Sunday, May 20, 2012

I Hoped You Have My Sense Of Humor Not My EDS

When you are diagnosed with a chronic illness you go through all the same grief stages as one does in death. Anger, guilt, grief, resentment, blame, extreme sadness, and eventually acceptance. We won't even go into what it's like when you throw in the fact that in death often you have lots of family support. Death brings out compassion is most people. Death makes people sad. When they are sad they tend to want to make you "feel better". Chronis illness confuses them. When people can't relate to something they run fast. It also makes prole unlike you. Sad as it is. Remember that old saying 'birds of a feather folk together'? Well when you are an odd bird they kick your ass out of the nest. At times in chronic illness you lack this vital support. With the stages of grief there is no certain order. You can go backwards at anytime. It's normal. It's perfectly normal it's just the way it goes.

So just as it seems I got cozy in my own chronic illness boots it was time to test my children to see if they too inherited my fate. My husband, and I always wanted a large family. With as many kids as we could have. With each pregnancy I was totally unaware what I might be passing on to them, and of all the risks that went along with it. At that point I just knew I was 'different', and perplexed doctors. I had pain daily. I was unaware I had EDS when we made the decision to have a large family. Also unaware of the 50% chance of passing it on to each child. I just knew I loved children. I was good with them. I always wanted to be a Mama. My husband merely said "I want as many kids as you will have". So imagine my shock when I got sick in my late 20's, and I found out each kid had a 50% chance of inheriting EDS. I was completely torn to pieces. I beat myself up in more ways than any mother should ever have to endure.

The first few years of my EDS diagnosis where focused on stabilizing me. As I was VERY sick at first. Mostly with POTS. Oddly enough POTS was diagnosed before EDS. The POTS diagnosis was only the beginning of my health discovery. As why all my life I felt different. My POTS is secondary to my EDS. So it was all pieces to my health puzzle. Of complicated rare conditions. After getting me diagnosed, and feeling a little better then we decided to switch gears and find a childhood geneticist. We wanted to get the children evaluated for EDS to see which children had EDS, and which did not. My oldest, a daughter decided not to get tested until later in life. If the need came up as she aged.  She was 16 at the time, and not really showing any symptoms so we let her make that decision. She didn't want any illness coined to her to ruin her career choice. As she is a healthy active girl. Who runs, exercises, and does allot of physical exercise. She is in great shape. We respected her decision as she made one with her future in mind. She is well aware the "and if's, and might be's". So if she where to get ill later in life then she knows what to be evaluated for first. The other 3 boys we decided to get tested. Two of our boys have always showed symptoms. The third boy we where confused about. He had some symptoms, and some symptoms he did not. Our 5th child is a foster child (not that we love her any less)it just means there is no chance she has EDS.

We found a childhood geneticists through our state children's hospital, and it took a year to get into to see him. What a nervous wait! I just want to know now already! Damn it!!!! With each pregnancy you have dreams of what you want the baby to be like. You dream. Just because one has many babies doesn't mean they dream any less. Nope. We still dreamed all the same. We still gooed, and gahed over the baby clothes each, and every pregnancy. You dream of babies. You talk about babies allot! We watched those Birth Stories on TLC. Signed up for the monthly updates online. Go to Babies R Us once a week for the million things the baby will need.

You think 'I want the baby to have my hair, my eyes, my funny sense of humor. My witty charm, my ability to cook, daddy's shyness, daddy's eyes, daddy's nose or daddy's height'. You think of all these possibilities, and combinations of what the baby might be like. Never in you dreams do you think oh my baby might have EDS? My baby might have POTS? My baby might have Spina Bifida. Anything else horrible like that. All baby dreams are puppies, kitties, rainbows, and unicorns.

So imagine how I felt when I found out my oldest son, and youngest son had EDS. Naturally I blamed myself. As a mother we blame ourselves for anything that goes wrong. But when I was the one with EDS who else was there to blame? My husband didn't blame me. I know my own mother didn't blame me. But I still blame me. How could I not? It just seemed like the thing to do. I was so filled with emotions it was crazy. I know doctors say that with EDS the sooner you find out the better. You can prevent a lot of damage to tissues involved. But that didn't make me feel any better at all. It also didn't help that everyone that talked to me about it repeated the same thing 'well you found out soon'. They all mean well, but my pain was a huge deep hole of black quick sand I was falling deeper into everyday. It just seemed to make my guilt worse. Now I have an answer to why they woke up at night in pain. Why the oldest son was breaking so many bones. Why the youngest ones sons legs hurt all then time. Why they have flat feet. Why their skin is so soft despite lotions or creams. Why they are flexible, and bendy. Why they scar abnormally. The oldest, and his eyes which are problems common in EDS. Why they have trouble sleeping. Why they have crazy stomach problems. Why they're just so much like me. It all made sense now looking back on it. It was really spooky actually. The youngest son even has my bowel problems. He goes to the toilet 30 minutes after he eats. Just like I do. So much is making sense.......... Then I get sad at all the things in life they won't get to do. Will they be able to play football? Soccer? Wrestling? They won't be able to do rough things. Doctor said no contact sports. That makes it hard when they're boys. Because boys are so rough. Then of course what will it be like when they have families of their own? Will they want to pass this on to their children? So many things to think about, and I think to damn much. To damn often. All the freaking time. My mind never shuts up. So of course as a paranoid Mama I have let all the possibilities go through my head. Clear up to the real severe. Sheesh I really wish the hamsters in my head would let me have a break. Maybe some thinking silence. That would be.....well ******crickets chirping***** weird.

I dreamed you'd have my eyes, my hair, my funny sense of humor, my lips. Daddy's eyes, Daddy's, nose daddy's long legs, daddy shyness. Not my EDS......


  1. Oh honey I'm so sorry. I wish I had some words of wisdom for you but as you know I'm on this path too. As a mum I'm not sure you can ever avoid the guilt. I know you know all the lines, 'you didn't know', 'you didn't choose it for them', 'you can at least help them', blah blah blah. They are true but it doesn't help when you're kids are in pain. So I'm going to send you my love and my hugs and I want you to know I'm always here if you need to talk. <3

  2. Thank you. It's a good comfort just knowing that you understand.

  3. First off I would like to thank you for writting this post. I too found out that I had POTS before EDS, I am only 24yrs old. I also suspect that my daughter has EDS so i'm in the process of finding a pediatric geneticist in my area. I can totally relate to you and how you feel about your kids living with this illness also. Hopefully things will get better for the both of us.