without fear…

I read these words early this morning and I felt like Our Lady was whispering into my ear to just chill out and stay focused on the task at hand. These coming weeks/months will hold many challenges for me and most especially for Courtney, but that doesn’t mean we cannot make it through them with our sanity intact. At least i hope we can. 


I got to spend today with my Mom here helping me with Courtney. She is such a gift to me, I just cannot ever say enough wonderful things about my Mama. She would do this for any of us who needed her and right now it’s my turn. I cannot imagine walking through this without her love and encouragement but most especially her prayers. I am so blessed. Courtney doubly so. 


Today we had to give Court a serious dose, or three, of Miralax in order to clear the pipes as we say. She had not had a bowel movement in almost seven days. There was no blockage thank goodness but it’s not good at all that she was struggling with this. So we started mid-morning and by early evening we had excavated quite a bit. It’s not pretty at all but boy is it necessary to keep things in balance. After that, I climbed into a hot tub with bubbles holding my sweet girl and we just hung out for a bit to allow her to relax a little so we could help her to poop. The warm water did it’s job and we were successful. 


After that, I gave her a massage for about 30 minutes then bundled her up in my arms where she fell asleep after giving me my first smile in 48 hours. What a gift to me! I needed that smile so much. My Mom was with me, as was Jerry, the whole time fetching and helping as I needed. It was a group effort for sure. I am spoiled that I have a “group” I can count on to help with these intimate moments while protecting Miss Courtney’s dignity. 


As I put her in bed tonight, I realized that this child knows nothing but love. There was no fear in her eyes or worry that something bad is happening. She wasn’t always comfortable but in the end she trusted us to help make things better. That is such a sacred trust. When you cannot express yourself to tells someone that your tummy is hurting or they need help. She completely relies on her Dad and I to know what to do and when. 


No pressure Mama. No pressure. Ha!!


Her low grade fever broke tonight as well and I think it was because we were able to help get her emptied out. That will continue tomorrow as well. Yippee skippee for me. Thank goodness for Yankee Candles that is all I will say about that. 


I wanted to express our thanks and deep gratitude to all of you here, on the gram and FB, that prayed for me (and Courtney) last night and today. Know that I do not take those prayers for granted, Not at all. They are a gift I am so humbled to receive. 


So.very.humbled. 


Jerry and I were talking earlier tonight and he asked how I wanted to handle Thanksgiving. Miss Courtney cannot go anywhere right now, to many invariables and opportunities for disaster as far as catching anything. Plus she is too week to sit for very long so transporting her in her wheelchair is a problem. So we asked my Mom to come down and I will cook. Sort of. 


I work on about three to four hours of sleep a night these days due to Courtney’s seizures, so a big to-do is so not going to happen as it has in the past. When I say cook, let me explain. This year I just don’t have it in me. So, I “ordered” dinner from Whole Foods. We will use the three gift certificates we received during the love bomb (thank you, thank you, thank you) which will cover the cost of the turkey. I ordered just the turkey and three sides to keep the cost way down. Mom will bring the wine and the pie. It will be simple but delish and all I have to do is put the turkey in the oven and heat the sides. No chopping or stuffing or anything. We are even using paper plates. 


We have each other and so much to be grateful for. Our Courtney is still with us. Nothing can take away our joy at that fact, no matter how challenging things get. 


Thank you Lord for that gift. Jerry is still seeking a permanent position and will have his last day on Dec. 1 if something doesn’t happen before then. We are both feeling the tremendous pressure of counting our pennies and being extremely careful with our limited resources. The thought of Jerry being without work (therefore no medical insurance) as we continue this process with Courtney makes me want to be physically ill, but I know that won’t help anyone. So we press on. 


During the love bombs, Jerry and I were gifted, as well as our daughter. I have used a the two gift certificates to purchase a few new pieces of clothing for winter for myself since I have gained a bit of weight and things were not fitting. Dieting right now is so not happening. I also used the LLBean GC to purchase Miss Courtney a new soft down blanket that I know we will use when she has gone to God. She has plenty of warm pj’s, sweaters, etc. to get through the coming months in comfort. Thank you once more for your generous gifts. So grateful. 


I cannot wrap my head around Christmas yet. I cannot. Miss Courtney loves the lights on the tree so I know we will have a very bright tree this year if she is still with us. I need to purchase some new colored lights for the tree, but I will wait for the sales next week to make the most of our limited budget. Other than that all I could think of is “What does Santa bring to someone who is dying?” When you know that answer let me know. Because I’ve got nothing.


That’s Tuesday…now to try and sleep before Miss Courtney starts her rock ‘n roll party around 3 a.m. 


Blessings and Love my friends from our house to yours and thank you for loving/praying us through this.