than it really has. But it hasn't. The easy part, well that is loving and holding and smelling the most amazingly, precious, adorable, beautiful baby boy in the is heaven. It is everything you want, imagine and plan for when you have and desire a baby. It truly is. The love is the same, exactly the same, it fills every pore of your being and overflows into your family, each loving and cherishing him just as they should.

What is different? What is challenging...well....when you bring a diagnosis as major as Down Syndrome, there is a lot to digest in the beginning...heart issues...nope....feeding problems...minor....ears needing tubes to help drain wax...check. But, really it's a lot of appointments, a lot of planning as to how to proceed with his future. But then...just then...when you are settling into a diagnosis as large and encompassing as DS, we got hit. A WHAMMY of a shock. Infantile Spasms. Epilepsy. A label he will endure for the remainder of his life. It doesn't go away, you don't have epilepsy and then next year doesn't come and visit and then leave. So, seizures, that was a pill, I am still struggling to swallow. It's been 2 months since we found out, our son wasn't simply "struggling" with delays of DS, but seizures. Constantly striking his brain 100 times a day. Wow. Wow...WOW. It's honestly still so hard to wrap my brain around. He was on intense steroids. It was awful. Really really awful. But...there was so much good, strength and hope that came from that treatment, he has been seizure free for 6 weeks now. AMAZING. He now smiles ALL. THE. TIME. It is such a gift, a gift of epic proportions. He giggles, he chats, endlessly. It all seems so rosy. And then it hits me. Hits me what seizures really did to my life and our life.

They really robbed my hope for his future. I know I know, I can't let them do that. I need to keep on, keep staying strong, long for more. But, wow, it is a lot harder than I knew. Still not close to sitting up. One year later and still not sitting up. Doesn't really do much of anything besides his social improvement. And it just strikes you. Like, HELLO, you can't keep dreaming that big anymore? You can't keep lying to yourself. At some point you have to except where he is and what he may not get to experience in the future. I hope this goes away soon. But right now, on the year anniversary it stings more than normal, I just really really really thought, I would look back on this day and think, "wow, what was I so worried about?" and just don't say that..and that disappoints me personally, that I can't be stronger about the situation and have well...more hope.

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