I’m not in a position where I’m thinking about children and don’t know if I will be, but this is such a thoughtfully written post. I learned a lot, and I think you named a lot of important considerations for this process. Congrats again!
With us we didn’t know about EDS until a few years ago. I was diagnosed first at 41, then both of my kids were diagnosed with EDS. As we did further tests for Mast cell I found out that I had Hereditary Alpha Tryptasemia. We then had the kids tested and only my son inherited it. We also found out about the same time that he is colorblind also from me being a carrier of the gene. If I would have known prior to having children about EDS I don’t think it would have changed the outcome. I’m just glad that they were diagnosed young so that we can prevent damage from happening later in life unlike my poor body.
Obviously you are not there yet, but I get curious about how to explain in age appropriate ways why you made the decision you did, esp if whatever condition does end up getting passed on. Cuz as confident and at peace you are with your decision, confusing and sometimes hurt thoughts might circle in their head. (This is not criticism- i am just passionate about the best ways to communicate with children)
I didn’t find out until my children were adults. But I was sick when they were growing up and they struggled with my illness. Sometimes quite a lot. And then, we simply didn’t know why I got sick. So we said, “The doctors know Mama is sick, they just don’t know why Mama is sick. So they are all trying to make Mama feel better.” The hard part was, even as they aged, the conversation didn’t change much.
This is such a complex topic. I was diagnosed with hEDS in my 40’s — well after my two children had left the house. And my health has been on a very wild roller coaster ride since shortly after my 2nd child was born. Now I have a much idea on why, then, no idea.
I adore being a mother. I strongly suspect both my children have hEDS and many of its comorbidities.
Would I have made a different decision if I knew now what I knew at 22? I cannot say with any certainty. Would I at 25 (both previous ages were how old I was at when I got pregnant, I ended up giving birth at 23 and 25).
I do know I wanted 4 children and after two high risk pregnancies, in which both babies were born premature (my eldest we were able to stave off being a super preemie), so my then husband said he couldn’t go through any more pregnancies again. My ex-husband simply felt too helpless. I was bummed but I agreed and luckily we had now two beautiful babies so I agreed that we wouldn’t have more. I am glad my ex husband made his feelings known and we didn’t have any more children.
I absolutely believe that every person needs to weigh the pros and cons as we ARE a spectrum and the other hard part is — none of us knows how pregnancy will impact us.
I do know I love being parent. I also know that, without a shadow of doubt, this is an individual decision that each and every person should make on their own. This is a journey we create ourselves and it may look different from one another’s.
I’m not in a position where I’m thinking about children and don’t know if I will be, but this is such a thoughtfully written post. I learned a lot, and I think you named a lot of important considerations for this process. Congrats again!
Thank you!
With us we didn’t know about EDS until a few years ago. I was diagnosed first at 41, then both of my kids were diagnosed with EDS. As we did further tests for Mast cell I found out that I had Hereditary Alpha Tryptasemia. We then had the kids tested and only my son inherited it. We also found out about the same time that he is colorblind also from me being a carrier of the gene. If I would have known prior to having children about EDS I don’t think it would have changed the outcome. I’m just glad that they were diagnosed young so that we can prevent damage from happening later in life unlike my poor body.
Obviously you are not there yet, but I get curious about how to explain in age appropriate ways why you made the decision you did, esp if whatever condition does end up getting passed on. Cuz as confident and at peace you are with your decision, confusing and sometimes hurt thoughts might circle in their head. (This is not criticism- i am just passionate about the best ways to communicate with children)
I didn’t find out until my children were adults. But I was sick when they were growing up and they struggled with my illness. Sometimes quite a lot. And then, we simply didn’t know why I got sick. So we said, “The doctors know Mama is sick, they just don’t know why Mama is sick. So they are all trying to make Mama feel better.” The hard part was, even as they aged, the conversation didn’t change much.
This is such a complex topic. I was diagnosed with hEDS in my 40’s — well after my two children had left the house. And my health has been on a very wild roller coaster ride since shortly after my 2nd child was born. Now I have a much idea on why, then, no idea.
I adore being a mother. I strongly suspect both my children have hEDS and many of its comorbidities.
Would I have made a different decision if I knew now what I knew at 22? I cannot say with any certainty. Would I at 25 (both previous ages were how old I was at when I got pregnant, I ended up giving birth at 23 and 25).
I do know I wanted 4 children and after two high risk pregnancies, in which both babies were born premature (my eldest we were able to stave off being a super preemie), so my then husband said he couldn’t go through any more pregnancies again. My ex-husband simply felt too helpless. I was bummed but I agreed and luckily we had now two beautiful babies so I agreed that we wouldn’t have more. I am glad my ex husband made his feelings known and we didn’t have any more children.
I absolutely believe that every person needs to weigh the pros and cons as we ARE a spectrum and the other hard part is — none of us knows how pregnancy will impact us.
I do know I love being parent. I also know that, without a shadow of doubt, this is an individual decision that each and every person should make on their own. This is a journey we create ourselves and it may look different from one another’s.
This is such an insightful comment and I really appreciate your perspective. So many people weren't diagnosed until after having kids!