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!"

The latest on Chris

2 weeks ago Chris and I headed up to the hospital for Chris' Cardioversion procedure. They took him back to the waiting area for outpatient procedures and got his IV started, took blood and got the heart monitors on him before calling me back to sit with him. We were there chatting with the nurse for about an hour before the cardiologist got there. His doctor asked me if I wanted to stay to watch it. Sure. I like medical stuff and I have watched my fair share. I watched my moms laser eye surgery on a close up TV screen while she was having it done. I thought it was really cool when they cut the eye ball and pulled the lens back to access the cornea. This would be no biggie.

They put the pads on him. One on his chest and one on his back. They administered the sedatives through his IV to put him to sleep. They charge up the machine. The machine has a warning saying that his pads are not reading properly. They cant figure out why. The machine was reading his EKG information so they knew it was working. He charged it up again and said "Clear!" and pushed the button and nothing happened. Then they realized the wires were not connected to the pads that do the actual shock. I said "You guys are not making feel very good about this!". They get him plugged in and the doctor charges the machine back up and says "Clear!" and just like you see in the movies, Chris' whole upper body lifts up from the gurney. He opens his eyes and looks around. The doctor tells me that it didn't work. He would have to shock him a second time. Chris was still looking around so they gave him another small dose of drugs. I told them I had to leave. I could not watch that again.

I went out to the waiting room and started to worry when a lot of time passed. The doctor finally came out and said that the second shock did work but now he was concerned because his heart rate was in the 30s at rest. 40s when he asked him to get up and move around a little bit. He felt there was some sort of congenital problem and that the top and bottom chambers were not "talking to each other" properly. He still felt ok with Chris going home that day. Said there was nothing urgent that was of concern but that we would talk about him at the followup appointment the following week. He said he expected that Chris would get dizzy easily and that he would not be surprised if he passed out. It was a Friday so he gave me his cell phone number to contact him if we had any problems or questions over the weekend.

I went back to see Chris. I didn't tell him too much at the time because I did not want to give him more to worry about. We were able to leave fairly soon after. We came home and he took a nice long nap. He felt pretty good the next day other than some soreness in his chest. I could hear the difference in his heart beat when I put my ear to his chest. I have become a novice in distinguishing the different states of his heart beats. The following Monday he had to go in to have his blood levels checked and they checked his pulse and said he was irregular again. Not what we expected, or wanted, to hear! I listened to his heart that night and it did sound a little irregular, but not the same as it did post stroke when he was in Atrial Fibrillation. We had a followup appointment with the cardiologist on Wednesday and he said that Chris was back in A Fib. Atrial Flutter to be exact. He said he uses the terms interchangeably but that the A Flutter was a much more organized rhythm than it had before. Last Thursday at work Chris felt his heart beat pretty hard and he got slightly dizzy. When we got home I listened to it and low and behold, it had converted itself back into a regular rhythm. Today, it converted back. It is a very nerve racking state of unknown right now.

At the last appointment with the cardiologist we talked about options from this point on and when we have more information on how he is going to proceed, we will discuss them with everyone.

Thank you to everyone for your continued thoughts and prayers!