11-26-17

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.

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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.”

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IMG_3769I 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.

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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

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22 thoughts on “11-26-17

  1. Your words and your lives have touched the deepest parts of my heart. Through knowing all three of you and reading the poignant descriptions of your journey, I have come to understand more fully how very much God values us, His children, in spite of our brokenness. I see Blakely as supremely precious, which helps me grasp that God sees us the same way. I have learned so much about His love and commitment to us, which depends not one bit on how undeserving we feel. Thank you so very much for opening up your hearts and lives so we can, in some small way, share this journey with you. I love all three of you and will continue to pray that God will be abundantly present with you every step of the way.

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  2. My heart breaks..I pray Jesus holds her and all the ones that love her ..which are so many..as she lives so does hope..so does all the cries to Jesus for healing and mercy…She has changed the world around her.I know that Jesus holds her with so much pride..stay strong Dad and Mom…your little girl is changing and softening the hearts that surround her making each one with God ..Victory is being won..love you all God Bless and carry you.

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  3. Praying for y’all. The Lord actually brought y’all to mind last week. She is beautiful and adorable. Love her HAIR and sweet smile. Praying for wisdom for whatever is to come. He is with you.

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  4. Emily, Mikey and Blakely, We love you and are in deep prayer as you go through this trying time. Our hearts break every time Blakely is hospitalized, knowing how bad her lungs and seizures are on her little body. Thanks for the update and looking forward to GOOD NEWS. Mema Mot

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  5. I sweet Jesus! I have a lot respect to the both of you young parents I had pleasure to work with Emily and she is a sweetheart, thanks for the update I been follow your story for a while now and I pray with all my faith for you and your family !

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  6. Prayers for you and mom and for the beautiful princess, I know that when you have a special person in your life, like your beautiful daughter all you inner soul and life change. Blakely is in God’s hands. Whatever is the outcome , like you said is for God to be glorify.

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  7. Such beautiful words. My heart is broken for you and your family. She is beautiful! I’m praying for you and your family. Thank you for sharing your journey with us.

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  8. As you describe your enormous love for your daughter, Mikey, it truly exemplifies God’s love for each of us, how HE holds us each day, googles over HIS creation, and simply adores us for who we are. Thanks for sharing your heart with us and for being a rock star dad to Blakely. Em, I love you! We continue to pray nightly for your family.

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  9. Praying for all of you. Praising God for Blakely’s life and what she has taught everyone who hears of her. I have ten grandchildren in Tennessee who pray for her daily and ask for updates. I don’t know what the future holds, but your family is in the hearts and prayers of many.

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  10. She is so lucky to have such a strong loving Daddy. Your little girl is teaching you how deep your love can go and showing you the depths of your soul. You are a good man. I ask myself all the time could I handle true loss, what would I do? Then I read this from someone like you. I mean I admire your ability to see and to grove and love while she is here. There is no way to be prepared. I think that’s why God makes us watch the suffering, so we understand the release is the comfort they need. She is so beautiful you are right with her wild blue eyes. That sweet baby girl. I wish I could hold her. I wish I could help. My heart breaks for you and at the same time I know God put her with the right people. You keep loving her, just keep letting her trust you. She will never leave you and you understand that. I am sorry she will not go on to see the things you anticipated before her birth but think of all the pain she will avoid. While she suffers now it’s all she knows, and the love that surrounds her is what she wakes to feel. It is beautiful she will never feel jealousy, envy, defeat, self ridicule. These things that break is weak people everyday, Blakley doesn’t even have to experience because her soul is past that. She comes to us and suffers quickly so we learn intensely. She is an angle here to teach. Thank you Blakley. Everytime I see my little girl I am greatful. Thank you for reminding me of the patience and love it takes to be like your Daddy. To love my girl with all my heart and soul to take that trust and value it. I am so sorry. If I could take her suffering I would. Your family is in my prayers, hopes and dreams. Thank you for sharing your journey.

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  11. I have been following your story for a while and I pray the Lord for Blakely and you everyday. She has been blessed as well as you for having each other. I came across your story on youtube and fell in love with Blakely from the beginning, her smile makes my day. I suffer from anxiety and depression and see what a fighter Blakely is, helps get through the day. God Bless.

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    1. Thank you for sharing your story with us. Thank you for sharing how Blakely has impacted your life. She impacts us everyday. We struggle with depression and anxiety as well and have been incredibly encouraged by Blakely. We are blessed 🙂

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  12. Hello,

    I read about sweet Blakley on LifeSite news, a Pro-Life news site. It is wonderful that you and your wife chose life and I can’t even imagine all that you both go through, as well as Blakely. Just like you’re a good dad, who hates to see her in pain, I know God hates to see her in pain and wants to see her well, healthy, and strong. And just like you I believe God still does miracles!

    My family and I have ourselves witnessed many miraculous things and healings. Don’t give up. I know without a shadow of a doubt that God wants the same for you and your family.

    I included our ministry website, where you can see some testimonies on the Blog, but I don’t want anything from you. I just want to encourage you and your wife that miracles still happen. God bless you and your entire family!

    Liked by 1 person

  13. I am lost for words. When I was pregnant with my daughter Lily, I was so scared of having to take decisions like this… We also chose life for Lily despite the prenatal diagnosis ( severe Hydrops and Cystic Hygroma in her case). Sadly, she was stillborn at 24w. 3d. in 2012. Your daughter is gorgeous ( I love her eyes, her amazing smile and of course her rolls!) and she’s got the best parents ever! I will pray for you and for the team that cares for Blakely so she can be the most comfortable possible at all times. Blessings to you…

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