I am excited to write that this journey we have been on is beginning the next phase. I feel like we have run the adoption marathon and now are beginning an Ironman in Combatting rare chromosome disorder. We know there are going to be blisters along the way but the prize is worth it. We are setting out to fund and find treatment possibilities for our daughter and are blessed to partner with amazing scientists eager to help. We have some great ideas, which of course need propelled by funds. Grants are not going to be readily available for such a rare disease so it is really up to us. So we are working with some of our best friends and community leaders to plan exciting fundraisers and raise awareness and money for this cause. Thank you for supporting us. We will soon have 501c3 status so your donations will be tax deductible. Please share and follow. And God bless these efforts.
Moriah doesn’t talk like a nearly 2 year old usually does. She doesn’t even say, “mama”. She doesn’t mimic me when I repeat sounds and words she should be able to understand by now.
That is what you all want me to say, right. YET! You all want me to believe she will. You have all been so supportive and keep me looking up. And Moriah Joy certainly keeps me hoping and believing. But I struggle with the scientific realist mind innate in me and the God-breathed strength and faith gifted in me. I struggle with the longing I have to hear my daughter’s voice call for me and the knowledge that there are children living my fear.
I have been blessed by Rare Chromosome Disorder Outreach to be connected with two other moms of girls with similar X chromosome deletions. These beautiful girls are 8 years old. And they are so much like Moriah. In many ways. They have bright happy smiles. They have similar excited hand motions. They don’t speak but use other communication efforts with pictures. They have low muscle tone too. The similarities go on.
These awesome mamas have welcomed me with open arms, so blessed to have another concerned mama that understands the fear of the unknown, the frustration of feeling alone with so few cases of this deletion… They don’t have the privilege of knowing what the future holds but are grateful to share a few years into our future. They have alerted me to the different types of seizures their girls experienced after age 3 and the medicines that they have tried. They have told me about their special educational classes, autism diagnosis challenges, and the anxiety that is characteristic of Fragile X.
What can I say? I have had some wind sucked out me. I feel blessed to have some new companionship and scared I know too much. I go through about every emotion possible everyday. I know I need to stay in the present yet I keep searching for answers to the future. I just want to be real, people. I struggle. I have a hard time just celebrating the victories. And there have been victories! Way more than challenges lately. Despite ear infection and three horrible sinus infections since her surgery 3 months ago, she has progressed very well with play, with eating, making new sounds, and trying to mimic… She is so proud of herself too I think. She has learned some hand gestures to songs and it gives us a great tool to teach her more. But I struggle to stay in the joy. I spend most of my day emailing specialists and scientists and reading papers and thinking of ways to help her. I feel God leading me. I know I am supposed to do this. As long as I remain in her joy and in the present. God has gone before me and he doesn’t need me to sprint out ahead. But everyday, he puts some great opportunities before me. EVERY DAY my to-do list grows. I have to believe this stirring I have is from Him. What if He has created me to be the mom and the scientist for just this need and time? What if the questions that keep driving me for answers are not out of angst and worry but out of PURPOSE and JOY?! And I can’t wait to share more with you in the next month!!! Doors are opening and plans are in place…
He has made me a storyteller. I am her voice (until she gets her own!-that’s my “YET”, friends). I was blessed to share our unique adoption story and now I will continue our story, wherever that leads. (Check out this cool video)
“…With every page that turns I see your faithfulness Oh the mountain where I climbed The valley where I fell You were there all along That’s the story I’ll tell You brought the pieces together Made me this storyteller Now I know it is well, it is well That’s the story I’ll tell There were some nights that felt like They would last forever But you kept me breathing You were with me right then And all that you have done for me I could never hold it in So here’s to me telling this story Over and over again Oh the mountain where I climbed The valley where I fell You were there all along That’s the story I’ll tell You brought the pieces together Made me this storyteller Now I know it is well, it is well That’s the story I’ll tell You hold the broken You hear my every cry, every cry My eyes are open I know that it is well, it is well.”
Boy, these words speak to me. And the video is perfect. God takes our brokenness and makes it part of our story of victory and redemption and joy for His glory. I know the world doesn’t teach us to embrace our brokenness. But what if we let God fill the brokenness with Him? Moriah has a broken chromosome that is actually pretty revealing of what is broken in me.
And wow, when my eyes are open to what God is doing for His good, I can honestly say, “it is well!”
My 9 year old son Sy reminds me that is not about the destination but the journey. He is pretty wise. I am on a journey, my friends, and I am bringing you with me. Thanks for sharing this walk with us. It’s scary. It’s exciting. It’s full of victories and tears. And it is beautiful.