snuggles given daily…

My sweet girl is now 79 pounds of love. She is sleeping about 12-15 hours a day. Not much energy for much but she is happy to snuggle with Mama for hours.


No complaints here.


Her skin is so thin it’s like paper. We are massaging her twice a day with Udder Cream to make sure she doesn’t have any issues when she seizes and her skin contracts.


She only goes #2 every five days or so and no matter how much Exlax or Myralax we give her I usually have to extract it. She is still going #1 several times a day and we are hydrating every few hours. Don’t know how else to write that but there you go.


Her seizures come when they come, no rhyme, no reason. She turns white, then blue, then she takes a breath and all will be well. One of these days I know that may not be the case but for now it is what it is.


On the good side of things Jerry’s job has been extended two more weeks. This is HUGE relief but we are still storming those gates for something permanent. He is working his tail off and I am so proud of him. I know God has a plan but boy howdy does He like to wait until the last minute.


We will be going over the funeral liturgy in the next few days and completing a few more details that need to be seen to for our Courtney. I do OK as long as I separate myself emotionally before discussing anything. There will be plenty of time for me to totally lose it. I prefer not to do that anywhere but in my own home. Once the faucet starts, it’s not easy for me to stop it.


We have decided that for now, no more visitors but family. My Courtney uses everything she has to smile and be present for those who come and love on her but this Mama can’t do it anymore.


When Miss Courtney is sleeping, this Mama sleeps. When she is up, I am up. Lately she really likes being awake from 3:30 a.m to 5:00 a.m. I rub her back, her feet, her tummy. I sing, she smiles. Then she goes back to sleep. It’s a little more challenging for me to do the same, but I try.


Needless to say Miss Courtney’s schedule has taken over the house which is just fine with me but makes it more challenging to schedule visitors. We so appreciate all those who have come by to spend time with our beautiful girl. Your hugs, smiles and words of encouragement mean so much to us. SO very much. However I think the time has come for us to close the doors and just be together as a family.
Jerry and I talked about it and have decided it’s the right time.


Wow…that was hard to type but necessary.


This is where we are. There is no rule book for how things are to be done. Gosh, how I wish there was one. I like rules to follow. I really, really do. ALL I know to do is love my daughter with all I have. I have done it everyday for 22 years and I will do it for as long as God allows me to hold my girl in my arms. The day is coming when that will not be possible but I can’t go there. I just can’t.


Until then, LOVE and snuggles are what’s on the daily plan. Thank you for your continued prayers and financial support. There are no words to relay how deeply our family has been touched. No words.


Blessings,