I was diagnosed with Marfan syndrome nearly 25 years ago and it has only been over the last five months that I have connected with groups related to this condition. I have learned from their experiences and I hope that I have been able to add my “two cents” to the some of the conversations and have been able to help encourage others.
Last week I posted a picture of Dylan, my nine year old, on the Marfan Syndrome Facebook page of him at his end-of-year awards ceremony. The purpose for the posting was to share with the Marfan community the good grades he got this past school year. Straight A’s for the entire year! Quite a feat if you ask me. I know that I NEVER accomplished that in any grade of school. (Including college)
After I posted the picture and shared about the brainpower of my Marfan son, the picture received many likes and many nice comments from folks in the group. The next morning I told Dylan what I had written and then read the comments that strangers, yet brothers and sisters, wrote in congratulatory form for him on that thread. One person used the term “Marfs” and Dylan’s head tilted and a smile came across his face.
I have never used the word Marf in front of him. Some folks don’t like the word while others love it. Dylan LOVED it. He commented that he had never heard that before. For some reason he then stated that it sounds like “Smurf” and thought he was super special! (we don’t let our kids even watch the Smurfs)
I assured him that it had nothing to do with the Smurfs and that some people who have Marfan syndrome refer to themselves as Marfs. He said okay and then bounced around calling himself a “Marf” in a very positive light. Those comments brightened his morning.
I never realized connecting to a group of individuals who have a common bond can be so invaluable for me and even my family. When the conversation sticks to our commonality we can find strength, hope, and encouragement in each others words. Questions are asked that are often answered by experience. Although a Facebook forum doesn’t take the place of your doctors or specialists, our commonality and experience daily benefit so many. The moderator also keeps things clean and relevant.
I guess I am saying all of this to say that regardless of the things that are going on in your life or a condition you may have, you were never meant to take it on alone. Capitalize on the experience of others. Rely on each other when your own strength is faltering.
I cling strongly to my faith, but even within the realms of faith, I need other people.
So if you are thinking about trying to “do it on your own” remember that you don’t need to. In the Marfan community there are many doctors and specialists who care and many who are willing to learn more about our condition. Don’t give up.
Our children’s Primary Care Physician didn’t know much at all about Marfan syndrome 8 years ago when we started going to him but he has been proactive in learning as much as he can about Marfan’s. He asks me about my life in order to increase his knowledge of this condition for the purpose of helping my sons and others. He also researches the condition to be able to best serve our family’s needs.
So for those in the Marfan community, thank you being there even when I wasn’t looking for you and thank you for the current and future support you will show to my family and many others.
Thank you for the wisdom and insight into your lives. And to those who have suffered the loss of a loved one due to Marfan syndrome, may you continue to find healing and strength in the days ahead and support those of us who still face this condition each and every day.
It’s not easy living with Marfan syndrome, but I wouldn’t exchange my four heart and one brain surgery for a life without it. I have learned so much and have grown so much living with this condition. It hasn’t always been easy, but I wouldn’t trade it for a day of being “normal” because this is my normal.
(This blog post was written in direct appreciation for those who give their time and talents to help others within the Marfan community)
Last week I posted a picture of Dylan, my nine year old, on the Marfan Syndrome Facebook page of him at his end-of-year awards ceremony. The purpose for the posting was to share with the Marfan community the good grades he got this past school year. Straight A’s for the entire year! Quite a feat if you ask me. I know that I NEVER accomplished that in any grade of school. (Including college)
After I posted the picture and shared about the brainpower of my Marfan son, the picture received many likes and many nice comments from folks in the group. The next morning I told Dylan what I had written and then read the comments that strangers, yet brothers and sisters, wrote in congratulatory form for him on that thread. One person used the term “Marfs” and Dylan’s head tilted and a smile came across his face.
I have never used the word Marf in front of him. Some folks don’t like the word while others love it. Dylan LOVED it. He commented that he had never heard that before. For some reason he then stated that it sounds like “Smurf” and thought he was super special! (we don’t let our kids even watch the Smurfs)
I assured him that it had nothing to do with the Smurfs and that some people who have Marfan syndrome refer to themselves as Marfs. He said okay and then bounced around calling himself a “Marf” in a very positive light. Those comments brightened his morning.
I never realized connecting to a group of individuals who have a common bond can be so invaluable for me and even my family. When the conversation sticks to our commonality we can find strength, hope, and encouragement in each others words. Questions are asked that are often answered by experience. Although a Facebook forum doesn’t take the place of your doctors or specialists, our commonality and experience daily benefit so many. The moderator also keeps things clean and relevant.
I guess I am saying all of this to say that regardless of the things that are going on in your life or a condition you may have, you were never meant to take it on alone. Capitalize on the experience of others. Rely on each other when your own strength is faltering.
I cling strongly to my faith, but even within the realms of faith, I need other people.
So if you are thinking about trying to “do it on your own” remember that you don’t need to. In the Marfan community there are many doctors and specialists who care and many who are willing to learn more about our condition. Don’t give up.
Our children’s Primary Care Physician didn’t know much at all about Marfan syndrome 8 years ago when we started going to him but he has been proactive in learning as much as he can about Marfan’s. He asks me about my life in order to increase his knowledge of this condition for the purpose of helping my sons and others. He also researches the condition to be able to best serve our family’s needs.
So for those in the Marfan community, thank you being there even when I wasn’t looking for you and thank you for the current and future support you will show to my family and many others.
Thank you for the wisdom and insight into your lives. And to those who have suffered the loss of a loved one due to Marfan syndrome, may you continue to find healing and strength in the days ahead and support those of us who still face this condition each and every day.
It’s not easy living with Marfan syndrome, but I wouldn’t exchange my four heart and one brain surgery for a life without it. I have learned so much and have grown so much living with this condition. It hasn’t always been easy, but I wouldn’t trade it for a day of being “normal” because this is my normal.
(This blog post was written in direct appreciation for those who give their time and talents to help others within the Marfan community)
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