Monday, October 18, 2010

Johnny and his friends

I woke up yesterday morning and noticed a few more deformities caused by MCTD. When I pointed them out to Ron I commented that it won't be long before he won't recognize me. He tenderly replied that he will always recognize and love me just the way I am. He then asked me if I felt any joy. Yes I do. All in all, as noted in previous posts, I am doing quite well.

Which brings me to Johnny. He is my Downs Syndrome nephew. I was lucky enough to attend his Special Olympics basketball game last Saturday. To watch all these kids (and I say kids though there was a gentleman who had to be in his late 60's) play their little hearts out was truly inspiring. Katie. She made her very first ever, basket. Jerry, or his name might have been Terry. Jason. He is around 47ish, very short. Under 5' I think. Running up and down the court clapping trying to get the fans involved. Another girl all decked out in her sports goggles. That was all she needed to feel like a winner. And Remi, short for Remmington. We sat by his dad. He kept almost losing his shorts. And Heidi was there to watch, though she never saw the game. She kept her head bent down always looking at the ground with those sad dark eyes. She is autistic. She won't ever speak. She is painfully shy. literally. Her mom was so darling. Her countenance radiated love, just like my sister.

And of course John, my sweet nephew. He's 20 yrs old. He would run up and down the court. You know his coach told him where his spot was cause he would run to it every time, and stay there. John shoots underhanded, as do many of the players. He came soooo close several times but the shots just didn't fall that day. He's a great shooter.

Then there was Bryan. Bryan looked to be the most physically disabled on the team. His left arm was completely immobile. It took it's place at his side, elbow bent at a 90 degree angle, and his hand hung at another 90 degree angle as well. And it was so thin, I'm sure from muscles that had never been used. His legs were very bent. His knees were so knocked that he would have to take an extra swinging motion just to get around each one to walk/run. As if that were not enough, his feet pointed in to one another, yet another obstacle to navigate with each step. Bryan looked like he could have cerebral palsy.

Bryan made one of the three baskets of the entire game. A hook shot because he only had the use of one arm. He was the first to run up and down the court in his ackward kind of way. He knew how to defend. He would put his arm up in the face of his 6'3-5 opponents. Yeah, the other team had some TALL players! Thus, only the 3 baskets for our Huskies. I commented to my sis how inspired I was by Bryan. She told me that his mother was told he would never walk. NEVER! As I said, he was running.

The Huskies lost. The score was 6 to 30 something. John wished he would have made a basket but he and the whole team felt like winners. Because they are. i learned so much last Sat morning, by sitting and watching and cheering. They are so dear and innocent. Which reminds me of one of my favorite stories. One day John got out of the shower and came walking out without a towel. Linda told him he needed to remember to wrap a towel around him next time. So the next day, sure enough, he came walking out with a towel, wrapped around his head!

God bless these sweet people. Actually, God bless the rest of us. for we will be the ones who really need those blessings.

Monday, October 4, 2010


I had a great weekend! I was honored to be involved in a wedding of one of my BFF's son's at Log Haven, up the beautiful Millcreek Canyon. That night Ron and his brothers and their sons went to the conference center for the Priesthood session. Then out to dinner afterwards. I admit. I enjoy the alone time to do whatever I want. (I do that anyway!) Many ideas, such as shopping, kept running through my head but I opted to watch the Sat morning conference session. I can't be guilted into anything, except making dinner for Curtis, so my choice to watch was because I really wanted to.

I loved conference. Probably one of my favorites. I was deeply touched by many of the talks. Many hit close to home. I'll first get to the one that got me and most of my fam in a way that wasn't so good, quite unsettling actually. You know the one I'm talking about. It's already the scuttlebutt on the internet and within the Mormon gay community. The church has made much progress in their teachings of homosexuality, and I felt this talk put us many steps back again. Our daughter Chelsea is a gifted writer and expresses her feelings so well. I ditto all she said about it on her blog. I could go on and on about what a beautiful human she is, but you can capture that yourself by reading her blog. (Don't know how to link it. If anyone out there does, link her post in the comments please.)

Then comes Pres Ballard's talk on addiction, prescription pain pill specifically. My heart ached, and I cried for the woman he spoke about. She lost everything. What started as an innocent and legitimate need, became her master. She was the slave. She was in bondage. I pray she has found her way out of her prison. As most know, I was addicted to pain pills for many many years. (See first posts if you want to read about my journey) I know that the problem is great. And addiction to pain pills, especially for women, is way way too high for members of the LDS church. And we are not alone. It is a worldwide huge problem! Know that there is a way out. And if I can talk to, or help in any way, please please please let me know. I understand. Please read Pres Ballard's talk. It was full of hope and love.

I loved Pres. Holland's talk. I always love his talks. But I loved Pres. Monson's talk on gratitude most of all. Now back to the wedding up Millcreek Canyon. I love the mountains. I love nature. I love this time of year. I love all the colors of Autumn. I love the sound of rushing water, of birds singing, of trees rustling in the wind. I love the smell of pine in the air. I love the wild flowers that are getting ready for their winter nap. I was filled with such gratitude. I was thinking of a friend who commented that my disease must be a very tough thing to handle every day. Sure. I wish I wasn't sick. I wish I had the energy to do things I used to do. I don't especially like looking like a blowfish face, or that Darth Vader is a constant companion. BUT, would I be the person I am today had I not gotten sick? I like who am so much better now. I'm more calm. (I know. That kind of happens when you can't breath. No more yelling and screaming around my house! well, sometimes.) I appreciate simplicity. I'm content with what I have. (Except I really really want a grand piano. That will never change..) I'm more in love with my husband than I have ever been. I feel peace. I have come to see that God's plan is perfect and personal. I so love and appreciate each member of my family. I have experienced their love and care for me though it has been difficult many times, as I should be the one giving and serving as they are doing. With that comes the lessons I have received from being on the "taking" end of service. It has taught me humility.

There are many other lessons I have learned. Could I have learned in any other way? I don't know. Would I trade these lessons, or who I am now, for good health? I should probably say no, but I don't know the answer to that either. What I do know, is this is the way it is, and I am grateful. Very very grateful. Would I trade being BFF's with Nemo and Darth? Yes! I would.