WHEN ALL HELL BREAKS LOOSE.............

It's only with a very guarded and heavy heart that I publicly share the following information.  After a long year of denial, concealing, and waiting, we feel it's time to share one of the most difficult things I may ever type up on my laptop.

A little over a year and half ago my husband and I noticed our oldest son having some similar dysautonomia symptoms.  At the first sign, we took him to a doctor who basically told us to keep an eye on it, but it's probably nothing.  A year ago, we knew it WAS something.........  Our oldest has always been our 'healthiest' child by far.  Besides some dizziness he's had from early on, I can count on one hand the number of times he's even ever been sick.  So, it was alarming and unusual to see any changes in him at all.

For his privacy (which he gave me permission to share his illness), I will not divulge all of his symptoms, changes, and pain.  I will leave it very basic.  We have known for about a year now that he was beginning to get sick.  We have been monitoring him quite closely, yet completely in denial that this could be happening after all we've been through as a family.  What are the chances?  We were told this is not hereditary!  But month after month, we saw that our son was in the beginning of true dysautonomia.

With a very heavy heart, our son was diagnosed by my cardiologist in Toledo as having POTS-Postural Orthostatic Tachycardia Syndrome in March.  This is the original diagnosis I received years ago before mine developed into a more serious form dysautonomia.  My son's form also appears to be a direct result of severe venus pooling.  (The type that is almost impossible to treat)

Bottom line:  We don't know how or why he got this.  We don't know the link between his illness and mine.  We do NOT know if his will spiral or stay stagnant or if there will be any long term repercussions.  The doctor is concerned yet baffled.  Doctors are beginning to second guess the whole etiology of my illness, as well.  We are told this is 1 in a million cases....doesn't get much stranger than this!

Our case was sent to Mayo Clinic in MN and in less than 2 hours we were told they want to see us both as soon as possible. (I was diagnosed at Mayo in early 2012)   My son and I will be going to Mayo Clinic for 7-10 days the second school lets out to undergo new rounds of grueling testing, meet with multiple teams of doctors in multiple specialties, and begin the journey to find the missing link between our illness'.

The news to our family has been more than devastating.  David and I have had a PIT in our stomachs for months now.  We chose to cautiously keep this quiet until we had all the information and to respect the privacy of our teenage son.  We have been hit with yet another wrecking ball.  As I've said before......never, ever assume:  "It can't get any worse."  Because the second you think it won't get worse, ALL HELL CAN BREAK LOOSE!

However, if we look for that silver lining....which is always there.......this does give us some more hope that no stone will be left unturned now that the doctors will begin to second guess my prognosis, diagnosis, and etiology.   Since my son is still in the beginning stages, they may be able to tie the links between the beginning and the more advanced.  We are cautiously hopeful that new information will come to light.  We are also happy to have a diagnosis quickly for our son so that we know how to keep him mobile for much longer than I was.

We ask for your thoughts and prayers for our family's strength, joy, and endurance.  You'd be very surprised to see how calm and collected our son has been.  He's taking it in stride even with some new limitations he's had to endure.  I'm very proud of who he is as a young man, and especially proud at how well he's taken the news.  He's an unusually private person, but he did allow me to share his personal information and ask for prayer during the next few months.  He only ask that no one talk with him about it, or ask him any questions.  We are all respecting his rights and privacy.

I've promised not to make this a religious blog or offend any readers, but I cannot help but to share this one thing as I know I would be completely lost at this point:  It is ONLY the joy of my Lord that has given me the strength to endure.  While my body is weak, my heart has not grown weary because the strength doesn't and hasn't ever come from myself but from Him who my strength and help comes from daily!