Catherine,

CAH can be very overwhelming at first. Be kind to yourself. Your son is just 8 weeks old, that in itself can be overwhelming. Not to mention all the hormones. It will get easier! You will be amazed at how routine it all becomes. 

I  remember when my son (now almost 7) was first born. I had a horrible labor and delivery. I was exhausted. We were in the hospital for almost a week. The first night we finally made it home from the hospital there was a big thunder storm and we lost power. Two days later the hospital called and told us to bring our son in immediately. I was terrified. I felt like all the air had been sucked out of the room. It felt so unfair. It took me awhile to work through all that.

I found this board almost immediately after my son was diagnosed, and have been coming here ever since. It is a wonderful source of friendship, information and support. I am so glad you found it. The friends and contacts you make here will help you through a lot. (And as always thank you Danny Carlton for keeping it up and running.)

There are times when it is depressing to read the posts, but it seems that might be due to what the board offers people. More often than not, people are posting for support, help, or information. All those topics come up when you have a "problem." The problems however don’t define the people with CAH.

I frequently post about my son’s weight concerns. But that is really a small part of him. What is truly important to those who know and love him is that he is a very smart, active, friendly, articulate, kind-hearted, and funny guy.

Although my posts might usually read negative (weight related typically) there are a million positives. He is a very healthy, happy nearly 7 year old. He leads a very normal life. He goes to school, summer camp, friends houses and sleepovers. He loves his teacher. He loves candy and Halloween. He was ecstatic when he learned to ride a two-wheeler bike. He is fascinated with body humor and anything squishy. He has had several accidents, trips to the e.r., and stitches. He came through them all just fine. He has survived pulled teeth, colds, and several bouts of the stomach flu.

I really think that you will find my/his story is typical of most kids with CAH. It helps to have information and support, to protect and advocate, but what is most important is to love and enjoy your son. You can email me anytime.

I’m pasting in this wonderful little story someone sent to me shortly after my son was born. It comes back to my mind often.  Take care.

HOLLAND

When you’re going to have a baby, it’s like planning a fabulous trip to...to Italy. You buy a bunch of guidebooks and make wonderful plans - the Coliseum, Michaelangelo’s "David", the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After many months of eager anticipation, the big day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The flight attendant comes and says, "Welcome to Holland!"  "Holland?" you say. "What do you mean, Holland?" I signed up for Italy! I’m supposed to be in Italy. All of my life I’ve dreamed of going to Italy." 

BUT, there’s been a change in the flight plan. They have landed the plane in Holland and you have no choice but to stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine or disease. It’s just a different place. So, now you must go out and buy new guidebooks. You must learn a whole new language. And you get to meet a whole new group of people you never would have met if you had gone to Italy. It is just a different place.

It is sometimes slower-paced than Italy, sometimes less flashy. But after you have been there for a while and you catch your breath, you look around and begin to notice that Holland has windmills, Holland had the most beautiful tulips you have ever seen and Holland has Rembrandts.

But everyone you know is busy coming and going from Italy and they are all bragging about what a wonderful time they are having there. And for the rest of your life, you will say, "Yes, that’s where I was supposed to go. That is what I had planned." And the pain of that will never, never go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.