Ah! I can't cope! | Imamother

amother

Seafoam

Fri, Sep 09 2016, 10:31 am

We are waiting for results from bloodwork to find out if my son has a rare genetic disorder. I am so full of anxiety, I am having trouble focusing. He had another episode today, and my doctor advised me to let him go to school anyways. I feel like I can't breath!!

amother

Goldenrod

Fri, Sep 09 2016, 10:39 am

Hugs. That's very hard. When I was in a similar situation, one advice that was somewhat helpful was to take one day at a time. Try to distract yourself as much as possible. And it will help to have someone on call who can be emotionally supportive when you get the results.

Hope all goes well!

amother

Slateblue

Sat, Sep 10 2016, 3:19 pm

I have been there. It is so hard!!

We found out last year that our daughter has a genetic disorder. And even though it was terrifying and devastating to find that out, having a diagnosis for her has been such a relief and in many ways a real bracha. We now know what is wrong with her and have no more uncertainties or months and years of hunting for answers. And now that we know what she has, it allowed us to get her all the appropriate therapies, and make intelligent informed decisions about her medical care and treatments (e.g., for someone without her disorder, a certain surgery is recommended to help fix a specific problem which she has. But because we know that for this disorder, the surgery usually doesn't help, we were able to to confidently decide not to, saving a lot of hardship for all of us). Because we know what's wrong and how to deal with it as best we can, she is really doing great and has improved. Obviously this will be a life long battle, but we know what we're fighting against and we're old pros by now. My daughter is in preschool and doing so well and is doing better all the time.

I also want to say, if they call you and say that it's not a rare genetic disorder, I hope that will be a relief for you and will hopefully lead you to a different (and hopefully lighter) diagnosis. Ruling out a genetic disorder often really helps in coming to a final diagnosis, which has all the benefits of knowing what you're up against and how to best treat it and deal with it.

Sending you lots of hugs, chizzuk, and fast answers.