Facing Limitations

I am sorry for leaving the ending of my 40 Day Fast dangling in the air with no conclusion. I finished the last couple days by breaking my water fast. I did one major thing wrong- I introduced things back into my diet way too fast. I was plagued with indigestion and nausea as I overwhelmed my poor digestive system. I have to confess though- I really miss the light healthy feeling I had while on a liquid diet. Beyond my digestive system feeling lighter, I was feeling better all around. Some of these symptoms have stayed away and others have come back as I’ve added more foods back into my diet. But even harder than keeping a healthy diet has been keeping up with proper self-care, especially with the holidays.

My family was all in town to give my mom the best Christmas gift we could all think of- all of her children and grandchildren in one place! Our gathering was a welding of joy and grief as we realized this is likely her last Christmas. I have been spending countless hours trying to get her moved to a better nursing facility without a lot of success. When I was a child, my mother made me promise I wouldn’t put her into a nursing home. “Promise me you will take care of me when I get old. Promise me you won’t just ship me off to a nursing home.” It was ingrained in my brain and imprinted on my heart. I tried. Earlier this year I had her in my home but it was just too much. I couldn’t stay awake 24 hours a day and she needed more care than I could offer. The guilt of placing her in a home has been haunting me ever since. I have found myself trying to figure out a way to get home health aids to help me be able to bring her back home. But the harsh reality I have been avoiding is the frailty of my own health. Being the full time caregiver of a parent is hard enough for someone who has their health, but I would be starting out “behind” and at a definite disadvantage. What would I do if I came down with a 2 day migraine? What would I do on the days my Ankylosing Spondylitis is flaring and pain radiates from my spine? How will I change her and help her in and out of her wheelchair? What will I do when I have to take my children for their Lyme treatments 3 hours away? Who will care for her while we’re gone all day? I can’t simply stop treatments. What about the days where simply showering and making breakfast take every last ounce of energy I have? How will I find the energy to make and spoon feed her 3 meals a day, and clean her up? And what about my children? My illness already robs them of so much, but how much more so, if any energy I have goes to caring for the basic needs of my mom day in and day out?

The battle in my mind went back and forth like an intense chess match, until I finally succumbed to God’s checkmate on my heart. The little girl inside of me wanted to keep her promise, but my heart knew that it was not the right choice for myself or my family… nor for my mother. I had to admit that physically my body simply cannot handle it. I cannot give her the care she needs in my home despite my desire to do so. I had to face that ignoring my physical needs to push myself was not going to prove anything other than my spirit’s need to let go of unearned guilt. I sat down this week and through tears released the little girl in me from the promise she made, so many times, so many years ago. That little girl had no idea she would grow up to have a broken sick body. She had no idea she would have a sick husband who daily battles debilitating pain and needs extra help. That little girl had no idea that she would have four children with serious health issues that would need special attention and care to get better. She had no idea, but I am not a little girl anymore. The “adult me” must face my limitations, and choose well my priorities, for the benefit of all those entrusted to my care. And in granting myself permission to let go of the guilt, I found I was ready to take care of myself again, so I can keep caring for all those I love so much. As I look to the New Year my prayer is that I will live each day with intention, in a way that protects and promotes the things that matter most!

 No, dear brothers and sisters, I have not achieved it, but I focus on this one thing: Forgetting the past and looking forward to what lies ahead, I press on to reach the end of the race and receive the heavenly prize for which God, through Christ Jesus, is calling us.” Philippians 3:13-14 (NLT)

Life’s NOT Fair!

Yesterday was our semi-weekly visit over to the West Coast of Florida for our in-office Lyme treatments. Our normal 3 hour drive ended up taking closer to 4 hours, between dealing with traffic and frequent potty stops. It’s quite the trek ,but I really enjoy the time with my kids in the car. We love singing through our favorite soundtracks and the  time in the car provides opportunity for invaluable conversations. The drive home almost always includes a shared appraisal of the gorgeous colors painted across the sky as the sun sets. In a world that is constantly bombarding us with more and more to do, and less time to simply “be” together, these trips are becoming treasured moments with my kiddos. But not everything about these trips is fun and games…

When we got to the medical center yesterday my 9 year old started to panic about getting her IV placed for her UBI (Ultraviolet Blood Irradiation) treatment. She has Asperger’s which affects her ability to regulate emotions and any change in routine greatly increases her anxiety. She has always been the second one in our family to get her IV placed, but yesterday they wanted to do her IV first. This just about caused her to have a complete melt down. I went ahead and had them place my IV first, and then sat her on my lap to calm her down. “Why do I even have to get an IV? Why don’t the other girls have to get UBI? It isn’t fair….” and on she went. I was calmly reminding her that she needs it to fight her Lyme, but she just continued to work herself up with all the ways it was so unfair. It was at this point that I was likely deemed a very uncaring mom by everyone else in the IV room. (I honestly didn’t look around for their reactions because I wasn’t parenting for their approval.) I firmly told her to look at me. When her eyes finally locked into mine I told her directly-

“You are right, it’s NOT fair. Life is NOT fair. It will NEVER be fair! But that is why we have to look for the good things, the positives that we have.”

It may seem harsh to tell a nine year old that life will ALWAYS be unfair. It certainly goes against our current culture that wants to make everyone a winner and not cause discomfort or distress for anyone. But it won’t help my child to teach her anything but the truth. LIFE IS NOT FAIR! But that doesn’t mean that life is not good or beautiful. If we live life always looking for it to be fair, we will always be disappointed. But if we understand that life can be both unfair and blessed, we can focus our attention on looking for the blessings. She calmed down as we discussed how she would likely get over her respiratory infection faster because of the UBI. And how blessed we were that God answered our prayers by allowing Mr. Frank to be working. Mr. Frank is phenomenal at placing IVs! I helped support her arm, and counted as she attempted to deep breathe (she needs more work at this), and within seconds her IV was in and her treatment was started. My little guy was a trooper when it came time to start his IV, and within minutes they were both quietly playing their Kindles while their UBI treatments were underway.  

They hooked up my IV with a Meyer’s Cocktail followed by a hydrogen peroxide treatment. I usually only do IV treatments about once a month, because our first priority is making sure the kid’s treatments are financially covered. Last month we got word that each of our children received a grant from the Lyme Light Foundation, to help cover their supplements and treatments for the next few months. This is a HUGE help! In September we also had an anonymous giver offer to do a matching gift up to $3700 for all funds raised during the month. Thanks to SO many generous donations we raised the full matching gift amount! I can’t even begin to tell you how overwhelmed with gratitude both my husband and I were at the loving generosity showered on our family. We were not only able to get the sauna we had been needing for over two years, but now I am able to get treatments twice a month as well. The cost of supplements and medications for a family of 6 with Lyme is crazy high, and that is before we add in any in-office treatments, lab work or extra doctor appointments. It would be so easy to look at the financial burden of treating a family with Lyme and think about how unfair it is. It’s unfair that all four of my children contracted congenital Lyme! But I can’t even type those words without reading the “blessings between the lines”- I have four children! I am so beyond blessed to be their mommy! So many women with chronic Lyme struggle with infertility and multiple miscarriages. We miraculously have had 5 children, and were allowed to keep and raise 4 here on earth! And we have certainly seen God show up in BIG ways to provide through the love and generosity of so many amazing people. My blessings far surpass the inequitable circumstances in my life!!!

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.” 

“And my God will meet all your needs according to the riches of his glory in Christ Jesus.” Philippians 4:8 & 19 (NIV)

Resources: