One Percent Family

This blog post was mostly prepared many months ago when we first discovered the mold problems in our home.  I simply never found the time to complete it and do the actual changes to the blog.  

When Rob and I discussed whether to share our current predicament on Rebecca’s blog, I mentioned that if I did so I would need to change the blog name as it would no longer be just about Rebecca.  I mused about what to rename the blog and Rob didn’t miss a beat, declaring we should call it “One Percent”.  I looked at him rather puzzled, but then it dawned on me what he was getting at.  We always fall in the odd category, the category that doesn’t follow the medical norm … the one percent category.  So there you have it, we have renamed the blog One Percent Family.

Sometimes it’s a good thing to be in the one percent category, and then there are the times when you just get fed up with being in that one percent category.  Rob should have known to run the other way when we first met.  At that time I was struggling with gut issues, which years later we would realize was likely Fructose Malabsorption (FM).  In 2008 Rebecca was the first in our family to be diagnosed with FM, and slowly all but Rob followed in that diagnosis.  At that time it was something we stumbled across as our pediatrician decided to test Rebecca for this “new” thing that they were learning about.  In 2008 FM had only just been discovered some 5 years before hand and so it was not well known and the literature was still up and coming.  Over the past 10 years researchers have learned a lot more about what is tolerated and what is not and we as family have learned how each one of us is individual in this diagnosis, with each one of us handling different amounts of fructose or fructans.  Technically I can’t really put FM in the one percent category as they actually believe that a third of the population suffers from this due to the worlds current eating habits and the food industries love of putting sugar in everything.  FM is much like lactose intolerance - it is an intolerance, not an allergy, and everyone’s tolerance level is different.

Shortly after we were married I finally decided to try find better answers to the headaches I had been suffering from since I was about 12 years old.  In those days (man I sound old) the internet in the home was just a new thing, and while information was becoming available on there it was not as abundant as it is now, but with a good chiropractor we were able to realize that my jaw was my biggest problem.  This began some 5 years of intense ortho work to try and fix my TMJ (temporal mandibular joint) disorder … now referred to as TMD in the medical world.  I had this work done in an office that dealt specifically with TMD and was somewhat of a teaching office, so I was often the patient that they loved to show their “students” and the dentist always referred to me as his “worst patient” … this was not in reference to my behaviour ;) but apparently the state of my jaw and the frustration they were having in trying to find the ideal solution for my jaw.  In the end they ended up leaving me with two splints – a night splint and a day splint.  I have worn these 24/7 for the past 15 years and as my current splint falls apart I dread the process of trying to find someone who will tackle my case again to provide new jaw support.

Our third child, Justin, was born premature after I suffered from a severe case of HELLP Syndrome that sent doctors from two hospitals scrambling.  The Lord spared my life at that time, but He had other plans for Justin who went home to be with our Father after three short weeks on this earth.  When pregnant with our fourth child I really wanted to have a natural birth but in conversation with the obstetrician she advised that there was a less than 1% chance of having HELLP Syndrome to the extent I did and while the risks of problems from VBAC were low, she was afraid to try it for me because of my pregnancy history ... she understood that things don’t go normal for me and it wasn’t worth the risk.

Our fourth child, James, was considered healthy when born, but we soon learned that was far from the case.  After a difficult first year he was diagnosed at 18 months with Lysinuric Protein Intolerance (LPI), a rare genetic disorder with only 100 cases in the world at that time, of those cases over 50% were of Finnish descent, but we do not have Finnish ancestry, which the doctors always found interesting.  Further unexplained issues ailed James and it was another year before they diagnosed him with Pulmonary Alveolar Proteinosis (PAP) secondary to LPI, which only had approximately 25 cases worldwide.  Our little boy definitely fell in the less than 1% category.  The doctors tried hard to learn, understand and treat James illness, but it was not the Lord’s will for him to stay here with us.  At 35 months old James went to join his brother Justin to be with our Heavenly Father.

After Marietta had her skiing accident we turned down the option to go to the hospital and figured it would all be okay with a few days rest … 90% of the cases are better in 92 days.  It is 22 months later and she is still not better … this time we fall into the 10% category.

There’s enough information on the blog about Mold Illness so I’ll just leave my percentages on that … but suffice to say that while about a quarter of the population is genetically susceptible to Mold Illness, of those people many do not end up being exposed severely enough to become sick, or their symptoms never become severe enough for them to realize that mold is causing their struggles. 

With regards to Lyme Disease … the rate of Lyme Disease continues to increase, so we are likely not in the 1% for this, but it’s such a difficult disease that it pretty much feels that way.

Over the past years we have been very thankful for our family doctor and pediatrician who have understood that our kids simply do not follow the “textbook norm” and that you need to think outside the box when dealing with them.  It seems that things that heal easy for other people always seem to escalate into bigger things for us.  It’s a discouraging feeling often as I want to ignore the things that other families so easily get away with, but it usually backfires.  I struggle with trying hard not to “make my kids sick” by making a big deal out of things and not neglecting them because their little things seem to turn into a big deal.  But through all these ups and downs we come through each time knowing that the Lord has made us each and that we are all “wonderfully made”.  This is not to say that there are not rough times along the way, but when discouraged or down trodden we only have to look heavenward to find renewed strength and be reminded of the many blessing that surround us each day again.

“I praise you, for I am fearfully and wonderfully made.  Wonderful are your works; my soul knows it very well”  Psalm 139:14