Tuesday, October 18, 2011

Difficult – sometimes, Illogical –NOT AT ALL

This past weekend I was unfortunate to have to hear some pretty ignorant comments. When I first sat down to write this post, I was pretty livid and bothered, but the more I thought about it, it made sense. Not in the, “oh that makes complete sense, they have a point…” way, rather “I need to remember who these people are and their past comments and actions, of course they made such a comment”. 

First I thought… maybe… I haven’t made it clear to those around me what a blessing and PLEASURE it has been to have a child like Ethan. Maybe I haven’t made it clear that I LOVE ETHAN with an indescribable love and that we would love another child like Ethan.  Maybe it hasn’t been obvious in the way we live our lives how “normal” it is. I am pretty outspoken about how I feel about Ethan and what he means to me and my family, at least I thought I was. Originally I was baffled that someone that is part of Ethan’s daily life still doesn’t completely get it.

THEN I remembered how these people were so upset when we announced our 3rd pregnancy. Ethan was our only planned child and we were so thrilled when he was conceived, but not everyone congratulated us. There were some people who were clearly upset and cried at our news. They asked “why” and “how could we do this to Andrea”.  They deemed us selfish for wanting to expand our family. It’s been over two years and I had pushed that experience far deep into the black corners of my memory. But with this resurfaced memory, I was able to remind myself to not take complete offense to their current ignorance. 

With all of that in mind, here is the story -This person was talking to me about a certain parent(s) in Ethan’s classroom. A mom and dad to a beautiful little girl, and clearly this little girl is the center of their universe. The way her mom and dad watch her as she plays just makes them glow with pride and love. Without a doubt they love that little girl with the same fierce love that I love Ethan with.  And the mommy is pregnant.
“poor young girl that is pregnant… she seems so young… I told her she is going to have such a hard time when that baby gets here…” said this person to me.

I sat there feeling a little lost, not exactly understanding where she was going. I thought to myself, yeah, having a newborn and a toddler can be a little tricky, but not to the point of feeling pity on them.
And the next comments were (from the other person in the room), “it’s just illogical to have another child after your first child with Down syndrome.”
I was baffled and completely lost for words, especially since we were speaking in Spanish and my Spanish doesn’t go beyond Spanglish. I wanted to go off and tell them how untrue that statement was.
They also mentioned how illogical it was since your odds of having another child with Ds is higher, and how it unfair it would be since your child with Ds would require more attention…. It just wasn’t logical.

I just sat there and kept looking over to my husband… waiting for him to say something… I was lost, confused and not sure what to feel. And I am not sure if the husband was also in shock or if he was trying to ignore the conversation but I couldn’t read his face and he didn’t speak a word!
Who are they to say that it is illogical? And why shouldn’t a child with Down syndrome have the 
right to grow up with a sibling? And why shouldn’t their parents have the right to have a family as big as they please.
 Down syndrome is a chromosome condition that our children are born with, not a life sentence that limits how people should live life.

We have plenty of friends who have joyfully brought another child into this world after their child with Down syndrome… who is to say they don’t deserve that happiness.  I agree that it might be difficult at times. Gabby and Andrea are 3 yrs apart and we had our difficult moments…  and there was no Down syndrome in our lives then. We had Ethan five years after Andrea, and we’ve had some of the same difficulties we had with the girls, NOT related to Ds, and sure we’ve had some hardships that have been related to Ds. But ILLOGICAL – no. Would it have been ILLOGICAL if Ethan had been our first and then later conceived Andrea and Gabby… NO.

It was complete nonsense and I slowly grew angry at their words, but I replayed their words over and over in my head, and the past memories resurfaced. I really can’t have hard feelings for these people, it’s just who they are. I am bothered that she has told the young mommy that she feels for her and how hard it will be for her (especially since she meant it in a “because you have a child with special needs way…”), these are people who genuinely love their child, and they do not need pity from anyone. 

It’s up to each family to decide what is best for them, not some random person who thinks they know better.  It’s not illogical to have dreams and dare to live your dreams. 

It completely reminded me of the story I read last year, the one that lead me to write about Ethan not being a burden, she was mother of a child with Down syndrome and was again pregnant and readers chastised her for being “selfish” for wanting to bring another child into this world after her first child had Down syndrome.
I was hurt to realized that people with those views existed, but I never knew that I was facing a person every single day that had those very same views.. somebody that Ethan loves dearly. Somebody that Ethan tightly clings to and daily shows them how amazing he is… but they still think that.

**And you might have figured out who I am talking about and I am NOT in any way talking bad about these people. I love these people dearly and I know they love Ethan with a great passion. I was just taken back. Maybe it’s the old school mentality some people have, those whose visions and beliefs you will never change, even if you throw all the positive things their way. I am hurt that they have those views. Ethan hasn’t shown to have any extra special needs that require attention at an astonishing level. Sure, some kids with Down syndrome have some extra ordinary needs, but that could be with any other condition, even a typical child that might be born with some medical needs.

It doesn’t mean that life ends there.

That little girl in Ethan's class came into this world with a great purpose, not to be pitied and dehumanized by being treated as being incapable of a normal life and to be told that it is illogical to have more siblings. God bless her and her family, she will make an amazing big sister!


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