The end of our path….After what seemed like the longest 5 months of my life leading up to Leilah’s birth- I was so surprised it was over so quickly. 3 1/2 days of non-stop cuddling, kissing her perfect lips, her hands wrapped so tightly around my fingers that they turned white. She was so beautiful, so strong. 3 1/2 days of love and pain, joy and sorrow like I had never expierenced. Going into this uncharted territory I didn’t know what to expect. I was surprised by the peace of it but yet side swiped by how hard too. It was much harder than I imagined because I didn’t know I would love her so much.
The end of our path. I write it but I have a hard time believing it. There are moments throughout my day where I feel like I can’t breathe, my heart aches and in disbelief I think ‘did I really walk through that? Is this journey really done?’ Today is 3 weeks since Leilah was born. Everyday that passes I find difficult. It’s one more day away from her, away from the smell of her skin, the sound of her breathing, her perfect lips that always puckered when I kissed them…I keep looking at pictures, listening to the recording of her heartbeat, anything I can do to keep it all fresh in my heart, to keep those memories alive. I know they will fade. I resent the days going by but I shouldn’t. Yes they feel like they are taking me away from her but really they are bringing me closer to her. Closer to the day that I walk into heaven and hear her squeal MOMMY! and watch as she runs into my arms, whole & healed. I am homesick for that day.
I’m still trying to process all that has happened so forgive my long and chopping writing. Also I’m still discovering things God did in the midst of the craziness. As much as my prayers were for a miracle – meaning that her skull would be formed perfectly and she would live a long happy life – we had so many other miracles surrounding us during our time with her. For starters her defect was pretty extreme, worse than the pictures I’ve accidentally seen, worse than I understood from the ultrasound, but she was born ALIVE and beautiful- so beautiful. About seventy-five percent of anencephalic babies are stillborn, those that are born alive may live minutes or hours, we had 3 1/2 days. She felt no pain, she was so peaceful and cuddly. We were surrounded by nurses, doctors and a beautiful midwife that were so supportive and loving. The children’s hospice home was incredible, it fulfilled all our needs at such a delicate time. And it was surprisingly completely covered by our insurance. I could go on but basically it was like every ‘i’ was dotted and every ‘t’ was crossed in this grand finale. In a situation where all I could do was surrender and just live in the moment, God proved that He was very much in charge and very much a good God. He was there every minute, every step. There was a blanket of peace surrounding us the entire time.
The blanket of peace…when we were at Bethel we asked a rather well known man to pray for Leilah, when he prayed it wasn’t this crazy healing prayer like I expected, he simply asked that the Shalom of heaven to be over her, for His complete peace to be over us.
When it came time to push Nick and I looked at each other nervously, this is it- she’s either healed or not healed. Life or death have been in the balance for months as we prayed and in the next few seconds we would find our answer. We felt a mix of emotions, a bit of fear of the unknown but nervously excited. As I gave the final push, she slipped out and Nick started crying. I knew in an instant she wasn’t healed. Like a scene from a movie a song started right then, ‘He is Jealous for Me’ by David Crowder Band. ‘Oh how he loves us’ the lyrics rang out and into the deepest fiber of my being there was peace. As my midwife put her on my chest I saw her unformed skull and held her close it was like a blanket of peace engulfed us. In these moments I knew His love hadn’t failed, He loved her more than I did or ever could, He loves us more than we understand, we were still in His hands, still anchored in His love even though we didn’t get the answer we wanted. He had and has a plan. There in the hospital room there was Shalom, His complete peace.
The night she was fading I held her hands and put my face close to hers soaking in everything I could, telling her that I loved her. I had the image of my heart breaking but all the broken pieces were in His hands. As painful as it was this ridiculous unrelenting peace anchored my heart. Then the final moments the next morning as she simply stopped breathing, still tightly clutching my fingers in her hands – there was still a deep peace. And unexpected joy – joy that this was not the end. She faded into the arms of the One who IS LOVE. In a situation where faith is shattered and hearts are wounded HE pulled us close and completely covered us. In the midst of my heart breaking I have never known peace and love so real. And THAT is a miracle.
At the beginning of the journey God gave us the scripture Psalms 27:13-14 about believing that we would see His goodness, to be brave and courageous, to wait and hope for and expect Him. There were moments (sometimes weeks) where I failed, when fear closed my heart and I had no courage. But in the end we put our hopes in Him and expected His goodness whether she lived or died.
I won’t pretend to understand why she had this defect or why we didn’t see healing. But I don’t regret hoping for a miracle. I don’t regret believing and asking that He do the impossible. We risked our hearts but I now know deep in my heart that even if our petitions ‘fail’ (meaning we don’t see a miracle), that He is still Good, He’s still there right beside us in the midst of the pain, His peace and grace are more than sufficient. HE DOESN’T FAIL. I’m thankful for a Heavenly Father that redeems these hard unfair parts of life. He made our broken path beautiful. I wouldn’t trade this journey for anything. (yes I would trade it for a healthy girl.) If I could go back in time knowing what I know I wouldn’t choose to not walk through this. Carrying her, knowing her, loving her, knowing the tangible presence of God, the deepening of my trust in Him- this path has been priceless.
Our path to Leilah has ended and we’ll never be the same.
Thank you for joining us on this journey. Thank you for the prayer that obviously availed much. Thank you for loving our Leilah and risking your hearts as well. We appreciate it so much.
“It is much better to try and to fail than never have the courage to go after something. Too many missed opportunities lead us into the valley of shadow, where we are a pale version of what we could have been. Passivity, procrastination and caution are all forms of regret. It is where we look back at our fainthearted approach to life and discover how timid we have become. The future is still stretching before us. It is vital that our past does not become our future or regret will shadow us all our lives. Failure is less traumatic than regret.” Graham Cooke
Psalms 27:13-14 [What, what would have become of me] had I not believed that I would see the Lord’s goodness in the land of the living! Wait and hope for and expect the Lord; be brave and of good courage and let your heart be stout and enduring. Yes, wait for and hope for and expect the Lord.