living…wiws ~ Vol. 65…

We haven’t talked fashion in awhile so let’s start there. 

Fall has finally arrived here in Northern VA and I think it’s here to stay. I pray it is so. Sunday two of my friends whisked me away to a local historical sight for a belated birthday tea. It was a lovely break from care taking, one I didn’t think I needed but realized halfway through how untrue that was. There was a beautiful garden to walk through and the weather was cool enough to bring out the boots. 

My dress was a bit on the short side but I think I styled it fairly well. It’s defiantly a bright color and I was happy to tone it down a bit with the coppery brownish sweater (both from Old Navy) and brown boots (DSW). I also wore bronze tone costume jewelry (Lane Bryant). I think the next time I wear it I might go the leggings or tights route and maybe bring in a royal blue sweater. Lots of possibilities for sure. 

Now for tea and other things…


The tea was hot and the little bites were quite scrumptious. Aren’t tea sandwiches the best? Little bites of delight featuring cucumber and cream cheese, pimento cheese, carrots and ginger, salmon mousse and a lovely little open faced tuna bite. The scones were light and fluffy, the clotted cream and jam totally over the top. The English really know how to do it well. 

After the tea I came home and held my girl for an hour or so and then headed to Mass and Youth Ministry. It had been a few weeks since I was with the kids. Jerry and I have been switching off with Courtney home. It was a beautiful Mass and the second reading once again blew me away. A direct bullseye to the heart for this Mama. God’s word is doing that a lot lately. 


It’s a good thing to hear God’s voice in the midst of a struggle. Sometimes I feel very alone in this whole thing. Trying to figure out what is going to happen next with Miss Courtney is exhausting. God is constantly encouraging me to lay it down at the foot of the Cross and leave it there. Sometimes I don’t listen so good. I go back and pick it up again. I know, I know me es muy cray cray. Ah well, still learning. 

I find it hard to leave my Courtney these days. As things change every few days, I draft a new schedule to make sure we stay on top of her care. Today was a very tough one. She went through almost three hours of cluster seizures before her rescue meds finally stopped them. I held her through it and all I could think was how much her little body has been through.


I could count her ribs and there is no padding left on her bum. Her hands are so tiny and her legs so skinny, she doesn’t have much left to fight with. It makes me sad and angry and I struggle with understanding it all. I talk to God, I yell at God, I cry in front of Him and beg for my daughters life. 


I know it is not to be. I have known that for some time. Courtney’s healing will be complete when she runs to Jesus upon her death. Knowing that brings peace one day and frustration that is has to be that way any other day. 

For now it feels rather schizophrenic for me. That’s just how things roll. I try to stay above the cray cray as best I can. After all that’s why God made ice cream. So much cheaper than a shrink. HA!!


Courtney is finally sound asleep as I type this, wrapped in her new snowmen flannel sheets thanks to #TeamCourtney. Everyday, there is some part of our life that is touched by ALL of you out there. Your love and support have made this journey so much easier, if that’s possible. I know that many of you want to help and I do appreciate it. Truly. 


For now, we have a freezer full of delicious food, more coffee than I can drink and more dark chocolate than I could ever eat and stay the same size I am now. We will be taking care of the funeral home bill this week thanks to a loan from some family members. The casket will be ordered as well. Miss Courtney’s final outfit is all put together and ready. Jonathan and Jerry and I all have what we need for that day as well. 


The only things left on our “to do” list are going over the funeral Mass with our Pastor and selecting the music and making the program for the funeral. The final liturgy decisions will be handled by our dear friend Deacon M. I don’t know where we would be without him and his dear wife. We are blessed by there friendship. I go to the florist tomorrow to choose the altar flowers as well as a few special arrangements that family members and a few close friends would like to have done for Courtney’s day. 

So what can you do to help? 


Well, there will be a reception after the funeral Mass and when the time comes (especially for you local folks) I know we will need help with that. I promise to give the names of those you will need to contact to help when the time comes. 


We will need assistance in purchasing her headstone. I don’t have a cost on that yet but will in the coming weeks.


We are still deep in medical debt (from the last seven years) and the bills keep coming from her last three hospital trips. Yippee! You can do that through PayPal, the goFundme account or sending something directly if you so desire. Just email me if you have questions. If you would prefer to remain anonymous I understand. The goFundme allows for that option.  


Other than that, prayers that Jerry is able to find a permanent job in the next three weeks would be awesome. His last day will be Oct. 24, 2014 if he doesn’t get reassigned. PLEASE keep storming those gates for that prayer request. My hubster is just a little stressed over that alone, not to mention all that is happening with Miss Courtney.  


Prayers that whatever time Courtney has left with us is peaceful and pain free would be a blessing to us as well. 


Prayers that Jerry, Jonathan and I handle this Cross with grace and allow the Holy Spirit to work through this situation and prayers that we are open to whatever God needs us to know and do would be wonderful as well. 


That’s where we stand right now. Thank you for being there for us and our girl. You guys are just the best. 


The.absolute.best.