There is an ancient story that talks about the world being changed by the wings of a butterfly flapping or a pebble being dropped into a lake. Abigail is God’s pebble on this earth…
Her life has been less than three weeks but we can already see that her impact is great. People ask us “how do you do this”, “there’s no way we could make it through this situation”, I don’t believe that for a second. We are ordinary people, that love God. Our love hasn’t always been perfect, our hearts aren’t always pure but through this experience one thing has become crystal clear to us. God is grace, mercy and love. We haven’t asked for it, expected it or strived after it. It has always been there, at the same overwhelming level, but we were so shut off to it that we didn’t realize it. Those three things have been the only constants throughout this entire situation. Some people may wonder how we can have that perspective when our daughter has an inoperable brain tumor that will kill her. Very simply. We believe (and if you would like to further discuss this please message me and we can set up a time to talk) that God has a plan for every person on this earth. We are all created for a reason, not just to exist or live the 60-100 years on this earth. God has purposed all of us to be His reflection on this earth. In being that reflection, bringing people to Him that so they wont experience an eternity away from Him. Abigail has that same purpose. How God will use us to fulfill that purpose is not up to us. We are called to be obedient to the path placed before us for our lives. We have been placed in this situation for a reason and that reason is to steward Abigail while she is creating waves on this earth. She is God’s child, just as we are. He has entrusted us with her care, life and development of her soul.
You may laugh and scoff at that statement, as being a coping mechanism and using religion to cover up that pain of this tragedy. My response would be one of sadness, for you. If you haven’t felt the love of Christ as we have I understand that you would be skeptical. But once you know Him, you are forever changed. Are we sad, extremely. Does this hurt like nothing else that we have ever experienced, yes. But we have joy. A never ending joy. A joy because she wasn’t supposed to live this long and she has. We wanted moments and have gotten weeks. I can tell you my daughters mannerisms, faces and temperament. Things that I will remember forever, whether she lives to eight weeks or eighty years. Those moments I will always been thankful for.
Tragedy is a difficult thing. I have thought a lot about death lately. We get so focused on what could happen and not the present. People feel sad for us because we are going to lose our daughter but they don’t think about the people today that lost someone tragically. 80 people per day are killed in a car crash. Think of how many of those people are mothers, fathers, children. You always hear, “If only I knew, I would have done this or that with them…” Thankfully we do know! We have allowing this circumstance to change us into a family that lives in the moment. A moment of spontaneous dance party with Audrey, running through the rain, crying when sadness hits, or stopping to say “I love you.”
God’s little pebble is changing us in more ways than we could have ever imagined…
Back to the neurosurgeons office this morning. Baptist Downtown will forever give me nightmares and I plan to avoid the place like the plague when all this is over. We were greeted with, “Oh my gosh it’s Abigail! We’ve been waiting to meet you!”. Never thought we would be well known to the pediatric neurosurgery community. The other mom in the waiting room looked at us and struck up a conversation about her daughter’s spina bifida and wondered what was up with Abigail. Small talk in the neurosurgeons office. Yikes.
Basically, we called Dr. Beier yesterday to ask some questions. Abby is doing so well, we wondered if that was normal or if maybe there were some doubts about her diagnosis. I went in there praying that maybe she’d look at Abby and decide we should run more tests or something. Decide that she had to have been wrong, have some doubts that it couldn’t be as bad as we initially thought. Because look at her! She’s doing so well! She’s like any other newborn (minus an orange feeding tube, but we hardly even use that!). But no… I didn’t hear any of that. She’s confident in the diagnosis being one of those nasty cancerous tumors. Shes confident that there are no good treatment options available. Surgery isn’t an option and chemo at this age would make her completely miserable and likely kill her. She’s confident that we are doing the right thing, the best thing for Abigail, by doing absolutely nothing. Babies are hard to predict. She said it could be months before we see a decline. Or not. Who knows. This is a torturous process. Basically there are three outcomes possible – 1. It is a yucky cancerous tumor and we can’t do anything to stop it, 2. They are wrong and it’s a benign tumor and isn’t going to change so we’d wait anyway until Abby was older to remove it, or 3. The tumor miraculously goes away. Dr. Beier said she has never seen a tumor disappear but my vote is for option 3. I guess we’ll wait another few weeks and if things are the same, do another MRI and see what the bastard is doing to my daughter’s brain.
In the meantime, we love on her. Try not to look at her under a microscope wondering if this, that, or whatever is a sign that something is happening. Give her lots of snuggles, sing her songs, dance with her, and take walks in the sunshine. Let Audrey smother her with kisses, literally we have to pry her away from her Baby Abby! Thank God for each day, and try not to be angry at Him for this sucky situation. I know He cries with us.
At some point, we’ve gone from living in fear and anticipation of Abigail’s death to celebrating her life. It’s a beautiful thing. Abigail has opened my heart, stolen it away, even when initially I was afraid to give it to her, knowing she would likely break it into a million pieces. It was hard not to be guarded, hard not to be a little leery of this 8lb angel baby, threatening to leave me at any minute. But she’s defied the odds. And continues to do things and progress like we never thought possible. Watching her sparks hope inside me, and honestly I haven’t been very hopeful throughout this journey. I know what God’s word says, but its been hard to tune out the “reality” of the situation. But Abby doesn’t seem to care what anyone says about what she can do or how her life will look. She’s been doing her own thing, with her own agenda from day one. God’s agenda. Much different and infinitely better than my own plans and expectations of her.
Don’t get me wrong, the fear is still there, sneaking up on me when I think I’ve managed to forget the words “terminal diagnosis”. Rendering me paralyzed and useless to do anything except torture myself with every “what if” scenario and giving in to the overwhelming sorrow. But it’s not always there. There are many moments of joy between the tears. A sense of normalcy and family is starting to emerge, rather than a state of limbo, waiting for the ball to drop. We still don’t know what the future holds. But we are ready to live through this, rather than just merely survive. A lifetime is a lifetime, no matter how long or short it is. And we are determined to make Abigail’s lifetime incredibly fulfilling and joyful. She will know how loved she is.
Two weeks you have been here with us. Two weeks and countless moments of joy and wonder. Those eyes looking up at me, those lips puckering, those little fingers grasping at mine. Staring at you, trying to memorize every detail. Smelling that sweet baby smell. Rubbing your soft baby skin. Trying to bottle it all up and store it in a place where I’ll have it for later. A lifetime of kisses, a lifetime of memories. I don’t know how long that lifetime is, so I just try to soak it all in. Makes you look at life in general much differently. Our time is all finite. I should look at everything like I look at my Abigail. Every moment is precious. Every moment a gift to be treasured. Every moment intentionally noted and stored in a safe place in my heart. We should all work on that
I’m tired. Tried of pretending my daughter is “normal” and all these random weird things are “normal” newborn behaviors. Tired of well meaning friends telling me they “don’t believe the reports” or “the doctors are wrong” or “God is greater”. Yes, I know that our God is perfectly capable of wiping a tumor out of my daughter’s brain. But I cannot deny that she has been given a terminal diagnosis, before she was born, before she even had a chance to live. That the neurosurgeon looked at my husband and I and said there was nothing she can do. Nothing!? She, with her gifted hands and years training, gave me her professional opinion which was take her home and essentially love her until she dies. I can’t deny that every week we have our hospice nurse come check in on my newborn baby girl. Hospice!? Hospice should never be a part of newborn baby care. Our pediatrician told us there’s no need to vaccinate her, no need to come for the plethora of newborn appts. Because most likely, she will not live long enough that a vaccine is going to matter. That where she falls on the growth charts aren’t important. These are all facts. Facts that I live with and encounter every day. I’m afraid to sleep, waking up means a brief period of panic while I make sure she’s still alive. Because I know one day, I’ll wake up and my precious Abby won’t be laying next to me making sweet baby noises in her sleep. I know God can heal, I know He is good, but I don’t know if He will heal my baby. And I just want people to acknowledge that my child might be dying. That she has a brain tumor. That this absolutely sucks. I don’t want to hear that God can heal her. I want someone to look at me and ask me how I’m going to live through this. And I’ll look back and say I just don’t know. I don’t know if I can. And then maybe I’ll cry. Maybe I’ll stop pretending too.
Sometimes I feel like people see others dealing with hard stuff as exemplars of faith, strength, perseverance or whatever. I’m guilty of it too. You look at someone and wonder how on earth could they be standing after hearing this news? How can they function? They must have super strength, faith, etc to make it thru x, y, or z situation. I guess I may be one of those people now. Who’s story you read on Facebook and think wow, her faith is incredible, how could you deal with a terminal diagnosis for your newborn baby? How could you watch her die? My thought is this – I am not any kind of exemplar of godly anything. I am merely human trying to keep my head above water. I am more doubtful than Thomas, more careless than Peter, and have betrayed my Jesus more often then Judas. I don’t know how Jesus loves me but I know He does, regardless of the flaws others may not see. Truth is, you don’t know what you can live thru until it happens. There are many times during the day when I feel like I can’t live thru it. The sorrow is too dense, too suffocating, too paralyzing. But something pushes me along. Something forces me to put one foot in front of another. Something forces me to believe that something good will come out of this pain. Something forces me to believe there is some unknown reason why I have to sacrifice my daughter. And that reason is good. Better than good, it is perfection. That something is faith in the one true God, who cries when I cry, who lovingly gathers me in his arms, wipes away my tears and says,” I am so sorry but there is no other way to do what I have to do”. I will understand one day, and I will rejoice that His plans were (and always are) infinitely greater than mine. And I will hold my precious daughter for all eternity.
We are not bloggers. Stephen has talked about starting a blog for a long time but it’s just never been done. It seemed like starting a blog now, with all the uncertainties that come with having a newborn diagnosed with a terminal brain tumor, was a good way to share our hearts with you. Better than annoying the Facebook world with ridiculously long updates.
Stephen and I want to share our Abigail’s life with you, knowing that God will use her and her story to touch those around us. We don’t know what this dance of joy and grief will bring, but we do know that her life has a purpose, for some incredible reason, she has been given to us. We will treasure her and allow her to impact this world.