When the doctor told us Hailey had Down syndrome, I think there were a million and one thoughts that rushed through my head at one time. Thinking back, they weren't very rational and 99% of them weren't accurate or based on facts, but all were based on preconceived notions that I had about Down syndrome. Our life was over. My boys would suffer. We were putting a burden on them later in life. Our family was broken. Hailey would suffer. Could we still name her Hailey if she had DS? Everyone will feel sorry for us because now we were "that" family. How would we still do all the things we enjoy...baseball games, amusement parks, traveling, etc? How would I care for her? I didn't know what to do. This is the worst thing that could have happened to my family. I will probably offend someone with this, but it must be put out there. These are the same feelings and concerns that many women who abort their baby feel and say. I would not have ended my pregnancy had we known sooner, but the feelings would have still been the same initially. They are all based on fear...fear of the unknown...the fear of "less-than-perfect". I will never forget the neonatalogist when I asked, "How do we care for her, what do we do?" His reply, "You take her home. You feed her, love her. She is a baby first."
Those preconceived ideas I had about Down syndrome and disabilities led me to those questions...but they all put her disability first. She wasn't an individual. The doctor also followed with this...."I used to have a private practice. Of all of the families I saw that had children with Down syndrome, every one of them said that their life is fuller and they are happier than they were before they had their child with Down syndrome. Not a single one of them would want their life any other way."
My thoughts were based on opinions....opinions of someone who didn't even know anyone with Down syndrome. I honestly don't even know where they could have come from. Maybe they came from the special education classes from grade school and high school. Children isolated from everyone else. Looked at differently because they learned different. Something that some people almost treated as if it was contagious. People commonly made jokes about the "short-bus" and frequently said the r-word. How could I have been so closed-minded?
Over time, I have become more embarrassed by those initial thoughts. I am ashamed that I didn't have an open mind. I wonder what I missed through the course of my first 36 years...what wonderful person did I avoid? How much fuller could my life had been?
Almost all of my original thoughts have been disproved...and we are only 17 months into this journey. She's not a shrinking violet. Her brothers adore her...all her cousins...and all our friends' and neighbors' children. We have not turned into hermits. Our life is just a little more juggling because there are 3 of them and we are outnumbered....ahh! We don't "hide out"...we take vacations, go to baseball games, zoo, etc. Our family is not broken...we are now complete because of her.
I hope that through my blog...through Hailey's life...we can help mold the thinking of others. That one day, someone we know might have a child with Down syndrome and when they are given the diagnosis, they think back on Hailey and what a fabulous girl she was and what a wonderful adult she grew up to be. They can look at their child and smile...everything will be okay.
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| Hailey is not fond of the construction going on in the house |
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| Hailey playing in the midst of all her toys...flooring should be done today...yay! |
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| Apparently, if you kick the star sorter, the rings come off faster with less effort |
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| Great pointing! |
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| Little better mood! |
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| I never could have imagined the joy this little girl would bring into my life! |
My worries and fears were the same as yours. Now when I look back I wonder what was I thinking. I think I believed, and I don't know why, that Ds would change him for the worse - that he would be a Ds boy and not a boy with Ds. Now I know that he is 100% Ben and, yes, he does have many medical conditions but those conditions don't define him.
ReplyDeleteHailey and Ben, I hope, are changing all those old stereotypes!!
Oh, Laura...I pray that Hailey and Ben change those stereotypes. It brings tears to my eyes that other people have the same thoughts I had a little over a year ago. They are missing out on so much and they are not giving our children credit for how much their life is worth!
DeleteI feel so silly now looking back at the first week of my sons life,I actually thought what do I do with him?How do I hold him?This wasn't my first rodeo but I asked my pediatrician the same thing,what do I do?He said the very same also,he's a baby take care of him.He will get sick like all your others and he will thrive just like your others.He was right he's exactly like my others,we are only 6 months in and sure it may change but he's really no different.
ReplyDeleteI'm just glad I wasn't the only one that had such silly worries!
DeleteSeeing Hailey (via the blog) was so reassuring to me when Ben was born. She's cute and fun and spunky - and her pictures and your words helped me know that things would be OK. :)
ReplyDeleteYou have no idea how happy that makes me. That was my ultimate goal...to have someone else realize they weren't alone and things get better! She does have a lot of spunk!
DeleteI remember having the exact same initial thoughts after Levi was born. I even remembered thinking I wasted a good name on him. I feel so embarrassed now.
ReplyDeleteI'm so glad that I'm not the only one that had those crazy initial thoughts. Let's chalk it up to temporary insanity ;-)
DeleteI purposefully didn't read any of the blog hop posts before posting my own, since I didn't want to feel that I was influenced by them. But, not surprisingly, we say so many of the same things. It's really not so individual at all. Ha ha! This is really well written, Michelle. One of your best posts.
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