Children and Genetic Disorders

I do not have experience in this but I am very close to someone who has. My close friend has 4 children and three of four have genetic disorders. They are also on the autism spectrum. She went through denial for awhile and then grief. She still has times where she grieves what she thought her family would look like. She also deals with a lot of judgement sometimes because her kids look typical and they are not. She gets bogged down with all the dr appointments and sometimes she just has to take a breather from the docs.

Please know your feelings are normal. There are parents who are walking the same journey. I encourage you to seek a support group not only for how you are feeling right now but because you will probably learn from others who have been where you are.

I am careful not to tell my friend I know how she feels because I don't. I do try to encourage her and remind her she's a wonderful mom because she is and she needs to hear it.

She has made peace with her feelings of disappointment but she can become discouraged because not only does she have normal parenting issues, she deals with a myriad of medical issues as well. She's an extraordinary person and I admire her.

Blessings of peace as you walk the path you have ahead of you.

L.

Your last four questions are vaguely about chromosome/genetic disorders.

You might get more helpful answers or meaningful connection with other moms going through something similar (if that is what you are looking for) if you were a bit more specific, because you are casting a pretty big net.

I had a baby delivered late term that had passed away from a genetic disorder. I don't know if that "counts" to most people, but there was most definitely a period of grief.

I am sure everyone handles it differently and there is no right or wrong way of handling it.

My friend had a son who seemed a little different to me, but I thought he was just big for his age and on the babyish side. FF 6 years and she shares that he has Soto's. He had recently been diagnosed. They thought there was something different about him, but didn't know what. The mom had him tested and the dad still had not accepted the diagnosis. He said there was nothing wrong with him.

So in this case, he was in his elementary school years when he was diagnosed. They already loved him like he was. There really wasn't anything more than a title for them to deal with by the time he was diagnosed.

Here is the thing, most of your questions about genetic disorders are looking towards autism. My ex is autistic, I am ADHD, the force is strong in our family, ya know? Three of my four are just straight up ADHD only one has autism.

So where is the peace that needs to be found?

If you are ugly and your husband is ugly do you grieve that your children will probably be ugly? Do you chose not to have kids because they will turn out ugly? I know that is apples and oranges but damn if that doesn't sound like you. Oh, I have passed this on. Well guess what, it came from one of you and apparently you love each other, so exactly what are you mourning?

My kids are pretty amazing, I can't imagine being all Pooh about it. To look at it as something that must be grieved then you must not be very happy with your life. These kids are amazing and I just can't imagine looking at any of my kids and feeling sadness. It actually makes me a bit angry for your son that you do. I was adopted so an anomaly to my parents. My mother mourned my imperfections, it isn't a fun life for a kid and kids know when their parents see them as imperfect.

I am a fixer and I try to make my son's life easier through teaching him, working with him. Still when I got a little too into fixing him there was his big sis saying mom, stop trying to fix him, he isn't broke. My daughter was only 15, apparently wiser than I was at that time.

Hey Mama, I can tell you are having a tough time finding peace. I wish you blessings along your journey with this. (((Hugs)))

Yes...diagnoses as an infant..going through that process was difficult because it was so rare....and the waiting to see how it would affect her was difficult too. Thankfully she has only mild issues. So besides the cost to deal w them my main worry is her passing it on to her children.

I think there is a period of grief anytime a parent discovers their child is not as they expected. Usually, yes, the feelings do change and resolve.

Obviously, something as devastating as what Fuzzy describes will not be resolved quickly, or completely.

I agree that a support group is very valuable. The best people to talk to are those who have been there.