Sorry for the ridiculously long silence treatment. It wasn’t you, it was me…
Life has been…I really don’t know what adjective to use. Interesting? Challenging? Overwhelming? That last one probably comes closest to be honest. What a wild ride we’ve been on. I can’t even imagine trying to fill you in on the trials and challenges we’ve had from the last post to now. Thankfully, we have endured and remain encouraged from the family, friends and community reaching out to us during this season of our journey. From ‘adopted’ family arriving with a car full of groceries for us to cook our first Thanksgiving meal in our new home… to family & practically strangers sending financial help. It’s hard to be in this place. Being humble when you’re down is tough. But we are without words grateful for the small but mighty tribe who has stood with umbrellas ready to help us weather every storm.
Today we received a letter stating that our home owners insurance will be cancelled if we are unable to repair several things, the biggest being our roof, by December 22. That, unfortunately, would end in us losing our sweet farm. I’ve stepped up my praying game and keep unpacking boxes in hopes of finding a few treasures forgotten to sell to help pay for the roof. The estimates we’ve received so far are between $6800-$7200. Our underwriter required our credit lines be closed to get our home loan. Having gone through a majority of our savings with me not working…we’re beginning to run short on plan B’s…outside of a good old fashion Christmas Miracle. If anyone has ideas (or miracles), we’re all ears! We are working with an attorney to set up a Medical Trust account for those wanting to help with medical and related expenses, but have created a place here until that is ready after going through legal review and set up. If you click on the ‘Raise the Roof’ tab, there is a place to donate. I’m working on a page with items for purchase as well…hopefully up tomorrow!
I’d love to say that we’ve been pushing through all of this with positivity and joy…but that’s not always the case. We’ve been stressed. B’s been hiving. I’ve been flaring. Our littles are both sick. B and I have been doing our best to stay positive, but we are weary. The stress of the impending required roof, the aching backs & joints from the concrete floors, the constant shelves & belongings crashing to the ground from not having been installed with anchors, the ‘no water’ scare (THANK YOU to my recently self-adopted dad, friend & former owner’s brother George for getting our well running again!)…it’s been a lot. My sweet Momma is here for the week to help get errands done and the farm as cozy as we can make it this week. Friday I go for my Lumbar Puncture (spinal tap), with my punk immune system & difficulty healing…I’ll be on bed rest for a good bit following. Serious silver lining- we will be able to begin a treatment plan with our ahhhhhhhhmazing doc and hopefully get relief from some symptoms now that I am here on the farm to heal and re cooperate.
I had started a post about an average (physical) day in the secret life of this spoonie. I’ll post it soon, I promise. It got a little depressing, but I’ll wrap it up here soon…maybe while I’m on bed rest (I don’t make a very good patient). I want to send big love and thank yous so a bunch of our incredible tribe (& I know I’ll still miss some…I blame the lesions 🙂 )… Mom- what would we do without you?! And the fuzzy robe w/antlers & ears…<3 Mom & Dad- Thank you so much for your help & encouragement from across the country! To our self-adopted sisters & family- you all have the biggest hearts of anyone I know. I want to be like all of you, thank you for welcoming us into your family & loving us even at our worst. ❤ No words- so much love! Auntie K- for being right there with umbrellas, even when it’s raining in your world. Your heart is so big and we are so grateful for your love, support, encouragement & for being there in times we felt forgotten. My sweet B- thank you for doing life with me…and for being willing to do hard things to be the best us we can be. ❤ I love you! Friends who have reached out bc of my silence, momma’s intuition or because you were concerned- thank you. Those words of encouragement and love nourish our hearts and lift our spirits. And a quick shout out to the amazing A/C company who helped my teacher so many years ago. They are not only coming out just to be sure our system here is up to par- but one of the owners has been an incredible encourager to me. Our son asked me a few weeks ago, ‘Mom- what are your favorite things or side effects from your disease?’. So 1- High fiving myself there for a second…we’ve raised this amazing young man to find the best in everything in life and I just love his heart. 2- At the time his question really caught me off guard. I told him I wasn’t sure that there were any and went about whatever I was doing. The question stayed with me. The next day I went to him and apologized for lying. He looked up surprised (Mom doesn’t lie..and even if she tried, she stinks at it). I told him that I had answered his question wrong- that the best part of my disease is people and clarity. It has brought some incredible strangers who have become friends and took incredible friends and made them family. It brought clarity in so many aspects and relationships in life. The value of each day, of health, of people. It also brings into focus who your tribe are. I love his question, I love his heart, and I love that he reminded me to look at the bright side- because there always is one.
Well, it’s closing in on 2am…while I don’t think the burning in my foot is going away anytime soon- I’m hoping the fatigue will outweigh the painsomnia and allow me a few hours of good sleep to get lots done with Mom here (not driving much anymore these days) and before the upcoming bed rest. Sleep sweet & we’ll catch up again soon.
Your tired & overwhelmed Gracie Kelly