This blog was inspired by 31 for 21 & is about my wonderful family.

"As a mother, my job is to take care of what is possible & trust God with the impossible." ~Ruth Bell Graham

"Never look down on someone, unless you're helping them up!"

Friday, October 12, 2012

Day 12

Top 10 things NOT to say to me:

10:  "Why did you have the prenatal test with your son, but not your daughter?"  No, it does NOT mean that I love her more than him or vice versa.  It's actually pretty simple.  I understand Down syndrome now.  Before Troy, I had no clue what to do, what to expect.  I did NOT have the prenatal testing to determine whether or not to terminate the pregnancy.  I did it to prepare myself & I'm glad I did.  I was able to go through the natural "grieving" process before he was born.  With my daughter, if she had Down syndrome, it didn't matter.  I only wanted to know if she had a heart condition...that's it.  In fact, I would've felt blessed if God had blessed me with another child with Down syndrome.  That would mean that He trusts me extra times 3!  :)

9:  "Does he have a touch of Down syndrome?"  You either have Down syndrome or you don't.  It's that simple.
8:  "Look, that person is like Troy."  I love seeing other people with Down syndrome.  It just makes my soul smile.  However, just because that person has Down syndrome doesn't mean he's like my son.  Troy has his own personality & deserves to be known as a person, not as his diagnosis...likewise for the other person.

7:  "Down syndrome child, Downsy, has Down's"  Neither of the following terms are correct language to use.  The correct term is a person with Down syndrome.  They deserve to be respected as a person first.  You wouldn't want to be referred to as some condition that you may have, so why would you do that to someone else?  In the USA, we use the term Down syndrome, not Down's.  Please, just use people first language, that's all. 

6:  "I don't know how you do it!"  Honestly, it's easy.  Raising a child with Down syndrome is just like raising a child without Down syndrome.  I give all of the glory to God, because without Him, I couldn't do it, & He knows that.  That's why it's easy...God is with us every second of every day.

5:  "Did you cause this?"  No.  Nothing I did, or didn't do before or during pregnancy caused my son to have an extra chromosome.  Yes, I have chronic pancreatitis & was on a LOT of medications before & during the first few months of pregnancy (until I was able to wean myself off of them).  But none of that caused my son to have Down syndrome.  That was God's purpose for my son.

4: "Are you sure he has Down syndrome?"  Yes.  We had a CVS test when I was in my first trimester & we've been to a geneticist, who gave us a copy of his karyotype (which is a picture of his genetic makeup).  Also, he was born with the most common congenital heart defect for babies with Down syndrome.  And, he does have many of the characteristics that people with Down syndrome have...which makes him adorable.

3:  "He's 3, shouldn't he be... Potty trained:  I have tried & continue to try to potty train him.  He's not ready.  AND he's on Lasix for his heart, which makes it really hard for him (or anyone) to know when it's time to potty.
Drinking from a regular cup or at least a straw:  I work with him all of the time to try to get him off of the sippy cup.  He can bring liquid up in to a straw, but once it hits his mouth, he spits it out.  He'll get there, he's just not ready & it's not due to my lack of trying.
Going up & down steps alone, jumping & running:  I thought so, too.  He just can't.  He practices these every day, but it's just out of his comfort zone right now.  As long as he's trying, I'm happy.

2:  "I'm sorry!"  Because I'm not.  I love my son just the way he is...wouldn't change him for a thing.  Yes, I did mourn my perfect child for a few days, maybe a week, after the prenatal diagnosis, BUT I realized that my child didn't die & accepted him for the way God made him.  Please accept him, too, & don't feel pity for us.  We only want you to look at us & see how much we love one another.

1:  DO NOT SAY THE WORD RETARD or RETARDED IN MY PRESENCE!  If you do, I will correct you quicker than you can blink your eye!  It doesn't matter if you weren't referring to my child (because, trust me, if you were, I don't think you'd be able to hear my lecture) or not.  That word is the worst word you can use in my presence.  There are so many other words you can use instead of this word.  Besides, do you know how ignorant you look when you misuse that word?

One last footnote.  Please, don't stare!  I know my children are beautiful, but staring is unnecessary.  :) If you are staring simply because you know & love someone with Down syndrome, come tell us.  We love to meet other folks & hear your stories!  But constant staring makes my blood boil.  It makes me so uncomfortable & oh, so furious. 

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