There's always something my mothering heart longs to write about, because writing has always been a special kind of joy, a therapy after long days of diaper changes and dish duty.
But, over the past couple of years, as the length of time between posts has widened from a few days, to a few weeks, to now a few months, I am accepting that the emptiness of this little virtual space may become something permanent, as the order of priority and charity in my heart for our family has far exceeded anything I've ever been called to in the past.
Many of you have been asking about Steve and his current situation concerning his health. So, while the baby naps, I will attempt to piece together a somewhat coherent explanation of the latest happenings with him.
Three years ago, Steve was diagnosed with Lyme disease. Early on, many of his symptoms pointed to a possibility of ALS and MS, but thankfully we were able to rule out those diseases as possible diagnoses. Since I have already written about Steve's journey with Lyme and trichothecene infections up to this point (which you can read about here, here, here, and here if you are so inclined) I will not go into more detail, but will try to catch you up on where he is now.
Since his diagnosis, he has seen a number of doctors of different specialties who have attempted to rid his body of the Lyme bacteria (specifically borrelia burgdorferi and babesia) as well as the toxins from mold (trichothecenes) which have infected his body through his work with hay and wheat straw as well as from our home, which we discovered a year ago contained mold in a small area in our basement, but has since been remediated.
The infections and toxins in his body have compromised his immune and endocrine systems, which has made many of his symptoms worsen. The specialists he has seen in hopes of building those symptoms back up have had little or no success with their prescribed treatments.
A year ago we heard about a clinic in Florida that specializes in treating Lyme disease, toxicity, and really every kind of illness imaginable. At that time we seriously considered sending Steve south, but since the clinic would require a relocation for an undetermined amount of time, we decided to post pone it as an option because we were expecting our seventh child, and we didn't feel that it was a prudent option due to distance, separation from family and finances.
Instead we chose to exhaust all medical resources within close proximity, including the Hansa Center, which proved to be of minimal benefit to Steve. After our son, Blaise, was born last May, Steve's symptoms, most of which are neurological in nature (severe headaches, pain behind the eyes, electrical frequencies in the brain at night which make it impossible to sleep) but also include muscle twitching, exhaustion, memory loss and an inability to concentrate, focus, or articulate his thoughts, began to worsen.
Papa snuggling with Blaise just days before his departure.
Like most Lyme suffers, Steve looks pretty normal, and he has learned to cope with his symptoms so well, that people rarely realize just how sick he is. When I visit with others who are in his same shoes, they also find that it's just easier to put on a smile and trudge through the day than to try to explain to others how debilitating the infection really is.
In early November I decided to pray a novena to Our Lady Undoer of Knots. I have sincere trust in her great desire to carry our deepest, dearest petitions to her Son. On the final day of the novena, Steve's symptoms were the worst I had ever seen. I can't describe how painful it is to see him suffer so much. That night, I left for a couple of hours to attend a party, and when I came back we spent a long time talking about a webinar that he had watched which was presented by the head doctor of the Sponougle Wellness center, the clinic in Florida he had considered attending a year ago. The webinar just happened to be focused on Steve's very symptoms, specifically the ones affecting his brain.
At the end of our conversation, we both knew it was time for us to take a leap of faith and send Steve to Florida for treatment. Thankfully, the clinic was able to accept him as a patient, but we didn't anticipate that it would all happen so soon - he would have to leave before Christmas.
On December 4th, Steve and I flew to Florida and immediately jumped in to meetings with doctors, nurses, and other staff at the clinic. We also set up an apartment close to the clinic where he'll be staying for the duration of his treatments.
After over 40 blood tests, several UA's and a Pet Scan were reviewed, the doctors were able to pinpoint the causes of Steve's symptoms and put together a comprehensive treatment plan to heal his body of Lyme disease, trichothecenes, petrochemicals (from years of farm and mechanic work), blood parasites (which are carried by mosquitoes, ticks, and flies - more on that later), and a low functioning immune and endocrine system.
I returned home from Florida on December 8th, the feast of the Immaculate Conception. When my flight landed in Kansas City, I received a text of this image from Steve with the message attached:
Stopped at a church on the way home from the airport to attend holy mass this morning.
When I walked in, this image of Our Lady Undoer of Knots was the first thing I saw.
There's so much more to tell. I will try to write more in the coming days about Steve's treatment and also our family's trip to visit him in Florida over the Christmas holiday.
With all my heart I thank you for every single one of your prayers and sacrifices offered up for Steve, and for taking the time to reach out to us through texts, phone calls, and Facebook messages. Your love and friendship is sustaining us!