Day 23: 31 for 21--Reminiscing and the "R" word

Let's start with the hot topic button shall we?  The use of the word retard.  I think every person with a Down syndrome child has an opinion on this word.  Let me start with my background of this word as it relates to me.  Yes, I was one of those who threw this word around very loosely back in the day.  "Oh, you're such a retard", "That's so retarded" and other variations of this statement.  I never said it regarding anyone with a mental handicap.  I never thought it about anyone with a mental handicap.  To me, it was just a slang term to be used to describe something dumb.  I had never had any personal interaction with someone who had Down syndrome until Katie.  I didn't know anything about Ds until Katie came along.

I have a cousin who is mentally handicapped.  She would be considered profound by some.  What she has done has exceeded any expectations of what anyone thought possible for her.  She had several champions in her corner  who battled for her.   That is a story for another time though.   I look at my cousin with so much respect now, never really understanding what she dealt with until I too was thrown an unexpected turn in my life.  I never called my cousin retarded though.  She was always mentally handicapped to me. 

Facebook, blogs and message boards were not a part of my life when K was born.  Facebook had just started taking off sometime that same year she was born.  So imagine my surprise when I found that the "r" word was a subject of great debate among many.  There are some who fiercely object to it, some who could care less about the word, and some who are in between.  At first I was one of those who didn't care.  As long as you weren't saying it about my Katie, why should it bother me?  I knew people weren't saying it to reference her.  Then, I started really hearing the word.  Kind of like the white elephant in the room type thing.  Someone would say the word and then everyone would look at me for my reaction.  It was like a spotlight was on me.  Now I here the word and I cringe.  I don't say it and am just now saying to people who matter to me to please stop saying it.  Someone very dear to my heart use to throw the word around very casually.  I asked this person to stop.  I have heard it slip out of this person's mouth a few times since then.  I just say please use a different word.  I don't get upset and I don't hate this person because I know this person is genuinely trying.  Some people would argue with me and say that they aren't trying hard enough.  We are making a difference when we have someone become aware of what they are saying.  One less time it is used is one less time I have to wonder if someone is going to call my daughter a retard.  Will it ever happen?  I'm not betting against it, but I am hopeful that we can eliminate this word someday.  We have a good start and I am pleased that President Obama recently signed a bill into law.  Rosa's Law was just passed which eliminates the word mental retardation and mentally retarded from federal health, education and labor policies.

Kids use this word so loosely.  Do you know that kids are more likely to laugh than they are to feel sorry or bad about someone being picked on?  How sad is that?  Thankfully, we do have people who are paving the way for a better tomorrow for my daughter and all those who share her special gene.  Even MTV, who doesn't meet a lot of parental approval, is bleeping out the word on shows.  So if we can get someone as huge as MTV to join in this cause, how about my friends and family who care about me and Katie stop using this word?  To those of you who have stopped, thank you.  To those of you haven't, let me challenge you to find a different word to express your thoughts.

I remember very early on after I had Katie, an older person, late 60's, used the word mongoloid to describe Kaitlyn.  To say that my eyeballs didn't pop out of my head is an understatement.  I politely told this person that that term was extremely outdated and derogatory.  The person apologized to me and I accepted it.  I do know that there are people who don't know that the "r" word is hurtful and demeaning.  Let me tell you a story.  I started school post integration.  I didn't know the word colored was derogatory.  I used it in a story I was telling.  I highly offended the person when I said it.  I literally had no idea what the word meant.  I was raised to love everyone and it didn't matter what color your skin was.  It was only after it was brought to my attention that the word was inappropriate that I never said it again.  That is how change starts.  One person at the time.  I don't believe in wiping you off the face of the Earth if you do say it.  I won't de-friend you, but I will respect you a who lot less if you keep saying it if you know how I feel about the subject.  You can be the change.  Won't you start today?

I met with a few Ds moms today.  I love being able to share our lives with those who do understand everything that we experience as members of the 21 club.  Over on the babycenter message board in the Ds group, there was a question posed to the members about how honest we really were to others when we first found out the diagnosis.  I have loved reading the responses.  I haven't posted yet, but I will.  So it leads me to do a small amount of reminiscing and reflecting on that period of my life.  To say it was all overwhelming is an understatement. 

I was all alone when I was told.  Kiley had just went home after going to the nursery to see why Kaitlyn hadn't been brought back to us.  I was getting ready to take a shower and tuck in for a day of enjoying Easter and celebrating what that meant.  I had Kaitlyn the day before.  That night Kiley was at the nursery when he saw two words written on a paper next to K--heart murmur.  During the night she wouldn't take the bottle.  We kept thinking it was because of her heart.  She was scheduled for an echo that morning, so when they didn't bring her back to us, I felt it was because of her heart and what they had found. We never suspected Ds even when we were told that the AFP level was low back in the 4th month of pregnancy and my quad screen was elevated.  Everything after that point was normal.  We declined ammnio after we discussed it with our high risk OB.  So I never gave Ds another thought.  That morning the doctor on call came in with a nurse and said the words that would change my life.  I think your daughter has Down syndrome and she has Tetralogy of Fallot.  I just couldn't believe what she was saying.  I was asked  if I had heard what was being said.  I responded very calmly, yes, why do you suspect Ds?  I was told about her floppiness, the facial features, etc.  They were shipping her off to a more specialized hospital.  My next sentence was I need to get out of here to go with her, can you make that happen?  They left me and then I called my husband who lost it when he heard.  Next was my parents and so on.  I had many people crying for me.  I very calmly got ready and asked the staff to take me to the nursery where I would stay until the ambulance came to transport her.  People who were learning of the diagnosis came up to see us and pray for us.  When K left for the hospital, I was discharged and ran home and packed a suitcase.  About halfway down to Gainesville after many calls to friends and family, I spoke to my sister in law and all I said was K has Ds and the tears came then.  I cried silently in the car the rest of the way holding Kiley's hand and praying to God.  Once we got to Shands, we were taken to the NICU where we sat at K's side until after midnight.  I didn't have time to process any of it really.  We were too busy talking to doctor's and nurses.  I can close my eyes and I am back there, remembering.  I can see the outfit I wore that day, the hard rocking chair I sat in, the location of the NICU bay we were in.  I remember walking into Shands thinking about how everyone was dressed in their Sunday best and just celebrating the day and wondering why we couldn't be doing the same.

I accepted the diagnosis before it was even confirmed.  I was so worried that K wasn't going to live and I just prayed that God would let her live.  I had a few really bad days, but overall it was not a time of deep mourning for me.  Yes, I did grieve for what I didn't have, but I didn't dwell on it.  Those who know me know that I am always smiling and for the most part a positive person.  That didn't change because of a diagnosis.  I didn't have a break with reality and I wasn't in denial about it.  I just accepted it and decided that I needed to get educated in a hurry.  I was thankful that I didn't get the diagnosis prenatally.  I had the most wonderful, beautiful, enjoyable pregnancy.  Really, all I wanted was to find out everything I could about Ds those first few weeks.  The worse day that that I had came after we had to switch doctors  (that's a teaching hospital for you).  I felt that all the progress we had made with K was going to go down the toilet when the new head doctor came in and decided to switch up some stuff.  I started crying and I did not stop the entire day.  Loud, boo hoo sobs.  I stayed at K's bedside the entire time and am so grateful for the nurse who pulled me through that day just by being there and listening to me.  That was probably the darkest day I ever experienced.  I just wanted the Ds to go away and for all her health issues to disappear.  I wanted to be home in my bed with my baby lying next to me.  I didn't want to go up to the NICU and have to ask permission to go into a locked unit to see my baby.  I didn't want to sit out in the open in front of everyone and whisper sweet nothings with no privacy whatsoever.  I wanted my recliner where I could sit in my tattered nightgown and hold my baby without monitors beeping every five minutes.  I wanted the normal, run of the mill birth experience.  Why couldn't I just get a side of normal with that Ds diagnosis?  Why did I have to be away from my home, away from my comfy bed where my butt could heal (literally and figuratively)?  Why did I have to sit in a rocking chair with a bottom as hard as a  piece of cement?  (well it felt that way after just giving birth)  Why, Why, Why???  It seemed like the questions would never stop coming.

I just accepted what the diagnosis was and that was that.  I knew nothing was going to change it and I had a choice in how I would handle it.  That doesn't mean that even today I don't have a moment where I  am sad because of all the hurdles she has to overcome.  All of it is a part of this journey called motherhood.  Every emotion that I felt was allowed and is still allowed.  You aren't a bad mom if you cried everyday for the first 6 months.  Many moms experience postpartum depression.  I am sure the numbers are pretty high for special needs moms.  Why?  Maybe because we think that we have to live up to a stereotype of what a perfect mom should be.  I remember watching Leave it to Beaver as a young girl.  I wanted to be in that family and I wanted to be that mom when I grew up.  No one could hold a candle to June Cleaver.  We women are harder on ourselves than anyone else could possibly be.  My life is far from the life I envisioned as a child and young adult, but I wouldn't want it any other way.   I thank those who have joined me in this journey, who have shared all the ups and downs with me, who continue to be someone I can call on.  I am who I am because of these experiences I have lived through and  I am right where God wants me to be.