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
You said it, sister!! Education and awareness decrease ignorance and promote acceptance...all we can do is educate others and be models of love and acceptance ourselves!
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