Hi Dana,

I think we have all been there.   Actually,  I was probably worse than you and I didn’t work full time. I think the best thing you can do is go see a counselor that deals with people that have to deal with chronic illness.  The one I went to saw many parents of down syndrome kids.  They will help you realize that you have to grieve the perfect child, help you deal with your relationship with your husband and children and help you deal with the guilt you feel for what you feel is more of a focus on your daughter than your  other kids.  I have 4 boys and my youngest two have CAH.  I saw the counselor after my 1st with CAH was born. I felt guilty that I wasted so much time being consumed with CAH that I didn’t enjoy him from month one (when he was diagnosed) to month three or four.  I felt guilty that I could have caused this. I wondered if maybe my husband and I really weren’t meant for each other.  Now, I was also dealing with a little bit of postpartum depression which could also be part of your problem.   I saw the counselor a few times and he really put me in check. I realized that CAH is treatable, they will have a "normal" life, my husband and I were meant to be together to provide a strong family support for our kids and even though I might have been neglecting my other boys for a short time while I was consumed with CAH....it was something that I had to do. 

I remember sitting at my computer with my one month old ( the first with CAH) on my lap crying as I read the stories on this message board. I read every scientific piece of information I could get my hands on.  I was so devastated when they told me , at about 1 month old, that he had this that I felt desperate to escape it.   I wanted to make it better and I did in a way by getting DNA testing and a few other things.  My husband knew not to bother me when I was at the computer with the baby.  I took on much of the responsibility for taking the baby to the doctor and getting all the blood tests done in the beginning. He works and I’m a stay at home mom so it made sense.  I did call him after every hard blood draw and cried and swore up and down that I couldn’t do it and that he would have to. Yet, every time it came down to it, I wanted to do it. I even went by myself when they told me that the ACTH did prove that he had CAH. I sat by myself in the doctors office and cried for about 1 hour. I don’t know how they let me leave!LOL!!!!  I remember the doctor saying to me that it wasn’t that bad and telling me about all her other patients that were worse off and could function etc... I thought she was crazy because how could she possibly think that I was going to believe that there was something worse out there than Congenital Adrenal Hyperplasia.  The term alone scared me to death!!! I called my husband from the car and cried all the way home. I cried when he got home and I cried myself to sleep.  Thinking back now...I know I was very hormonal but that is how I reacted.  Once we got used to the CAH diagnosis, everything seemed to fall into place. We discovered an easy way to give him the meds and my husband took on the night time dosing.   We became so comfortable with it that we decided to have another baby!

It did feel like a punch in the gut to find out that my 4th baby had CAH but in a strange way I was happy that these two brothers would have something to really bond them.  They are 3 1/2 yrs and 15 months. They are doing great. Life is what you make of it and I know it’s tough to see that things will get better...but they will.  Trust your husband to take on some of the responsibilities.  I know, harder to say than do!  Ask him to take some of the responsibility. I still cringe when my husband takes all four somewhere. I must tell him a million times to watch the two little ones.  Not because of the CAH but because they are fast and he’s not used to having them all together all the time!!!!  He hasn’t lost one yet!   My husband knows about CAH but not nearly in the detail that I do. He did go to the first few appointment with me and my 4th son because we knew before he was born that he had CAH.  

I just wanted to tell you that this MB isn’t only for educational purposes but for support.  You post any time you need help. You can email me or call me anytime.  My number is 281 861-6043. It’s also on the CARES website.  www.caresfoundation.org

Take Care and remember not to be so hard on yourself!

Sandra