It has been five months since my last blog entry and that is really good news for Ryan. No blog entry means nothing new to report.
When the school year started back up for me two months ago, I was humbled by the number of people that were asking about Ryan and how he was doing. It felt really good to be able to tell everyone that there has been no change in his condition since I had last seen everyone in May. When you have a degenerative disease with no treatment or cure, every day that you can say there has been no change, is a win! We have prayed (and we know you have too) that Ryan's muscular dystrophy would progress slowly, and it seems to be doing just that.
Ryan is still walking, and if you didn't know about his disease you would still probably have no idea if you looked at him. He does have difficulty on stairs or any uneven ground. We recently installed extra hand rails on both staircases in our house so that Ryan can hold on to a railing on either side when he has to maneuver the stairs. We have adjusted our family routine in a way that keeps Ryan off the stairs as much as possible. Not because he CAN'T do it but because it takes away the risk of falling and really hurting himself. With our master bedroom now moved to the main floor of our house, Ryan can use the stairs as much or as little as he feels comfortable.
Ryan's doctors are also very pleased that the progress of the disease seems to have slowed. Because there is nothing they can do for him to help with the disease, we only need to check in with his doctors at The National Institute of Health and at Penn once a year unless something changes. It gives us that freedom again to live our lives and not feel like Ryan's doctor's visits and hospital stays are taking over.
We are feeling very blessed. We know that God is in control of our lives and it is only through Him that we can truly live. We will continue to take one day at a time and be thankful for every day that Ryan can stand tall. Thank you all for your thoughts, prayers, and love!
Wednesday, November 2, 2011
Friday, May 27, 2011
A genetics lesson with a happy ending!!
Ryan's disease is a recessive genetic disorder. This means that both parents have to be carriers of the disease in order for the offspring to have a chance of inheriting the disease. The easiest way to explain it is to say that each of us carries two copies of each gene. In recessive disorders, both copies of the gene would have to be defective for the disease to show itself. If only one copy of the gene is defective, we are considered carriers of the defect but show no symptoms. One of the things I learned from the doctors at NIH is that each person is likely the carrier of over 40 genetic disorders, but never shows symptoms.
When two people have a child, they each pass one copy of their DNA to the child. In Ryan's case, each of his parents carried this genetic defect in one copy of their DNA. So they each had one 'good' strand of DNA and one 'bad'. When they created Ryan, there were three difference scenarios that could have happened: a 25% chance that each parent would pass their good gene to Ryan and he would have 2 perfect genes, a 50% chance that one would pass a good gene and one would pass a bad gene making Ryan a carrier of the disease with no visible symptoms, and finally a 25% chance each parent would pass on the defective gene giving Ryan the disease he has today.
When Ryan received his diagnoses and we heard the word "genetic" our first thought and concern was for our children. We needed to know if they would have the disease as Ryan does. The doctors gave us the genetics lesson I listed above so we learned that my genetic make up would hold the key to whether or not our children will have the disease. We now know that Ryan has 2 bad copies of this gene so we were left with the following scenarios for our children: If I am NOT a carrier of the disease then our children will have inherited a bad gene from Ryan and a good gene from me, thus making them carriers of this disease but not displaying symptoms. If I AM a carrier of the disease then there would be a 50% chance I will have passed the bad gene to our children, giving them the disease.
Ryan made the decision that we had to know if I was a carrier of this genetic defect in order to make decisions about having more children. If I was a carrier, we would not have any more children so that we did not risk passing on the disease beyond the two beautiful children we already have.
It was a bit of a fight to convince the doctors at NIH to test me because the odds that I am also a carrier of this EXTREMELY rare genetic disorder are so slim. The doctors quickly realized how important this test was for us and consented.
I got the results today and they came back clear! I am NOT a carrier of this disease which means our children will not inherit this disease!! Ryan and I both felt confident that the results would come back negative but that thought was always there. What if? What if our children were going to go through this. Its a natural concern as a parent but now one we no longer need to feel!
Praise God for a heart less burdened.
When two people have a child, they each pass one copy of their DNA to the child. In Ryan's case, each of his parents carried this genetic defect in one copy of their DNA. So they each had one 'good' strand of DNA and one 'bad'. When they created Ryan, there were three difference scenarios that could have happened: a 25% chance that each parent would pass their good gene to Ryan and he would have 2 perfect genes, a 50% chance that one would pass a good gene and one would pass a bad gene making Ryan a carrier of the disease with no visible symptoms, and finally a 25% chance each parent would pass on the defective gene giving Ryan the disease he has today.
When Ryan received his diagnoses and we heard the word "genetic" our first thought and concern was for our children. We needed to know if they would have the disease as Ryan does. The doctors gave us the genetics lesson I listed above so we learned that my genetic make up would hold the key to whether or not our children will have the disease. We now know that Ryan has 2 bad copies of this gene so we were left with the following scenarios for our children: If I am NOT a carrier of the disease then our children will have inherited a bad gene from Ryan and a good gene from me, thus making them carriers of this disease but not displaying symptoms. If I AM a carrier of the disease then there would be a 50% chance I will have passed the bad gene to our children, giving them the disease.
Ryan made the decision that we had to know if I was a carrier of this genetic defect in order to make decisions about having more children. If I was a carrier, we would not have any more children so that we did not risk passing on the disease beyond the two beautiful children we already have.
It was a bit of a fight to convince the doctors at NIH to test me because the odds that I am also a carrier of this EXTREMELY rare genetic disorder are so slim. The doctors quickly realized how important this test was for us and consented.
I got the results today and they came back clear! I am NOT a carrier of this disease which means our children will not inherit this disease!! Ryan and I both felt confident that the results would come back negative but that thought was always there. What if? What if our children were going to go through this. Its a natural concern as a parent but now one we no longer need to feel!
Praise God for a heart less burdened.
Thursday, May 5, 2011
"And how are YOU handling all this?"
In the previous post, I responded to the list of questions I often hear from friends and family when talking about Ryan's condition. I left off the last question because the entry was already getting quite long. After people ask me what the diagnosis means, where we go from here, and how Ryan is handling it, I find they then ask me how I am handling it.
When asked about my own thoughts and feelings on the situation, my answers vary depending on how much I think my conversation partner really wants to hear. I am going to use this post as an opportunity to actually address that question as honestly as I can, for those that would like to know.
Like Ryan, I know my faith in God has been the foundation of my strength over the last year. I have had people say things like, "I can't believe you are handling this so well," or "I can't believe you're okay with all of this." My response to those people is to consider how our journey has changed over the last year.
We got a call from our primary care physician on a Sunday morning (actually three messages on the answering machine while we were at church), telling us we needed to get Ryan to the ER as soon as possible. The doctor was afraid Ryan was in kidney failure. That first 24 hours, I sat around waiting for someone to tell me my husband was dying. Once they confirmed his kidney's were fine but there were crazy things going on with his nerves and muscles that they couldn't diagnosis, they were considering ALS, which would have taken Ryan's life in a couple years. Once they confirmed his nerves were functioning fine, we slowly worked our way through possible diseases until we got to our answer.
Looking back on that journey, I remind people that for a number of months, I would ask myself, everyday, what I would do when I lost my husband. (Keep in mind we had a toddler at home and I was 5 months pregnant when Ryan was sent to the hospital for the first time). I was a wreck. While Ryan was in the hospital I would sit with him as long as I could, we would watch TV and just hang out. Then, I would go back to my parents house and just cry. I was so scared. So considering that I have journeyed from the idea that I would lose my husband, to the idea that he will likely be in a wheelchair in 20 years, I am over the moon! Once I knew Ryan would be around, I knew we could get through anything.
So when people ask me how I am handling it I often say that where we are now, and the prognosis we have, is much better then it could have been. Every day I have with him is a blessing and I now understand and appreciate that more then I ever have. I am a woman of God and He gives me strength and courage. Am I sad for Ryan? A little. I think part of me mourns the things he may miss out on in his life. Am I scared? Not anymore! I have Ryan, and together, we can get through anything... one day at a time.
When asked about my own thoughts and feelings on the situation, my answers vary depending on how much I think my conversation partner really wants to hear. I am going to use this post as an opportunity to actually address that question as honestly as I can, for those that would like to know.
Like Ryan, I know my faith in God has been the foundation of my strength over the last year. I have had people say things like, "I can't believe you are handling this so well," or "I can't believe you're okay with all of this." My response to those people is to consider how our journey has changed over the last year.
We got a call from our primary care physician on a Sunday morning (actually three messages on the answering machine while we were at church), telling us we needed to get Ryan to the ER as soon as possible. The doctor was afraid Ryan was in kidney failure. That first 24 hours, I sat around waiting for someone to tell me my husband was dying. Once they confirmed his kidney's were fine but there were crazy things going on with his nerves and muscles that they couldn't diagnosis, they were considering ALS, which would have taken Ryan's life in a couple years. Once they confirmed his nerves were functioning fine, we slowly worked our way through possible diseases until we got to our answer.
Looking back on that journey, I remind people that for a number of months, I would ask myself, everyday, what I would do when I lost my husband. (Keep in mind we had a toddler at home and I was 5 months pregnant when Ryan was sent to the hospital for the first time). I was a wreck. While Ryan was in the hospital I would sit with him as long as I could, we would watch TV and just hang out. Then, I would go back to my parents house and just cry. I was so scared. So considering that I have journeyed from the idea that I would lose my husband, to the idea that he will likely be in a wheelchair in 20 years, I am over the moon! Once I knew Ryan would be around, I knew we could get through anything.
So when people ask me how I am handling it I often say that where we are now, and the prognosis we have, is much better then it could have been. Every day I have with him is a blessing and I now understand and appreciate that more then I ever have. I am a woman of God and He gives me strength and courage. Am I sad for Ryan? A little. I think part of me mourns the things he may miss out on in his life. Am I scared? Not anymore! I have Ryan, and together, we can get through anything... one day at a time.
Friday, April 29, 2011
So What Does It All Mean?!?
Over the last two weeks, as people in our lives have inquired about Ryan's condition, I am starting to discover a trend. I will start spouting off about a diagnosis, a prognosis, scientific studies, etc. and many people will just stop me and ask, "So what does it all mean?!" My hope with this post is to describe a little bit about what Ryan's life will look like in light of the recent diagnosis.
Ryan has a form of Muscular Dystrophy. The disease involves the muscles in Ryan's arms and legs deteriorating at a slow progression until they are no longer able to perform the normal functions of arms and legs. Ryan's disease seems to only be affecting his legs at this stage which is great! More great news is that we were originally expecting the progression to wheelchair would be within 10 years, but now with the recent news about his specific genetic mutation, it seems Ryan is likely to have 20 years before he is completely unable to support his own weight! Might still sound depressing to some, but really good news to us!
The next question I often get is, "So what happens now?" Because there is no treatment and no cure available for this disease, there is very little for us to do. As I mentioned in the last post, Ryan's attitude will be a very important factor in determining what his future will look like. People that are able to have a positive attitude seem to have a slower progression with any type of debilitating disease. (And Ryan is handling this as well as any of us could have ever hoped!) In terms of future care, Ryan will be seen regularly by the neurology team at the University of Pennsylvania, and will check in with the team at NIH at least once a year. We have added Ryan to a list of people with similar diseases so that we will be notified if there are ever any drug trials available.
It was also recommended that Ryan continue to make some basic lifestyle changes to make his life a little easier. Just little things like avoiding stairs and uneven ground. They recommended we move to a home with single story living but we have decided to stay where we are and just make some changes to our home. We will need to renovate our bathroom in the near future because that is one place that Ryan will notice the affects of his disease before he will need assistive devices. We are told that little things like standing up from a toilet or standing for a period of time in a shower will eventually become difficult.
After going through all that, people will sort of whisper to me, "So how is Ryan doing with all this?" Ryan continues to amaze me! Ryan and I have been together for 11 years. We started dating when we were 18 and though, at the time, I would have told you we were already adults, the truth is that Ryan and I really grew up together. There are moments when I truly believe he knows me better then I know myself and vice versa. I am not ashamed to say that I was very worried that Ryan was going to take all feelings about what he is going through, bottle them up, and never want to think about it... let alone talk about it! I would have been wrong. Ryan seems to really be handling the news as well as I could have hoped. He seems to have accepted it and rather then dwelling on the diagnosis, he is living his life. That is the best possible thing he can be doing.
I truly believe Ryan's faith in God is what has helped keep him so strong. A number of years ago, Ryan got a tattoo on his arm of a cross of nails and the words Philippians 4:13 written underneath. The verse that reads, "I can do all things through Christ who strengthens me." always held a special place in Ryan's heart. It now seems clear why God would impress this verse on Ryan's heart from such a young age. God knew what Ryan's life had in store, as only He can know. I believe God has been preparing Ryan for the fight he has ahead of him, and with God's strength, Ryan will continue his fight to stand.
Ryan has a form of Muscular Dystrophy. The disease involves the muscles in Ryan's arms and legs deteriorating at a slow progression until they are no longer able to perform the normal functions of arms and legs. Ryan's disease seems to only be affecting his legs at this stage which is great! More great news is that we were originally expecting the progression to wheelchair would be within 10 years, but now with the recent news about his specific genetic mutation, it seems Ryan is likely to have 20 years before he is completely unable to support his own weight! Might still sound depressing to some, but really good news to us!
The next question I often get is, "So what happens now?" Because there is no treatment and no cure available for this disease, there is very little for us to do. As I mentioned in the last post, Ryan's attitude will be a very important factor in determining what his future will look like. People that are able to have a positive attitude seem to have a slower progression with any type of debilitating disease. (And Ryan is handling this as well as any of us could have ever hoped!) In terms of future care, Ryan will be seen regularly by the neurology team at the University of Pennsylvania, and will check in with the team at NIH at least once a year. We have added Ryan to a list of people with similar diseases so that we will be notified if there are ever any drug trials available.
It was also recommended that Ryan continue to make some basic lifestyle changes to make his life a little easier. Just little things like avoiding stairs and uneven ground. They recommended we move to a home with single story living but we have decided to stay where we are and just make some changes to our home. We will need to renovate our bathroom in the near future because that is one place that Ryan will notice the affects of his disease before he will need assistive devices. We are told that little things like standing up from a toilet or standing for a period of time in a shower will eventually become difficult.
After going through all that, people will sort of whisper to me, "So how is Ryan doing with all this?" Ryan continues to amaze me! Ryan and I have been together for 11 years. We started dating when we were 18 and though, at the time, I would have told you we were already adults, the truth is that Ryan and I really grew up together. There are moments when I truly believe he knows me better then I know myself and vice versa. I am not ashamed to say that I was very worried that Ryan was going to take all feelings about what he is going through, bottle them up, and never want to think about it... let alone talk about it! I would have been wrong. Ryan seems to really be handling the news as well as I could have hoped. He seems to have accepted it and rather then dwelling on the diagnosis, he is living his life. That is the best possible thing he can be doing.
I truly believe Ryan's faith in God is what has helped keep him so strong. A number of years ago, Ryan got a tattoo on his arm of a cross of nails and the words Philippians 4:13 written underneath. The verse that reads, "I can do all things through Christ who strengthens me." always held a special place in Ryan's heart. It now seems clear why God would impress this verse on Ryan's heart from such a young age. God knew what Ryan's life had in store, as only He can know. I believe God has been preparing Ryan for the fight he has ahead of him, and with God's strength, Ryan will continue his fight to stand.
Wednesday, April 13, 2011
Thankful for Being "Unique"
Ryan and I just got back from our follow-up visit to NIH (The National Institute of Health). We had an opportunity to meet with Ryan's neurology team, the genetic counselor, and rehabilitation specialists. The visit went better then we could have ever hoped and it ended up being a day that left us very thankful Ryan's case is "unique."
As we were already aware, Ryan has a form of Limb Girdle Muscular Dystrophy. What we were not aware of though, was that Ryan's form of this disease involves a genetic mutation that was discovered less then 2 years ago (called LGMD2L and/or MMD3). There are very few documented cases in the world! The reason that we are so thankful to learn that Ryan's mutation is different then expected, is because the progress of this form of the disease appears to be much slower then the more common forms of Miyoshi Myopathy.
We were presented with a research study that recently examined 12 patients with this specific genetic mutation. The research indicated that all 12 patients had been displaying symptoms of the disease for over 20 years, and ALL 12 patients were experiencing no arm weakness and were ALL still able to walk (with assistive devices). This is AMAZING and UNEXPECTED news. All the research we read about the more common forms of Miyoshi Myopathy indicated Ryan would be wheelchair bound and have weakness in his arms MUCH sooner then 20 years!!
There are still no guarantees since this disease is so new, but the early indications are that Ryan could continue to move under his own power for much longer then we initially expected! The neurology team is also optimistic that with this unique form of the disease, Ryan may even be able to work a full career! Because there is no treatment and no cure, Ryan's attitude will be the most important controllable factor in the progress of his disease. He has been encouraged to keep his muscles active and his spirits high. A positive attitude can really help keep his strength.
I would like to take this opportunity to thank all of you for your support and your prayers. We know that we have been blessed with today's news and we praise God for this blessing! Ryan's life will still be different, and at times difficult, but it is nothing he can't handle!
As we were already aware, Ryan has a form of Limb Girdle Muscular Dystrophy. What we were not aware of though, was that Ryan's form of this disease involves a genetic mutation that was discovered less then 2 years ago (called LGMD2L and/or MMD3). There are very few documented cases in the world! The reason that we are so thankful to learn that Ryan's mutation is different then expected, is because the progress of this form of the disease appears to be much slower then the more common forms of Miyoshi Myopathy.
We were presented with a research study that recently examined 12 patients with this specific genetic mutation. The research indicated that all 12 patients had been displaying symptoms of the disease for over 20 years, and ALL 12 patients were experiencing no arm weakness and were ALL still able to walk (with assistive devices). This is AMAZING and UNEXPECTED news. All the research we read about the more common forms of Miyoshi Myopathy indicated Ryan would be wheelchair bound and have weakness in his arms MUCH sooner then 20 years!!
There are still no guarantees since this disease is so new, but the early indications are that Ryan could continue to move under his own power for much longer then we initially expected! The neurology team is also optimistic that with this unique form of the disease, Ryan may even be able to work a full career! Because there is no treatment and no cure, Ryan's attitude will be the most important controllable factor in the progress of his disease. He has been encouraged to keep his muscles active and his spirits high. A positive attitude can really help keep his strength.
I would like to take this opportunity to thank all of you for your support and your prayers. We know that we have been blessed with today's news and we praise God for this blessing! Ryan's life will still be different, and at times difficult, but it is nothing he can't handle!
Friday, April 1, 2011
Home Sweet Home
When Ryan and I made our trip to NIH in January and first heard about the possibility he had Miyoshi Myopathy, we were given very few details at the time. They gave us a brief description of the symptoms and prognosis and told us the DNA tests would give us our answers. We were told that if this diagnosis was confirmed, one of the things we would need to do would be to move to a home with single story living.
After that meeting, I felt pretty confident that the DNA tests would confirm the doctors' suspicions... everything fit. In light of my assumptions, I started to think about moving because it was the only constructive thing I could do while waiting for the test results, though Ryan and I never talked about it directly.
I love our home. When we bought this house three years ago, we both assumed this would be the house we would raise our children in, the house we would grow old in. Though I knew we could "make it work" in our current home (because we have 2 bedrooms on the main floor), I was ready to pack it all up and move right away. I knew Ryan would not want to move, but I felt that Ryan would really regret it if we tried to stay and make it work here. I was picturing us in a downstairs bedroom, the children moved upstairs, and a day coming that Ryan could no longer go upstairs to tuck the kids into bed, or cuddle with them at night when they had a bad dream. I was even thinking it would bother him when it became too difficult to go up the stairs because the smoke detector needed new batteries (silly things like that).
Not knowing what our future holds, I just want things to be as easy as possible for Ryan. I had even started looking for any ranch style homes in our area, just to see if there was a chance we could stay in our community. I am the type of person that needs to charge in and "fix" things and this felt like one concrete thing I could do to help make his life easier. I was ready (and even determined) to convince Ryan that this is what would be best.
When the diagnosis came in, and we started to talk about what our future might look like, I asked Ryan to seriously consider moving, and moving soon. I explained all the reasons I was concerned, but Ryan's response was a simple "no." This is our home, the home we love, and he wanted to stay. He even said he would rather crawl up and down the stairs someday then move. It was not even open for discussion and I was so surprised to realize that I was okay with that.
I had made a plan, even started looking at houses, wanting to move as soon as possible and get settled into a new life. I usually do not handle it well when life does not follow my plan (I know, I know, gotta work on that one), but I am feeling peace about this decision. I am not sure why this is so different. Maybe because Ryan seems so sure. There is so much uncertainty in our futures, yet this is one thing Ryan can hold firm on. We can make it work here, so we will stay.
I have once again been humbled and reminded that I am not in control, God is. I seek comfort in this verse: "Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will make your paths straight." Proverbs 3:5-6
It sounds like we are going to be making some renovations so that Ryan can move through the house more comfortably as his condition develops. So for now, I will trust. I will trust that this is part of God's plan for us. This is where we will stay and where we will make our home.
General Update: We received confirmation that Ryan's next appointment at NIH will be on April 13th. He will be meeting with a physical therapist to discuss what he should and should not physically do in light of the diagnosis. Then we will be meeting with his Neurogentics team to discuss his prognosis, testing family members, and how his future care will be handled.
After that meeting, I felt pretty confident that the DNA tests would confirm the doctors' suspicions... everything fit. In light of my assumptions, I started to think about moving because it was the only constructive thing I could do while waiting for the test results, though Ryan and I never talked about it directly.
I love our home. When we bought this house three years ago, we both assumed this would be the house we would raise our children in, the house we would grow old in. Though I knew we could "make it work" in our current home (because we have 2 bedrooms on the main floor), I was ready to pack it all up and move right away. I knew Ryan would not want to move, but I felt that Ryan would really regret it if we tried to stay and make it work here. I was picturing us in a downstairs bedroom, the children moved upstairs, and a day coming that Ryan could no longer go upstairs to tuck the kids into bed, or cuddle with them at night when they had a bad dream. I was even thinking it would bother him when it became too difficult to go up the stairs because the smoke detector needed new batteries (silly things like that).
Not knowing what our future holds, I just want things to be as easy as possible for Ryan. I had even started looking for any ranch style homes in our area, just to see if there was a chance we could stay in our community. I am the type of person that needs to charge in and "fix" things and this felt like one concrete thing I could do to help make his life easier. I was ready (and even determined) to convince Ryan that this is what would be best.
When the diagnosis came in, and we started to talk about what our future might look like, I asked Ryan to seriously consider moving, and moving soon. I explained all the reasons I was concerned, but Ryan's response was a simple "no." This is our home, the home we love, and he wanted to stay. He even said he would rather crawl up and down the stairs someday then move. It was not even open for discussion and I was so surprised to realize that I was okay with that.
I had made a plan, even started looking at houses, wanting to move as soon as possible and get settled into a new life. I usually do not handle it well when life does not follow my plan (I know, I know, gotta work on that one), but I am feeling peace about this decision. I am not sure why this is so different. Maybe because Ryan seems so sure. There is so much uncertainty in our futures, yet this is one thing Ryan can hold firm on. We can make it work here, so we will stay.
I have once again been humbled and reminded that I am not in control, God is. I seek comfort in this verse: "Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will make your paths straight." Proverbs 3:5-6
It sounds like we are going to be making some renovations so that Ryan can move through the house more comfortably as his condition develops. So for now, I will trust. I will trust that this is part of God's plan for us. This is where we will stay and where we will make our home.
General Update: We received confirmation that Ryan's next appointment at NIH will be on April 13th. He will be meeting with a physical therapist to discuss what he should and should not physically do in light of the diagnosis. Then we will be meeting with his Neurogentics team to discuss his prognosis, testing family members, and how his future care will be handled.
Sunday, March 27, 2011
"Laugh A Little, Then Help Me Up"
Ryan came home the other day and told me that he talked to his fellow baseball coaches about his diagnosis. I was not concerned about Ryan being asked to stop coaching because of his condition, but I was concerned about whether or not they (the coaches and school) would ever make it difficult for him to WANT to continue. Everyone was very supportive and Ryan's head coach told him he would do everything he can to make the process as easy as possible over the upcoming years.
I was particularly interested to hear how Ryan approached discussing his disease with his players. For those of you that know me, you know that I tend to be the talker in our relationship and I have done most of the 'explaining' of his condition over the last year. I wanted to hear exactly what Ryan said to this group of high school guys because I knew it would say a lot about how Ryan was handling the recent news.
Ryan said he explained that he had a disease that was going to cause him to eventually lose the use of his legs and makes him fall down sometimes now. Some of his players expressed their sympathy and Ryan simply told them that when he falls down, "...just laugh a little, then help me up."
In that moment, I hadn't realized how worried I was about how Ryan was handling his diagnosis. To hear that he was embracing humor to share his situation, allowed me to exhale the breath I didn't even realize I had been holding since we received the news two weeks ago.
I am continuing to learn that God shows Himself and His plan in the most simple moments of our lives. Ryan's humor reminds me that we can handle whatever is coming!! Our story is NOT tragic. Our story is just... OUR story.
I was particularly interested to hear how Ryan approached discussing his disease with his players. For those of you that know me, you know that I tend to be the talker in our relationship and I have done most of the 'explaining' of his condition over the last year. I wanted to hear exactly what Ryan said to this group of high school guys because I knew it would say a lot about how Ryan was handling the recent news.
Ryan said he explained that he had a disease that was going to cause him to eventually lose the use of his legs and makes him fall down sometimes now. Some of his players expressed their sympathy and Ryan simply told them that when he falls down, "...just laugh a little, then help me up."
In that moment, I hadn't realized how worried I was about how Ryan was handling his diagnosis. To hear that he was embracing humor to share his situation, allowed me to exhale the breath I didn't even realize I had been holding since we received the news two weeks ago.
I am continuing to learn that God shows Himself and His plan in the most simple moments of our lives. Ryan's humor reminds me that we can handle whatever is coming!! Our story is NOT tragic. Our story is just... OUR story.
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