Ichthyosis Awareness Month- Week Four: Acceptance

I have always been a very maternal person. I am a ‘rule follower’ for the most part. I come from a big family and LOVE children. I always wanted to be a teacher, coming from a family of educators and I was able to use my graduate degree for a few long-term, second grade positions before Evan was born.  I enjoyed that time and look forward to being in the classroom again someday. But throughout my life, no matter who I was with or what I was doing, I have always valued the acceptance of others.

I was never one to judge someone on his or her appearance. I was never one to stare or be rude to someone who was ‘different’ than me. I have always had a spot in my heart for others with special needs and teaching children with special needs was rewarding for me.

While pregnant, the thought did cross my mind about having a child with special needs. Whether it was before or after the suspicious ultrasounds I don’t remember, but I always knew that I would love my child no matter what. The topic of ‘prenatal testing of genetic disorders’ came up at a party, while I was pregnant. The conversation was filled with mixed perceptions on what you would do if you were told that your unborn child had a genetic disorder. The conversation baffled me when I heard some others mention ‘termination’. Terminate?? I could not understand why or how anyone could consider doing that to their own child. When it comes to this topic, my opinion is that a prenatal confirmation of a genetic disorder is just preparation for you and your child’s future.

In a way, that is pretty much what happened in our situation. My ‘red flag’ ultrasounds started at 27 weeks and then we were given a diagnosis 2 days before Evan’s delivery. Since I already knew that I would accept anything that came my way in life, it helped me stay strong during that intense time. As soon as we heard the diagnosis, Harlequin Ichthyosis (HI), I accepted it. When they said HI would be the “worst-case scenario”, I accepted it. When it was confirmed in the operating room that our very premature baby had Harlequin Ichthyosis, I accepted it.

Just because I had this acceptance for what was happening didn’t mean I wasn’t sad. I stayed strong and tried not to cry or become emotional but my heart was broken. Not for me but for Evan. I had accepted what had come my way but I wish it didn’t come with pain, with fear or with uncertainties. But I guess that is a part of acceptance.

Evan is my life. I have accepted him for who he is and love him even more for it. I have accepted this life of caring for him 24/7 and wouldn’t have it any other way. I have accepted the fact that there will be many challenges we will face in regards to his skin and complications from it. I have accepted his developmental delays and know he will catch up one day. But it is hard for me to accept the fact that he will be judged and will face many uncomfortable social situations because of his appearance.

I am very protective over Evan while in public. To this day, I still keep the visor up over his car seat, while in stores, to ‘protect’ him.  Protection in many ways: from the sun or elements, from germs and from looks. When I first started bringing him out in public, I feel that I was always looking for the people who stare and would get very offended. Now, I do my thing and make eye contact if I notice someone staring and smile a big grin. I try not to let it get to me, though some days are better than others. At least 95% of the time, we have good experiences and I actually prefer people to ask questions than to stare.

I worry what life will be like for Evan as he grows up. I hope and pray that others accept him and I hope that he has a good school experience. I know we will teach him to be strong and to keep a positive attitude on life. We live in a wonderful community so I’m not too worried, but then again, some people can be cruel.

That is why I want to raise awareness in our community and abroad. I hope that raising awareness will be a way for others to accept Evan for who he is and not what he looks like or what his abilities are. I want everyone to be educated about Ichthyosis and not to judge Evan on why he his ears look different or why he is red, or scaly, or has thick yellow nails. I want people to know the challenges he faces everyday and not just because of his appearance but because of the grueling skin regimen he has to endure to be comfortable and to prevent serious medical situations. I wish Evan could have a care-free childhood and didn’t have to worry about his skin every moment of the day. And I want Evan to have the childhood he deserves without worrying about bullies or mean spirited people. I hope everyone who meets Evan will accept him for who he is.

Acceptance is a powerful word. It’s a word that everyone likes to hear but should be an attribute that everyone portrays.

May 2012