It was a rough night for me last night. I should have expected it. It usually take about 24 hours home for me to completely process whatever emotional distress we have just been through with Miss Courtney. I woke up at 2:30 to her humming through the monitor. I came downstairs, hugged her, kissed her, changed her position and wrapped her back up in her favorite blanket before heading back up to bed. She went right back to sleep for me.
I did not. I laid in bed listening to Jerry's even breathing next to me and Courtney's sweet little snore though the monitor and began to cry. Not the ugly snotty cry, but the gentle crap, I don't want anyone to hear me cry. You know the one. I call it my Mama cry and usually do it while I am in the shower so I can blow my nose without anyone being the wiser.
I felt like such a pressure cooker was building all day and I was getting a headache. I knew it would come, the tears of gratefulness, of exhaustion and of resignation. They always do. I have come to think of it as sort of an emotional car wash. You go through all the mud and crap and finally when the trip is done, you get to clean of all the muck and mire.
That's what ER and hospital trips do to me. It's like you're in the battle and all kinds of scenerios are being thrown at you. You duck and jive trying to protect the one who cannot protect herself and in the end your exhausted and feeling the need to grab your kid and run for the hills where life seems so less complicated. All I want to do is love her and take care of her but these damn seizures just make doing that without help so freaking hard.
I just had to let some of the pressure out before I crumbled under it all. I needed to walk through the whole 24 hours once more to make sure I had done my best to be her advocate, to be her voice. I pray that I did. Needless to say, the 6 a.m. feeding came way to early for this Mama and the day has dragged a bit since.
Coffee is my friend.
So the news this morning from the Docs is a little more tenuous than we first thought. These seizures she is having, will not be going away. Only a miracle of God will do that. They can be controlled a smidge more through increasing her meds but by doing that we are trading seizure protection for her being alert and awake and more in tuned with the world around her.
Seriously??
We just got her awake and beginning to function and now they're telling us we have to choose?? I don't want to choose her smile and laughter away. I don't want to EVER do that. I also don't want her to fight for breath as the seizures rolls over her time and time again.
What the hell kind of mother would I be if I chose more suffering for her??
So Monday we will go and make some big choices in consultation with her Neuro Team. I ask for you prayers for that meeting. I ask that God's will be done and we are able to know without a doubt what the best choice to make for our Courtney is.
This afternoon I type this while my girl is taking a little nap. Nothing else matters right now. Not the furlough, not the medical bills, not the laundry or the ironing. The only thing my heart can contemplate right now is making life the very best I can for this sweet and beautiful young woman who said "yes" to God when asked to carry this special cross.
This new news my friends...I not only don't understand but I don't like it at all. I feel like I just got her back and now she's going to slip away again. My heart breaks at the very thought of this.
In moments like this I cling to Jesus, who spread his arms out in love for ALL of us. He knows what will come for my girl sooner or later. His love for us is so deep and so beyond what I can ever fully comprehend. I trust him in ALL things, especially the ones I don't understand.
I cling to this notion NOT because I believe it every moment of everyday, but because I NEED to believe it every moment of everyday. I NEED to cling to the Cross, cling to the One who already has won this fight for my Courtney and for me.
I pray daily that God will help me in my un-belief because let me tell you there are moments when all I want to do is scream and yell at the injustice of it all.
Then I look up and see the Crucifix and know that someday soon my girl will rest in those arms of her Beloved and all will be well for an eternity.
What mother can argue with that?
Today I am so grateful for:
#1492 ~ #1508
** the consolation of the Cross
** Adoration with my husband
** a long walk with my girl where we got to take in the beauty of fall
** hot coffee and REAL half and half from the local creamery
** emails from friends checking in on me and my girl, always offering to pray for us both
** watching my beautiful daughter sleep, looking so peaceful and without a worry
** the strength of my marriage and what a gift that is to me when I am in crisis
** uplifting music that leads to prayer and praise
** my son, who loves his sister and always steps in to help, without complaint
** clean sheets and a well made bed
** tuna and saltine crackers
** cheesecake in any flavor
** flannel shirts and warm boots
** walking hand in hand with my beloved
** a new supply of Kleenex
** new recipes and formulations to help my daughter gain weight
** Jesus my Savior and His beloved Mother Mary
Labels: #1000 Gifts, 31 Days of Gratitude, catholic family life, Courtney's World, special need parenting, special needs children
