climbing that damn mountain…

I am tired today. 


Heck let’s get real, I am tired everyday. 


Sleep comes in fits and starts. Between the stress and sorrow of Miss Courtney’s situation to the onset of menopause and the constant barrage of hot flashes, I only get about 3-4 hours of sleep in any one stretch and that’s on a good night. 


yeah…tired…


Jerry made the call today and scheduled an appointment at the funeral home for Friday. We will go sit down and walk through all that needs to be done. When he got home earlier this evening I asked him how he was doing with all this. His very honest response “I just called a funeral home for our daughter. Not my best day.”


yeah…tired…


We were love bombed again today and it was so wonderful to be able to check things off the list we made of Miss Courtney’s needs for her final months with us. We are so incredibly grateful for your help and support. This would be so much more difficult without it. SO much more difficult. There is still much to do to prepare it makes me break out into a cold sweat when I start thinking about it all. 


so…very…tired…


This is all so very wrong. As I was opening the boxes this morning and reading your sweet notes, I was struck by the irony of it all. Here I am opening gifts, sent from near and far, for my daughter. Not for her college graduation or her wedding, but because she is dying. For a moment I thought, maybe there were too many clothes. Would she even get to wear them all? 

That was all I needed for the dam to break. It breaks often these days. Kleenex and I are old buddies by now.  


This shouldn’t be happening. We should be at PT, cheering Courtney on to take her first steps. We should be apple picking and making gallons of Courtney’s favorite applesauce. We should be prepping for flannel sheet season and making sure there are plenty of storybooks in the basket from the library for story time. 


Instead, I have a new pill crusher for Miss Court’s twice daily seizure med cocktail that she can no longer swallow by mouth. We have some beautiful pieces for clothing in children’s size 14-16 instead of the women’s size 6-8 which she was wearing one year ago. 


As I fold each piece, given in love, they look so small. Too small. It takes everything in me to be excited about each gift. I don’t want to be excited about why the gifts were given, no matter how grateful I am for the generosity of the giver.


My daughter is slowly slipping away from us. She smiles less and less each day. It’s been several days since I have heard her laugh. The seizures come and take a little more of our Courtney with them when they finally stop. 


just…too…much…sad…


I had the opportunity to speak to another Mama today who lost her special needs child several years ago to a seizure. She shared the ups and the downs that she experienced when one moment her child was here and the next not. She didn’t have to watch her child slip away. He was just gone in a moment. She said she didn’t know which was worse. 


I said they both are equally horrible because the outcome is the same. Our children are gone and we don’t know why God  chose to take them. I am so glad I had that hour with this beautiful Mama to know that one day things will be OK. The hole in your heart never goes away but you learn to live with the pain. 

I realized that in time I will become a member of a very special club. The “My Child Died” club. I don’t want to be a member but then I look up at the Cross and I know there is another member who didn’t want it either but she took each step with her Son toward his impending crucifixion with grace and a steadfast faith that something better was coming. It did not stop her heart from breaking but she walked it anyway out of obedience. 


I am named after the Blessed Mother and her cousin Elizabeth. I have never felt the burden of that name more than I do these days. 


Yes…I am tired.


Yes…I am heartbroken. 


Yes…I would give my own life to make it not so. 


No…I will not give up. I will not stop loving my daughter, even after she has taken her last breath. She is and always will be the very best parts of me, as is her brother. 


I will do my ever loving best to emulate my namesake and climb this mountain with as much strength I can muster. I know the view will be worth it. 


Please God, let it be so…