Thursday, June 24, 2010

Bitter Sweet Goodbyes

A few years ago, I enjoyed a wonderful morning routine here of getting the kiddos up for breakfast and heading to the local YMCA just about 4 miles away, and getting a great workout with my dear, dear adventure racing teammates. Jolie, Rebecca and I would train together about an hour per day, then I would shower, fix my hair, and leave feeling like a human.....all while my kiddos were having fun in the playroom with other kiddos and a very kind staff. One day, I was letting the three kiddos run wild in the gymnasium on my way out, and this "new girl" approached me and said,"Hey, are you the one who homeschools?" I said I was, and we started chatting. Imagine that, ME chatting!? As we talked, we realized we each had two girls and a boy, and they were in the same birth order and were the same ages. Then I learned she was a nurse, and she asked me about Garrett's medical issues I had briefly mentioned. At this time, Garrett was just starting to walk, so was just over two years old. She shared with me that her two year old son, Barett (I know, Barett and Garrett, how cool is that?!?!) was two and a half but not yet able to run. She felt like something was not right with Barett, and her pediatricians in Texas has dismissed her concerns completely. Many of you who read this will have the MOMMY ALARM going off in your hearts and heads now. We talked a long while, then agreed we needed to get the kiddos together and talk homeschooling, etc. We didn't talk again right away, but when we parted, she ended up finding a pediatrician and taking Barett in for a checkup. She asked the pediatrician about her concerns that 2.5 year old Barett wasn't running, and the doctor orderd some labs. She got a call back just before thanksgiving, and the doctor asked her to come in. Barett's CK level, which in normal kids is 35-200, but Barett's was over 20,000. This clearly indicated that he had Duchenne Muscular Dystrophy. On that day, my friend Kim and her husband got the worst news. They went to the neurologist before they went home, and the neurologist confirmed the diagnosis. A week or so later, Grouchy's sister, Jennifer, called to tell me her neighbor/friend's friend who just moved here from Texas had gotten a horrible diagnosis for her son. I soon realized it was the girl I met at the gym that day, Kim. I got Kim's number from Jennifer, who got it from her friend, and I gave her a call. I left a message, and soon Kim called me back, and we had a long, long talk. I still remember pacing my driveway and feeling so helpless for her. The prognosis for boys with Duchenne is not good. It is always fatal, and lifespan is rarely past the early 30s. Here's MDA's quick description of DMD . Another great site to learn more and make contributions is Barett's body does not make the protien that makes muscles regenerate or rebuild. SO his muscles are always breaking down but becoming scar tissue. This happens to the entire body over time. Eventually, over time, he will lose the ability to walk, and then other, even more crucial muscles will fail......heart, muscles used to breathe...Most Duchenne boys never run, but with a lioness' courage, Kim has found THE BEST doctor and approach for managing Barett, and he is taking a steroid she has to have shipped in from out of the USA, and he is RUNNING and JUMPING!!!! This is truly amazing! Many, many times we looked at each other and laughed as we watched our children by the pool and had to continuously yell, "Barett, Garrett, STOPP RUNNING!!!" Steroids will also prolong some of the other weaknesses and hopefully allow him to do more important things like BREATHE, for longer as well. A week or so later, we got together with our combined 6 kids, and they all hit it off from the beginning. Kim parents much like we do, and her children are such a joy, and our friendship blossomed into a bond we will always have. A few asides I can't leave out....she also eventually created an adventure racing team with two of her friends who worked out with us at the YMCA. She ran a half marathon to raise money for Parent Project MD called Run For Our Sons to raise money for Duchenne MD research. I trained with her some, and then last year she made me run it with her in Disney World because....can you imagine....I can TALK THE WHOLE TIME to keep her from thinking about the running!! We had an absolute blast running and just BEING, and I know we will be running this race of life very close to one another, side by side, just like the half marathon. I have failed to mention that her husband and Grouchy hit it off and enjoyed "dude time" just chatting behind their pickup trucks and dropping doves during dove season. We have few couples who we both enjoy the others' company. Usually I have a close friend, but the guys don't really have that much in common, or Grouchy will have a good friend, but they live in New Orleans, which makes it hard for us to get together because of our location, or I just don't bond with the wife so much. But this has been such an amazing, fun relationship with Kim and her family because, as time permitted, which wasn't nearly often enough, we all enjoyed each other's company as well as watching our kiddos thrive together. We watched Barett and Garrett learn to run together, play together, and the funniest, lean on each other when they needed balance. Now that's not funny in most cases, but we couldn't help but giggle over watching two less than normal-strength kids try to lean on their pal who also needed help!!! Okay, it's sad, but we found humor in it somehow. We frequently argued who had it worse.....Kim knowing how Barett's story will go and end, and me not knowing how Garrett and Addie's will go, but knowing it wasn't going as it should.....and now we finally have a reason for Garrett's struggles, and we still argue, but now it's more surreal and confusing. Kim is a sister to me. She is a strong, kind, fun, tender, honest, loving Christian lady. I can be myself with her...completely...and in this season of life (and I think this season for Kim and me is eternal, somehow). I was so blessed to have her live two exits away. We have enjoyed two years of our girls taking piano lessons across from my house, thus TERRIFIC TUESDAYS where we get together at my house and play ALL DAY!!! It's been so much fun to look forward to each Tuesday and then party all day!! She has been here for my good days when I can carry her some, my normal days where we both just have a fun time watching the kiddos and talking and laughing A LOT, and my recent bad days, where she listened, identified, and never dismissed or downplayed the gravity of Garrett's recent diagnosis. She gave me what I needed.....every time. She isn't afraid to say,"I agree that he is losing body fat and looks like an Ethopian," and just yesterday, "Clara-Leigh, you are right, he has gotten weaker this month. He had a really hard time trying to climb into my van this morning." It's not that other people have not listened, loved, and supported me, but this has been they kind of support in identification that I needed, and honestly, I will always need. THANK YOU, Kim.
Now to the reason I gush about my dear friend....yes, I am about to cry typing this...The kiddos and I head to Montana Monday, and Kim and her family leave to house hunt in south Texas Friday. When we return from our trip and they from theirs, we will have three days before they move to Texas.....several hours from here. And as I have talked about here, we will be relocating as well. So while I have known our season of spending weekly time together would have to close, it's so much harder for me than I thought. My family's life is woven through hers and likewise. I know we will log many, many, many (sorry, Duke!) hours on the phones, and if us girls can get our way, we will be running the annual half marathon together to raise money for our respective causes. But still, a day of each week will be empty......
Gosh, I can't thank you enough, Kim!!! I love you to death. You know that. I will stop gushing now! Oh, and I should mention the YMCA closed....not sure why I need to mention that xcept that the day it closed, I think I cried, too. SO many memories and friendships made!
Prepare for more installments of Clara-Leigh has her three close friend sister-in-laws and friends here.....closest ever.....and yes, I will cry more.....

1 comment:

  1. Girl you have such a way with words. And I've never known a kinder spirit with such a wicked sense of humor. I will follow you...all....on here and miss you more than you could ever know. I love ya sista!