Ramblings of The Mom

My daughters have done a fabulous job of creating this blog for those who have the courage to follow it. While I have kept up with the blog, I have been somewhat reluctant to post, but the past week has reminded me of my own journey that began in 1973 when I married the Grand Pooba Hemophiliac (also known as Grandpa Rod). At that time in Montana there was no doctor or medical facility personnel that really knew anything about this crazy bleeding disorder, so it was on the family and more specifically Grandpa Rod to learn about and manage this condition. The treatment product and approach to treatment was okay for the time. We carried our own factor to the ER on many occasions before we could infuse at home. Every bleed was a trip to the ER where we mixed the factor, administered the factor, helped ourselves to a few rolls of paper tape, got a shot of morphine and headed home. Lots of memories of trying to get home before the full effect of the morphine set in. Imagine me in Montana in the middle of winter trying to get a drug induced, wheelchair ridin' husband through 30 inches of snow, into a van with no power lift to a safe place before he started singing "Dead Skunk". The nurses put us in a room and left us alone, because they knew nothing about the process. I knew we were in trouble when I saw two or three nurses gathered with the factor "directions" trying to figure out what to do with the two little bottles of "stuff". This is not an indictment of the nursing profession, because we had our share of terrific nurses, but rather an acknowledgment that hemophilia was not often seen or treated, so Grandpa Rod became the teacher of many.

The HTC at Doernbecher provides a different perspective on the treatment for hemophilia. The personnel is trained and the doctors are knowledgeable, fabulous and caring. The treatment for my 3 grandsons is superior to the treatment of my husband's era. He used to say, "someday, kids with hemophilia will probably just take a pill or something instead of all the infusions". Clearly, research hasn't progressed quite that far, but with the regular infusions (prophy), these kids are light years ahead of their grandpa.

Bright future aside, it was a little eery to be in the hospital room with one of my sweet grandbabies and his parents last week. Mom and dad were just trying to soak up the required learning to assist their son--asking every question and filling their parent library with information that will be recalled for future events. There is a little twinge of sadness, as I would prefer my family not have this experience. I suppose it would have been much easier not to have had children -- that would have been the solution for some -- but we would have missed out on the fantastic journey that has come with four daughters and subsequently 13 grandchildren. I would have been a total loner in that scenario. I mean, I'm real real fun, but even I would have grown weary of being around me!

I love this family and let's face it, for some the challenges are not health related, but all have their own challenges to bear. At least, we were somewhat prepared for this potential and thanks to research and medical advances the path is much more sophisticated than it was in 1950 (that sounds like a real long time ago and I don't want anyone to infer my age based on that number) and I look forward to the role of grandparent with this generation.