But what if she lives?

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We have been told since I was 30 wks pregnant that our baby was going to die. We’ve been through all the emotions. I’ve envisioned her death a thousand times, watched her die a thousand ways. Lost night after night of sleep afraid to lay her down, to close my eyes, paranoid she’s going to take her last breath without me. I’ve planned her funeral, what we would do with her ashes, what songs we would sing, what pictures I would display to show how perfect she was and how much she was loved. I’ve practiced how to tell the world we lost her, without losing it myself. I refused baby gifts, dreading I’d have to return them without a baby to use them. I’ve left tags on clothes, gifts still in their bags, older baby toys handed down from big sister Audrey still packed up. Abigail has no nursery, no cute, themed room especially designed for her. In fact, I have no idea where she’ll sleep when she has outgrown the bassinet. We haven’t planned that far ahead. In an effort to guard my heart, I’ve made every attempt to prepare for Abigail’s impending death.

But what if she lives?

An idea I haven’t even let cross into my head until recently. I didn’t plan, didn’t dream, didn’t hope past tomorrow. Then a couple weeks ago, as Abigail is thriving and growing, a thought popped into my head – but what if she lives? And after this week, and all the new information, new hope, after her seemingly somewhat improved MRI. What if she lives? We are prepared for her death but are we prepared for her life?

I don’t know. They told me there was no need to do newborn appointments or vaccinations. So I didn’t. I don’t know where she is on the growth chart or if she’s meeting her developmental milestones. I haven’t done anything related to Down syndrome, haven’t checked her heart, thyroid, labs, or even DNA for a 100% diagnosis. I haven’t  looked into physical therapy options, toys that help children with decreased muscle tone, or given her much tummy time. All these normal newborn things weren’t even on my radar. Now I’m wondering if I’ve done her a disservice but treating her like she was going to deteriorate quickly. What if she lives? Will we run into issues bc I didn’t start therapy early enough? Or will she get sick bc she missed a vaccine? Or does she have a heart, thyroid or some other issue we don’t know about bc we didn’t check?

I don’t know. But I have to believe we’ve made the right decisions up until now. I also have to change my thinking and give life a legitimate spot in the “what if” scenario list. Taking it out takes out a huge portion of the equation – God. Life is always an option, healing is always an option. Nothing is 100%. How I have to continuously remind myself of that! We’ve been told Abigail was going to die for months. But God said otherwise. She’s clearly not dead. Or close to dead. She’s actually thriving. Nurses at Wolfson’s for the MRI actually triple checked her identification bc her appearance did not match what they anticipated after looking at her chart and previous images that morning. Her medical records say this should be a very sick baby. But God said otherwise. It is the only explanation. You all believed it, spoke it, prayed it over our Abigail, when I couldn’t do it myself. I fully believe that’s why we are sitting here baffled at her. We been told all these things, I think these things… But… God.

It’s terrifying to put life back on the table. It scares me to hope. But someone said to me, “you won’t regret hope”. So I’m allowing myself to hope, and pretty recklessly right now. Suddenly, I think my baby is going to live. Truly I do. Even though they still say it’s a very long shot. But I’ll take it. Even though I get very overwhelmed thinking about what her life will look like if she lives. Her brain has had so much trauma. She may have significant special needs. Stephen and I have talked about what her “quality of life” might look like and would it be worth it to put her through all of it to be severely disabled. But who are we to say what “quality of life” someone has? God gives us life, it’s all high quality! So we’ll take it one day at a time. She hasn’t given up and we will not give up on her.

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9 thoughts on “But what if she lives?

  1. Thank you so much for sharing your beautiful daughter Abigail. What a wonderful blessing she is. Never give up hoping for her. Earthly doctors said she didn’t have a hope, but look at her!! Our Heavenly Father is in control of her life and nothing will change that. Enjoy every day you have with her. Thank you again.
    Love in Jesus from Julie

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  2. This is Arabella’s mom, Dawn. I’m sure you’ve heard of her through Jeannie Kight! I’ve been following your miracle through Jeannie and your posts. I know that you didn’t really have a baby shower, I THINK ITS TIME TO HAVE ONE, TO CELEBRATE ABIGAIL LIVING! I’ll get Jeannie on that. If you need anything, an extra hand, someone to sit with the girls while you do something for yourself, chocolate, please let me know. I too am a RN and have special needs experience professionally and personally. Jeannie can give you my phone number if you want it. Lots of love to you all! AND DONT WORRY ABOUT ALL OF THE THINGS THAT YOU HAVENT DONE. YOU HAVE NOT DONE HER A DIS-SERVICE! YOU GAVE HER WHAT SHE NEEDED WHEN SHE NEEDED IT, YOUR LOVE. WHO IS TO SAY THAT HER MIRACLE DIDNT COME FROM THE LOVE YOU SHOW HER! God bless you!

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  3. Your sweet baby girl and your entire family are inspiring and giving people hope. Thank you for sharing with us. God has blessed you and you are sharing that blessing. I pray that the gift of peace is given to you all, And that Abigail continues to thrive.

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  4. We were told that my granddaughter would never live. They said she had a huge hole in her heart and she should be aborted. The doctor was so wrong. She almost went full term and she is perfect. We never dreamed of her not entering this world. She is such a joy. The doctor in Montana should be banned from his practice!

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  5. Where do I begin? Our family has been praying for your family without ceasing. A funny coincidence, your cousin is our son’s occupational therapist. A couple of weeks ago we were chatting and I told her about the story I saw on Facebook and how our churches were praying. I was surprised to learn that you all were related. I feel a bond with you even though we have never met, you see at 13 weeks we were told our son probably wouldn’t live and that he has trisomy 21. My husband and I responded with “he is our son and we will give him every chance possible. It was a rough start. He was delivered by emergency c-section a month early and spent 26 days in the NICU. He has beaten all of the odds we were give. He is 9 months old and is now starting to crawl. My husband has now taken on the mantra “don’t tell me the odds”. Don’t let anyone take your hope away! Know that thousands of people lift your family before God everyday. Sending love and prayers.

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  6. I have been thinking about your baby girl every day since I first learned about it. I am keeping all 4 of you in my prayers.
    With Love from Florida,
    Melissa

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