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.