Monday, July 26, 2010

The Curveball

By eleven or so, we were in our hospital room waiting to be reunited with Gus. He was in the nursery undergoing what I assumed to be regular tests. After a little while, I went to check on our little guy. The pediatrician told me that Gus’ body temperature wasn’t quite stable enough yet for him to come down but it shouldn’t be too much longer. I updated Shell and we continued calling and texting our good news to loved ones.

Around one, I was in the middle of writing the last blog when the pediatrician came into our room. I knew immediately that something was wrong by the look in her face. She closed the door. Then she hit us with a sledgehammer. Gus had several characteristics of a baby with Down’s syndrome. They would not know for sure until completion of a certain blood test but they were pretty sure.

I wanted to vomit but I comforted my wife instead. She was angry, hurt, and scared because the doctor was telling us that our beautiful son whom she carried in her belly for nine months and held in her arms for the first time only hours ago was not the baby we thought we were having. Shell engaged the pediatrician challenging her to defend her position. I sat by numbly holding Shell’s hand. Moments passed by in a blur as they spoke. Finally, Shell and I were left alone with our son to think and talk.

When I saw Gus shortly after he was born, I noticed that he had a lot of skin going all the way around his neck – almost like a huge double chin turtleneck. I presumed there was simply a lot of fetal fluid or something. He was only minutes old and still transitioning from the womb to the world. I didn’t say anything so as not to alarm Shell unnecessarily. The doctors didn’t say anything so I had no reason to worry.

When I saw Gus in the nursery for the first time, his neck was still unusual to me. Even though the temperature thing seemed reasonable, I thought they were spending a lot of time with Gus. Then I remembered that I was sleeping before they brought Greta to us for the first time so I tried not to overreact. No need to panic.
When the pediatrician came in to see us, I said inside my head “Don’t say Down’s - don’t say Down’s” over and over until she actually said it. Holy shit, I knew it.

Only two minutes after the pediatrician left us alone, Shell and I were sitting together still dumbfounded when all of a sudden we realize that Gus is turning blue. I ran for a nurse, they grabbed him and started running down the hall, I looked at Shell to see what she wanted me to do. “Go with them!” she yelled bawling. I ran behind the nurses to the nursery. I feared that our son was about to die in front of my eyes. This isn’t possibly happening right now. I want to wake up and start this day over again. Please save my son.

Finally, they gesture to me that he is okay and breathing. I return to Shell and we hold each other.

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On July 23, 2010, everything changed for my family and nothing changed for my family. Greta is now a big sister. Our siblings have their first nephew. My parents have their first grandson. Nana has her fifth grandchild. My grandfather has his third great-grandchild! We all loved August Thomas before he even got to the party.

I don’t believe in religion. But I do believe in goodness, karma, and an energy that is greater than all of humankind. Perhaps that is what God means to you. Whatever we call this unknown force, it gave my wife and I a gift in the form of our son.

Gus is our flesh and blood. He is our gorgeous baby boy. He is a Teravainen! He happens to have Down’s syndrome. I refuse to let an extra chromosome define him as a person. And I will strive to be the best father I can possibly be, just as I have since the arrival of our first Baby T in February last year.

Our family and friends have asked what they can do to help and support us. Here is our confident answer. Celebrate Gus’ arrival with us. Congratulations are what we want to hear. High five me. Bro hug me. Drink a toast with me to Gus. Love our son dearly with us just as you love our daughter. We are not sorry that we have a path ahead of us that was different from what we originally expected. When you sign up to be a parent, you inherit all of the unexpected turns and twists that come with that child.

Gus is still in intensive care because he cannot breathe on his own yet. I understand from the doctors that his respiratory issue is unrelated to Down’s. We will know more as the week progresses. Fortunately, his heart appears to be healthy based on all tests conducted to date.

Michelle and I are going home on Tuesday to reunite with Greta and to sleep in our own beds. Gus will be staying at the hospital for the time being. We are disappointed to not be bringing him home with us right away but we know he needs to be a bit stronger before that can happen.

We appreciate all of the kind words and offers of support our loved ones have extended. We will try to be in touch as much as possible but don’t be discouraged if we are a bit slow to respond. For the time being, just say a prayer for Gus that he will be breathing without oxygen soon. That is the only wish we have at this time!

15 comments:

Patti said...

So well written (not that I'm surprised!) Thank you for helping us understand how to best support you! Congratulations- can't wait to meet your little guy.

jill said...

Congratulations to the T Family! I am looking forward to many more witty blogs from Daddy on parenting 2 very adorable children. Please tell Michelle her Isis friend Jill is thinking of her and wishing the best for you all! Enjoy your new son August (great name) and of course Miss G!

Anonymous said...

Hi guys! Congratulations on the birth of your son! I'm praying that he makes it home really soon!! August is such a great name and I love the nickname Gus. Hopefully, if we make it to the burbs in the next few months, we'll get to see you more often. Michelle, Dr. Baker is awesome, I love her. Thank you so much for sending me her way. ;o) Good luck with the task of TWO children!! How awesome.

Love Bev (and Bill)

Lisa Stevens said...

What an amazing post. We are so happy for you, Michelle and Greta and we drink a toast to August's arrival. I don't believe in what Christian's would call God either, but I look at my children and know there is something beautiful and good and beyond my comprehension that brought them into my life. August is very lucky to be born to such a warm and loving family. There is a poem I read in college called "Welcome to Holland" by Emily Perl Kingsley that tries to help people understand some of what a family goes through when a child is born with a disablity. Look it up, it's very powerful (I get teary every time I read it). Scott, Aidan, Harper and I are hoping that you'll be bringing August home as soon as possible and we are sending all of our love and joy to you, Michelle, Greta and especially August. Congratulations and best wishes ! Lisa

Megan said...

you are all amazing and we love you guys so much! we can't wait to meet the newest Teravainen, Gus and shower him with some Martelli love.

DarcC said...

Congratulations! I can't wait to read your musings on Gus's milestones just as you did with Greta. I would also like to direct you to a blog written by a friend of mine. Here's a good post to start with. I'll post more links to specific posts later, I'll have to search her archives for the ones that express all the things I'd like to say right now.

http://tulpensbadwords.blogspot.com/p/whoa.html

Love to you all and prayers for Gus's speedy homecoming!

Scott said...

This post reminds me why people are so drawn to you. I am so impressed with how you were able to take what's in your head and heart and communicate it through this post. Gus is lucky to have you and Michele as his parents and you are lucky to have him as a son, as I am sure you already know.

Congrats. I can't wait to meet him.

Anonymous said...

Congrats again on the arrival of your new little man Gus! Thank you so much for sharing this blog - it is beautifully written! It was a pleasure taking care of you both in the hospital last evening. I want you to know that it is patients like yourselves that affirm why we become nurses... the strength, courage, love and support you show for each other during a joyous but challenging experience is unforgettable. I am hoping for Gus that he comes home to you quickly and that you can enjoy being a family of four all together! Best wishes!

-Liz ( one of your MANY nurses :)

Kristin said...

Congratulations on you new baby. I know you don't know me very well, but I know Michelle through Tara Stone (Skrabut). I just thought I might share this poem with you that a friend of mine has found comfort in in raising her son with CP. Enjoy your new baby. Best Wishes. Kristin Menard (Hanson)


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 guide books and make your 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 that 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 guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never 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 that 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 Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

* * *

Kristin said...

Congratulations on you new baby. I know you don't know me very well, but I know Michelle through Tara Stone (Skrabut). I just thought I might share this poem with you that a friend of mine has found comfort in in raising her son with CP. Enjoy your new baby. Best Wishes. Kristin Menard (Hanson)


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 guide books and make your 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 that 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 guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never 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 that 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 Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

* * *

Kristin said...

Congratulations on you new baby. I know you don't know me very well, but I know Michelle through Tara Stone (Skrabut). I just thought I might share this poem with you that a friend of mine has found comfort in in raising her son with CP. Enjoy your new baby. Best Wishes. Kristin Menard (Hanson)


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 guide books and make your 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 that 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 guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never 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 that 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 Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

* * *

Kristin said...

Congratulations on you new baby. I know you don't know me very well, but I know Michelle through Tara Stone (Skrabut). I just thought I might share this poem with you that a friend of mine has found comfort in in raising her son with CP. Enjoy your new baby. Best Wishes. Kristin Menard (Hanson):
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 guide books and make your 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 that 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 guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never 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 that 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 Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Kristin said...

Congratulations on you new baby. I know you don't know me very well, but I know Michelle through Tara Stone (Skrabut). I just thought I might share this poem with you that a friend of mine has found comfort in in raising her son with CP. Enjoy your new baby. Best Wishes. Kristin Menard (Hanson):
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 guide books and make your 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 that 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 guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never 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 that 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 Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Ria said...

Congratulations on your new baby! Followed the link to this post via your wife's post on Babycenter.
Well-written and so nice to hear a dad's perspective! Thanks for sharing. Your little guy must be 3 months old by now, right?
My little guy, Matthew, just turned 3 years old and I remember being hit by the sledgehammer as well right after he was born. When we received the diagnosis, I never could picture what our lives would be like. But 3 years have passed and it's been a wild, fun joyride. Has it's ups and downs like everything else and wouldn't trade our experience for anything. I wouldn't trade Matthew for anyone else.
Have a great day! By the way, I've added your blog to my blogroll.

Veronique said...

In August or September 2010, I was on my way to work and I heard on the radio a comment about a web site called The Good Men Project. I checked it out that day and stumbled upon The Curveball. I was 10-11 weeks pregnant at the time and couldn't wait until the next entry came out to know what happened to your little Gus.

Fast forward to March 2011. I was able to hold my son only a few minutes after he was born before he was whisked away because of breathing problems. I looked at him on the heat bed next to me and without thinking much I told him that he had an impressive double-chin. As I said it, I was suddenly reminded of your posts. They then took my precious baby to the NICU and a few hours later, I learned that he too was born with Down syndrome.

I couldn't help but think about your posts over the next few days, as our son unfortunately did have to go through an emergency open-heart surgery...

Today, at 16 months, he is doing great! I reread recently your posts with a new eye obviously, and can certainly relate to how you felt going through the first few days of your beautiful son's life.

Thank you for taking the time to write about your experience.