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.