“Different” makes the world go ‘round

Never in a million years would I have pictured myself as a parent of a special needs child. I guess not a whole lot of people do. I always thought that these parents were a special kind of people who had the patience and stability to care for these precious children. I still do not think I exactly fit into this category. I can however, tell you what an eye-opening experience this has been for me.

babyA year ago, my son was born with a rare genetic syndrome called Cornelia de Lange Syndrome – CDLS for short. Throughout his life he will experience mild to severe developmental and physical delays along with other disabilities. Although we have had to go through some tough times, I would not change this little person who has forever changed my life and has inspired me to look at life a bit differently.

Before I gave birth to my son, I was your typically ignorant-type to a person with disabilities. Not ignorant in a rude sense, but in a non-educated sort of way. When I saw someone different it was hard for me not to stare or feel pity for them. I always used the word “retarded” for slang when I thought something was not to my liking or as some say; “stupid.” I now understand why I was feeling some of these things. You see, I was completely uneducated and like most people, I had never spent any quality time with someone who had a syndrome or disability.

When I come into contact with people who stare at my son or ask questions, I try not to get mad or hurt because I know that honestly; they just don’t know. They just don’t know that my son is incredibly smart and has the most genuinely beautiful smile. They just don’t know that he has brought so much joy into my life that at times I could just cry. They just don’t know how he has the best little giggle fits that make everyone in the room erupt into laughter. They just don’t know how he has touched the lives of so many people he has come into contact with. And, they just don’t know how happy he is almost all the time. I am not saying that it is ok for people to mock and belittle people with disabilities. I do however; understand that there is a genuine curiosity about people who are “different” from the accepted norm.

Although the past year has been a great adventure, it has been an emotional one as well. When times are tough, we must count our blessings and do the best we can. After all, we only get one life to live…so make the most of it. With that being said; thank you to my little Mason for teaching me to embrace “different.”

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Megan Gilbert

My name is Megan Gilbert. I am a 29-year-old third year nursing student at Purdue University Calumet. I have been married to my wonderful husband Scott for eight years and we have two beautiful boys; Reece and Mason. We currently reside in Northwest Indiana in the town of Schererville, which is about 40 minutes outside of Chicago. I love spending quality time with my family and l also enjoy singing with my local church. In addition, one of my favorite things to do in my down-time is blog and read blogs.

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5 Responses to “Different” makes the world go ‘round

  1. Miriam Bookey

    Megan, this is so lovely and really inspiring. Last summer I took my child’s camp counselor aside and gently told her how inappropriate it was to use the term “retarded” in a derogatory way. She was clearly surprised that anyone would be offended by that use of the term, as she had been using it to describe a broken toy and was oblivious to it’s real world application. When we can graciously educate others on things like this we can change perceptions…one person at a time.

  2. Megan,
    Thanks for sharing your beautiful story with the world. You have many lessons that the we need to be taught regarding children with special needs. You baby is so gorgeous and I can see that he is well loved!!

  3. I am delighted to have Mason in my life!
    Mason has accomplished more in his 1+ year of life than most do their entire lifetime – he’s touched so many, opened so many eyes, made so many laugh, brought joy to so many….the list goes on. He’s incredible and I look forward to watching him continue to grow and continue to bless us all.
    Thanks Megs for allowing me to be a part of his life and for sharing his life with others.

  4. All I can say is thank you and please give Mason a big hug for me. May God’sgrace and mercy continue to sustain you and your family.

  5. I was blessed reading about you and your little Mason. When I was caring for a couple sweet developmentaly delayed children, the family had this great poem hanging in their bathroom. Your readers may enjoy it, “Welcome to Holland” Great perspective when things are not what you were expection. Merry Christmas Dawn…http://the-callahans.com/susete/poem3.htm