I hope you all are doing well. Thank you for your prayers, love and support – Emily and I feel them. So on January 25, Emily went in for a MRI and an ultrasound and we received hard news once again. The doctors told us that Blakely has Alobar Holoprosencephaly, which is a rare disease that results in severe brain malformations. The basic idea is that Blakely’s brain is one fused hemisphere rather than two separate hemispheres. She has a cleft lip and they think she has a cleft palate. Also the doctors think that she does not have a nose bone, but they checked her heart during the appointment and said that she had a healthy heart. Everything about Blakely is completely healthy except for the brain and the face. Most babies that have Alobar Holoprosencephaly pass away before they are born or pass away soon after birth. The doctors told us that it is very likely that Blakely will pass away before she is born or soon after she is born. This has been very hard news to receive.
Both Emily and I have been really saddened by the bleak prognosis, but at the same time we have felt deeply blessed and thankful. We have felt so blessed by God to have Blakely in our lives. She has completely changed us and she has shown us the beauty of human life and the love of God and the power of God. We are so glad to see the funny ultrasounds where she rolls and flips and waves (one time she gave us a thumbs up). We are so glad to experience her little kicks and random cravings for Pizza Hut, Taco Bell and chocolate cake (Emily tells me it is what Blakely wants). We have loved praying for her and telling her over and over again that we love her and that God loves her. We have loved getting gifts from her from friends and family and we have loved dreaming of her future room and growing up. Blakely has transformed Emily and I and has shown us the power of human life and the power of love. Emily and I love Blakely so much and we know that God loves her so much and we love God so much and we know that he loves us.
We really think that this change of heart has taken place in us due to your prayers, love and support. You guys have given us the space to be vulnerable, honest and raw which has allowed room for Jesus to speak to us through your listening ears and faithful presence. As we were more and more honest with you guys and with the people in our community we slowly felt more and more loved by God. Rather than seeing God as our opponent and enemy we began to see that God was grieving with us. We saw God in every one of your faces, emails, letters, texts and phone calls as you all felt the pain with us. We saw God through his people and through his church and we have been convinced that Emily, Blakely and I are incredibly loved and that what is happening is not supposed to happen.
God has shared his heart with us that what is occurring in our lives is not okay and not the way it is supposed to be. He has shared with us that he is a God that brings life and healing. He has shown us that death is an unnatural presence on earth and in human life. He has shown us that sin is an invader and a killer and he has shown us that he is a savior and a lover. I celebrate the truth that death and sin do not get the final word over my daughter’s life. I celebrate the truth that her Father in Heaven and God is a redeemer that is whole-heartedly fighting for her life and has done so in the giving of his own son (Jesus).
Over and over again in the last few days I have been consistently reminded in my heart of the cross – I know this sounds so cliché but it is so necessary and so needed in my life right now. For me in this moment the cross is very real and very close to my heart. I hear God telling me that he knows how it feels for death to invade and to steal life. I hear God telling me that he knows what it is like to walk through death and to watch his child die. Right now the cross is the bridge between God’s heart and my heart. As each second that ticks by and day that ends I am forced to draw near to the impending moment of Blakely’s birth in which I know that death will be ready to do its worst but it is funny how I draw closer to this moment the more that I feel that God is drawing closer to me and that is only because of the work of Jesus on the cross. I feel like God is relating to me and is whispering in my ear that he is going to make all of this right.
So as I write I am choosing to set my eyes to the cross (even though I want to lurk in the dark and wallow by myself and ask the question, “Why me?”). I am choosing to not receive the news that my little girl is going to die and I choose to receive the news that my little girl is going to live because someone else died. I am a child (son) of God and I am not friends with death. I am choosing to not make peace with death and to call it what it is… an invader, a thief, an unnatural piece of life, an image breaker, an enemy and a defeated foe. I refuse to believe that death gets the final say over my life, Emily’s life, Blakely’s life and even your life – the final word belongs to God and this gives me confidence for Blakely belongs to him. Therefore, I am convinced that she will be healed and that one day I will hear her say to me, “daddy” and that one day I will take her to the park and push her on a swing. This confidence that has been given to me is a mystery to me as it completely defies what seems reasonable to me. This confidence does not come from within me but has come outside of me through the gospel (Jesus’ life, death and resurrection). I can’t explain this to anyone but I am testifying that the gospel/Jesus feels very real to me right now. I realize I sound like a fool but I am just deciding that I am going all in on Jesus and so be it – he is all I got, he is all I ever had.
Now I realize I might be sounding like a mad man to you guys and that it might come across that I am speaking a bunch of jibberish or preaching to the choir (I need to preach this to myself and I need you to preach it to me) but please just take this one point away and it is that Blakely’s life has pressed the gospel deeper into my heart than it has ever been before. I am so thankful for her because she has changed me. Both Emily and I said to each other the other day that for Blakely we would do this again and again (crazy!). Ask us two months ago and we would have told you that what is happeing to Blakely is a sign that God is cursing us – but today she is the sweetest and greatest gift we have ever received – she is our bumble bee (my nickname for her), our little blessing.
So let me testify that the gospel has made impact in my family and it is getting messy in our mess. Feel free to join us in this mess and to taste the sweetness of Jesus with Emily, Blakely and I. This is not how it was supposed to be, but God is making it right and he has convinced me of this. So let it be done and watch and see.
(1) God’s glory to be shouted in this messy/sad story
(2) Blakely’s healing
(3) Emily’s health
(4) Emily’s safety in the delivery
(5) That our faith will grow
I love you guys so much – you are all key reasons that the mystery of the gospel has been placed in my heart.
Michael, Emily and Blakely