Thursday, April 29, 2010

Midwestern friends...


This week has been chocked full of all kinds of excitement, and I have barely gotten a moment to sit down and write about it all. On Monday night, we had an incredible visit with a family that has become so very near and dear to our hearts over the past almost 2 years. They are from the midwest and were down in our neck of the woods at Disney for a few days...thankfully, we live along the yellow brick road to the Magic Kingdom and are able to see friends from time to time making their way to and from that magical place.

Meet a group of kids who became fast friends during an evening adventure (hence the pjs on the redneck kids)...
Liz and I met on an online metabolic board a couple of summers ago. It was shortly after we had been introduced to the term "mitochondrial myopathy" that I found a message board with other families tackling the daily nuances of this strange disease. There was also another new comer on that forum whose story was eerily similar to ours. Her son, who was almost exactly a month old than Nathan, had almost identical symptoms to him and almost identical lab values as well. We started exchanging information and quickly became good friends. Emails turned into periodic phone calls, which turned into daily phone calls, which turned into a great friendship.
When the boys were babies, we would say "Whenever one of them is diagnosed, it will be like diagnosing both of them"...they were that similar. Nathan had a biopsy in November and Joseph had one just a couple of months later in January. When Nate's report came back diagnosing him with mito, I knew that Joseph had to have the same...they received their diagnosis just a short time later confirming what we had thought all along...our two boys who were so similar in so many ways did indeed have the same disease.
As the boys have gotten older, their symptoms have varied a little more, but they are still very similar in so many ways. Liz and I have talked at length before about how thankful we are that God has put us in each other's path through this journey, as we have someone to talk to about all the intricate details of research and lab work and symptoms and weird findings. We rejoice when good things happen to each other's family, and we are sorrowful through the tough things. We have helped each other through not only the daily struggles of raising children with mito, but with life struggles, the death of her mother to cancer, births of extended family, and routine daily life of merely being a wife and mother. She has been such a dear friend for the past couple of years, and it was an incredible delight to finally meet in person.
And like I said earlier, the kids absolutely hit it off from the start. Abby knew before hand that Joseph had also been diagnosed with mito, so she and Will, the oldest boy, struck up a conversation about the disease. I'm not sure what all was said...oh, to have been a fly on that wall at that moment, but I am so glad that they can talk about these kinds of things with others close to their age. They all ran around and played while Don, Liz, Jay and I sat around and laughed until our faces hurt. It was indeed a fun time, but entirely too short of a visit. We hope to make our way up to the midwest sometime in the near future to visit some more with these friends who we hold so dear to our hearts...

2 comments:

Liz said...

I love the pictures...and, of course, the commentary too! Ditto to everything!

Nicole on May 2, 2010 at 3:09 PM said...

Great pictures! Sounds like you guys had a wonderful time!!

Blog Archive

Followers

 

Life with the Ferrells Copyright © 2008 Green Scrapbook Diary Designed by SimplyWP | Made free by Scrapbooking Software | Bloggerized by Ipiet Notez