I had a friend ask me if I had possibly lost my daughter because I haven’t been posting about this pregnancy as much as my first. I told her that I was just more aware of online privacy now and really felt like protecting my unborn little lady and that’s true. But there is also a bigger reason why I haven’t been posting about my journey with Allison: little Leilah Jubilee.
At 20 weeks, a friend of mine was told her daughter had anencephaly. Anencephaly is the absence of a major portion of the brain, skull and scalp. My friend and her husband chose to carry their daughter to term and pray for a miracle of healing. She also started a blog to chronicle her journey to Leilah. Following their journey almost made me feel selfish to post about my healthy baby girl. It just didn’t seem fair to revel in our blessings when a friend was going through such a difficult time. But I have to say, through those 20 weeks I have been so incredibly in awe of this strong and faithful woman and I feel incredibly blessed to know her. She showed strength, she allowed herself to be weak, and she never shied away from sharing what she truly felt. According to her, their hearts hurt for their baby girl but they knew that God had a hand in what was happening with them and they were choosing to put their faith in Him.
I’ve never made my faith a well known thing on the internet. Mostly because I don’t ever want to be seen as a “Bible Thumper.” My beliefs are mine and mine alone and the last thing I want to do is force them on someone. I don’t think forcing belief systems on someone is how God intended for it to work. I may not agree with everything that everyone else does in their lives, but I do believe that we were each given free will to choose what is best for ourselves. So I suppose this is my “coming out” post and I really hope what I’m about to say doesn’t make you uneasy because I feel like this little girl’s journey needs to be shared!
My friend, this amazing momma, completely changed my life. Up to this point, I have known that God could perform miracles. I have seen God do some pretty amazing things in my life. But I have also been disappointed by God and I have heard people insist God told them something would happen and then it never happened. When my uncle died, so many people told my aunt that God had put the story of Lazarus on their hearts. It wasn’t long before everyone insisted that God was going to raise my uncle from the dead at his funeral. I remember as a kid trying not to blink because I didn’t want to miss the moment that my uncle jumped out of his coffin. But he never did. His funeral procession drove to the graveyard and we placed him in the ground and I was so devastated. Hadn’t God told all of these people that He would raise my uncle from the dead? From that point, I really didn’t want to experience the same disappointment. I love my relationship with God, but I allowed this disappointment to change my faith. I had become a Doubting Thomas without even knowing it. As I prayed for Leilah in the weeks leading up to her delivery, I knew that God could heal her I just didn’t know if He would heal her. I continued to pray this way until I saw this post by my friend:
This is Aubrey.
I have been meaning to write since last Thursday, or at least from this weekend. I have so much to say and feel so overwhelmed with love and support that my heart is actually on the verge of shut down. The amount of encouragement and prayers from hundreds and HUNDREDS of people from all over the world has been remarkable. The Corporate prayer and fasting event last Thursday & Friday had an amazing turnout from friends, family, friends of friends in different states, strangers. People fasted that had never fasted, people prayed that don’t normally pray. One new Christian told Nick he fasted from coffee those two days. I’m pretty sure that counts for double points in heaven Anyways, the response for Leilah has been more than incredible- I can’t THANK YOU ENOUGH.
This journey has been so covered with His grace and we have the body of Christ to thank. Prayers avail much. A couple times people have used the illustration of Moses in Exodus 17, he was unable to keep his arms raised during the battle so Aaron and Hur gave him a rock to sit on and they held his arms until victory was reached. We knew at the beginning of this that we would need all the prayer and support we could get. We certainly didn’t expect this much though. I want to honor each and everyone for the courage it takes to pray, to believe, to hope…it hasn’t been for the faint of heart. Faith is spelled R I S K. You’ve risked your heart, your faith in this. SO please hear my heart, thank you!
At the beginning of this when we were first diagnosed in September I wasn’t praying for healing. I was praying to survive. To make it until February alive with a marriage and a faith still intact. Someone told me they were praying for her healing and I wept and said I can’t, if I do and she doesn’t live I wouldn’t survive the disappointment. You see unbelief was the safer choice because it takes no risk but it almost always gets what it expects. I expected Him to fail me. It wasn’t until Bobby Connor laid hands on my tummy that I had even the slightest bit of hope to think healing was a possibility. That God encounter instilled courage in my heart to hope. Now looking back at the last 5 months that has been the theme, Courage to Hope.
It has challenged my understanding of God. How big do I think He is? Do I really believe that nothing is impossible for Him? I know He created the heavens and the earth but do I think He could craft her skull? I sing songs about His greatness and splendor but deep in my heart the things I secretly hope for speak the loudest about who I really think He is and what He is capable of. By not hoping I was saying no God, I think anencephaly is bigger than you; I don’t think you can be trusted with my heart, my hope, the aftermath…
So it’s been a choice to hope, to risk it all, to be unsafe, to believe what the Bible says- that His arm is not too short and that He is able to do immeasurably more than all we ask or imagine.
I don’t want to go to heaven and see all that could have been if only I had asked or dared to hope for more. We have not because we ask not. So I ask. I ask this ridiculous question. God would you do a miracle in Leilah. As medically impossible as it seems- she’s missing most of her head for goodness sakes but I know that it’s not a hard thing for Him to do.
I don’t know what the answer will be. I saw so many healings and miracles this past weekend I’m still reeling – I can’t deny His power, and I choose to trust His heart.
Friend, family, strangers that have come along on this journey… My heart is that in the very least praying for Leilah will start a ripple of hope in your heart and that it would end in a tidal wave of possibilities. Maybe you have a broken relationship, sickness or financial difficulties- whatever situation you’re struggling with that seems impossible- I pray that you are filled with divine courage to hope. To believe that when we partner with the Almighty anything is possible. That we honor Him with our prayers and dreams that are beyond us. That we walk courageously in all that was attained at the cross. That we refuse to settle on what we understand and have experienced but believe and hope in Him with reckless abandon.
Since this weekend I feel a fire burning in my heart. An excitement to see Him show up regardless of the outcome. He will not fail whether she lives or dies. When God is on our side it’s a win/win. Though loss will hurt I know the Heart of my Father and it is Good, He is always worthy of my hope.
“Bold prayers honour God, and God honours bold prayers. God isn’t offended by your biggest dreams or boldest prayers. He is offended by anything less. If you’re prayers aren’t impossible to you, they are insulting to God. Why? Because they don’t require divine intervention” Mark Batteson, The Circle Maker
“Never lose consciousness of the God that invades the impossible.” Bill Johnson
My world was completely rocked. Here is this woman going through such a difficult thing, a thing that would make me so angry with God, and not only was she asking the impossible she was remaining faithful even if the impossible didn’t happen. How could I, a simple observer of this situation, not kick my faith in the ass and expect results. I spent so much time praying and crying out to God for this little girl, for her mom, her dad, and her big brother. And I wasn’t the only one!
On the day my friend was scheduled to be induced, myself and a few women in my office waited with bated breath. When I prayed “heal Leilah, Lord” all I could hear back was “Watch! Watch what the Lord can do.” I think the worst thing so many Christians do at this point is they interpret these sort of things to mean whatever they want it to mean. I didn’t know if God had healed this little girl and I certainly wasn’t going to proclaim that God had told me she was. He had told me to watch and that was what I was going to do. I refreshed her Facebook every time I got a chance. Her champion mother was in labor for so long, endured so much pain and Leilah finally came into the world February 11th. She was 6lb 13oz 19.5in and yes, she still had anencephaly. My heart did not feel disappointment like I expected because I was so busy watching for what God had done here. Hours passed and this little girl was still with us. Hundreds have flocked to the Facebook page to watch the lifespan of little Leilah and every single one has been touched by everything going on around her. I have felt peace, anguish, and everything in between with every update we receive. I cannot remember the last time I cried myself to sleep this often. She has now lived longer than anyone expected and I continue to pray for God to put her missing pieces together, to complete this little miracle.
I remember, when I was holding my newborn son, someone told me that children are angels that God just loans to us. I remember feeling so selfish and hating thinking that he had only been loaned to me. After a week, I couldn’t get enough of him. I couldn’t hold him tightly enough, I couldn’t inhale his scent enough, and I couldn’t soak in his presence enough. I wanted more than a lifetime with him; I wanted a million lifetimes with him. But today, I now see how this was true. Children truly are angels that are loaned to us but they belong to God in the end. Somehow, this now brings me peace because I know that once they leave here, they are in His hands.
After over 60 hours, Leilah is still with us but she is now medically failing and her family has said goodbye so many times that I’m sure it’s exhausting. If God chooses not to heal her and instead takes little Leilah home I already know that a miracle has already happened. Actually, not just a single miracle but many have come into being because of this little girl and her family’s faith. This family had a chance to not get any time with Leilah and yet they’ve had days with her! That in itself is a huge miracle. On top of that, every mom I know that has watched this journey has told me they have held their babies tighter and have enjoyed every moment with them, including the difficult and mundane ones. We have become grateful for things that may have been missed by us before. Many have had their faith healed and changed through this, myself included. 1,672 (and climbing) people are now following the Facebook page for updates on Leilah and most of them have prayed more fervently than ever before, some even for the first time.
I will be sad if Leilah passes because God chose not to heal her, I will mourn for her and my friend, but I won’t be disappointed in God. In just 60 hours, God has used this little angel to do so much in so many believers and non-believers alike. Because of her, my eyes have been opened to realize how small and how fragile I had allowed my faith to become. Her grip on life has completely changed me and I hope she changes you as well. If getting to know her and her family gets you to hug your kids a little tighter, then she truly is a miracle. If her struggle gets you to count your blessings, then she truly is a miracle. If knowing her struggle leads you to giving your children a little more grace, then she truly is a miracle. No matter your faith, no matter your beliefs, I dare you to not be touched by little Leilah and her journey to this world. Mommas, hug your babies. Be grateful for the small blessings you have been given and open your eyes to everything you have in your life. I know that the life of every mother can be difficult and there may be moments that you just want to give up or scream or tear your hair out. When you feel that way, try to think of little Leilah and her family. Think of how this amazing little girl that is missing half of her head, that she has beaten so many odds and that her family has journeyed with her with grace and peace. Hold your little angels tight, even when they’re not acting so angelic and remember to be grateful that you have the opportunity to whisper in their ears how much you love them. Life is short, some shorter than others and we should make sure it doesn’t just pass us by.