I know exactly how you are feeling, because I was there myself!
My son Marc was born a collodian baby. No one in the delivery room knew what was wrong with him. It took them 8 hours to get a dermatologist to come to the hospital to tell us what was wrong. Marc has lamellar ichthyosis. He spent 2 weeks in the intensive care unit waiting for the membrane to fall off. I cried when I left the hospital without him. When he finally came home, our ritual was baths and lotions and creams. I often wondered "why me? Why my son?"
I soon realized that I had to pull myself together and become strong for my son. My husband had a difficult time dealing with the situation in the beginning, but he too, became stronger. One thing I truly believe is that Marc was given to us for a reason. If we couldn't handle the day-to-day dealings with his skin, I don't think God would have chosen us to be his parents.
I attended my first F.I.R.S.T. conference in 1998. I cried the entire weekend. At that conference I finally realized that I wasn't alone. I saw people who have lived with ichthyosis all their lives and they were okay with who they were and what they were doing. I could do this!
I never chose to "hide" Marc for fear of questions from others as to what is wrong with his skin. I have been accused of leaving him out in the sun without sunscreen or people ask me if he was burned. I graciously explain (briefly!!) what is wrong. Someone at FIRST gave me the suggestion of handing out pamphlets that FIRST provides which explains about ichthyosis. This has been very helpful. Marc started to talk at an early age, and I have told him that he has "dry skin," and it is called "ichthyosis." He has been able to tell people what he has if they ask.
Marc is 3 1/2 years old now and is beginning to realize that his skin is different from mommy's and daddy's. One day he told me that he wanted my hand. I asked him why and he said because he didn't like his skin. I had to hold back the tears. I explained to him that his skin is special just like he is. God gave him his special skin because he is a special boy.
I feel that my job is to make Marc feel good about himself. My job would be the same even if Marc didn't have lamellar ichthyosis. It is so important for a child to grow up with a secure sense of self. That is a parent's ultimate goal. I want him to be able to tell people what is wrong with his skin. I want them to see the boy behind the skin because Marc has an amazing personality and sense of humor! I am hoping that when he enters Kindergarten, he will feel confident enough to stand before his classmates and explain why his skin looks the way it does. Once his peers get beyond the skin, they will see that Marc is just like them.
I teach Kindergarten myself, so I know how cruel the kids can be. Sometimes, however, it is the adults who are the cruelest. When Marc started nursery school last year, I was quite nervous. Would they accept my son? I am sure you could imagine my anxiety! I went to the director and provided her with literature from FIRST (teachers guide to dealing with children with ichthyosis), and this website. I then asked her if I could write a short note explaining to the parents of Marc's classmates what is wrong with his skin. The director thought it was a great idea. Once the note was sent home, I actually had a few parents thank me for doing that. It put them at ease to realize that it wasn't contagious (something every mom is concerned about). I found that being honest is the best route to take. I can't hide the fact that something is wrong with Marc's skin, so I decided to be open about it from the start.
I know it is sometimes difficult to deal with the stares and whispering that goes on when you go out with your son. It takes a while to ignore them, but it does get easier.
I also attended the conference in Philly. Marc was able to see other kids with ichthyosis and it was great. He knows that other kids have skin like his-they just don't live in our neighborhood. I found myself not crying as much at this conference because I was in a different place with myself than I was at the previous one. I had a better understanding about this condition and my son is growing and doing all of the typical boy things that a child with "normal" skin would do (everyone told me that he would, but I had to see it to believe it!! [img]http://www.ichthyosis.com/ubb/smile.gif
[/img])I am also much more confident with myself-I can handle this and I feel that I am doing the best for my son.
Are there ever days when I wish Marc would wake up and all of the scale would be gone? Sure-but those days are happening less and less.
What I am trying to say, Kristi (if you're still reading this-sorry this is LONG!), is just take one day at a time. Things do get easier.
You can also join the FIRST Support Network. They will be able to connect you with someone you could talk to about any issues or concerns you may have. It is also a good place to vent.
I hope I was helpful. Take care and e-mail me if you want to "talk" further.