Today, I sat on a squeaky rocking chair in a small 8 foot by 8 foot room with gray tile floors and two windows. It was quiet and calm, as the sunlight sprinkled through the windows and danced on the tile, as the trees outside blew in the wind. I rhythmically rocked back and forth with Blakely in my arms and it was like we were dancing with the light. But the only music playing was the sweet sound of Blakely’s snoring and the hum of the AC spreading a cold chill into the room. I praise God for this moment, because it was good and fulfilling, like drinking chilled lemonade on a hot day.

Lately, life has been busy with the big move to Florida and getting our home just the way we like it. Also life has been hard as we navigate the difficulties of being first time parents and saying goodbye to dear friends in St. Louis. But at the same time, life has been exciting with the dream of what living in Florida is going to be like and the expectation of a new season of life. It is the excitement that one feels for the start of spring, and the heated air and the blossoming flowers after a cold and dark winter. As all these feelings mix together I don’t really know how to process everything. I have found myself making up answers when people ask me, “How are you doing?” I just want to say, “I don’t know,” but I never feel like this is a good enough answer, but to be honest it is true. I really don’t know how I am feeling, because there are so many thoughts and things to do that are bouncing around in my head. But I do know one thing, and it isn’t really a feeling, it is more like a state of being – I am full.

I have been having moments like the one I described in the opening paragraph over and over again the last few weeks. Moments where life almost moves in slow motion and you never want it to end because it feels so good, but you almost aren’t able to fully enjoy the moment, because you are so worried about it ending (lol). It was so beautiful to hold Blakely in her very own bedroom this afternoon. I remember holding her in my arms and staring at the block letters that sat at the base of the window. The block letters spelled out Blakely’s name, and my mind flashed back to the NICU where her name was spelled out in paper letters on her NICU window. I couldn’t believe that I was holding my daughter in our house, in Florida. A house that I bought expecting to not bring her home to. A house that I bought thinking that the 2 bedrooms will be for my “other” children and yet, there I was holding Blakely in her own room – there I was hearing God say, “I am God, I am faithful, my ways are mysterious but always good.”


I don’t know what God has for my little family. The doctors are saying that we should expect Blakely to only live for a few months and to be ready for her to pass away. But at the same time Blakely is doing really well, and is growing and talking and smiling. I don’t understand this cold concept of dying – it feels unnatural and fake. I look at Blakely and I don’t see death, but I see life. I don’t want to look at her and think, “Oh look this is a dying baby.” I want to look at her and think, “Oh look this is my beautiful baby who is alive and well.” I don’t want to prepare for her to die. I don’t want to prepare for her funeral and I don’t want to think about packing up those 7 block letters sitting at the base of her bedroom window. If death is going to come to my little girl then I want it to knock me to the ground. I want it to shock me and to shake me to my core. I want it to hurt and I want it to be the worst pain I have ever felt. I want to feel the full force of this scary thing called, “death”. I don’t want to live preparing for death even though I know it is coming. I know it is coming not only for Blakely but also for me. I don’t want to live a life where I am trying to make death into something that is not scary and into something that is “normal” and into something that is pleasant. Death sucks.

So let it come what must come but I am going to live in the fullness of this moment. Blakely is alive and she is my daughter and I can touch her warm skin and hold her tight. I pray that I never have to see her die, but if this is what is to come then let it hit me as hard as it can, because I don’t want to live in the shadow of death but rather in the fullness of life (to live fully involves feeling the pain of actually living).

Pray for Blakely:
(1) Pray for Blakely’s new doctors in Florida and that we feel comfortable with them.
(2) Pray for Blakely’s seizures (she has about 20 seizures a day at this point and we are hoping to get some different medication that may stop her seizures).
(3) Pray for Blakely’s parents – we are overwhelmed with the task of being first time parents and also being parents to a child with special needs – we are doing our best but often feel inadequate.


8 thoughts on “6-15-17

  1. Michael, Emily and Blakely,
    We have not met you but feel we have gotten to know you through our dear children, Skylar, Dori and Elli Neal, who have spoken so kindly of your friendship.
    My husband and I have read, listened to, shared, cried for and prayed over your family during this journey but we have never experienced as you have. We are so thankful you have allowed us and so many others to walk on this journey with you, the story is not over yet!
    We have been moved to tears and to prayers over the words you have shared.
    Michael, I would encourage you, at the right time and in the right season, to publish your family’s journey. Your words are so tender and compelling and from a father’s heart and your words flow so smoothly. Perhaps, there are many more families this could minister to, sadly.
    We are also thankful for the open door in Florida for what He has prepared you to do and for the blessing of being closer to family that can love on y’all and assist.
    The faith the Father has grown in you is inspiring and moving and challenging. May He continue to minister to each of you as only He can! Our Father is faithful and He knows.
    Most Sincerely,
    Penny and Jeff Adams

    Liked by 1 person

  2. Congratulations on the move back to Florida. How amazing it has been for your sweet family. Blakey as been blessed with 2 amazing parents. You both are doin a phenomenal job caring for her. I continue to pray for you all daily. Love Jen NICU RN

    Liked by 1 person

  3. You don’t know me, but I live in the Orlando area. Our son, while not in poor health, has had some special needs along the way. I’d be glad to help you navigate doctors and therapists and whatever else overlaps between our stories! Please don’t hesitate to reach out to me. The Church is home to us both. You are my sister.

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  4. Your words are so beautiful. I can picture you as you describe it. I can almost feel your mixing thoughts and worries, but deep in my heart I know The Lord has the final word; Before little Blakely was conceived for her parents God has conceived her in His mind, He already chose the time for Her to be born and to die. He has a purpose with her, and as soon as it is done, it will be the time to go back to The Lord’s arms. So, do not worry about how, when and so, and so; just enjoy every second with her, love her as a precious blessing God has given to you both , this is the most beautiful treasure you have never had , where you have learnt that all is from God for His Glory and everything comes back to Him when He decides so. You are always in my prayers and in my heart. I am so glad you are here in Orlando, and if you need someone or something, in my possibilities, I will be more than happy to be there. Trust me! ❤️❤️

    Liked by 1 person

  5. Such a powerful and honestly written blog! We are so blessed to follow y’all’s journey with Blakely and see her miraculous life story take shape! She is such a sweet little gift from God! So honored to have a little cousin who is such a conquering little overcomer! Know that we are praying for y’all as you transition to this new season of parenting in a new home. Hug Blakely for us!

    Brandon and Sarah Battle & Becca and Joshua
    Some of Blakely’s Texan Cousins

    Liked by 1 person

  6. This may be the mostly beautiful thing I have ever read! Sending you lots of love from St Louis! All her honorary aunties miss you all and are cheering you on as the wonderful first time mommy and daddy that you are!! Hugs- Amy

    Liked by 1 person

  7. I hope to meet your beautiful Blakeley one day and to see you again. She is very brave- and also very lucky to have you both as her parents. And you are brave as well. May you all have many years together. Only God can write the script of our lives and he’s writing hers now.

    Liked by 1 person

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