Wednesday, November 16, 2016

clarity.



I've been trying so hard for days to find the words to say this. How does a Mother ever find the strength to share such devastating news?

On Monday morning, Evie's neurologist called and told me that Evie has Rett Syndrome. For 5 weeks, we've been anxiously awaiting the results of this test, and honestly, Rett has always been our deepest fear. As the most severe form of genetic autism, Rett will likely rob Evie of many of her current abilities as the years pass by. We now understand what a miracle it has been that we've had nearly 6 years without many of these physical symptoms, where many sweet children with Rett lose them all before they're even 2, or never gain them at all.

To say we are devastated would be a gross understatement. There just aren't words to say what Evie means to Greg and I; she is the most special thing in our world. Both of us would do, and have done, absolutely anything to help her. From therapy, to expensive schools, to weighted blankets and vests, to modifications to our home and routines, to dietary interventions, we have tried so hard. This changes nothing in that regard. We will continue to fight with all our might.

The good news is that Rett has been proven to be reversible in laboratory mice, and much research is being done in this field every day. We will move forward with hope in our hearts that perhaps someday there might be a cure.

I know many of you have been grieving this right along with us, and I can't adequately say what it means. I've had so many friends knock on my door just to hug and cry with me, and I have needed each and every one of you. The weight of the sadness we feel is too crushing for us to carry alone. My heart is full of such gratitude for everyone who is helping shoulder it, and for all of you who have sent me your strength and courage. I could never share this news without it.

3 years ago, I wrote a post just like this when I had to tell the world that Evie had Autism, and now, here I am again. I am clinging to the memory of how all of that unfolded the first time around, and reminding myself that what was initially a crushing devastation, soon just became normal life, and with time, became a life we could love.

I know that we'll get there again, and that with time, this will feel normal and will be a reality we can accept, and maybe even cherish. Peace will come. But first, we have to grieve.

I said once to a friend that I would take all of this away from Evie if I could, but that also, Evie's life has resulted in everything that's most precious to me in mine. I mean that more now than ever. She has caused so much growth, love, understanding, compassion, self-discovery, and empathy. It is an honor to be her Mom and to be changed so profoundly by her spirit in all of these ways. She is everything good and beautiful in this world and deserves to be surrounded with all the love and hope every one of us can muster.

A Rett diagnosis is a devastating blow.  Our hearts are absolutely broken, and I won't try to sugar-coat that. But, even amidst a broken heart, I also know that Evie's life is still just as meaningful and special as we ever hoped it would be. More than anything, I pray she continues to dazzle us all with her beautiful smile, and that our family will continue to find reasons to rejoice every day.

We will learn to love this new reality. I know that's something we can always do.
And, for what it's worth, I believe there are still miracles ahead.



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thank you for your shout outs!