Blakely is not doing well. She is intubated and is being fully supported by a ventilator. She has a central line (IV access into from the jugular vein in her neck) and an arterial line (access into her artery). She has pneumonia and an infection. She needs help. But she is still here with us. She is still breathing, she still breaks a smile here and there. She is still Blakely in fullness with all the good and the bad. We love her and we are proud. She has been brave and she has been faithful to live even when it is hard.
She has revealed to us that Jesus loves her and that the most unlikely of children are absolutely lovable. Emily and I had no idea that their were thousands of children made in God’s image with Holoprosencephaly.
These children are the forgotten, the neglected, the murdered and the rejected. These are the children that are aborted. These are the children that are supposedly hopeless. These are the children that don’t have purpose and meaning. These are the children that no one wants (Emily and I have thought all these things but we were wrong). But, these are the children who Jesus loves.
They are the children that Jesus pursues. They are the children who belong in the Kingdom of God. They are the children that are known by name. They are children who live in the crux of the gospel – their whole lives hinge in the in-between of the cross and the resurrection (but don’t all children live in this place… maybe this is why Jesus said that we must be like children to enter the Kingdom). This is where Blakely lives and it is a place where there is an out-pouring of continuous love.
Living with Blakely has been like living under an explosion of holiness and sacredness. It has been humbling, scary and wild and all that we can do is surrender ourselves over to this gospel moment in face-on-the-floor worship. It has been unbearable, intense, shaking and yet it has been beautiful, sweet and fulfilling. Living with Blakely has been a collision of death and life – suffering and hope – a true gospel encounter.
In this moment, we have been asking ourselves, “How can we live without her?” Blakely, has given us everything that we want. She has impacted us and she has completely changed our lives. We didn’t know that love could look even more beautiful. We didn’t know that love could be found in pain and in suffering. We didn’t know that love could be found in letting go. Blakely has shown us love in the darkest of places. She is leading us into deep waters where we are scared to go but she fearlessly pushes forward. She has a high-calling and she is fulfilling it with every breath. I have never seen someone live so wholly in line with their calling. What a joy to be her daddy! What a joy to sit and marvel at God’s design! What a joy to feel the weight of life and death all at once in a baby! What a joy to see the face of Jesus in a child who has no upper lip and no nose! What a joy it has been to behold Blakely Elizabeth – our bumblebee – our little pumpkin.
We do not want to let go. We do not want to say, “goodbye”. We are going to miss her. We will miss her long hair and we will miss her big, beautiful ocean eyes. We will miss her perfect circle face and her heart shaped nose. We will miss her laugh and her smile. We will miss her slow blinks and funny noises. We will miss all the hard things as well. It is the whole Blakely package that we will miss with all the good and the bad. We want all of her and if she has to go we will miss all of her – every single piece.
Blakely must fulfill her calling. She must do what she came to do. She must not stop and I have to make sure I don’t get in her way. She is on a mission to accomplish a task that no one has been able to accomplish in my life – a task that only a child can do. She is doing a work that is proclaiming the gospel into my heart like a beating drum (all children push the gospel further in their parent’s hearts). She has not stopped and I pray she will not stop. As much as it hurts to see her suffer I know that this is the way it has to happen. She has to do this – it is her calling. It is her mission to show me that Jesus loves me (I have doubted Jesus’ love for me my whole life) – to show me that I am a “lovable” man (I hope she has shown you all this as well). Oh how I cry to see that this is what she has done for me and in me. She has shown me how deep the Father’s love is not only for her but for me. I cry and I cry because it is overwhelming to behold God’s love. I cry because it is perplexingly beautiful to look in a crib with a little baby tied down in wires and tubes and to see God’s love. I cry because it is like looking upon Jesus on the cross while fully knowing that this is what it costs to make all things new – this is what it costs to bring hope. She is my daughter and is fulfilling her mission and bringing hope in the most hopeless of circumstances – it is beautiful.
We do not know what is going to happen with Blakely. We do not know if her body is going to fail. We do not know what the next few days are going to bring. But we do know that it will be holy. Everyday with Blakely has felt holy and sacred. We expect that tomorrow will be holy and sacred as well. Her lungs got stronger today and it seems that the medicine is pushing back her pneumonia and infection. We want more of Blakely but we know that God has to do what he has to do. It is under his mercy and grace that we surrender Blakely to his purposes and to his will.
We love you all,
Michael, Emily and Blakely