WELCOME TO HOLLAND
by Emily Perl Kingsley
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 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...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 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.
© 1987, by Emily Perl Kingsley. All rights reserved. Reprinted with permission of the author.
Saturday, June 27, 2009
Wednesday, June 24, 2009
Oh how the belly grows
So the baby passed the inspection for another week. They're now thinking the fluid around the abdomen is related to the heart condition. This makes more sense to me and I'm glad to hear that it is mostly likely not another whole issue. It other news, I'm getting tired of lugging around this extra weight.
Thursday, June 18, 2009
People smile and tell me I'm the lucky one, and we've just begun, I think I'm going to have a son...
So there was no fluid around the heart, just the abdomen. That could mean 3 things:
1. It's nothing and will go away
2. It's a lymph fluid issue that is rare, but seen occasionally in baby's with Down Syndrome, that requires no treatment, just monitoring and he may have a big belly
3. It's a sign of GI infection in which case, the baby could develop distress and my placenta becomes unsafe and my B/P goes up requiring quick delivery.
So basically, they have no clue. I'll be getting weekly non-stress tests and 4D ultrasounds at the Perinatologist. Depending on the baby's abdominal fluid level and activity, they will monitor closely when he's better out than in. If the fluid increases and is concerning, I'll deliver at Good Sam where they have a high level nursery. It's just one more thing to worry about. I'm tired.
I'm reading the book "Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives". One of the chapter's says, "This baby, who was fighting for his existance, was a part of me. If he could fight to survive, then surely I could fight through my fear and anxiety to find the answers to help him".
1. It's nothing and will go away
2. It's a lymph fluid issue that is rare, but seen occasionally in baby's with Down Syndrome, that requires no treatment, just monitoring and he may have a big belly
3. It's a sign of GI infection in which case, the baby could develop distress and my placenta becomes unsafe and my B/P goes up requiring quick delivery.
So basically, they have no clue. I'll be getting weekly non-stress tests and 4D ultrasounds at the Perinatologist. Depending on the baby's abdominal fluid level and activity, they will monitor closely when he's better out than in. If the fluid increases and is concerning, I'll deliver at Good Sam where they have a high level nursery. It's just one more thing to worry about. I'm tired.
I'm reading the book "Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives". One of the chapter's says, "This baby, who was fighting for his existance, was a part of me. If he could fight to survive, then surely I could fight through my fear and anxiety to find the answers to help him".
Tuesday, June 16, 2009
Happy Birthday to me
Monday was week 2 of non-stress test and ultrasound. The baby weighs close to 6 lbs now and my due date has been moved up to July 17th. They did notice fluid around his heart and abdomen yesterday. I have to go back to the perinatologist for another 4D ultrasound. I really don't like that place. You only hear bad news there. We'll see what he has to say. The baby feels lower and I feel much bigger. I'm thinking he'll be coming soon. I'm nervous about tomorrow. In other news...it's my birthday. I never thought my wish for my 27th birthday would be to have a healthy baby.
Sunday, June 7, 2009
Can you really call a boy Cash?
After we had the first ultrasound, Justin lovingly began referring to the baby as "the cashew", saying things like "how's the cashew been feeling today?" (meaning, how's the morning sickness). Overtime, this has shortened to Cash and has stuck. Everyone calls this baby Cash. I think I'm the only one that will refer to him as Gabe. It is incredibly cute, but hopefully he doesn't have too much confusion over what his name is.
Yesterday we went to an ice cream social the Down Syndrome Association had. It was the first time I'd seen all these kids together and playing. I felt a little emotional at first, but felt a little better as I talked to people. All the kids seemed to be having a blast. The parents all seemed to know each other and were very supportive. One family was telling us that their two and a half year old daughter just started walking last week. They were saying it with such pride...as such an accomplishment. I think it my eyes I still saw it as a delay. I'm hoping my way of thinking will switch over. I'm sure it will with my child as I go through the journey with him.
I started having Braxton Hicks contractions last week. I've had 10 so far today. There isn't a real pattern with them, but I have spurts when they are frequent. It kinda makes me nervous. I have a feeling this baby will be born early....I just hope not too early.
Yesterday we went to an ice cream social the Down Syndrome Association had. It was the first time I'd seen all these kids together and playing. I felt a little emotional at first, but felt a little better as I talked to people. All the kids seemed to be having a blast. The parents all seemed to know each other and were very supportive. One family was telling us that their two and a half year old daughter just started walking last week. They were saying it with such pride...as such an accomplishment. I think it my eyes I still saw it as a delay. I'm hoping my way of thinking will switch over. I'm sure it will with my child as I go through the journey with him.
I started having Braxton Hicks contractions last week. I've had 10 so far today. There isn't a real pattern with them, but I have spurts when they are frequent. It kinda makes me nervous. I have a feeling this baby will be born early....I just hope not too early.
Monday, June 1, 2009
showers and nursery
I had my first baby shower 2 weeks ago. It was the Beiting's/Wehage baby shower. It was lots of fun. It was good to see everyone. Plus, I got some pretty cool stuff. Baby stuff is so cute. Justin finished putting together the crib, changing table and rocker. David also came over and helped us paint a tree on the wall of the nursery. It's all coming together. I also met Martha from the Down Syndrome Association of Greater Cincinnati last week. It was so nice to talk to her. They are having an ice cream social this weekend for the Early Matters group (in-utero to 3 years). It will be so nice to watch the kids play. I started having some Braxton Hicks contractions last week. My stomach just turns to a hard ball. It's so weird. I'm starting to get a little nervous about the delivery. It's not really labor that makes me nervous...just the part where they cut the umbilical cord and the baby's heart is functioning on its own to deliver oxygenated blood. They say everything should be okay, but I am happy a neonatologist will be there just to make sure.
Sunday, May 10, 2009
Mother's Day, 2009
My husband Justin and I found out we were pregnant on Thanksgiving weekend. We were so excited to have a baby. I took 5 pregnancy tests just to make sure. We had done everything "right"....we were married, we had jobs, we had a home, we wanted a family....
The pregnancy was going well. Luckily morning sickness ended by week 10. We found out that we were having a boy. I had to have frequent ultrasounds because the sonographer always had difficulty seeing the chambers of the heart because the baby was moving so much. We were referred to a perinatologist to have a 4D ultrasound. On April 24th, Justin and I learned that our baby has a complete atrio-ventricular septal defect (AV canal). We met with a Cardiologist from Children’s and found out that luckily, this is repairable. He said survival rate is 90-95% and sounded very confident that this can be fixed. Surgery is anticipated to take place 4-6 months after birth and will most likely require a 7-14 day hospital stay. AV canals are most commonly seen in babies with Down Syndrome. I had an amnio and discovered that our baby will be a baby with Down Syndrome. Risk of having a baby with Down Syndrome is about 1 in 750. The perinatologist said that someone my age who also has a normal Quad screen has a 1 in 2,000 chance of having a baby with Down Syndrome. We were stunned. I just remember crying and thinking why am I the one? Out of all the irresponsible parents and unplanned pregnancies, why me? I was crushed and then angry and then sorry for myself all over the course of a 3 day period. I then came to realize...of course I am the one. We can handle this. We'll be okay. We're going to be good parents. Justin and I are very committed in helping our child reach his full potential and love him more than anything. We’ve been doing lots of research on schools, therapies, support groups, etc. to try to get a handle on everything. The heart surgery will be difficult to get through, but we can do it. Over the course of the past 3 weeks, we've gotten an enormous amount of support from family, friends, and co-workers. People seem moved by our story. I've been lucky enough to speak to parents of children with Down Syndrome and to speak to adults and parents of children who have gone through AV Canal repairs. It's comforting to hear their experience and how they wouldn't trade it for the world. I'm so excited to meet this baby. I want to know what he looks like. I want to hold him. As of now, it’s just a waiting game till delivery. Thinking positive can do wonders. The video below helped me alot.
The Journey Ahead
~Michelle
PS: A girl I work with sent me the following story. I thought it was fitting for Mother's Day.
A newborns conversation with God:
A baby asked God, "They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?"
God said, "Your angel will be waiting for you and will take care of you."
The child further inquired, "But tell me, here in heaven I don't have to do anything but sing and smile to be happy."
God said, "Your angel will sing for you and will also smile for you. And you will feel your angel's love and be very happy."
Again the child asked, "And how am I going to be able to understand when people talk to me if I don't know the language?"
God said, "Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak."
"And what am I going to do when I want to talk to you?"
God said, "Your angel will place your hands together and will teach you how to pray."
"Who will protect me?"
God said, "Your angel will defend you even if it means risking its life."
"But I will always be sad because I will not see you anymore."
God said, "Your angel will always talk to you about Me and will teach you the way to come back to Me, even though I will always be next to you."
At that moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked, "God, if I am to leave now, please tell me my angel's name."
God said, "You will simply call her, "Mom."
The pregnancy was going well. Luckily morning sickness ended by week 10. We found out that we were having a boy. I had to have frequent ultrasounds because the sonographer always had difficulty seeing the chambers of the heart because the baby was moving so much. We were referred to a perinatologist to have a 4D ultrasound. On April 24th, Justin and I learned that our baby has a complete atrio-ventricular septal defect (AV canal). We met with a Cardiologist from Children’s and found out that luckily, this is repairable. He said survival rate is 90-95% and sounded very confident that this can be fixed. Surgery is anticipated to take place 4-6 months after birth and will most likely require a 7-14 day hospital stay. AV canals are most commonly seen in babies with Down Syndrome. I had an amnio and discovered that our baby will be a baby with Down Syndrome. Risk of having a baby with Down Syndrome is about 1 in 750. The perinatologist said that someone my age who also has a normal Quad screen has a 1 in 2,000 chance of having a baby with Down Syndrome. We were stunned. I just remember crying and thinking why am I the one? Out of all the irresponsible parents and unplanned pregnancies, why me? I was crushed and then angry and then sorry for myself all over the course of a 3 day period. I then came to realize...of course I am the one. We can handle this. We'll be okay. We're going to be good parents. Justin and I are very committed in helping our child reach his full potential and love him more than anything. We’ve been doing lots of research on schools, therapies, support groups, etc. to try to get a handle on everything. The heart surgery will be difficult to get through, but we can do it. Over the course of the past 3 weeks, we've gotten an enormous amount of support from family, friends, and co-workers. People seem moved by our story. I've been lucky enough to speak to parents of children with Down Syndrome and to speak to adults and parents of children who have gone through AV Canal repairs. It's comforting to hear their experience and how they wouldn't trade it for the world. I'm so excited to meet this baby. I want to know what he looks like. I want to hold him. As of now, it’s just a waiting game till delivery. Thinking positive can do wonders. The video below helped me alot.
The Journey Ahead
~Michelle
PS: A girl I work with sent me the following story. I thought it was fitting for Mother's Day.
A newborns conversation with God:
A baby asked God, "They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?"
God said, "Your angel will be waiting for you and will take care of you."
The child further inquired, "But tell me, here in heaven I don't have to do anything but sing and smile to be happy."
God said, "Your angel will sing for you and will also smile for you. And you will feel your angel's love and be very happy."
Again the child asked, "And how am I going to be able to understand when people talk to me if I don't know the language?"
God said, "Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak."
"And what am I going to do when I want to talk to you?"
God said, "Your angel will place your hands together and will teach you how to pray."
"Who will protect me?"
God said, "Your angel will defend you even if it means risking its life."
"But I will always be sad because I will not see you anymore."
God said, "Your angel will always talk to you about Me and will teach you the way to come back to Me, even though I will always be next to you."
At that moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked, "God, if I am to leave now, please tell me my angel's name."
God said, "You will simply call her, "Mom."
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