I am just going to write here and not edit or over-think things. This space has always been where I shared my heart for the last seven years. I have never met a coma I haven’t abused in some horrific grammatical way, I make up words and sometimes I even curse. It’s me and it’s real and one day when we meat in person, you will have the same experience, maybe without the cursing.
We are now at the end of the second month of Miss Courtney’s “hospice” care. I don’t know what I expected but I will admit that I am surprised that my daughter is still with us. I have watched her struggle many a day to breathe through her seizures only to be floored watching her chuckle and laugh the very next day. This girl of mine has a very strong will to live and boy does it shine through.
I wonder at the end of everyday, as I lay her in her bed, “Will this be the night God brings her home? If not now then when?” I am impatient for the answer not just because I wish to see Courtney’s struggles and suffering end, but honestly because I am tired and worn through. I don’t see what else this child has to do here. Then again I am not God am I?
I heard a wonderful homily on Sunday from Fr. Hayes at my home parish. He read the prayer that Blessed John Henry Newman’s prayer he wrote on his (our) mission in life:
As I sat there and listened to these wise word words I was struck by their power. Not only in relation to my own mission, but in relation to my daughters. Courtney was chosen by God to do a certain work here on earth. She is a link in a chain, a bond between persons. She is not an afterthought, a mistake or a burden as the modern world wishes to label her.
She is uniquely and wonderfully made, with every single detail decided on by Our Lord. She obviously still has a job to do here since God has not called her home yet. I am being asked to show compassion and love beyond what I think I am capable of every single day.
Compassion means to “suffer along with”. It is the hardest thing to do, especially when you have no control or power to fix anything that may be happening to either yourself or one you hold dear to your heart. It’s exhausting both physically and emotionally but especially spiritually.
I mean how many prayers can one say? Don’t answer that and please don’t judge me for writing it. At my lowest points, I call out to God to carry me because I cannot take another freaking step. Then there are moments of hope given when I think she might actually turn it around and get well. Those usually only last about 24 hours before something horrid happens and I am placed back into my reality once more. That’s when I usually go curl up with my Courtney and take a nap. Some days I wake refreshed and others not, but each time I know I have done my best and the rest is up to God.
Tonight I am tired and worried and I have cried a few times throughout the day. I struggle with loneliness and emotional exhaustion and worry about our families future with Courtney her or without. Jerry is only covered for two more weeks before he will be laid off barring yet another miracle that I know God can provide. Man does he like to play things really close to the vest with those timelines.
Each day I hold my girl, I smell her hair, I put lotion on her tiny hands, I rub her feet, her tummy and her back so she will relax and not be in any discomfort. I sing to her, I read to her, I tell her about all the people waiting for her in heaven, I cry over her, I pray over her, I pray with her and then I do it all over again the next day. It’s honorable work but exhausting work.
I know that when God does finally call her home, my hands will be empty and my heart will be broken and I will think back to these days and berate myself for complaining, knowing that I will never get to do any of it again.
But tonight I am tired and bitchy and sleep deprived and very, very sad that this is how it’s all going to end. I am not even sure any of this even makes sense and I really don’t care right now. I just want it to be done.