So, this week marks the end of March, which only leaves April to come in like a Lamb. It also means that Ivey’s second birthday is fast approaching. I can’t believe another year has passed. The days before Ivey are memories of a different person living my life. Two years ago seems like it was a lifetime ago and this past year is but a flash behind me.
Someone told me a couple of months ago that parents of special need children begin to truly come out of the fog around the second year. Maybe so; at least it feels like it. One thing for certain, there is still a long journey ahead of us. However, now I can honestly say that I look forward to the future. For so long the certainty of ‘tomorrow’ was suffocating, actually depressing. Now I am finally wrapping my head around the acceptance that our days are full, they are busy, they circle around medical yip-yap, but they are good.
I went to the mall a few weeks ago in a rush to try and grab Easter outfits for the boys. I was in a panic trying to be prepared for uncertainty. Ivey’s seizures have increased significantly in the past three weeks. That particular day marked the end of 72 hours of at least 7 seizures. I had not started Easter shopping so I frantically rushed out to the mall in the event a catastrophe was in the make. The dreaded ‘other shoe’ seemed about to drop and a hospital stay seemed possible.
There were two older women, probably in their late sixties or early seventies walking the mall. Maybe it was a flash of my future, maybe it was me making something out of nothing, maybe it was God saying slow down ‘this is only one day of thousands’. But with the two women was a girl (with special needs) probably in her late thirties in an adult stroller. The women were wrapped up in conversation; the girl was smiling.
I did what I hate for others to do. I stopped. I stared. They didn’t even notice. I fought back tears.
They were not sad tears or even happy tears. They were just tears. Tears from an indescribable emotion that wells up every so often. Part of me wanted to approach the woman and tell her how much I admire her. I wanted to ask her to tell me ’how to do it for a lifetime’. I wanted to ask her if she still has days like this, will there always be these moments. I wanted to tell her friend how special she must be. Another part of me breathed a sigh of relief that the future will still be the future. A twinge of regret reminded me how different my future will be from that of my friends and how Ivey’s future will not be like that of her brothers. Mostly, I smiled through tears at the image of myself with silver hair and orthopedic shoes strolling or guiding Ivey through the mall with a friend also with silver hair in pants with an elastic waist band – all three of us oblivious to our surroundings with many years behind us – uncertainties still ahead of us – but living a life well deserved.
Confessions from the mind of this sleep deprived mom navigating the world of complex medical needs, deafblindness, and special education. And y'all, it may not always be pretty, but it's real, and it's always for the love of Ivey.
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4 comments:
Beautiful post! I hope I am that elastic-band wearing, silver haired lady next to you.
You don't know me, but I'm touched by your blog. I've really enjoyed reading about your story and learning about Ivey (We adopted a little girl, Gwenelise, with Acer's family) Thank you for sharing your story. I've been touched by your beautiful family!
Erika
I feel this way sometimes when I think of Ava trying to navigate her way through the world..always with her cane or maybe a dog by her side. It hurts and it's wonderful - so many mixed emotions. I think of this nearly every time I jump in my car and drive wherever I want to go. The freedoms that we often take for granted, right? Ivey has come so far in her almost 2 years of life; who knows what lies ahead for her? Whatever it is, she will have a loving family by her side.
xoxo,
Megan
Hi--I found your blog through a link on another blog awhile back. We too have a special needs daughter & relate in many ways to your story. Ivey is beautiful and I can tell she has a wonderful family. Take care, Carrie
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