Just when you think things can't get worse....

I haven't posted much lately. I haven't had anything funny, witty or inspiring to say. (I know, I know... you all are thinking that I NEVER have anything funny, witty or inspiring to say). Chris gave me the green light to let people know what is going on.. so here goes...

The last time I posted about Chris was when he had the loop recorder inserted. Last week he went and had the data "intercepted" as they call it. His cardiologist called on Friday to let us know the details. In the 3 week period since he had it placed, his heart stopped at least 85 times. For 4-5 seconds each time. Completely flat lined.

Eighty. Five. Times.

Now, count 5 seconds. One one thousand. Two one thousand. Three one thousand. Four one thousand. Five one thousand. Now imagine that whole time your heart didn't beat.

Doesn't seem possible, right? But ya, that is what is heart is doing. An average of 4 times a day. And generally it is not when he is sleeping.

His cardiologist also informed us that he needs a pacemaker and he needs it sooner than later. If he does not agree to have it done before Christmas time, he will report Chris to the DMV and have his drivers license pulled. He referred us to another cardiologist in his practice to discuss the procedure since he does not place pacemakers himself. After a long weekend of emotions and discussions we decided to wait and see what the doctor we are referred to says. We met with this doctor on Wednesday. He studied all the data and shows us the scans where you can see his heart stop. I asked him if he agrees with the time frame that Chris' cardiologist gave us which was before Christmas. He said that is being very generous and that it really should happen this week. Being that Chris is still on blood thinners it cant happen just yet. He has to be off those meds for a few days. We are waiting to hear from scheduling to set the date but it could happen as early as next Tuesday.

This is all very hard on Chris because he feels perfectly fine. Doesn't get light headed like they say he should be. The doctor that we met with this week said that isn't abnormal. A lot of people don't feel anything. Until it is too late.

I am really ready to be able to sleep well at night and not wake up in the morning and hold my breath until I hear that he is still breathing. 

I will keep updating as we have information but for now, please say a prayer that he continues to feel good until the surgery can happen and that the surgery is uncomplicated.

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.

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

Thank you Teacher Rhonda. For everything that you do.

Chris' surgery...

Sunday afternoon Chris, my mom and I drove down to the Burbank/Glendale area and got checked into our hotel. Took part in the hotels complimentary happy hour and then took a walk to find dinner. After that we called it and night and we all went to bed. Monday morning we were to report to the hospital at 10am to get checked in and for things to get going. When the hospital called me on Friday to go over the pre-admitting stuff, they also informed me that he was scheduled for a transesophageal echocardiogram, or TEE, at 12pm. They also needed to do pre-op lab work.

We left the hotel at 9am, not knowing what to expect from LA traffic. We made it to the hospital fairly quickly and the thoughtful guy Chris is, he went and filled the van up with gas so we didn't have to worry about it when it was time to make the drive home. We parked at the hospital and headed in to find admitting. We got through admitting about 9:30 and the guy who did all our admitting paperwork walked us to a lobby and told us to wait there and someone would come get us. We waited a very long time but there were also others who were there for tests and what not who had been waiting over an hour so while we were annoyed we didn't think anything of it. At 10:50am my cell phone rang. It was a nurse from the Short Stay area calling to see where we were. Once we rushed to where we should have been all along they got things going. The drew his blood, started his IV and got him hooked up to the monitors. They explained that the doctor performing the TEE wanted the blood work back before they could proceed so they were rushing that process. Things were moving right along and on schedule to start the TEE at noon. The specialist doing the surgery came in around 11:45am to check in with him. Shortly after they informed us that his blood work had been lost at the lab and they would be coming to re-draw it. They called the doctor doing the TEE and let him know things would be delayed about an hour. Shortly after, they found the blood. It had gotten stuck in the tube between the nurses station and the lab. By this time the doctor had already delayed getting there for the TEE and the specialist doing the surgery was not happy. Blood results were finally in and they inform me that they are going to do the TEE and then take him right in for surgery so it would be about 4 hours or so until the doctor came to talk to me.

We decided to grab some lunch while we waited but first we were going to unload some of the stuff we had in the car. We had a laptop, Chris' PSP, magazines, etc. Too many things to be dragging around the hospital that we weren't utilizing. We asked a nurse where the cafeteria and she explained that they had some food for sale but that their main cafeteria was under construction. We decided that since we had so much time, we would leave and grab some lunch and come back. We paid the $6 daily max for the parking garage. The parking garage that does not have in and out privileges. I drove around for a bit and found an El Torito. It was packed but we went for it anyway. We sat down and decided on their lunch buffet. The server came by and informed us that it was $3 Margarita Monday. Yes Please! I took a couple sips and it was heavenly. Cheap low quality tequila was just what I needed to take the edge off. I told my mom I felt guilty for not being at the hospital but admitted that it was a great distraction. I was getting a plate of food when my cell phone rang. I stepped outside to take it since it was really loud and crowded (It was $3 margaritas after all). It was the hospital. The nurse was frantic asking where I was. Long story short... they forgot to have Chris sign the consent form. FOR THE SURGERY. And being that he was already sedated he could not sign it. So I needed to sign it. And they couldn't start the surgery until I signed it. I told her I was on my way. I went back inside to tell my mom and decided that I couldn't have been very far from the hospital and I wasn't going to deal with parking and leaving again so I decided to jog/walk back to the hospital. I grabbed my handy IPhone, pulled up my GPS, and took off. It was a little less than a mile away. I probably made it back faster than I would have driving. As I am walking in the hospital my phone is ringing again. It is one of the doctors in the cath lab looking for me. Because... you know... Chris is LAYING ON THE TABLE. I sign the form. Asked 5 times if there is anything they could possibly need for me to be there for and walked back to lunch.

We finished up pretty quick and got back to the hospital. We expected to wait another 2+ hours to hear something so we set up camp in the waiting room. Shortly after someone called the volunteer desk to ask if anyone was there for Chris. I got a sinking feeling in my stomach. The doctor came out and sat down to talk to me. He explained that they were not able to do the ablation. He said, several times, that Chris' heart is "very abnormal". When they went in they shocked his heart back to a normal rhythm and his heart rate was low, which I could have told them would happen. Then he started looking around and he explained that all of the electrical currents in Chris' heart reacted very abnormally when he went near them. Because of that he did not feel comfortable doing the ablation because he felt there was no way he would have gotten off the table without a pacemaker and at his age they obviously want to do everything they can to avoid that. He called Chris' local cardiologist and discussed what was going on with him and they both decided that they wanted to implant a loop recorder. Basically what this does is record every beat that his heart makes. It is not attached to his heart the way a pacemaker or a defibrillator would be. Every so often he will check in with his cardiologist who will download all the information and can see exactly what his heart is doing at all times of the day. Chris has always had a pretty low heart rate but they want to see what is going on at night. This will hopefully buy him at least 5+ years without needing a pacemaker. Because Chris was sedated and could not consent to this procedure they could not do it until the following morning. I was finally able to see him a couple hours later. He was starving and uncomfortable. He had to lay flat on  his back for hours after they surgery because of the incision sites. They went in on both sides of his groin so he was pretty uncomfortable and had to have 10 lb sandbags on each incision site to help the blood clot. After feeding him some dinner I called it a night.

At 7:30 am this morning they placed the loop recorder. It was a fast procedure and Chris was awake through the whole thing. Afterward he had to be watched at the hospital for about 5 hours and then we were able to come home. His chest is really sore and it is hard on him to not be able to pick up the kids and we have to constantly remind the kids to be gentle with daddy. Zach and Chris rough house quite a bit so it is hard for Zach to understand and I feel like we are constantly on edge that he is going to charge Chris with a slam hug. We will followup with Chris' local cardiologist later in the week and talk about where we go from here.

The latest with us...

I completely failed at hitting 31 for 21. I think I barely hit half. In my defense, I have had a lot going on and I really feel that I succeeded in my mission. I think I truly raised awareness and helped educate people on Down syndrome.

Now on to my excuse as to why I failed...

The last few months have been a challenge, to say the least. The time has finally come to update blog world on what is going on.

For those of you that don't know my husband, my 37 year old husband, had a stroke. Ever since then, we have been consumed with doctor appointments, decisions, and lots of stress. After the failed attempt at converting his heart his cardiologist referred us to an electrophysiologist to talk about surgery.  There are no electrophysiologists in our county. Our HMO referred us to a doctor in the Los Angeles area which is about 3.5 hours away from us. We traveled down there a few weeks back and met with the specialist who informed us that he needs the surgery and he needs it soon. The surgery that he needs to correct his heart abnormality is a Cardiac Ablation. On top of that, he also informed Chris that he needs to be prepared for a pacemaker. He said there is about a 95% chance that he wont need one, but that it is something that is a possibility. In the state that his heart is in, for a guy his age, he should have a heart rate close to 200. His is in the 70s. The fear is that when they correct the abnormality and get his heart beating in a normal rhythm his heart rate will be so low that a pacemaker will be necessary. Which is exactly what happened when they did the cardioversion back in August.

After many phone calls and schedule changes we have a date. Chris' surgery will take place next Monday November 8th. Anyone that can spare positive thoughts and prayers, please send them our way that he wont need a pacemaker and that the surgery will be successful.

Happy Halloween!

This year Zach insisted on being Dance A Lot Robot and Hannah wanted to be Jessie. I am so thankful I know a very talented woman!

Frugal Halloween

A wonderfully talented friend made the kids costumes again this year. Pictures of those to come after Halloween. The one thing I needed for Hannah's costume was a hat for her Jessie costume. Online they sell for around $12-$15 plus shipping. And, they have been out of stock everywhere for months. A friend of mine told me she saw red cowboy hats at the Dollar Tree. I picked one up and tonight attempted to make it look like Jessie's with the white string weaved around the edge. It is not perfect and there are a couple differences from the "real Jessie". I am pretty happy with how it came out and the total cost was A DOLLAR!

Supplies:

• Red hat from Dollar Tree

• Black Sharpie to mark spots for holes

• Ruler that I found in the kids crayon box

• Hole punch

• Clean white shoe strings that Chris had (which can still be used since I did not cut them)

• Jessie doll for inspiration

Bullying

Never have I had such a fire in me to write about something that is on my mind yet my words do not seem to do my feelings justice. Please bear with me, I hope at the end of this to have a point, if not... enjoy the ride.

This morning I was trying to decide what to blog about. I haven't quite met my blog-a-day for the 31 for 21 and I really wanted to post something today. I came across a post with this link. I thoroughly enjoyed reading this article for many reasons. For one, we live in a small town and I have always had this dream in my head that if we stay in this town that Zach will be known, accepted and loved in our community. Two, the peer advocates is an awesome program that I just might be writing a letter to our school district about. 

Back to my first point. At Zach's latest IEP one of the biggest points I stressed, and that mattered most to me, was inclusion. Zach is in a special ed class at his school and having integration with the "regular" 1st grade class is something that is at the top of my priority list. I know a lot of parents who have kids with IEPs read this and might feel I am short changing him when it comes to the academic goals but of course that is not the case. I have such faith in Zach's IEP team that I knew that would not be something I needed to be worried about. They've got his back. When Zach meets goals before the dates we have set, they are the first ones to set new goals. Anyway, back to my point.... inclusion... last year it did not happen nearly as much as we'd hoped. A big reason for that is budget cuts and the Kindergarten teachers having close to 30 kids per teacher. I get that, but it doesn't mean I still wont push for more time for my kid. Not only do I think Zach learns a lot from other kids his age... I truly feel that Zach's social skills are going to get him further in life than any other skills he will learn. When Zach is older, I feel that him being able to be active in the community and having a lot of friends will take him very far. Being able to go out to dinner and display manners and be socially comfortable will help him live a fulfilled life. 

Now to talk about my second point. Peer advocates. This is something that should be happening at each and every school in America. From junior high through college. In my naive brain, I cant imagine it would take much, if any, funds to operate. Kids volunteer their time and they have meetings on lunch hours or as an elective class and a couple teachers or parents in the community give their time. Today has been called a day to prevent bullying. Millions of people (I included) wore purple today to support the teens who have recently taken their lives because of bullying. They were bullied because of their sexual preference. Because being a teenager isn't hard enough, now throw into that coming to grips with feelings that are perceived by some as wrong or bad. Now on top of that you are bullied. And not just playground teasing or snickers in the halls when you walk past the cool crowd going to your locker. No, times have changed. Now, even the ones who didn't have the nerve to make fun of you to your face have the anonymity of the Internet. They can cowardly sit behind a faceless computer screen and poke fun at every single thing that you feel self conscious about. And they can post it for your entire school and community to see or read.

I am in no way perfect. I am sure I was mean to someone from time to time. I was bullied for being the fat kid so I in turn bullied someone else to take the attention away from me and to try and make myself feel better. I like to think I was above that but I'm not. It is a vicious cycle. I do know that I was not a truly mean hearted person and I had a conscious so any teasing I dealt out was pretty tame.

Today I read something on Facebook that has bothered me all day and is the epitome of irony. Someone I love posted a reminder last night to wear purple to help raise awareness of bullying and in honor of those who committed suicide. Such a smart young girl to stand up for what she believes in. Right? She got several comments of support and then I read comments from her own flesh and blood, someone who should do nothing but love and support her, about how she got details wrong. Not only was her grammar picked apart, but her interpretation of the message. You could tell by the exchange of words that this is not an isolated incident. It pains me that so many people are disrespected by those who should be their biggest advocates. It is no surprise that people become depressed. I just hope the kind words that were said were taken to heart and she truly knows how much she is loved. And I hope that every other teenager whose family members put them down have someone to turn to for a positive influence.

If every student that recently committed suicide had an advocate in their school to stand up for them, or even just a supportive ear, maybe their family would not be grieving the way they are tonight. Suicide has got to be the hardest form of death to process. I know. My dad committed suicide 6 years ago and it is something I think about every day. It is something that I don't know you can ever fully have closure for. There are always the "what if" questions and the "could I have done something differently"  thoughts. I can only imagine how the parents of these young kids feel. It is senseless. It is unacceptable. 

Be the change that you want to see in the world. 

Unless you are a mean person, then just lock yourself in your house until you have a positive epiphany and please, please... don't pro create.

As heard....

This morning Zach was in his room picking out his clothes for school. He had been in there for a couple minutes so I went to make sure he wasnt pulling all the clothes out of his drawers. He was standing in front of his closet holding 2 shirts. One had a flying baseball on it and one had a stick figure playing drums with the saying "I Rock". He said "Mom... I need help choosing my shirt". I said "well, do you feel like a baseball player today, or a rock star?"... He smiled and said "baseball player"and put the other shirt away.

Love that kid!

Spreading the word... guest blog

I was approached by a friend to do a guest post on her blog in honor of Down Syndrome Awareness Month. She is an amazing writer and I love reading and following her blog Mandyland.

I am completely touched that she wanted to do this. Her and I are both members of our local moms group and while I feel like I "know" her well virtually, we had only met a small number of times. I feel honored and proud that by reading my posts during 31 for 21 she wanted to spread the word about DS as well. I feel like my mission to spread the word is being fulfilled!

Please click here to read our joint post.

I knew it would be ok....

My cousin Danielle is 9 days older than me. Growing up we had shared family birthday parties, "Jeni/Dani nights" and we always got the same birthday and Christmas gifts. We would try to open our gifts at the same time so that we could both be surprised by more than just what color it was. When we were teenagers we went down two very different paths and while we probably wouldn't have hung out in the same crowds if we went to school together, it didn't much matter. If I had to pick any person that I would like to be more like... it would be her. I will never forget when we were all getting ready for her wedding. All of us bridesmaids were stressing about our hair and makeup and getting jitters before the ceremony started. She was the one to calm us all down and to be the soothing presence in the room. I love her dearly.



After Zach was born and we were told he might have Down syndrome, I thought about my cousin Dani and I knew it would be ok.

15 months earlier Dani gave birth to her beautiful baby boy Gabriel Tomas. Gabe came into the world 16 weeks early. He spent as many weeks in the NICU fighting for his life. Nurses and doctors urged Dani to "let him go". As if that was possible. I cant speak for her but I am sure Dani knew that he was meant to live and that this was her child and that was all that mattered to her.

Family and friends surrounded them with love and prayer and eventually they were able to take their sweet baby boy home. Sure he has health problems and has endured hospital stays and surgeries but the number of lives this little boy has touched is immeasurable. I am so thankful that she did not "let him go" because when I was faced with the challenge of accepting Zachary into my life I feel like I channeled her strength and I just knew that it would be ok. I knew that Zach would be accepted and that there would never be a shortage of love for my boy.

I feel like her and I have an even deeper bond than we ever did before. That we get it. We know that we can bounce questions off each other about IEPs or how to possibly make coffee wake us up faster and everything in between. I know I can call her at 6am to ask about seizures and she knows she can send me text messages with pictures of her kids butt to ask if a spot looks like a staph infection. I wish there wasn't 300 miles between us and that we could spend more time together and our kids could create the memories that we have of family dinners and gathering at the grandparents house.

Dani and I have had the unofficial conversation (we really need to get that in writing) that if anything were to happen to Chris and I that her and her amazing husband Omar would raise our kids. I cannot imagine anyone else, with such genuine hearts, that would love and raise our kids the way we would want.

Dani & Omar with Zachary


The boys.... this was possibly their first meeting...


The boys were not happy to be laid down together... this was the best we could do...






I love you Nani Bit Bit!!

31 for 21 ... Single Dad Laughing

The other day I posted a link to a story on Facebook from Single Dad Laughing. I posted this entry that I had read with tears in my eyes. It is inspiring and a great reminder to anyone who spends time with children.

Today I am linking to him again for his beautiful, heartfelt words for his sister, who had Down syndrome. The way he talks about her is so touching and real.

Please take the time to click here and read it for yourself. I don't think you'll be disappointed.

Guest Blogging

I had my first opportunity to be a guest blogger today. I wrote a piece for Babes in Disneyland, a blog I follow written by a mom who is a former tour guide of Disneyland and still a So Cal local who now takes her kiddos there often.

The post was about traveling to Disneyland with a child with special needs. You can read the post here.I hope parents are able to take at least one helpful tip away that could help with future traveling. Anywhere.

I shared the link on Facebook and a friend commented "great tips for EVERYONE!". This comment just goes to show that Zach, and others like him, are more alike than different. I am sure there are lots of other tips and tricks I could have listed on the post but these were ones that came to mind that specifically worked on our trips and it is very true that these tips could apply to many kids. Of all abilities.

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.

Picture Day

Today is picture day at school for Zach. He insisted that he have "spiky hair". I didn't want to do it because that is really not him. We generally never spike his hair and I want him picture to look like... well him. Since last year he hated the whole process of pictures and ended up having teary eyes in his pictures, I decided to go along with it in hopes that he was happier with the picture process.

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.

The R Word

Anyone that knows me knows how much I hate this word and how much it hurts me to hear it. If you don't know why it is terrible and/or want to read a few things about why I hate it so much I have blogged about it a few times here, here and one of my favorites here.

There has been some media lately on this subject and recently a bill was passed to eliminate the term "retarded". (You can read about it here). I have mixed feelings (mostly good) about this that I plan to talk about in a later post.

This change is great news because I hate seeing the term "mentally retarded" all over Zach's education plans. See... Zach does not qualify for services because he has Down syndrome. Zach qualifies because he is considered mentally retarded. (now you see why I hate the word being used as slang?). Technically, someone is classified as "mentally retarded" based off of their IQ score yet Zach has never had an IQ test (could they even do an IQ test on a 6 year old? Any 6 year old?). So the fact that he is assumed "retarded" based off of his extra chromosome really sucks!


Here is where you can help. Don't use the word. Correct your peers when they use it. Don't let your children/nieces/nephews/siblings/cousins use it. I hope that in my lifetime the R word will be as unacceptable as the N word.


Here is one last article by John C McGinley (who has a son with Down syndrome) that is fantastic.

So there. Go. Read... and don't say I never taught you anything!

I leave you with one last video clip. 

Spread the word to end the word!

People First Language

Click here to read a more in depth article about People First Language.

This is something that I feel strongly about and really strikes a nerve with me. I have corrected people and had them roll their eyes at me. Like it is all about being PC and that it really doesn't matter how they word it. But it DOES matter.

My son is not a "Downs child". He is a person. He is my son. He is not defined by a medical term that his genetic make up is labeled as. Yes he happens to carry an extra chromosome. Yes he has Down syndrome. But he is not "a Down syndrome". Down syndrome does not define who he is.

What if you had cancer? Would you be accepting of somebody calling you cancer woman? Or crippled man? I would hope not because that does not define you.

I hope you take the time to read through the document I linked to above and educate yourself. Individuals with disabilities want, and deserve, to be seen as people first and respected as valued members of society.

Buddy Walk

This past June we took part in the 1st Annual Buddy Walk with the Down Syndrome Association of Santa Barbara County.

It was a beautiful day and the location could not have been more picturesque. We are humbled by our generous family and friends that made donations in our names to support our team, Zachtastic.

Zach refused to wear his Buddy Walk shirt but the Superman one he had on was fitting.

Being that it was the first year it was a fairly small group but we look forward to being part of this great group as it grows over the years. 


I didn't take too many pictures (surprising, I know).. but here are a few I did get.




So excited when he got it!



Waiting to do his Home Depot craft



Games!









Hangin' with Smokey


Ice Cream Face!



"Aww mom... don't take my picture!"


(see those palm trees in the background? The ocean is just beyond that. I love where we live!)





The Walk Begins!! 


"Don't worry Dad... I got this!"


Helping Nana pull Hannah in the wagon

Welcome to Holland

Welcome to Holland by Emily Perl Kingsley

©1987 by Emily Perl Kingsley. All rights reserved.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…


When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice Holland has windmills…and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.

But…if you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

As heard...

The other night I was tucking Zach in bed for the night. For the record, it had been 113 that day so it was pretty warm in our house. This is how the conversation went...

Zach: Mama... lay with me

Me: No Zach, it is way too hot

Zach: No mama. It is not hot. The sun went down. I show you. (gesturing towards the window)

Love this kid!

Did you know prenatally?

I get this question from time to time. So, for those of you who have wanted to ask and never did... here goes...

No. We did not know prenatally. I am glad we did not know. Before we had the prenatal testing we discussed what we would do if the tests determined there was a problem. We both agreed we would do nothing and we would continue with the pregnancy and love the baby regardless. I am sure that is what most people say before they go in for prenatal testing. Before they are faced with facts and statistics. Before they are asked by presumptions doctors "when should we schedule the termination?". Before they are painted worst case scenario pictures as the norm. The truth is... I don't know if we would have continued the pregnancy. I like to think that I had enough love and maturity in me but I honestly don't know.

I am sure this is not the "popular" thing for anyone to say but this is my blog with my thoughts, if you don't like it, you are free to click that little x in the upper right corner of your browser

I was a totally different person before I had Zachary.

Chris and I were a totally different couple. That extra chromosome changed me to my core. I don't know if the person I was before would have accepted this. Before I had this little pink person staring up at me. This person that needed nothing but love from me. This person that had shared my body for 40 weeks and I had grown to love so deeply. At 18 weeks when I had that screening done, I hadn't yet felt his first little flutter. I didn't know that he was a he. I didn't know what his name would be. I had no idea what it would feel like to stare at your child and feel that overwhelming love the moment they come out of your body.

I was busy making wedding plans and adjusting to quitting smoking and drinking wine and coffee. While Chris and I were very much in love and planning to get married, I got pregnant quicker than we expected so we pushed the wedding up a little bit. I don't know that we would have felt secure enough in our relationship, or in ourselves in general, to accept something like this. I am ashamed to say that I was that annoying teenager that made jokes about the short bus. That didn't know people with disabilities. Like really know who they are. Sure I may have been cordial in passing but I didn't take the time to really know who they were. At my school the special ed class was grossly removed from the rest of the students and I rarely saw any of them let alone know their names.

I don't know if that person would have accepted this.


In looking back on our AFP test results I think there should have been some red flags raised. My OB during my pregnancy was in a group of 6 doctors. I saw a few of them throughout my pregnancy due to my doctor being out often dealing with some family emergencies. At the routine appointment following the screening I was told that the results were "normal" and it was never discussed again. At our "big" ultrasound I was around 20 weeks into my pregnancy and all of his limbs measured slightly short - around 18 weeks. I have learned with pregnancy there is about a 2 week 'give-or-take' cushion so his limbs measuring 2 weeks behind was not cause for alarm. At my postpartum follow up I met with the doctor who delivered Zach. The one who after Zach was born said there was no way he had Down syndrome. I told him that the tests confirmed that he did in fact sport the extra chromosome and he pulled out my AFP results and said they were around 1 in 350. How that wasn't an elevated result is beyond me? Based off my age (25 at the time of the test, 26 when he was born) "normal" should be around 1 in 800.

Begin rant
Personally, I think the AFP screening is a huge waste of blood (and I told my OB that when I was pregnant with Hannah). I strongly urge everyone I know to not waste their time on that test. I have heard of so many people getting elevated risk factors, stressing out for nothing, all for their baby to have the correct number of chromosomes. I have never heard anything good come of this screening.
End rant

Anyhow, my theory is that with everything going on with my doctor, something slipped through the cracks with my results. Or maybe some higher being knew how much I needed Zach and knew that our plan was to not know until birth.

Down Syndrome Awareness Month!!

In honor of Down syndrome Awareness Month I am going to try and blog everyday. Blog about DS. Zach. How it has effected our lives. I may have a guest blogger or two. I may post about short little conversations between Zach and I. I may just post a picture. But my goal is to share as much as possible with people about Down syndrome and the joy it has brought my family. And maybe learn something I didn't know along the way...

Stay tuned...

A hell of a year....

Chris turned 38 yesterday! We celebrated on Sunday (since we both worked yesterday) with my first attempt at lasagna and ridiculously chocolaty chocolate cake. Surely he would not have asked for items that needed to be baked had he known we would be having a crazy heat wave and he even said several times that we could have something else for his birthday dinner but I wanted to give him what he asked for so... lasagna and cake it was! It was 106 at our house on Sunday. Yesterday there was record breaking heat and was 113 where we work!

Right around his birthday last year is when the bumps in the road of our lives started. I don't think I even had the time or energy to blog about it all but here is a quick recap...

Chris had some issues arise at work that resulted in him almost losing his job which caused a huge amount of stress and tension.

While vacationing at Disneyland, had to take Zachary to the ER with breathing problems, told he has asthma.

My grandmother went through months of health problems and weeks in the hospital and almost died. Twice.

Chris appendix almost burst and had emergency appendectomy

Papa Don passed away

Zach had a seizure

Chris had a stroke. Learn of Chris' heart condition and in the near future will be exploring the options on how to treat going forward.

Can I please get off of this roller coaster?!?!

Sleepover!

This weekend we had Max and Molly spend the night. Their parents have saved us a few times by keeping our kids and we wanted to repay the favor. The kids had a blast. Zach and Max have been friends for a really long time. It is cute to see how they have grown.

The gang (I love the way Hannah and Zach are looking at each other. And the fact that they chose to set up camp next to each other)


The boys


The girls


Siblings

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.

Happy 3rd Birthday Hannah Rose!!

Dear Hannah,

It is hard to believe that 3 years has passed already yet I cant believe it has only been 3 years. You fit so perfectly into our family. You bring such an energy to our lives and you and your brother are the best of friends. You understand what he is saying better than we do. You can out talk and out smart most kids your age and ask quite often if you can go to school. However, you don't want to just go to any school, "Princess School" is what you ask for. You have a way of melting my heart with your smile and the sweet things you say. You love to give us kisses when you know we need them most.

You also have a way of making me want to run screaming from the house. You have an attitude. A big one. You also have a shriek that makes us cringe. If you don't get your way, it generally results in a long drawn out crying fit that does not end until we can come to some sort of compromise. You run us. And you know it. But I know this just means you are going to be a strong minded young woman and I wouldn't have it any other way.

I love you more than you will ever imagine my sweet girl.

Love,

Mommy

You wanted a party this year and you asked for a princess party so that is what you got!

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!"


Pre-surf pep talk with my Daddy


Warmups


Learning the moves




Headed out to the waves


Riding one in


A picture is worth a thousand words...




Hi Fives for his teachers


"This is so fun!"