not my home

I have started this update several times in the last day and a half, but am not sure how to put into words all the thoughts that I have in my head, and all the pain and sadness that is weighing on my heart.
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I guess though, I will just start with the facts. I had my Dr.'s appointment yesterday morning. I was praying, I was hoping, I was pleading with God that despite what our appointment before showed, that April would be showing improvement. I was praying that her heart rate would be increased, that she would be getting stronger, maybe even growing larger. However, I found out none of those things.
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What we did find is that April's heart rate is even lower. Consistently around 90 bpm. Dr.'s believe that she is in distress. Her movements have become much less frequent, and in short, the Dr.'s do not believe that she is strong enough to survive outside of the womb, nor do they believe she will survive the birth process. She is too fragile. Too small. Her heart is beating just too slow. As D and I talked with our Dr.'s yesterday, we asked many questions and covered many topics... We talked about scheduling a c-section... We talked about continuing to wait it out... etc. Some new things, some old, but all answers that seemed to hit so much harder than ever before.
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I have known the medical possibilities and in our Dr.'s eyes, "high probabilities," since we learned of April's diagnosis months ago, but I have never wanted to shut out the possibility of a miracle. I haven't wanted to solely plan for the worst and in a sense, or at least, in my mind, be limiting what God can do. I have been praying for a miracle, and have been so touched by all of you, who have been doing the same.
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Yesterday after my appointment (and the foggiest visit to Panera/the most tasteless cup of soup I have ever had), I came in, shut my computer and spent time just laying in bed with my girl. I talked with her. I sang to her. I cried. I told her how much I loved her and how much I want her. I told her all the places I want to take her, all the thing I want to do with her. I lifted my shirt up and just ran my hands along my bare small belly, praying out to God. "Lord, please... This can't be it... I don't want to lose my daughter... I love her..." and so on. At some point, I fell asleep...
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When I woke back up I started really dissecting what it was I wanted. It is a thought I have had before, a thought I am almost reluctant to write about, because the last thing I want anyone to think is that I don't believe God can heal April. He can. I know He is able. But the idea of "performing a miracle" sometimes doesn't sit well with me. Let me try to explain...
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I have an amazingly strong friend, R, who lost her daughter a year ago this past week to a different Trisomy diagnosis. As she has grieved the loss of her daughter, one year later, I have thought a lot about how, while our grief is 100% normal and justified, it is only us that grieve for what is lost on this earth. R's daughter is in Heaven and while her parents miss her, and are sad and appropriately grieve that loss, their daughter is in Paradise this very moment, and isn't that what we all want for our children? for our family members? for ourselves? ... I know I do.
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See, we pray for miracles. And miracles do happen. But whose miracles?
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I know that if April's heart stops beating and she dies, she will be in Heaven. And I know that Heaven is the most perfect place. The place we all wait for. The place we long for, at times. April would be in a place that is so much better than this earth, and all of the pain and hurt and separation from God we go through in our earthly bodies.
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Today when I woke up, I changed my prayer. Praying "for a miracle" just seemed too vague. Because my miracle is for April's heart to beat faster. My miracle is for her to stay with me until she is completely full term. My miracle is for her to live. My miracle is for me to hold her, raise her, love her, not distantly, but in this world. My miracle is to be April's Mom for the next however many years, on this earth. My miracle does not include a gravestone, dirt, pain and death. It just doesn't.
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But...
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God's might.
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That is hard to type, but it is true. We don't know God's reasoning, or understand His ways. I don't think it would be too good if we did because then we wouldn't need to have the faith we do in the times of burning uncertainty. We would "get it," and things would probably require less faith with the explanations attached.
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From this day forward what I want to pray for is His miracle. I want to pray for His will. Not my will, not my miracle, but His will be done...
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Tonight I am sad. I fear every kick will be the last. I wake up in the morning, in the middle of the night (sometimes in the middle of the day!), and am fearful she is gone. I am so sad. I don't understand. But I am praying for His will, even if that means that I may not be granted the opportunity to raise April on earth. Praise God (especially today as we celebrate Good Friday) that when all is said and done, this world is not our home...