My Thoughts...

Anna was a surprise baby. Our two children here were, almost 4 years old and 9 months old and just getting to know one another. Timmy was just adjusting to having a permanent sibling. I have two stepdaughters that are now 16 and 13. I was still pleased, in a special kind of way, to find out that I was pregnant again. I felt that since she was a total surprise that God must of wanted me to have her.

The pregnancy was alright. There were some complications with MY health, baby was coming along great- everything looked GREAT my O.B. said. I had a serious bout with constipation really early in my pregnancy and had to be hospitalized for it at 10 weeks. That was resolved without a hitch. I had serious hip pain with this pregnancy that I took nothing for. (I had the same thing with my 2nd child, Mary. But the Doctor put me on Vicodin during my last 3 months due to extreme pain and lack of mobility.) I failed my one hour glucose test with her and passed my three hour, so no problems there. She was breech for awhile, but turned on her own. Labor was miserable, but the delivery was fine, no problems.

When Anna finally arrived, after a 9 1/2 hour induced labor, I was so RELIEVED to have the pregnancy over with and her here with me. I was almost immediately worried about her skin appearance.

I began to feel depressed, lonely, frustrated, angry, and overwhelmed about her condition not getting any better throughout the weeks. The lack of a quick diagnosis was beginning to take its' toll on me. I was, and still am, concerned about what Anna's future holds for her, healthwise. Terror sat in wondering about the possible complications this Incontinentia Pigmenti had in store for my little baby. Wondering if she will be okay when she starts to make friends and worrying if she will have low self-esteem about the way her skin looks. If she will be intelligent enough to get past all the stupid remarks and jerks she will encounter. It is very hard.

Why do I think that way? You may ask yourself. I will answer you. I was shopping in K Mart with Anna and only Anna this summer in June, just one month after she was diagnosed and two older women came up to me to see Anna. I did not know them, but felt they were ok just to see her. Since it was summer time and it was quite warm, I had a cute little short set on her and her skin was still erupted (blisters). The womens' faces when they saw her skin looked terrified, as if they were going to catch it. Yes, it did look that bad! I got that reaction a lot when she had the blisters. Now that it is fall/ winter, no one sees her skin, where it is affected.

It has been a constant battle for me to come to terms with Anna's condition. Anxiety has plagued me once again. I am still working full time. I still have my other two children & 2 stepdaughters to pay attention to. I have a husband who tries so hard to understand this. I have been beating the streets trying to educate friends and family and those I have met along the way of Anna's condition.

It is so hard to explain and to put into words. I thought this was the best way. Hoping, of course, that I reach another family, another Mother, Father, sibling, Grandparent... friend who knows someone with this condition. Hoping to reach out just one little personal step closer to those. Instead of coming up with a search result filled with medical sites and no real stories of what it is like to deal with this first hand, someone will come across my site. It could make a big difference in someone's life.

I felt at first with Anna's condition maybe I could have done something different or this could have been seen earlier. That someone could have told me about this before. I could have prepared. There is no way to "prepare" yourself to deal with any special needs children, regardless of the condition.

But, knowing what I know now, my heart tells me it is time to come to terms with it. Come to accept I cannot change what is already chosen. God chose me to be Anna's Mother for a reason. He chose me to be the one who guides Anna through her life's struggles. I am Anna's Mom!

All I can do now is my best for her, our family, and myself. I just hope I have the right words to explain Incontinentia Pigmenti to her when she is older and inquires.

I want to take the time to thank everyone for reading this for me, for Anna. I hope I have explained all of this to better educate you, my family, friends, and web surfers. If there are questions, email me. Sign my guestbook. All of that can be found under the page "Contact Me". Sign up at the first page to be contacted when this site is updated. I plan on updating often.

~ Cindy. Mother of Timothy, Mary, and Anna.