We are not alone

For the first 8 years after learning about Mary having FH I had never talked to a person with experience with an External Fixator or that had FH like Mary. All of my information was from online. I finally asked Dr. Scott's nurse if he had other patients I could talk to. He put me in contact with a mother and neat sounding daughter (Rebecca) that live in the next city over. They gave me very helpful practical advice, raved about Dr. Scott, and said it was hard but a very successful procedure.

Then through my hubby helping an Eagle Scout with a project, we met the young man that I have referred to before that had the traumatic football injury causing him to need an external fixator for a full year! I spoke to his mother right before Mary's procedure began. She too shared practical information and she reiterated the same message: Dr. Scott is amazing, its a difficult process but her son had a very successful outcome.

A mother from my younger daughter's class put me in contact with another boy that lives in our same town that had FH and lengthened his leg a couple of years ago. She too gave me practical information and reiterated the same message as the first two mom's.

3 weeks into Mary's procedure we met the younger girl at Dr. Scott's office that I mentioned previously (Annie). It was such a gift to finally meet someone with FH in person. It was also nice to help pay it forward by sharing the information we have learned from others and from our own personal experience.

Then just 4 weeks into it, Dr. Scott's office called and asked if we would speak to another family that had FH. We of course said yes. I spoke to the mother for a long time on the phone. It was a great conversation and I was so nervous to find out they were having the fixator put on in just one week! But they sounded prepared. Both of us had shared a similar journey and I am sad we didn't get put in contact years ago. It would have been so nice to have someone to relate to for the past 9 years.

Well, that family was on my mind a lot as they embarked on their journey on June 14. It reminded me of our journey that seems like so long ago at this point but in reality was just 5 short weeks ago.

Mary had a PT appointment the day after the girls surgery so Mary and I popped in unexpectedly for a short visit. We just wanted to introduce ourselves and give her a few gifts. We gave her a pink rosebud wrapped in foil and a pipe cleaner to hang on her hospital bed since the rooms are so tiny. Mary wrote her a note and we gave her pink duct tape to help bling out her walker, crutches, etc. (if she likes pink that is.)

They are a very sweet family and Mary and the other girl (Victoria) have the exact same (pink) fixator on the same leg. We will continue to keep them in our thought and prayers. Seeing them in the hospital was a reminder to me how fast you do adapt to a fixtor. Mary has come so far since those days in the hospital when we were all afraid of to move the scary looking thing. My advice as we left was every day gets better but you have to expect the unexpected. The nice thing is that we have learned we are not alone.

(All of the folks above live locally but a year ago I also found a great group of folks online that have been very helpful- see recommended links.)