Anyone out there?
My dear readers, what must you think of me for abandoning you for the last week without a word?? I am so sorry to cause concern and worry out there in the land of interwebs. I promise I have a very good reason or possibly 10,000 reasons why I have been absent here.
A week ago we received some not so favorable news in regards to Miss Courtney and her weight/gastro/scoliosis issues. It has taken me a week to process everything and adjust to yet another change in her daily care and I am still trying to fine tune things to give her the best available outcome each day.
The long and short of it our sweet girl is really having some serious trouble keeping the weight on. She has gotten down to 93 pounds. For a 5’6″ young woman that is just plain unhealthy. This leads to further complications in regards to her seizure control since her meds are given according to her weight. They are very tough to adjust so at the moment the Nuero team felt it best to allow her to be slightly overmedicated and have us really concentrate on getting some good healthy weight gain. The up and down of such a strong med would be dangerous for her already taxed kidneys and liver to handle.
With the weight loss her scoliosis has become very apparent. You can count her ribs and see the 31 degree lower lumbar curve. This means we must take extra care with lifting her and placing her in the most neutral seated position we can. This will give us the best chance of avoiding any pressure sores or any injury. At least we hope so.
My Courtney is pretty fragile right now. It’s a little overwhelming to be completely honest.
She is being tube fed every two hours and being given five small meals by mouth throughout the day. Hopefully this will slowly bring back the weight. She was weighed today and she has gained a pound so we know we are on the right path. I feel like I have a newborn in the house with all those feedings. Thankfully our last feed is at 11p.m. and the next one is not until 6 a.m. so it gives a small window for decent sleep.
Unfortunately this mornings excitement began at 3:30 a.m. with a rocking and rolling grand mal seizure. I gotta say it is one hell of a way to start the day. My heart was pounding and the hair on the back of my neck standing on edge, never mind what Courtney was going through. It’s not what I wanted but alas I don’t really seem to have a choice now do I?
Yesterday afternoon I was holding Courtney in my arms, snuggling on the couch. In one single moment I was completely overwhelmed by this feeling that my time left with her is short.
Tears spilled over and I whispered into her ear how much I loved her, over and over and again. It was just the two of us in the room. I continued whispering my love, pouring out my mother’s heart. I told her that I wished I could hear her say “I love you Mama”.
How I long to hear her voice say those words.
I looked into her eyes as the tears continued. I just stared at her beautiful blue eyes that remind me so much of her Daddy’s.
Then she looked at me…truly looked at me and smiled.
Her eyes didn’t leave mine for several minutes.
“You’re telling me now aren’t you?” I whispered as she kept looking at me. “You are telling me the only way you know how. With your beautiful eyes and sweet smile. You love your Mama don’t you?? I love you so much Courtney. I love you with my whole heart. Know that my girl. Know that it is the greatest honor to be your mother. It is my whole life to love you and your big brother and your Daddy. I could not have asked for a better one. It’s more than I ever dreamed of as a little girl. Know that my sweet Courtney. KNOW that you have been loved and will continue to be loved the best way I know how.”
Sometimes you have to allow love to break you.
You have to allow all that pent up fear and worry to be washed away with the strongest love known to a mothers heart…that of the innocent trust of her child who can do nothing without her.
Pretty damn impressive for a cortically blind young woman.
We stayed that way, my daughter and I, staring into each others eyes and smiling for I don’t know how long. There is no photo of that moment except for the permanent impression it left on my heart. I will hold it deeply in the folds of my memory for as long as I take a breath.
It was the BEST and only Mother’s day gift I’ve ever wanted but never thought could be. To “hear” my daughter say “I love you”.
Things change around here at the drop of a hat and I have learned to roll with the punches as best I can. This situation is no different. I will embrace what will be with as much JOY as I can muster. My family deserves no less than my very best. No matter what the coming weeks, months and (hopefully) years may bring, I know that with everything that is in me, I will love as My God has shown through His ever faithful example.
My Courtney deserves no less.
My Jonathan deserves no less.
My beloved Jerry deserves no less.
My God deserves no less.
This is my promise.
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