Mother's musing about Lyme

It's a strange world to enter...chronically ill. It's one thing when it's you. It's an entirely different thing when it's your children. There are many different kinds of chronic diseases with a wide range of effects. For us? It's Lyme disease. 

We entered this world in 2009 and it's been a long long road. Sometimes it has seemed like those dreams where you keep running down a hallway and as you go faster the hallway gets longer. And it's not only the body that suffers...it's every aspect of normalcy that ends. School? Home? Finances? Schedule? Activities?  Future? Even the fun things like Disneyland are impacted. 

I read a blog recently about Lyme disease and it stated it perfectly.   It basically said As you watch others living a normal life, riding a bike down the street, for you? just standing up for more than 5 minutes can be a daunting task. 

As a mom of two children with Lyme Disease, I am constantly fighting the battle of the "shoulds" that are imposed upon us by society and honestly a desire for pro ductive living verses the reality of the capabilities of their minds and physical stamina. 

My daughter has been fighting her Lyme battle since the beginning and she is beginning to win. However, recovery is a roller coaster and even when the pain is eased and the brainfog is at bay she is still having difficulty standing for any sustained period of time. 

My son however, was just recently diagnosed and we have started treatments and the herxing begins. (Herxing is the die off effect from the Lyme bacteria. When they start dying off they release toxins into the bloodstream and the symptoms get worse before they get better.). 

Herxing with McKaeln, my 17 year old daughter, is like a really bad flu...you're achy and head is so foggy you can't think straight, some of the depression and anxiety increase but it's mostly the achy yucky lethargic feelings. 

With my son?  Kaden age 12, It's entirely different.  Probably because he has a brain mass and his seizures are more abnormal than hers. And his pain is a chronic headache.  But his Herxing is including panic attacks and after an attack the pain increases drastically.  

I asked one of the medical professionals we are working with how much do I push?  And her answer validated my feelings. "Not at all right now". Ah the peace that comes from validation. 

   A very wise doctor told me at the beginning of this journey that my job as a mother was to trust my instincts. They are never wrong.  It's so hard to stay confident with that when others all around you from doctors to family and friends contradict those instincts. They do it out of love and concern and for that I am so grateful. But the truth is my instincts are a gift from God. And HE knows me and my children and what is best and what they need to heal. And it's up to me to be lean on Him and trust Him. And I have found when I do doors open and prayers are answered. When I don't? Confusion and anxiety envelope my soul. That is no good for I need a clear mind and peace to lead and heal these amazing children who have been entrusted to my care. I'm sorry we don't look like we should to the world. But our love and faith is growing stronger with each other and that is most important. It's the only way to keep hope alive.