So this is my friend Kim. Hilarious as she describes just one day in the life of "Tyler" and this is the reason we became fast friends. You see, both of us have kids that are complicated, medically. When I hear Kim, I really think life is easy for  me, and vice versa. But, we are great at playing off each other, describing and analyzing our problems to the point of bust a gut laughter. Because when you have kids that have specialist, well, you just have to laugh. And most of all, you have to have friends. Friends that are honest, truth seekers and non-sympathizers. You know what I mean, the ones that don't feel sorry for you and will take a moment, read your mail, and tell you to get on with life. So, that is what Kim and I can do for each other and we are hoping that as we start on this road to blogging that some of you will want to join us. We want only what is best for our kids and sometimes that means a myriad of things.  So sit back and laugh, cry, empathize and even yell at times as we journey together. Ask questions, throw out idea's...be a part of this journey we call "real" life...kids with special needs, chronic illness, and our families and friends along the way. Pulling, dragging, shaping and loving each and every day we have....


Posted Mar 1, 2010 7:47pm


Have you ever seen the movie "Vacation?" Do you remember the part when Clark Griswald and his family arrive at the amusement park after days and days of a crazy nightmare trip trying to get there and the park guard tells him "The parks closed. The moose out front should have told ya." Remember how Clark absolutely loses it?

I can relate!!! We saw cardiology last week who said its not their thing "Someone should have told you. See a Nephrologist and genetics." We cannot get into nephrology for weeks. How silly are we?

We jumped through hoops got an appointment with a renowned geneticist. Genetics confidently says "this is obviously a cardiology problem but you need an autonomic cardiology specialist. Here is his name. Go see him." We quickly made an appointment for today to see the autonomic cardiologist specialist who would, just by title, know more than the regular cardiologist. Right?

After a great week and a half Tyler woke up very sick this morning. He had low blood pressure and was in significant pain. It just seemed so crazy. He had even been well enough to enjoy skiing with friends last Wednesday....but that's how these cycles have been crazy and unpredictable. We called his own doctor early this morning who advised, that none the less, the object was to get him help from someone who knows..."Keep the appointment."

So we carry him to the car and drive two hours in morning traffic to the other side of Atlanta. Its only when we arrive in the waiting room that we are cheerfully greeted by a large Moose......no wait, a receptionist who says, "the doctor is coming to talk with you. He has read your chart and feels that Tylers case is so complicated that he really cannot help." Obviously how could he possibly help....in all his training this doctor had not mastered the use of the complicated device we call a TELEPHONE. "I'm not sure why you are here." He explains "its not really my thing someone should have told you."

When I get a hold of this someone I am going to let them have it!!!!!

Poor Tyler then had to endure another hour and a half ride home. After several more phone calls while Tyler was pleading at four o'clock today home health care hooked him up to I.V. and he is finally resting. We have also spent the last few weeks making what seemed like hundreds of phone calls to programs who WILL NOT accept anyone under 18 in their autonomic programs.

"I guess SOMEONE should have told us."