Blakely has been in-and-out of the hospital the past few months. At one point, she had a season where she was seizure-free – that was a beautiful time. She grew up so much during that season. She lifted her head, she sat up, she reached for objects and she tracked objects with her eyes and she fell in love with warm baths and soft head rubs. She has also had seasons where she is attacked by seizures over and over again – those seasons are painful. As of late, Blakely’s seizures have been somewhat controlled (everyday she will have an episode here and there) but she has been struggling to breathe. Blakely has attracted several viruses over the past few months that have sent us to the hospital each time. Right now, Blakely requires oxygen support for three quarters of the day. We are currently in the hospital with Blakely because she has a virus. She seems to be recovering very slowly and will hopefully go home soon, but we are unsure of how much longer her lungs will hold up.
Blakely’s life has not been easy. She is really hurt and is hurting a lot. The past few days Blakely has been crying as she lays on the hospital bed. She wears an awkward mask that makes her look like an astronaut and it pumps air into her lungs – she straight up hates it. Every time she wakes up, I want her to go back to sleep so that she doesn’t feel the pain of breathing and the pain of seizures.
At the same time, she is beautiful. With wild blue eyes she will look at me and I can almost hear her saying, “Daddy look at me, look at me!” Then I get to whisper in her ear, “Blakely I see you, Blakely you are beautiful, Blakely you are my little girl, Blakely I love you, I am with you.”
I love that I get to be Blakely’s Daddy. One of my favorite things that I get to do at the hospital is check-in. When you check-in at the hospital to get back to Blakely’s room you have to pick up a phone and tell the operator who you are. I get to tell the operator that I am Blakely’s Dad. Every time I say it, I just want to drop the phone, slide on some shades and kick down the double doors. I feel like the “baddest” Dad on the block every time because I have the dopest (<— means really cool) daughter. All of this is to say – that I am honored to be Blakely’s Dad but at the same time I hate how hard she has to live.
Right now, I am looking at her in a dark hospital room through the bars of her crib. Her chest lifts and drops to the beat of her oxygen machine and her mask rhythmically presses her face to pump air to her lungs. A soft fleece blanket snuggles her while many wires wrap around her limbs. She is asleep and she is at peace. I am scared that when she wakes up she will writhe with pain. I am scared that when she wakes up she will hurt more and more. But most of all I am scared that the doctors will walk in the room and say, “Her lungs are failing, what do you want us to do?”
I am scared that I won’t be able to love her well in that moment. I am not sure if I am up to the task to be Blakely’s Dad in that moment – I don’t think that I have what it takes to answer that question. I keep putting myself in that situation and I keep asking myself what are you going to say? Am I going to push for a tracheotomy or am I going to say let her be? She is too beautiful, too precious, too sweet, too delightful, too beloved for me to be able to answer. But what breaks me apart is that I know that whatever I choose to say (whatever Emily and I choose), my little sweet Blakely trusts me. I know she trusts me and I know she loves me. I just want to make her proud like she has made me proud. I just want to give her the best, give her the most and give her the world but I am being called to give her away. I am being called to give her up and to let her go and I am scared. How can I live without her?
Lately, my prayer has been through welling eyes, “God do what you must, do what you have to do, do what is necessary for your glory – for your Kingdom”. I know that this may mean God will take Blakely from me. I know that this may mean God will let Blakely live and suffer. I know that this may mean God will restore Blakely to full health. But whatever may happen – let it be done for God’s purposes to show who He is.
Blakely has shown me that God loves me like his own child. I see His fatherly love in her big eyes, her rosy smiles and her strong punches. I see His fatherly love in her wicked seizures, her broken cries and her short breaths. In her life I see the hope in the resurrection of the body and in her suffering I see the love of God that Jesus showed on the cross. I know that her pain is not meaningless because Jesus gave it meaning through his suffering on the cross.
Blakely’s suffering has forced me to cry out to God and call upon his promise of a new creation with new bodies that are whole and complete. This promise is only accomplished through the abuse, hurt and suffering of Jesus on the cross and in the revitalization of his body after death. Therefore, in Blakely’s life and in Blakely’s death God is close – intimately close.
He is the Daddy who will lovingly carry my daughter through this moment. He is the Daddy who will lovingly bring her into glory and save her life for the Kingdom. He is the Daddy that is not afraid and who knows what it is like to hurt, break and suffer. He is the Daddy who loves his children in fullness (because he gave up his Son in fullness to love us in fullness) and Blakely has shown me how deep a Father can love (these sentences have not been easy to write – they contain tears).
I often find myself singing this song to Blakely before she goes to bed:
How deep the Father’s love for us
How vast beyond all measure
That He should give His only Son
To make a wretch His treasure
How great the pain of searing loss
The Father turns His face away
As wounds which mar the Chosen One
Bring many sons to glory
Behold the man upon a cross
My sin upon His shoulders
Ashamed, I hear my mocking voice
Call out among the scoffers
It was my sin that held Him there
Until it was accomplished
His dying breath has brought me life
I know that it is finished
I will not boast in anything
No gifts, no power, no wisdom
But I will boast in Jesus Christ
His death and resurrection
Why should I gain from His reward?
I cannot give an answer
But this I know with all my heart
His wounds have paid my ransom