Two weeks!

8/20
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

Nothing is normal

8/17/15

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.

truth

8/13/2015

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.

Hello world!

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.