August 1 – Day 63 (nine weeks): Dear Kelly, what a beautiful girl.
You had an episode this morning, where your heart rate and breathing went down and wouldn’t come up. You had blood in your lungs this morning and three spit-ups. The X-rays show that your lungs look really wet. You have a new tube right now, and it’s not leaking, so that’s good.
The doctor asked this morning what the plan was for you. I said I didn’t know. God knows the plans He has for you. Your days, like mine, are numbered by God, but it feels like we are being asked to number them.
In Proverbs, it says that if we seek God with all our hearts, and acknowledge Him in all our ways, that He will make our paths straight.
Dear God, our path doesn’t feel straight. We don’t know where to go from here. I know you don’t show us the whole path we have to walk. I don’t know if we are strong enough to know all that is to come on this journey. Lord, we’re just asking for light for the next step, but I guess since we can’t see yet, it’s not time for the next step. Lord, please give us unity and strength to do whatever we have to.
Your chest is stiff and made the RT ask if you have seizures. You haven’t yet, but it is something that babies with Trisomy 18 have. Your first blood gas came back “not good” this morning, so they are taking another one.
I can’t hold you today because you had a bad morning.
Granny made you three little nighties, because the first one she made you got too small.
I dreamed once that we took you home and everyone cheered. I don’t have that dream any more. I feel like I know you will die soon; we will be home by the fall.
It seems wrong to be talking about your funeral when you are still so very much here with us. Sometimes, I let a little wall creep up between us, trying to prepare myself. We’re losing you. I do love you so, little girl. Please don’t ever think I don’t, because I hold my tears. I’m not always as brave as I seem.
We can’t get your oxygen level down. You are at 60%. You are still growing, 1620 grams, now. Chubby would be an exaggeration, but you’re certainly “nice and plump.” It seems like you are still very much living when you are gaining, yet your lungs and heart are slowly dying.
August 3: Dearest Kelly,
Yesterday, you went to be with Jesus. We miss you already. Can everything be so different yet everything be the same?
My breasts ache and remind me that you’re gone. I won’t get to teach you how to spell your name.
You went home Tuesday, around noon, in Mommy & Daddy’s arms. We committed you back to Jesus’ arms and sang you to sleep. You never struggled or cried.
I held you against my chest for a while, while you were still warm, and rocked you, but I knew that it wasn’t you anymore. Your pale lifeless body in my arms is etched forever in our memories, but so too, is your peaceful face and God’s answers to our prayers, even in your death.
We prayed that we would be able to be with you and hold you, that you would not be in pain or discomfort or struggle. God also blessed us with a Christian nurse that morning, who could understand both how much we valued your life and how, in the midst of the hardest thing we will ever face together, we still have hope.
I read somewhere after you were born that life is like a piece of embroidery. God sees the beautiful picture on the top side, but we can only see the ends of all the strings on the bottom.
The nurses helped us make molds of your hands and feet before you died, and afterward, they made a handprint.
We prayed that God would heal you, and He did, in His own way. The Bible teaches us that in heaven, we will be given new, perfect bodies, and a new name, especially chosen by God for us. I wonder what your new name is.
For the first time since you’ve been born, I asked God “why” last night. Some of the reasons we already know in our hearts, and some, we will not know until we get to heaven. No matter how hard this road is, you will always be our little blessing, and even had we known from the very beginning what would come, we still would have wanted you with all our hearts.
August 7: Dear Kelly. Tomorrow is your funeral. I can still feel your soft body in my arms and still see your beautiful little face slowly turn pale. I can’t explain it, but despite the ache of missing you in our lives, I feel unexplainably happy and at peace.
I would never have dreamed that we could make it through something like this.
Yet, now more than ever, God has proved faithful and good. We don’t know what the days ahead will bring, but as God has led us each step on this journey so far, we trust that He will continue to comfort and strengthen us.
We pray that God will use your life to comfort and draw many to Himself.
We love you, Kelly.
This is your story.