A new low was reached today for our Courtney. She is now only 69 pounds. She has been suffering through hours and hours of rolling seizures over the past 48 hours. Last night she went on for almost ten hours before stopping. I slept in bed with her last night and held her as her body rocked and tolled with each seizure. Quite a feat I will say for the plus-size Mama to crawl into a twin hospital bed with this kid. So happy there are no cameras in her room.
She cried last night. Real tears. She was scared and confused and in some discomfort. For Courtney to cry means she is in pain. That almost broke me to wipe away those little tears. It’s just further confirmation for me that her time is close at hand. Tonight she has had rolling seizures for almost four hours. We cannot feed her enough calories to keep up with all the ones she burns with these seizures. Even with a continuous feed. It’s just not happening.
All I can do is hold her if she allows it and sing softly to calm her. There is no sleep at the moment for me. My mind is in a constant state of preparedness to listen for breathing patterns and distress of any kind. I am OK with that. It’s a privilege to love my daughter through ALL of this.
We weighed her after bath time and I was not prepared to see that six in front of the nine. It shocked me. I guess it’s just more proof to me that as prepared as I think I may be for all of this to happen, maybe it’s just not possible. I do the best I can to handle whatever comes and the rest I truly lay at the foot of the Cross.
It has become easier this past week to let go of my fears and expectations. I chalk it up to all of YOUR prayers and the fact that I know in my heart time is short here for my girl. My Mom told me last week to stop and take it all in. Not to worry about the state of the house or if there are dishes in the sink, just take the time to soak up my time with her.
I have made a decision. My time here in this space will be a bit lighter over the next few weeks. I promise to keep you informed of what’s happening. I will keep posting to FB and instagram but you may see fewer blog posts. I hope that’s OK. I just need to take the time to be present in real life.
I am determined to take in every hug, every laugh, every smile, every time she will allow me to hold her in my arms, how her hair smells, how her body curls into mine and all those other intangible moments we cherish as Mama’s. I feel like I need to fill up my memory bank for when Courtney has gone to heaven and I won’t be able to hold her sweet little hands again.
I will begin decorating the house tomorrow for the coming holiday. I don’t usually do it this early but my heart is prompting me to get it done now. Courtney’s favorite thing at Christmas are the lights on the tree. I want to make sure that she has that one more time. I know, I know, the lights in heaven far outshine anything I can do here, but she loves them so. Thanks to my friend S out in Washington State we have new lights for the tree this year so they will be brighter than ever.
I have received several emails and FB messages asking what you, my sweet readers, can do for us this holiday season. It looks like Jerry will be laid off on December 1, 2014 unless we get that Christmas miracle by Wednesday of this week. Having known this for about a month or so, we decided not to have Christmas this year in the traditional sense. No gifts and such under the tree.
Don’t be sad. It’s really alright. There is nothing we need. There is food in the deep freeze and now new lights for the tree. We have our Courtney for however long God grants us this and we have each other. I do need to get some marshmallows for the hot chocolate though. It’s just not the same without them.
We have what is important which are family and friends who love us and support us, a God who loved us into existence and will never abandon us, a roof over our heads, heat, water and ALL of you praying for a peaceful death for our daughter. What else do we need?
Yes, there are still medical bills to pay and medical debt to pay off, but I know that God will help us take care of that in time. If you wish to help, the links are at the bottom of this post. You know we love you for it. As for Jerry’s job situation, I am trusting that one to the Good Lord as well. He has gotten us this far, I know He will carry us the rest of the way.
I will pop in here with news and photos when I can, I promise. Please know you are loved and prayed for by my Courtney and I every day. I do not know if she is strong enough to make it to Christmas or much past that. Only time will tell. I just know that my love and admiration for her grows exponentially by the hour. She is one strong woman of God, who is not wasting any of her suffering. Of that I am most sure.
Keep praying for us, especially for Courtney and for Jerry. Sleep for me would be nice too and some peace for mind for Jonathan. He has experienced so much loss for a twenty-five year old. Sometimes it just gets to me. He is one strong young man. God has great things in store for him. I just know it.
Go hug your kids and tell them how important they are to you. Tell them how much you love them. If you don’t have kids, then do a random act of kindness in Courtney’s name. Spread a little love and joy around. It’s what she does every time she smiles.
until next time…