Today

It’s been a really long, hard day. Grayson was officially diagnosed with Mitochondrial Disease this morning. Although I am relieved and glad to finally have a diagnosis, there are a lot of emotions, fears, and sadness that I am processing. I’m not really ready to write about it in detail right now, and a glass of wine and hot bath are calling my name. But I wanted to leave you with a picture of our little miracle boy- this is how I found him in his crib the other day. Wow. I think he’s going to far exceed a lot of people’s expectations.

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14 thoughts on “Today

  1. *hugs*. sorry it came through that way. you are right though, grayson will definitely prove some doctors wrong in his life! he's so amazing! give him a hug from us!!

  2. That last line made me tear up! I think that is such an incredible way to feel about your little man. 🙂 And I agree- he is sure to surprise everyone!

  3. That is amazing!!!! Try to focus on the amazing progress he is making. Please don't let this difficult time ruin the amazing miracles that are happening! You are in my thoughts and prayers. If you need to talk I am here. hugs

  4. Oh sweetie. *hugs* That little boy is going to go so far though! Just look at him. I know I have nothing "right" to say, but this just keeps popping in my head. "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11. Praying you can find peace and hope.

  5. ((HUGS)) I've only begun to follow your journey over the past couple of weeks, but I just wanted to say that I am so sorry that life will be more difficult for you beautiful little boy. He deserves the best! Praying for you and your family… (and enjoy that glass/bottle of wine!).

  6. Hey there,Such a difficult day, I'm sure. How bittersweet, in a way, to FINALLY get a diagnosis but wish it wasn't the diagnosis you got. My heart is breaking for you. I do think that you are right though – that Grayson will defy a lot of limitations expected of him. He's a great kid – and more importantly – he is desperately loved by you and your husband. Love and devotion go a long way, in my opinion, in making the best of a difficult situation!Thinking of you!

  7. Wow. It truly is a miracle that the long awaited "sitting up" milestone came together at exactly the right time. Many more of those miracles are just around the corner.

  8. Your little guy WILL exceed all expectations Mito brings. Stay strong and keep fighting for him the way you always have. I'm always here if you need anything. Hugs!

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