So this post has been swarming around my mind for a few years now. I am going to share something that is very personal to me and my family, but I am doing it to bring awareness to something that not only we (our family deal with) but one that hundreds of thousands deal with. I hope that you see my heart and that it may answer questions for those of you who know our family but have always wondered.
So when I first met my husband (online… when no one met on line…when we had dialup) I remember this email that Chris sent me. “I have to share something with you” Of course my mind raced and all these things came to mind like he had been married before, or he was a woman (not kidding) or he had a child from another relationship…but when he called that night, my heart racing, he shared with me that he had a “disease” …at first I was a bit shocked but after chatting with him and talking more he explained that it was a form of muscular dystrophy called FSH short for Facioscapulohumeral muscular dystrophy, so of course easier to say FSH. He immediately shared with me that it onset in his late teens and that it wasn’t life threatening, but that it was degenerative and would progress. He shared the things that it affected on him personally
- he didn’t have the ability to smile (facio)
- He couldn’t walk very long long distances (humeral)
- he couldn’t lift his arms above his head (scapio)
- and he walked with slight limp
At that time we were in the early stages of our relationship and I didn’t think anything of it. I knew that I was deeply attracted to his heart and passion for the things of God. That I loved his sense of humor and his love for mankind. I was challenged by him both spiritually and cognitively as his is so so smart!
Fast forward a few months as our relationship grew and we finally met and began a weekend dating relationship (as I was in the DC area and he was in Appomattox pastoring) I grew more and more in love! All along, I was researching FSH and trying to figure out what it would mean for my…well…for our future. I knew that it was a genetic disease and so if we were to have children, the chances of them having or carrying FSH was 50% …scary and hard to think about. But, I also knew that God was tying our hearts together and that this was the husband that God was choosing for me.
We were married and began our life. FSH was always there. I can remember we went camping one cold winter weekend and there was a table that needed to be moved…I couldn’t do it by myself (but tried as I didn’t want Chris to feel bad), but Chris and I did it together. He said “see, if we do it together, we can do anything” That resignated with me and has for the last 17 years. Yes there were things that we had to do differently. We couldn’t go hiking, or walking on the beach, we had to do things slower and take more time, but we had a lot of fun and our life was good….we had two children back to back and of course we were both scared to death to find out if that disease had been passed on. We had some trouble finding a lab that would help us figure it out and so we waited. Parenthood was great, but harder in many ways as Chris’ weakness was evident.
We moved to NC and was able to be seen at the MD clinic at Duke and there they tested our kids…we found out both tested negative for MD!!! all praise to God! We are so thankful. Over the last several years, I have watched as Chris’ disease of FSH has really taken a tole on his body. It’s extremely painful to watch someone you love slowly deteriorate. But I will say, I have NEVER once …NEVER EVER heard this amazing man complain. He fights and takes the circumstances he’s been given with such grace. I know his heart has ached when we had a son that he can’t practice ball with or wrestle on the ground. I know that every time I pack the car, a piece of him hurts because he can’t do it for me. I know that he one day would love to dance with his daughter on her wedding day, but that may not happen. But my dear husband just keeps going, keeps being the strongest man I know (though his body is weak)
3 years ago, he felt led to get a 2nd masters in Marriage and Family therapy and become a licensed counselor…we are grateful as God has provided through Sara-Anne Photography the ability for him to peruse that full time…and he’s done it with flying colors! While his body is weaker, his spirit and mind are so strong and I’m so proud! He is truly the smartest man (next to my dad) that I know!
Last year, we came to the realization that Chris was at a point where he needed more assistance. Walking was getting harder and harder and being able to get up out of a chair became nearly impossible. They recommended a electric wheelchair and though that was hard to swallow and felt like a huge step, we were blessed to be able to get one that has been such a huge help to him. And now we are at a point where we need to get a van so that Chris can use this chair when he is out…it will give him more freedom and will decrease the likely hood of falls. (something that had been happening more and more)
So why am I sharing this? Well for several reasons. I think that people need to know. I know that some often see him around and wonder “what’s wrong?” and there’s a reason..a reason he doesn’t smile (though once you get to know him, you can see it in his eyes). or Why does he walk funny…the reason is FSH I also feel that because he can’t lift or carry or do other things, we rely on help so much more that most. (unfortunately our extended family is all away) and so I often will post something on Facebook “I need someone to help me move something” this is why. We have been blessed by so many. From someone from our church building our ramp to one of my clients helping us move a couch…we truly rely on others.
The other reason is that I think when people think of Muscular Dystrophy they think of ALS or Duchenes (the Jerry’s kids) but there are so many other types and so many of them get no funding …no research. We were at Duke last week and Chris asked his doctor about any medical testing that’s currently being done for FSH and there is NONE…none at all…for a disease that has no cure, that is degenerative and that affects so many, NO current testing or looking for a cure! That must change!
So next week, I am going to jail! As part of the Lock up for Muscular Dystrophy, I am going to do a little part to help raise funds that in hopes will someday help researchers bring a cure to this horrible disease. I don’t always agree with the way the MDA does things, but I know that there has to be money for the research to happen and this is one small way! So if you feel led…please help bail me out!
Below are some pictures of my amazing husband who hates to have his pictures taken (because he can’t smile) but who loves his family deeply and always will humor me! I will also say that we have two of the most amazing kids…a daughter that adores her daddy and will readily help put on his socks and fix his collar and a son that will always do the “heavy” work even when he can’t and are truly is his “legs”. Thank you for reading our story and learning more about Chris. We pray that you are encouraged and blessed!