I have been blessed to overflowing with questions, helpful suggestions, and prayers. Basically I would like to answer the questions about my health and family at once. Let you know where we are right and where we are going. Finally specifically what we need prayers for.
I am on hospice care at home to keep my care more home based rather than running to the ER/hospital every time I have an issue. This has been a great help. Hospice is not giving up.
Take today for instance. I am getting my Hickman central line evaluated. I will have several labs drawn to see if previous critical labs are still in the critical range. These labs under other circumstance would most likely have me sitting in an ER for a further evaluation.
*Please join me in prayer that my body shows it is stable.*
My kids and I have a genetic disease. Our mitochondrial are damaged and cannot replicate correctly or produce the engery needed for each cell of the body. That means cells don’t work well or the cell can die outright. When enough cells die the tissue dies (I have several holes in my brain where clumps of cells died). It can be more subtle than that such as a whole system (GI system) or the lungs begin having problems.
The kids and I share several symptoms pain (migraines, headaches, neuropathy, and swollen joints). GI dysfunction that even with dietary changes requires medications to help stabilize. Weakness and exercise fatigue. That can mean at it’s worst my daughter or I cannot get up. We are too weak to physically move or on the other end of the scale simply walking to the mailbox and back takes a half and hour to recover for my son.
We do use every asset modern medicine has. We have changed our diets radically (gluten free, casein free, soy free, dye free). Textures and certain foods that are too hard to push through the GI are also out. The next step I was thinking about trying are the essential oils so many of my friends rave about. I know that simple aromatherapy has helped with reducing headaches. That would be a great start.
Meanwhile like our normal routine we are homeschooling. I have set up all the kids with A+ Interactive Math online accounts. That is a huge weight off my shoulders! I set my early waker-upper to start her algebra first thing. She is done before I can finish my morning meds.
All the other things of homeschooling, chores, meal prep, and fun will happen like normal. We have a solid routine that works great for us.
I keep going. Yes, I am tired and get sick. There are days I can’t sit up in my power chair at the table. On those days we move learning and life and center it around my hospital bed or the couch if I can handle that.
Our prayer is to bring daddy home within the next few months. He will definitely be home by next conventions season. Given the convention routes and time it will take, God is being rather clear Daddy will be home. Or rather Daddy will be on the road with us.
*Please join us in prayer that the VA would relent and give me my full disability and assistance pay. I will be appealing if I don’t hear anything from them by this time next week. I will be giving out my congressman’s phone number and any pertaint government official that could help as well at that time. To help them understand my need is immediate and obvious.*
In fact Chris already has 2 workshops ready to go and we are working on a couple workshops together. One workshop of Chris’ that I am super excited about is- How to stay safe while online schooling. Chris is excellent at walking you through the basics of computer and online security all the way to more advanced ways to keep your home safe and monitored (as in porn/unsavory material free).
I haven’t given up. I feel God lead to keep going strong. The kids and I are planning to buy spring bulbs soon and plant them out front.
Creating Bubbles of Hope. Little moments in time that I have with my family and others that show in a tangible way that life continues. I will keep working hard like the apostle Paul each and every day until I am called home.
*Please join us in prayer that the KIDS and I are stable health wise!*
This one might sound crazy but I am planning to take the family the outbanks next fall. Yeap. The 2:1 convention next fall–that is a long way off but worth the hope!
Now if we just want to forget time and allow hope to build and overflow here are some other things I have been thinking about.
My children’s Make a Wish trips. My teen daughter asked for a specific wish trip and was turned down because of logistics. Hubby and I are dreaming about making it as close as possible to her original dream on our own. (more on that later.) My two littlest daughters also qualified for a wish. Only one is desiring to do anything about it right now she wants to go to Disney. ahhh a wish trip! I would love to be with her to see the joy and excitement of a wish trip for my Rosie.
Now for the biggest craziest hope bubble… we are looking into a building a home. I know I may not see the end result but I want to know that my family is safely in a home that can handle the mobility/health issues we have. The kids will continue down the same path I took. Sadly I gave them the same disease and mitochondrial dysfunction that I have.
Oh how I wish that were not true…
Right now I have one daughter than needs a power wheelchair and the 2 littlest need to be evaluated by a mobility dr on what he would recommend a modified manual or power chairs for them too. This is a two story house built on a steep hillside (of course, we live in West Virginia!). Anyway the kids can’t go to our backyard and play. This home is great it’s just not for us. Not with our health issues and the reality of progression over the years causing even more. My heart will be more at peace knowing that Chris and the kids have a safer home.
My personal future for writing and speaking… I continue. In some ways I am expanding that part of me. Only because Chris and I both prayed long and hard about this and both were led to the conclusion that our trials in life are meant to help others. He gave both Chris and I training in speaking and writing when we were young. Both Chris and I feel passionate about helping families with special needs make it and make it successfully!
My doctor and hospice team are encouraging me to keep speaking and writing. I have been encouraged to speak at WVU medical school again. I did that several years ago and would happily do so once again to spread awareness of mitochondrial disease. The Lord is definitely opening me to speak to more people. To encourage others that there is so much more to life than the simple movements of everyday.
And yes, if I can get up and do something productive you can too! God created us to make order and be productive. I want to show you that you can be successful even when chronically ill, dealing with a child that has autism and needs care 24/7, or you are so broke even the church mice packed up and moved out.
YOU CAN MAKE SOMETHING WONDERFUL OUT OF YOUR LIFE! Something that shines the glory of the Lord!
Watch out friends Chris and I are a powerful couple together. Moving mountains with the strength the Lord so graciously gives us. Until the Lord tells us otherwise we will keep doing His work, helping others and traveling to speaking engagements to share our story.
Thank you all for your support and prayers! The entire family greatly appreciates them! God bless!