Showing posts with label Down syndrome. Show all posts
Showing posts with label Down syndrome. Show all posts

Thursday, December 9, 2010

Down syndrome... a dads story

During 31 for 21 I asked Chris if he wanted to write something about Zach. He sent it to me but I misunderstood and thought it was not a final draft. Silly me. Sorry it took so long Chris! 

I remember when Zach was born.  It was one of the happiest days of my life.  All I could think about was the soccer playing Hiatt boy running up and down the field and owning the players because of stuff that I had taught him.
I was the one that got to take him to his first bath and hang out with him in the nursery.  It was a very special time for me as a new dad.  I could barely contain how happy I was and think about all the things he and I would do.  I just could not wait to watch him grow and become the boy that I longed for.
We were so ready to go home and start our life with our new born when the news was told to us about the possibility of Down syndrome. The way the doctor told us made me want to reach out and shake her for more information other than that the social worker would come in and talk to us.  The social worker was actually a blessing in disguise.  I do not remember her name but we got more information from her and what was going to be happening to us as a family then the doctor provided in the whole 30 minutes we saw her in the 3 days she came to check on Zach.  We were told we were moving to the NICU and that he would remain there until his jaundice was good enough for him to go home with us.  We were also told that it unfortunately be 2 weeks before we had conclusive proof if he truly had Down syndrome.
We cried…A LOT!  We were not prepared for this.  We asked all kinds of questions of doctors and nurses who came into the room.  We did not believe what they were saying and they must be wrong because so many doctors did not see the markings and the traits that are associated with Down syndrome.
Zach was moved to the NICU and we went home quick to grab a change of clothes and rushed back to the hospital.  We met the head of the NICU who was very cold and very straight forward with us.  She told us that Zach would never play any contact sports and that he was not really going to do much.  The one good thing that she did for us in the beginning was pulled some strings so that the conclusive test would be done before the end of the weekend and we not go home without knowing for sure.
We spent just about every waking moment with Zach and even woke up at 2 am to feed him and for Jen to pump.  The nurses were awesome and super understand and friendly.  I think that they understood that this was a child whom these parents loved more than can be imagined.  The nurses knew that physically there was nothing we could other than to be there for their child and love him unconditionally.
I think that it was Saturday when the head of the NICU called us over and gave us the news that she had received the test results back from Stanford.  The tests came back positive for Trisony 21 and that she was sorry.  She was still very cold and reserved.  I was not a big fan and I remember thinking and even telling Jen how much I was not a big fan of hers.  We cried I think at the realization that what we kind of dismissed as a false reading was coming true.
Zach’s bilirubin finally got to level’s that the nurses and doctors in the NICU felt were ok for him to be released.  It was at that point that attitudes and feeling changed. The nurses who were always sweet became happier for us being able to take home our son.  The head of the NICU became a totally different person.  I think that she was so used to having to deliver bad news she was always in her cold doctor form and now we got to take home our son she was very excited for us and talked to us like new parents.  We were very excited!
While he was in the hospital I decided I was going to give up all my physical activities that I did for fun.  No more soccer because from what I was told Zach would never play sports of any kind.  It was not until after we left the hospital that I found out that Down syndrome was not a burden or hindrance but more of a different life experience.  Zach was healthy and there were several well documented cases of kids with Down syndrome playing sports and even excelling at them. 
Today Zach is on a special needs soccer team.  He has played now for almost 3 years on this team. He is still small and probably one of the youngest on the team at 6 but he is out there chasing after the ball with his mom and dad and sister on the sidelines cheering him on.  I am still playing as well and it does bring a sense of joy to see him out there running around and having such a good time.  I think that in a few years when both he and his sister are playing in different leagues that he will be a force on the field and a scoring machine.
I look back at all of the fear and worry that I had when I was told he would be just a kid who did nothing and it makes me smile because I never met that kid and the only child that I see is one that is going 100 mph from start to finish whether it is soccer or school or even life.

Tuesday, November 16, 2010

Zach's teacher...

In October I mentioned to Zach's teacher that I was doing the 31 for 21 and if she so felt inclined, to write a little blurb about Zach. She emailed it to me today and it filled my heart with joy to read it.

Teachers, especially special ed teachers, are truly unsung heroes. Zach's aides and teachers mean so much to our family and I am so thankful for them.

Zach Hiatt embodies exuberance as well as heart.  Zach is in my class at school, and I am lucky enough to be Zach’s teacher. Zach’s smile just lights up our room.  Every morning, he’s got the greatest hello for everyone.  When he shares something during group time, his story is punctuated with gestures and demonstrations like when he says, “I’m Buzz Light Year, to infinity and beyond!” with a swish of his cape and a leap.
Not only is Zach exuberant, he’s got a great heart. One day, I was having some medical issues so I took the morning off of school to see a specialist.  When I returned, the sub teacher was finishing reading a book to the students.  I quietly sat down on the floor next to Zach.  Zach beamed and leaned into me and said, “Rhonda, we missed you.”  My heart melted.  It felt good to be missed.  Then Zach said, “Where were you?” and I said at the Dr.’s office.  Zach then said, “Are you, O.K., Rhonda?”  When I told him I was O.K., Zach said, “Did the Dr. give you a lollipop?” That cracked me up.  It felt good to laugh.
I feel so privileged to be Zach’s teacher, and I often wonder, “Who’s teaching who?” because I learn so much from Zach’s love of life and his tender, good heart. I love watching him grow up and learn new things—every day it’s something new with Zach!  The latest thing is “I got it, Rhonda.”  Thank you, Zach, for all you bring to all of our lives!

Teacher Rhonda

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Thank you Teacher Rhonda. For everything that you do.

Thursday, October 14, 2010

DS and my daughter

Before we even conceived our daughter I knew that she would be amazing. I knew that extra chromosome that her brother carries would affect her in such a positive way. While Hannah is only 3 and in the throws of being a strong willed drama queen I can already tell she is going to be a more compassionate, understanding young woman than I ever was. What some would call different is normal for her and that is something I wish all children were exposed to. I believe it would make for a much more understanding society. Maybe there would be less bullying in school and more acceptance. I watch Hannah at Zach's soccer games and I love that kids in wheelchairs, using walkers and walking with crutches don't phase her one bit. She doesn't even notice it. I also love that she understands Zach's speech better than we do. There are times I am not understanding what he is telling me and I ask him to repeat it and finally Hannah will turn to me and say "he said........". That warms my heart. I have no doubt that they will continue to be great friends and that she will likely be his biggest advocate.

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Thursday, October 7, 2010

Alarming statistics

Down syndrome occurs in 1 in 733 LIVE births.

Approximately 90% of women who find out prenatally that their child has this extra chromosome terminates the pregnancy.

90%! That is crazy. Sometimes I feel like I am raising an endangered kind. For lack of a way better term. I feel that with the earlier prenatal screenings this percentage is going to continue to climb. I fear that the acceptance of individuals like my son will not get better over the years but in fact get worse, since there will be less and less people like him born. 

90%! So many lives are ended because they are deemed unworthy. Because doctors suggest 'taking care of the problem' rather than educating and because scared parents are worried about what society will think of something less than "perfect". 


I cannot begin to count the number of people that Zach has touched. People that have personally told me how much they love my son. People I don't know come up to us at the grocery store or when we are around town and tell us they have worked with Zach at school, or that their kid rides with Zach on the bus and Zach has made such a positive impact on their life that they feel compelled to come up to Chris and I and tell us about it.

They tell us just how much they love him. 

How sweet he is. 

How their typically rambunctious child is calmed by Zach. 

How Zach comforted their kid at school when their kid got hurt.

The list goes on. 

This does not sound like a soul that should not be here with us. This is not a life that is a burden on society. This child has taught things to more people than we will ever know. Sure they might not be things that you can record on a report card. Or that will help you ace a test. But what is more important is that he has taught people what true uncensored love is. And not to judge a book by the cover that society has created. 

I feel sorry for all of the people that don't have a Zachary in their life because the way he has enriched mine is unexplainable and is something I am so thankful for.

Friday, September 17, 2010

Proud Mom Moment

Last night we went to a picnic at Zach's school. It was nice to have time to sit and chat with his teacher and one of his aides. It warms my heart to see the relationship they have with him and experience the love they obviously feel for my boy. They are such a huge part of Zach's life and I was glad to be able to talk with them in a relaxed setting. Since I don't get to do the drop offs and pick up's because of work I rarely get a chance to talk with them face to face. Emails and notes back and forth in his backpack can only do so much.

Anyway... on to the proud moment...

His aide says to Chris and I "He is the smartest kid with Down syndrome that I have ever met. And I have worked with a lot".

Can I get an "Awwww"....Or how about a "Hell Yes!"

I could tell she was completely sincere. Like she was saying "this kid is going to do big things, no doubt about it". (For the record... that was not a direct quote from her.. that was just what her facial expressions would have said had they been able to talk)

I have always known my kid was brilliant but I also have limited experience with individuals with Down syndrome so it is hard to know where he falls in comparison. Not that you should ever compare kids but... you know what I mean?

Here is a picture of him from last night working really hard at the hula hoop.

Saturday, September 11, 2010

Project Surf Camp

I have been behind lately on blogs but did not want to forget to post about this. Zachary had the opportunity to participate in an amazing program this summer called Project Surf Camp. This is an awesome non profit organization that takes individuals with special needs surfing. They operate on donations from participants that are only a fraction of the operating cost but they will never turn a camper down if they are unable to pay. They recently received a grant from Pepsi in the amount of $50,000. Pepsi, instead of buying outrageously priced Super Bowl Commercials, donated $300,000 (that I am aware of, it could be more) to several non-profit organizations across our country. If we were a soda drinking household they would definitely have our business!

Zach was pretty hesitant about the whole thing to begin with. We had to force him into the wetsuit. I knew that once he got out there he would love it. He did great and had a wonderful time. He didn't get up on his feet this year but... he is only 6! We look forward to him participating next year.

Here are some pictures:

"But I no want to wear this!"
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Pre-surf pep talk with my Daddy
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Warmups
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Learning the moves
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Headed out to the waves
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Riding one in
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A picture is worth a thousand words...
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Hi Fives for his teachers
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"This is so fun!"
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Friday, September 18, 2009

Soccer - Season 2

Soccer season is upon us again. This year we decided to go a different route. We thought Zach would do better with peers his own age, rather than a big group of kids all the way up to their late teens. We got him all signed up earlier in the summer. We asked the league if they would let him play in the U5 league. He was only about a month too old but they refused. They said he could only play in U6. No biggie. We went ahead with it. Zach was very excited to start playing again.

We went out to the first practice last week. Zach was excited and ran up to the group of kids. He turned and said "Hi, I Zach!". No one responded. I think they were all concentrating, but still. Zach did well for about 10 minutes, then lost interest. He participated somewhat for the practice but not too much. He didn't quite get the drills they were doing. The majority of the kids on the team played last year so they all kind of knew the ropes, so to speak. After practice there was a kick off party for the season where we picked up jerseys. We pulled the coach aside and told him that we didn't think it was a good fit and maybe Zach wasn't ready. He encouraged us to stick with it and that Zach not listening and his minimum participation didn't bother him. That made me happy. We got his jersey. That weekend was the first game. He did great the first quarter. Just kind of chased the group. I felt really good about it and thought maybe he would fit in. He would be happy just chasing everyone around. He sat out the 2nd (there was a sub). He loved snack time. The 2nd half he wanted nothing to with it anymore. He refused to participate and kept taking off. Chris and I left very frustrated. Not because he didn't play, but because he was so defiant when we tried to encourage him. After thinking about it a lot that day and shedding a few tears, I was convinced that he should finish the season and lots of kids act that way in that age group. I did not want to be a quitter and be the parent of the "special" kid that pulled him out as soon as it didn't work. Zach said he did not want to play soccer anymore.

Practice this week was good for about 10 minutes. He followed the drills well. Then he just refused to do anything again and kept taking off running so one of the coaches was constantly chasing him. It was really frustrating and embarrassing. No other child was doing this and I felt very judged by the other parents. I am sure it was all in my head, but it just didn't feel right. I felt like we were forcing Zach into something he didn't want. The experience wasn't positive and just had me and Chris in a funk the whole evening. I think it also hurt me to hear one of the kids asking their parents "why does that kid keep doing that?". I decided that this is not a good fit. This is not how it should be. It should not be forced. It should not be something that causes us to be frustrated and short tempered for the rest of the evening. I emailed his coach from last season and asked if she would have us back. We got a very excited email back saying to please come back. They have gotten more young kids this year and they are able to split them up into a younger group and older group.

Today we went to practice. It was so refreshing. One of the new players was a boy from Zach's preschool class that Zach just adores. Zach did so much better. And when he didn't want to participate, it was ok. The other kids didn't care. The parents didn't care. Zach got hugs from other players. Several hugs. He never got so much as a "Hi" from a player on the other team. It just felt right. I still feel slightly... guilty is not the right word... but in the back of my mind I feel like we bailed when it didn't go right. But it just didn't seem worth the frustration we were feeling every time we dealt with it. The first game with his old team is tomorrow. I will be sure to update and post pictures.

Sunday, September 28, 2008

Creepy Encounters...

We live in a fairly small community. We see a lot of the same people around town. Sometimes it is nice, other times, not so much. There is this lady. We see her at Farmers Market, and most recently Target. The first time we saw her was probably close to 2 years ago.

Every time we see her, she asks if Zach likes horses. Then she asks "Does he have Down syndrome? I can tell because I am a doctor. He would love my horses." Then she will talk to him and ask if he likes horses. She says that she has 7 or 8 Clydesdale horses and that he would just love them. She always says over and over that she is a doctor. She always swoons over Zach, yet never remembers us or his name, even though she always asks his name.

The first time we met her, we actually were kicking ourselves for not getting her card, and that horse therapy might be a good thing. But every time after that, she got creepier and creepier. The 2nd or 3rd time we saw her, she told us she wanted to open up a $100K trust fund for him and if I remember right, she said something about adopting him. One morning at Farmers they were also having a art/wine thing so we were wandering. She would not leave us alone. The kicker was... she asked me "Was he born with it?" (referring to Down syndrome)... I felt like saying "No, he caught it from another kid", I mean come on, if she was really a doctor, she would know what Down syndrome is and that of course he was born with it!

Anyway, today we run into her at Target. She saw my kids (but didnt really see Zach's face yet) and says "Do they like horses" and then she started talking to Zach. That is when she said "Does he have Down syndrome? I can tell because I am a doctor" ... then she starts asking him if he likes horses and home made chocolate chip cookies. He totally shut down and would not talk at her. Hardly made eye contact with her. Which is not at all like Zach.

Whenever we try to walk away from her, she will follow us and just keep going on and on.

Today it just really got to me. I am not the kind of person to just be rude to her, but I don't know how to get her to leave us alone. She really annoyed me today. On so many levels. I have never hid Zach or anything like that, but for her to make such a big deal about him having DS bugged me. Everyone in the aisle totally turned and looked at him.

If only I could be mean and just tell her to go away. The hard part is, I don't know that she would remember the next time we saw her.

Tuesday, September 2, 2008

First Soccer Practice!

Zach had his first soccer practice on Friday. It was pretty low key and was more signing up and getting things going, then actual practice. We found a really cool special needs soccer league. It was so cute to see Zach all dressed and kicking the ball around. Of course dad was right by his side showing him the ropes.

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Here Dad, this is where you kick it:
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Wednesday, August 20, 2008

Read Me!

When Words Wound by John Franklin Stephens

Stephens is a Special Olympics Virginia athlete and a Global Messenger from Fairfax.


A lot of people are talking about the movie "Tropic Thunder" that opened in theaters last week. One of the reasons that it is being talked about is that the characters use the term "retard" over and over. They use it the same way that kids do all the time, to jokingly insult one another.

The people who made the movie, DreamWorks and Paramount, and many of the critics who have reviewed it say that the term is being used by characters who are dumb and shallow themselves. You see, we are supposed to get the joke that it is only the dumb and shallow people who use a term that means dumb and shallow. My dad tells me that this is called "irony."

So, what's the big deal? Let me try to explain. I am a 26-year-old man with Down syndrome. I am very lucky. Even though I was born with this intellectual disability, I do pretty well and have a good life. I live and work in the community. I count as friends the people I went to school with and the people I meet in my job. Every day I get closer to living a life like yours.

I am a Global Messenger for Special Olympics and make speeches to people all over the country. I once spoke to more than 10,000 people at the Richmond Coliseum. I realize that I am a voice for other people with intellectual disabilities who cannot easily speak for themselves. I thank God that he gave me this chance to be someone's voice.

The hardest thing about having an intellectual disability is the loneliness. We process information slower than everyone else. So even normal conversation is a constant battle for us not to lose touch with what the rest of you are saying. Most of the time the words and thoughts just go too fast for us to keep up, and when we finally say something it seems out of place.

We are aware when all the rest of you stop and just look at us. We are aware when you look at us and just say, "unh huh," and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you. That is why I love being a Global Messenger. I work for days telling my dad what I want to talk about and he tries to write it down for me. Then we do it over and over until we have something that says what I mean. We wrote this letter the same way.

So, what's wrong with "retard"? I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the "in" group. We are someone that is not your kind. I want you to know that it hurts to be left out here -- alone. Nothing scares me as much as feeling all alone in a world that moves so much faster than I do.

You don't mean to make me feel that way. In fact, like I say in some of my speeches, "I have always depended on the kindness of strangers," and it works out OK most of the time. Still, it hurts and scares me when I am the only person with intellectual disabilities on the bus and young people start making "retard" jokes or references. Please put yourself on that bus and fill the bus with people who are different from you. Imagine that they start making jokes using a term that describes you. It hurts and it is scary.

Last, I get the joke -- the irony -- that only dumb and shallow people are using a term that means dumb and shallow. The problem is, it is only funny if you think a "retard" is someone dumb and shallow. I am not those things, but every time the term is used it tells young people that it is OK to think of me that way and to keep me on the outside.

That is why using "retard" is a big deal to people like me.

Monday, August 18, 2008

Emily does it again....

The new movie Tropic Thunder is making huge waves in the special needs community. It is demeaning and just all around wrong.

Emily, mama of the Lovely and Amazing Emma Jayne wrote a phenomenal piece on her thoughts of the movie. It is a wonderful read. Every word of it.

Please click here to read it.

Monday, August 11, 2008

Please do not see this movie!!!

“Tropic Thunder” is a comedy produced by DreamWorks/Paramount, and directed and written by Ben Stiller, who also stars in the movie.

Please read the article here and please do not see, or allow your loved ones, to see this movie!!!!


Here is another great post about how terrible this movie is. I really hope this letter does make it to Ben Stiller.

Sunday, July 6, 2008

Zachary's Birth Story

Lately I have been wanting to put my memories of Zachary's Birth on "paper", so that the memories are documented somewhere forever, other than my mind. 4 years have gone by and I don't want to forget anything from that joyous time.


My due date for Zachary was originally June 20th. When I switched OB's at the beginning of my pregnancy, she changed it to June 19th according to her calendar. I always used June 20th because that year, June 20th was Fathers Day and that was just cool to me. It dawned on me recently that being that 2004 was a Leap Year, that is probably why the day was off one day.

I was convinced that Zach would come late. After all, all first baby's come late right? He always measured a couple weeks behind as well. I stopped working sometime in late May, more out of laziness than necessity. I had everything washed and ready to go. His room was perfect. All his clothes were organized and clean as can be. I read all the books. I never touched coffee, or any of the other horrid things they tell you to stay away from when you are pregnant.

We went to the childbirth preparation classes at the hospital I was going to deliver at. We didn't pay attention as much as we probably should have. Part of my Birth Plan was that I was going to get the epidural. I said I would try for natural, but deep down, I knew I would get it.

Thursday June 10th I started having contractions. They weren't too intense or regular, but continued over the next couple days. Saturday morning (June 12th) I woke up around 1 or 2am and sat up. I thought I was going to either throw up or pass out. Everything was spinning. I woke Chris up. He was concerned. Asked if we should go to the hospital. We called the on call doctor at my OB. I told her I had been having contractions for a couple days and how I was feeling.She told me that I was just reacting to the pain of the contractions and it was nothing to worry about. To come to the hospital if the contractions get at least 1 minute long and 3-4 minutes apart. I went back to bed. It wasn't easy. Every time I put my head down on the pillow or turned to the side, everything spun.

The next morning we got up early because Chris had a soccer tournament up in San Francisco. He had been looking forward to this tourney for months. He told me he wasn't going to go. I told him he was. I was fine and he should go. He got ready. I went downstairs to the couch where I planned to spend my day. Everything was still spinning. Chris went and told our neighbor what was going on with me and that if I had any problems, I may come over. She was having a garage sale and would be outside all day anyway. I called my mom who starting packing her bag to come up. She was convinced it was almost time. My grandmother came by to check on me and we sat and talked. I was still having contractions, but no better or worse than they were on Thursday. My mom arrived Sunday.

Monday morning, June 14th, my mom came over after Chris had gone to work. All I really wanted to do was lay around but she made me get up and shower and go out with her. We went and had breakfast. The contractions were getting worse. After breakfast, we went to the store. My mom stocked our freezer full of meals while I was in the hospital, so we were getting all the food for her to cook. At the store, I was having to stop and really breathe through the contractions. We got home and I finally started timing them. Chris got home from work about 5:30pm and when he walked in the door my mom said "We're having a baby tonight!". We both kind of rolled our eyes at her. I was still convinced Zach would be late and we still had 5 days til his due date! We ate a huge dinner. Steak and baked potato. My mom went back to my grandmothers for the night. Chris and I went for a walk. I was stopping every couple minutes for contractions, but still nothing that I felt alarmed about.

We were sitting on the couch and about 9:30 I started crying a little bit. The pain was bad. Chris said "let's go, we are going to the hospital"... I said "no"... in my head, this couldn't be real labor, yes it was painful, but it had to get worse than this. And, we had been timing and recording my contractions for hours and they never got to where they needed to be. One would be 90 seconds long, the next would be 30 seconds long. One would be 1 minute apart, the next would be 5 minutes apart. They weren't as consistent as they said in the class! In my head, I didn't want to go spend hours at the hospital getting checked and monitored, just to be sent home and then Chris would be tired the next day. About 9:45pm I had to go pee. When I wiped, there was a little bit of pink on the toilet paper so I thought maybe we should head to the hospital. I finished packing my bag and we hopped in the car. We had a nice drive over. We joked about how they were going to either send us home, or hook me up to pitocin to speed things up. I called my mom as we were driving over. Told her I would update her but that it probably wouldn't happen tonight.

We got to the hospital at about 10:45pm on Monday night. Went to the desk and told them I was in labor. They got me in a room and checked me. The nurse said I was 5-6cm. But she wasn't positive so she had another nurse check who said I was 6-7cm. I told them I wanted to put my order in for an epidural right then. Lucky for me, it was shift change, so yet another nurse sticks her hand up there. She also agrees with the 6-7cm estimation. We call my mom and tell her to come. It was going to happen tonight. The pain was getting really bad and the contractions were really close together. Probably around 11:30 or so my doctor broke my water. Then they were really bad. The nurse told me there was an emergency so the anesthesiologist had to go there first and would come to me next. I was screaming and crying. Chris told me to concentrate on my breathing like we learned in the classes. I told him that "the f*#$ing breathing didn't work"!! Everything was still spinning if I put my head on the pillow or turned my head to either side.

Jesse James was on Jay Leno.

The nurse came in again and I asked her where the drugs were, she said he would be there as soon as he could. I told her to promise me that I would get it. She promised. Around 12:30am the anesthesiologist finally showed up. Chris said he was going to get my bag out of the car, he was not going to watch them put a needle in my back. The drug guy asked how far along I was. They checked me. She told him 10cm. He picked up his stuff and said he wasn't doing it. My nurse looked at him and said "you don't understand, yes you are". They made me sit on the side of the bed and push out my back. I asked if I could lay down while they did it. The contractions hurt too bad to sit that way. He said No. I sat up. He wiped my back down and I felt the urge to push and I told him to just go away. Chris came back and I was in pushing position. Told him I couldn't get it. I pushed a couple times and they saw the head. The doctor wasn't there yet so they told me to stop pushing. "Are you f*#$ing kidding me? Stop pushing?" They held my legs down so I couldn't push. A couple minutes later and the doctor was there. I don't remember how many pushes it took, but I would bet it was less than 10. I wanted to feel his head as he was crowning, just like all the moms did on "A Baby Story" that I watched way too much of while I was pregnant. Everyone in the room freaked out when I reached down there. They (especially my mom) seriously thought I was going to try and rip him out. To this day that is what she thinks.

At 1:18am on Tuesday June 15th my baby boy had arrived. He was a perfect 7 pounds 9 ounces, 20 1/2 inches long. They lied him on my chest for a minute and then took him over to the warmer. I think I heard the nurse say his Apgars were 8 and 9, but I honestly don't remember. Chris went over with him and watched all the fun cleaning stuff. He still vividly remembers them sticking a tube into his lungs and suctioning things out. I am glad I didn't see that. We got to hold him for awhile in our room and take pictures and then they took him to the nursery. Proud daddy never left his side. They did his bath and foot prick and all that other right out of the womb stuff.

Once they brought him back in to me it was probably 4am. Chris fell asleep on the pull out chair. I just sat and looked at him and talked to him. We tried to nurse but we just couldn't get it. I told him we would try again later. He lifted his eye brows at me, as if to say "ok mama". He was asleep. I just stared at him. I remember thinking his eyes looked funny. I figured I just didn't know much about newborns and they all looked that way. I slept for a little while with him in my arms.

The day was beautiful. We had lots of visitors. Everyone oooh'ed and aaah'ed over him. I was in no rush to go home. Tuesday night he stayed in our room with us. Wednesday morning they thought he looked a little jaundice and they were going to put him under the bili lights. I was upset, but they assured me it happened all the time. Wednesday morning he also had his circumcision. His pediatrician came in and told us he did great, slept through the whole thing. I still had the spins and finally a doctor said it was likely that I had Vertigo and he gave me some nasal spray. It didn't help and didn't go away for about 2 weeks, but it didn't much matter anymore. Late Wednesday evening they told me that the jaundice was getting worse and they wanted to keep him under the lights overnight in the nursery. I was distraught. I couldn't believe that something could be wrong with my baby and he had to stay the night away from me. I cried. A lot. My mom and grandmother were there and told me it was going to be ok and that it happened all the time. We tried in the nursery to nurse and we still had no luck. They had me pump. The nurses couldn't believe how much milk I had. At least he was going to be able to drink my milk.

Thursday morning, after his pediatrician did her rounds and checked on him in the nursery, she came in to talk to us. She said his circumcision looked great and was healing nicely. She said that his jaundice was not improving, but not worse. She said she heard a slight heart murmur and was having the pediatric cardiologist come see him later that day. As she walked out the door to leave, she said "we are also running some tests because we have noticed some features..." With that, she was out the door. EXCUSE ME??? We yelled after her. She came back in. "Features of what?" "Down syndrome...... a social worker will be coming to talk to you" "What features?" From what I remember (at this point I had gone partially deaf and completely numb) she told us he had features such as the heart murmur and Asian looking eyes and since neither of us are Asian, it was cause for concern. With that, she was gone.

I cried. I just wanted to go to the nursery and see my baby. My precious baby that this crazy woman was saying these cruel and obviously wrong things about. I had to go see him. He was perfect, how could they think anything other than that?

I remember saying that I did everything right, which I had. In my head, I thought it was impossible and she had to be wrong. After all, my tests all came back "normal". I felt guilty for possibly giving my husband this damaged child. I thought he would hate me for doing this. I apologized. I said that I would go through that painful labor 10 times over just to take this away.

I have never said this out loud to anyone, but I remember thinking 'what would happen if I just walked out of here and never looked back, would people just forget that I was ever pregnant, could I ever forget'. That feeling lasted maybe 3 seconds. It was never possible, but something that did cross my mind.

Zach got to come into our room for awhile before going back under the lights in the NICU. While he was in there, my OB came by to check up on me. I was still crying. I told him what they told us. He looked Zach over and said there was no way he had Down syndrome. He looked for the Simian crease , which Zach does not have. He looked for a few other things too. I valued his opinion, after all, he had been delivering babies for probably close to 40 years. He would know right?!

They told us that it could take 2 weeks to get the chromosomal testing back. The head doctor of the NICU called in a favor at Stanford to get preliminary results as quickly as possible.

Because I was being discharged on Thursday, they had to move him to the NICU. I guess a baby can't stay in the nursery after the mom is discharged. The wonderful nurses let me stay in my room until late Thursday night. It wasn't busy and my insurance pays for 2 days.

We met with the cardiologist who pointed out more features. Every one of them I had an excuse for. Heart murmur, Chris has a heart murmur. Sandal gap, Chris must have weird toes. Slanted eyes, Chris has fairly small eyes. This brilliant gentle man pointed out imperfection after imperfection and I fired back with excuses. After the cardiologist was done examing Zach with his portable ultrasound machine, he talked to us for awhile. To be honest, I don't remember much of anything he said. I was in such a fog by that point.

The nurses in the NICU told us there was a parent room that we could stay in that night since I was being discharged. We went back and cleaned up our room and I was discharged. We had decided we would run home, shower, eat dinner, get some clothes and come back for the night. They put me in the wheelchair and had to wheel me out of the hospital. Without my baby. I sobbed the whole time. That was the most painful thing I had felt. The pain of labor didn't even stand a chance against the pain I felt in my heart. I felt like a failure. I felt incomplete. I felt empty.

We came back to the hospital and sat with him. We couldn't hold him too much, only for feedings. He had to stay under the lights. We did his feedings every 3 hours. I pumped every 3 hours. We changed his diapers through the holes of the incubator. That took some getting used to. We slept on pull out chairs in the parent room. Try that after giving birth!

Friday was about the same. Feeding and pumping. Stayed in the parent room.

Saturday morning Chris' dad and step mother arrived. We were all in the parent room when they called us into the NICU. The doctor told us what I think we already knew at that point. His tests were back. He does have an extra chromosome. I remember her saying that if you were going to have a child with a disability, this is the one you want. There is so much they can do, but he will never play any kind of contact sport. That was all I heard her say.

We walked out of the NICU doors and instantly embraced each other and just sobbed. For a long time.

At that point, we just wanted to take our son home. We had been waiting on blood tests to see if his jaundice levels were good enough and lucky for us, they were. Saturday afternoon we finally got to pack him up and take him home, on his due date. We spent our first night at home, as a family. We woke up the next morning and Chris got to spend his first Fathers Day home with his son.

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Zach in the NICU with his shades on:
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Friday, May 9, 2008

Differences

As Hannah has gotten older, it really makes me realize how different raising her is, than it was when Zachary was a baby. Of course there are lots of similarities, he is after all a child before anything, but it is different. Not bad different. Not good different. Just different.

When Zach was small, he/we had to work at everything. Things didn't come naturally to him the way I see they do with Hannah. Things I see her doing, I had to really sit and work with Zach, and show him and teach him how to do these things. I love(d) working with him. I am so grateful I was able to stay home with him that first year. I think I am a better person for having him. He has taught me that you don't take little things or accomplishments for granted.

Looking back, I am really glad he is my first born. As much as I think it would be nice to have an older sibling to stick up for him and for him to look up to, I think, as a parent, it was better that I was blissfully unaware of how "typical" babies developed. To me, it was all just normal. I think if I had other kids that I had seen through their first year where so much is going on, it may have made me sad. Sad at all the things he wasn't just doing on his own. Sad at the things he did slower. Sad at the time I would have had to take away from him or his siblings to give the other my attention. He had all my time and attention. He was my only priority. He taught me how to love unconditionally.

Friday, April 25, 2008

Palins' child diagnosed with Down syndrome

I especially love the email she sent out to family and close friends.

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FAMILY FEELS BLESSED: Back at work already, governor says she wasn't in labor in Texas.

By LISA DEMER
ldemer@adn.com

Published: April 22nd, 2008 01:11 AM
Last Modified: April 22nd, 2008 12:05 PM

Gov. Sarah Palin was back at work Monday in Anchorage, holding a meeting on the proposed natural gas pipeline three days after giving birth to her fifth child.
She and her husband, Todd, showed their new baby, Trig Paxson Van Palin, to a few reporters and photographers and answered questions about his condition and the sooner-than-expected delivery.

Trig has Down syndrome, a genetic abnormality that affects a child's intellectual and physical development, the governor confirmed.

"When we first heard, it was kind of confusing," Palin, 44, said. She called the revelation "very, very challenging" and said she initially felt sad.

But the family has worked through that. Palin said she and Todd feel blessed and chosen by God. With a big family including four older kids, grandparents, aunts and uncles, Palin said, they will have lots of support for what's ahead. In their eyes, she said, "he's absolutely perfect."

The oldest Palin kid, Track, is in the Army and texted his mother after learning the news with something to the effect of "This is just so cool -- I finally got my brother."

In a letter she e-mailed to relatives and close friends Friday after giving birth, Palin wrote, "Many people will express sympathy, but you don't want or need that, because Trig will be a joy. You will have to trust me on this." She wrote it in the voice of and signed it as "Trig's Creator, Your Heavenly Father."

"Children are the most precious and promising ingredient in this mixed-up world you live in down there on Earth. Trig is no different, except he has one extra chromosome," Palin wrote.

As for people who think a baby like Trig shouldn't even be born, look around, the governor wrote. Who is perfect or even normal?

Monday, April 21, 2008

Best Post Ever

I have been blessed to "meet" some fabulous people in the Trisomy 21 community. Without them, some days I don't know where I would turn. One person in particular I have always been fond of. Maybe it is because when I found the online communities, her daughter was very close to Zach's age and she is such an intriguing person.

If you ever want a great read, check out her blog about her beautiful daughter ...... the Lovely and Amazing Emma Jayne

Anyhow, the reason for this post is that I came across one of her posts that I just love. The "R" Word. Please read this post. I could have written this. Every word of it. If I was a brilliant witty writer of course.

Friday, March 21, 2008

World Down Syndrome Day

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Today is World Down Syndrome Day. The date was chosen to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21st chromosome and is used synonymously with Down syndrome.

Down syndrome has taught me so much about myself and what I am capable of, as a parent and a person. I have learned so much about love, compassion, pride, and patience. I am so thankful that I was chosen to be Zach's mama.

Thursday, December 27, 2007

out of the mouths of the ignorant....

Last week when I took Zach to the doctor to have his tongue looked at, the nurse that was checking us in the room said:

"I bet that happens to a lot of Down syndrome's since they always have their tongues hanging out"

Now let's pick apart this statement. First of all, my son is a person, he is not a "Down syndrome". Second of all, that is pretty stereotypical to state that 'they all' have their tongues hanging out.

I just didn't know what to say, so I said nothing. Sometimes I feel like I don't always want to be the over sensitive mom who has to educate everyone. And in that moment, I was at a loss for words. I should have educated her, and advocated for my son and for all other special kids she may come across in her field, but I was just floored by the statement.

I hope one day this world is educated enough to not stereotype a person based on a diagnosis, or a difference. Seems like a long shot, but I can always hope and dream, right?

Monday, August 13, 2007

Never Say Never

This is a wonderful article that I wanted to share. Enjoy!!

http://grandparents.com/newsletter-archive/51-web.html

Photo Sharing and Video Hosting at Photobucket

By Beverly Beckham

"The tooth is missing. It will never come in. Missing teeth are common among children with Down syndrome," the specialist told my daughter and son-in-law months ago.

He didn't cushion his words. He didn't say, "May not." He said never.

And then last week, there it was - a lower right lateral incisor, next to her lower right central incisor, exactly where it belongs.

"Well, what do you know, Lucy Rose," I said standing all 35 inches of her in front of a mirror. "Look at what you have - a brand new, shiny, white tooth!" I called my daughter at work. "I know," she said. "I saw it this morning. Can you believe it?"

I can now. Because it is here in front of me. But I thought never, too. Because the specialist said. And once again, I believed someone I shouldn't have, someone who doesn't know Lucy.

She will never walk.

He will never speak.

She will never go to college.

She will never have a full set of teeth.

When you have a child with special needs - with Down syndrome, with autism, with diabetes, with muscular dystrophy - with anything that's chronic and defies a cure - you hear "never" all the time.

Doctors say it. Strangers think it. And it rubs off.

It's what we thought - Lucy's mom and dad, grandparents, aunts, uncles - in the beginning after Lucy was born and doctors and nurses looked at her, and us, with a "There, but for the grace of God, go I" in their eyes. It's a great misstatement, this phrase, a huge spiritual falsehood because it means that God withholds his grace from some people and bestows it on others, who are then spared from tragedy.

This isn't true. God doesn't withhold grace. In fact it was through the grace of God that Lucy came to us.

Lucy, who is almost four now. Lucy with her new front tooth. Lucy who has surprised doctors and keeps surprising us.

She made a joke the other day. We were in the kitchen and the window was open and I said, "Listen to the birdie, LuLu," because something was crowing madly in the back yard. And Lucy, who has heard me tease, a million times, that a cow says oink and a pig says meow - (And then she corrects me, because she knows it's a game) - looked me straight in the eyes, shook her head and said and signed "Mouse."

Mouse. Not bird. See how clever I am, Lucy was saying.

She is clever. And resourceful. Two days ago, she was trying to tell me something about a rainbow and was signing and saying "bow" over and over. But I wasn't understanding. So I was guessing. "Cookie? Ball? Outside? Plane? I don't know, Lucy. I'm sorry. I'm not getting it."

And instead of screaming in frustration or giving up - she never gives up - she sat still for a moment. Then she hopped off the couch, walked over to the TV, opened the cabinet door, riffled through about a dozen DVDs, found the one with a rainbow on the front and handed it to me.

"Oh! Rainbow!" I yelled like a contestant on a game show who through no skill of her own wins first prize.

"Yes," Lucy said. Then she hugged me and forgave me my incompetence and smiled.

Pre-natal tests target children like Lucy and doctors apologize when children like Lucy are born. Lucy is a child the world would choose not to have. Foolish, foolish world.

She will never do all the things that typical kids do. That's what the experts say. What they fail to mention is all that she will do.

I read this on a website recently and copied and pasted it in my journal. "Common characteristics observed in [people with Down syndrome]: natural spontaneity, genuine warmth, penetrating clarity in relating to other people, gentleness, patience and tolerance, complete honesty, and the ability to engage in unfettered enjoyment of life's gifts."

I watch Lucy and her unfettered enjoyment of life's gifts. I watch and I learn from my first grandchild, who is life's gift to me.


. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .


Beverly Beckham is an award winning columnist who writes for the Boston Globe. But she is better known as Mimi to her three grandchildren, Lucy, Adam and Charlotte.

Friday, July 6, 2007

Great Article....

I especially love this line...

Do your part. Don't stare. Say hello. Be inclusive. And when you want to insult someone's intelligence, remember to use a different word.

http://blogs.usatoday.com/oped/2007/07/a-mothers-view-.html


A mother's view of a word that wounds: 'Retard'

By Theresa Howard

You are such a retard.

You've heard the expression. Sometimes it's preceded by an expletive, as in "you're such a f—-ing retard." Either way, with or without the curse word, it's a harsh statement. But one, it seems, that's become increasingly acceptable. So much so that in one recent week I kept track of how many times I heard it and who said it. I heard it daily — whether it was a colleague, a neighbor talking to his dog, an actor from a hit TV show during an interview with me, a top level advertising executive, young men playfully swapping insults or Tony Soprano to his son after a botched suicide attempt.

Last year, the r-word was in the title of a Two and a Half Men episode It's a word that, unlike "pimp" or the n-word, is always derogatory. For reasons that I can't understand, pimp has become synonymous with style. The n-word, for a handful of African-Americans, is a term of endearment — until someone outside the circle uses it. Then it becomes derogatory.
But no matter how or by whom the r-word is used, it's always in a negative context. You don't hear, "What a great idea, that's so retarded." You don't hear, "Awesome catch — what a retard move."

While some are advocating that the n-word be banished from America's lexicon, who is the voice for the 7.5 million Americans with intellectual disabilities who truly are mentally retarded? Who is defending their dignity while everyday folks — educated adults at that — take a term that clinically applies to the disabled and use it as an insult?

What's my fascination with the r-word? I take it very personally. And I'm not a person who is easily offended. I am, however, the mother of a 6-month-old daughter who was born with Down syndrome. Lydia Catherine is sweet. She's got a warm smile and very knowing blue eyes. She's got a subtle little dimple and a tiny tuft of strawberry blonde hair that swirls into one single swoop into the air.

When she looks at me, I feel like she can see all the fears, concerns, doubts and questions that swim around in my heart and my mind every day. Will she be smart enough to know when she hears people say the word "retard" that they are talking about her?

This is not new territory for me. I grew up the sibling of a Down syndrome sister. Catherine Anne was 41 when she passed away four years ago. She was born at a time when "mongolian idiot" was the operative term, and doctors suggested to my parents to leave her behind and she'd be taken care of. It really meant she would have been institutionalized. They didn't listen. Catherine lived with my parents until the day she died.

For as long as I can remember, I corrected people when they said the r-word. I flashed dirty looks to people who stared. I told parents to tell their child that it's not polite. Ever gregarious, Catherine would smile at strangers, many of whom would be so uncomfortable that they didn't know what to do. Even after Catherine passed away, I continued to correct people for a few years. Then I got tired. I no longer felt it was my battle.

Until Dec. 10, when Lydia was born. My journey has begun all over again, this time with me as the mother and my older daughter, Sofia, as the sibling. If I was protective of my sister, I am almost scared of how protective I will be for Lydia and her own sister. But as she grows up in a time when "retard" is a socially acceptable slur, professional organizations are trying to change the clinical term. Last November, the American Association on Mental Retardation changed its name to the American Association on Intellectual and Developmental Disabilities. The Special Olympics is advocating that "retarded" be dropped from the vernacular.

Fixing the terminology is only a start. The bigger issue is acceptance of people with disabilities.
Do your part. Don't stare. Say hello. Be inclusive. And when you want to insult someone's intelligence, remember to use a different word.

Theresa Howard is an advertising reporter for USA TODAY. She lives in Hoboken, N.J., with her husband, Peter Baracskai, and their two girls.
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