“I hold the world but as the world. . . A stage where every man must play a part, And mine is a sad one”

I finally did it. I put it off for too long, but I have finally done it. I have started seeking out a geneticist in the area to find out which type of Ehlers-Danlos Syndrome I have. It is likely that I have type three; however, I exhibit characteristics of types 1-4. I have been putting it off because I don't care. But, now that I know Garren may have Marfan's Syndrome I have to find out for our kids.

Garren has several physical symptoms of Marfans: his height and unproportionally long limbs, the sunken skin under his cheek bones, and his sternum bone protrudes significantly. He doesn't have the protruding upper pallet with the "gummy smile," but several members of his family have that. He spoke with someone he was doing a bankruptcy for at work who deals with Marfan's Syndrome patients. He said it is possible, but that he has seen worse cases.

This is important to find out because while my syndrome doesn't affect my life span, Marfan's does. And the tragedy in it is that there is just no way to detect it. It shortens one's life span due to the bursting of the aeortic valve. This is similar to my disorder, but not common. They monitored my heart several times before and throughout my pregnancy because they were worried that my aeortic valve would burst because of the stress of pregnancy on my body. There is no way of telling when the aeortic valve will burst except by being constantly monitored.

I feel so bad for our kids. It's like a double whammy! Joshua has exhibited symptoms of both syndromes. He has dislocated his joints in doing simple things like climbing up into my bed. When he pushes the door open his fingers bend backwards. That's mostly what I have seen of EDS. I have seen other things, but they could just be normal overextending or it could be EDS. He has one major characteristic of Marfan's that is cause for concern and that is the "divit" (sp?) in his chest. That is a major characteristic. However, I do wonder how many people have a divit in their chest that don't have Marfan's.

Anyway, my mom is always apologizing to me because of EDS. She says she "gave it to me." I don't care. I am very happy to be here. I like my life just fine. The genetic counselor told me I would feel this same way toward my kids. I thought I couldn't possibly since I keep telling my mom not to worry so much about it and to just trust that I am happy with EDS life. But, now that I am seeing symptoms in my own children I can't help but feel so bad for them because I know what they are going to feel and what they are going to go through. I Don't care for myself. I just live through it and do just fine. But, with my kids, I don't want them to feel any pain or sadness or frustration. Now, I know how my mom feels. I can't tell you how many times I've heard, "but you don't look sick!" uh huh, okay then I must not be! soooo frustrating. I don't want my kids to go through all the garbage I've gone through. I hope they figure out some way to manage this disorder by the time my kids start having problems.

If Garren does have Marfan's, how in the world did we find each other?! Two people with such similar disorders? Strange world this is. . . funny.

I am perfectly happy and at peace with my disorder. My mom is sort of a nut about it. If I never talked with anyone about it again as long as I live I'd be fine. But, now that my kids are involved it's just so sad. It's such a painful disorder and nobody knows what to do. I was in so much pain during my pregnancy that it got to the point where I was almost hospitalized and put on narcotics. I said, "no!' of course and instead went home and endured the pain. I would get stuck on my couch in pain and not know whether to call Garren or an ambulance. I have had to roll out of bed onto a pillow and use my arms to slide myself into the bathroom (like those tabogon things in the olympics. Is that what they are called?). I was unable to care for my child in any way. I didn't sleep for about the last 4 weeks of my pregnancy and had to have friends take care of my son for me. I couldn't lift my legs to get into the shower. I once had to have Garren help me get into the shower because I got "stuck" half way. I was fine with all of this. It will happen to me again in my life and I don't care anymore. I will just take it as it comes. But, I don't want to watch my kids go through that. ugh. . . so sad. I normally don't share this type of info, but I am kind of counting on the fact that this is serving as my journal (i am a lot better at keeping this journal than the paper ones). I don't know if anyone actually reads this, so I am counting on that too. And if you do read it I would probably tell you this stuff anyway. . .

I have more thoughts. . . but Miriam woke up. But, that's how it goes. That's real life in "Laymon's" terms.