1p36 Deletion Syndrome, Coping, Faith

Everyday Miracles

For my first post, I’d like to share a brief snapshot from the past year, which explains the name of the blog. Although I’m starting on a high note, and my hope is to keep the overall content ocropped-unknown-7.jpegf the blog positive, please know that I will not white wash anything. Part of my goal in sharing these experiences is to encourage other families that they are not alone. And without honesty,  genuine connections can’t be made. Cheers to being real and looking for the best in every situation!

On July 25, 2016, Maddie was diagnosed with a genetic condition called 1p36, which is a type of chromosome deletion. It’s a fairly rare condition, and was discovered through genetic testing that we underwent after we found that she is Epileptic. She was eight months old, and up to that point we’d had no reason to think that she might have  developmental issues. But with this diagnosis came a long list of predictions for her future. Everything from eyesight and hearing loss, to physical and mental limitations. With one phone call our lives were turned upside down. I felt like I didn’t know my own baby. To say that we were devastated would be an understatement.

As we tried to see through the fog, my husband, Nate, reached out to our pastor and asked if the elders would pray over Maddie. The next Sunday we met in a small back room in the nursery with five or six men who were leaders in the church. We tearfully explained the situation as best we could with the limited information we’d read online.  I’m sure that we didn’t make much sense, but they understood well enough to comfort and pray with us. I remember so clearly the encouragement that one of the pastors spoke: Every time we [as a church] ask God for something, he comes back with more than we asked or expected. He gave an example of a woman who needed some financial assistance, and after praying, she had all of her needs met- and then some! Through my haze I believed that God was certainly capable of all things. But it seemed that God would need to work a miracle to make things okay in our situation. Without a miracle, how could something that was genetically caused be fixed???

Over the months I continued to pray. But my prayers sometimes ended half way through the sentence. I didn’t know how to pray. I didn’t know what to pray. I was heartbroken that my joyous little girl whom I loved so much might not reach the potential that I’d dreamt for her. It was in those times that I know other people were standing in the gap and praying for us. But then it dawned on me – even if I think it would take a miracle to heal Maddie, why wouldn’t I pray for a miracle? It’s our job, as parents, to pray continually for our children. So why not use my prayers to ask for complete healing of our Maddie? And so that’s what I began doing- everyday I pray for a miracle. And I wait and expect.

And then another thought occurred to me: Maybe a miracle has already been performed, but I’m too busy concentrating on what I perceive might be ‘wrong’ with Maddie to see it.

After all, if we go down the list of typical characteristics of individuals with 1p36, many do not apply to Maddie. As far as we can tell, her eye sight and hearing are great. She doesn’t have many of the facial features characteristic of the condition. Her seizures are well controlled on medication. And according to her cardiologist, her heart condition has been fully corrected with a procedure that she had in August. Sure, there are definitely other issues that we’re going through. But to realize how well she is doing is to realize how blessed we are. And how God has and is working miracles in our little Mads everyday.

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2 thoughts on “Everyday Miracles”

  1. Your story can and will make a difference to other parents struggling with any issue related to their children. I applaud you for having the courage to share your family with all of us readers.

    Prayers!!

    Like

  2. Beautiful, Cristin! John and I are so thankful for the three of you. God is going to give you and Maddie exactly what is needed. 😘

    Like

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