Dylan (our 9 year old) has Marfan's and for those who are around him much know that he complains about pain. Pain that doesn't come from a wrestling match with his brother or falling off of his bicycle. It's pain that is part of his daily life with a connective tissue disorder. Occasionally he will just moan and groan that his joints and back hurt so badly that he just wants to sleep in order for him to not feel the pain.
Knowing that his pain comes from the condition that I passed onto him makes it even harder. I see how his body is formed, how his chest is so concave and his limbs so long, it can be hard as a father to know that my genes caused this. His physical pain will be with him all of his life, but watching your child hurt and not being able to do anything about it is difficult.
The older I get the more the daily pain is coming into play in my own life. It has been a long time where I have gone a day without pain. It just happens at the oddest times and sometimes in the oddest parts of my body. It’s not just the sporadic, temporary pains that happen daily, but the drawn out discomforts in my back, legs, arms, and even neck. Some days it’s hard enough to get past the pain and discomfort let alone to be productive past that.
I’ve read many individual’s methods in the Marfan community of how they cope (or don’t cope) with the pain. Some rely heavily on pain killers and often times their hearts desire is to not have to take them but it’s the only thing that seems to relieve their pain. Others practice meditation and/or breathing exercises.
My heart is deeply saddened when others are hopeless. They feel alone and isolated. When one feels like all hope is lost the physical pain is often magnified leading to deeper despair. It’s so hard when I read the stories of families and even spouses who are unwilling to accept the realities that their loved one has Marfan syndrome. They feel unloved and unwelcome.
I have been blessed to have a family that has always cared deeply about my health. That concern helps with the pain. Having a church family that cares about my well-being, as well as our children’s, is invaluable. Regarding human relations, my wife has never waivered in her love for me regardless of my pain. (and the pain that I can be to her sometimes. LOL)
The support of individuals helps greatly, but that isn’t the ultimate strength I rely on. It’s not my own “intestinal fortitude” that sees me through each day either. Those areas definitely help, but if it wasn’t for my faith in God and His promises I wouldn’t have the hope for the future that I do. I wouldn’t have the hope that I have for both my sons with Marfan syndrome if it wasn’t for my faith. As the Gaither song “Because He Lives” states:
Because He Lives – I Can Face Tomorrow
Because He Lives – All Fear is Gone
Because I Know – He Holds the Future
And Life is Worth the Living – Just Because He Lives
(For those who may not know the "He" in this song refers to Jesus)
Even though life is a daily journey with a connective tissue disorder I can face tomorrow, fearless and looking forward to the future.
I don’t know where you are at today with pain in your life. Maybe you have chronic physical pain and rarely, if ever, have relief. Maybe emotionally you are experiencing pain and hurt that would be considered never-ending. Even spiritually we can be hurt, confused, or in question. The incredible truth is that everything else around us could be falling apart, but God will never leave you and all you have to do is ask and trust Him.
1 John 4:4 “Greater is He that is in me than he who is in the world.”
Matthew 6:33 “Seek ye first the kingdom of God and His righteousness, and all these things shall be given unto you.”
My favorite verse and the one that I cling to is the response of Jesus to Paul in 2 Corinthians 12:9 “My grace is sufficient for you, for my power is made perfect in weakness.”
Even in my weakness, even when I am trying to cope with the pain in my life, I know who holds the future and life is worth living because I know He lives.