Wednesday, July 2, 2008

Imagine Part 1

Imagine for a minute that you find out there is something wrong with your child. Whether or not they are unborn, a baby or a toddler. Imagine that you are told that they will never be normal. They will never be like you or your partner or their sibling. It will always be obvious and it will never change.

How do you react?

Shock, horror, disgust, anger, sadness, desperation.


If you are religious you will pray to God that he will change your baby. He will take away the deformity. He will heal miraculously. If you are one that walks with guilt you will wonder what you did wrong to bring this about. If you are a dreamer you will conjure ideas of the future. You will dream of the future of technology. You will research, hold your breath, talk to other families. You will travel, spend money, seek the best doctor, professionals anything to change the outcome of knowing that your child will grow up different from others.

Now you find out that they will indeed not be what some consider normal but they will be happy functioning people. They will be smart, social and attractive. They will do almost everything that all of their other peers and siblings do. They will have a wide open future. They will have possibilities and maybe, just maybe, this 'disability' will benefit them.

You feel good about the positives but continue to worry about the negatives. You are happy that there is nothing 'developmentally' wrong with your child. You are content to know that your child is bright and capable. You are distraught about the abnormal categorization of your child. You know that they will always be looked at differently. That people will have a hard time getting past the 'deformity'. That people will always ask questions and be curious. They will want to know the details, the reason. Inside they will hope that they can prevent the same thing from happening to their children. They don't want to go through this and thank the heavens daily that they don't have to. "Thank God," they will say, "that my child is normal, beautiful, capable, perfect".

You know that people think this to themselves because you would have thought that if you were in their shoes. You know that they think this because you can see it written on their face. They are sympathetic and kind but you know anyway.

You look at other babies and children and think about how you got a bit shafted on this one. Every time a baby is born you look at their tiny bodies and try to see if they resemble your baby's deformity. You look for likeness, you seek out families that are going through the same thing. You feel like a kindred spirit to people who parent or are of the same kind. Even if you would normally not run in the same circle.

You are in a lonely place.

11 comments:

Whitney said...

I've been there...all of those places. I'm glad that I've read you enough to know that you have moved to a different "place" or I'd stay up until the wee hours of my birthday morning composing you a comment or e-mail that I would pray would help you in some way. :-) As it is, I will just say that Imagine Part 1 was eloquent and poignant. Thank you.

(Now I must go to bed so that I can be perky tomorrow when my little ones wake me at 6am. lol)

Whitney

Niki said...

Happy Birthday Whitney! Oh, stay tuned for Imagine Part 2. Yes, I'm in a different place but I swear that place lurks in my dark mind sometimes. I'm not sure if it ever entirely goes away. Does it?

Winbrooke said...

you have 2 perfect children. they have both had an impact on me and my family. how amazing is that? they are already changing the world with their smiles :)

Kristina said...

Thanks for writing that. You took the words right out my heart and soul.

Jenna said...

im glad we have eachother, i dont feel alone ever, i know i can always call you when times get rough.

Kelly said...

You don't know me but your blogs have really touched me. Your daughter IS perfect, in the way she was meant to be. Please don't think you are alone- we all have our unique challenges and struggles.

Best wishes to you-
Kelly

twin power mommy said...

Gosh...i never really thought about all those things. i mean, i remember the devastation i felt when i was told they were going to amputate caitlyn's leg. But it wasn't a long internal struggle. I seemed to have felt a peace about where we were at with our twins.

I guess i have always had a trust that God has a purpose for her and her lilly leg. I know that the Lord has plans for my girls.

The name "Lilly" was actually Caitlyn's idea. She, one day, just said, "mama, this leg's name is lilly" chris and i both LOVED that nickname for her leg. We thought it was a sweet name and i liked that Caitlyn had a special name that SHE determined was fit for it.
I like "leggie"...it's cute, too!

Michelle said...

You don't know me either, but I have a little boy (2 years old) who also has FH and a Symes amputation. I can relate so much to what you write about, and you are right, we do seek out those who have gone through and are going through this same journey. Thank you for sharing. Michelle (Mom to Logan)

Rena said...

Niki, I broke down as I read this post. You captured what I feel as if I had written it myself. Thank you. We have not amputated yet, but the pain is already so real.

themeyersboy said...

OK, so I've never posted on your blogg. Today I got tears in my eyes reading your post as well as all the friendly comments. While this is not the first time I've teared up reading it, it is a first at work. I love Honey!
-m

BethGo said...

This makes me really sad. But it is truly very honest. Thank you for having the courage to write this.