The Wrong Words…

The Wrong Words…

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“I don’t know how you do it”…

Do I really have a choice???  This is not the life I chose but the life that chose me!  I would not change it.  Just like most moms (we all know the other kinds) you fight for your child, you do not take NO as an answer, you push for explanations, and most of all you PRAY! When people say “I don’t know how you do it”  I want to respond and say “I don’t either”.  It is my DAILY life.  I live it 24/7.  We travel 1 hr and 15 mins one way to therapies twice a week because the in-home early childhood therapy the state offers is NOT in-network so we would have to pay A LOT more money.  We have TWELVE doctors.  We do not get a break.  I cherish every moment with Little Tay but sometimes I would love to be able to enjoy a relaxing shower instead of a 2 minute one.  So honestly, I do not know how I do it either but it is something I LOVE doing and would not change it! God chose ME to be the mother of Talynn and I am going to do the best I can at it!

“I’m sorry!”…

For what??? That my child has a rare genetic syndrome, brain abnormality, developmentally delayed, failure to thrive, Cerebral Palsy, or any other of her diagnosis.  Why are you sorry? God made Talynn and she is PERFECT just the way she is.  All of those words are LABELS/WORDS they do NOT define who Talynn is.  My wish is that everyone can look past the labels of children with disabilities and learn more about the actual child.  I am NOT sorry! Talynn is blessing and is perfect the way she is!

“I understand!”…

Excuse me??? No you do not! Now, unless you are living with a child with BOS, CP, DD, Partial ACC, FTT, GERD, and the list goes on then NO you do not understand.  You have NOT a clue! Please do not try to tell another mom you understand.  You will NEVER understand unless you are living with the child.  ALL children are different.  No child is the same.  Nothing frustrates me more than when I am talking about Talynn and I hear “Yes, I understand”.

“What is wrong with her?”…

Nothing, what is wrong with you???  There is nothing wrong with my child.  She is PERFECT and that is the way God made her.  She does have complications but that does NOT mean something is wrong with her.  EVERY child has some form of special needs.  Not all flowers bloom or grow at the same time.  Talynn has all the time she needs to become the best she can be.

“She’s SOOO little!”…

This use to bother me A LOT!!! I was very sensitive when Talynn was younger but now I just ignore it or say “Yes, she is the youngest living in the US with a rare genetic syndrome”.  I think the main reason was because when I look at someone I do not say “You are SO fat” or “You are TOO tall”.  So I was not sure how “She is SO small” is okay.  I would much rather someone say She is so cute, adorable, loveable, happy, beautiful, etc.  I am use to the comments now but in the beginning it was BAD.  It was so BAD that I started to get ANGRY.  Everywhere we would go I would hear it.  I started responding “Yes, she is SICK!!”.  People then felt bad for saying it but I realized that others do not have a clue and instead of getting ANGRY I need to EDUCATE them.

With that being said Talynn requires more needs then most but it could be worse.  I count my blessings daily and say Thank You every night.  So I am asking you to not compare your situation to others and be careful with the phrases you choose.  This is not to make people mad but to express the way it comes off when you are living the situation.

Love,

Mommy of BOS ❤

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3 thoughts on “The Wrong Words…

  1. Jill Morris says:

    Love this!!! No one will ever relate unless they have a child like Talynn. So many people open their mouths first instead of thinking about what they say. I find myself being less judgemental about other moms and other people in general because I have a child with BOS. I no longer judge the mom with screaming kids or the mom that looks so tired and haggard that she might fall over at any second because I don’t know what she goes everyday. I try to look smile and be sympathetic because I’ve been there.

    Like

  2. Cathe Crotts says:

    Well Said. I agree that we say things to others before we think. Love you for being our sweet Talynns mom. Your the BEST mom ever😘

    Like

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