Welcome to Holland!
2:32 PM 19 Comments »Welcome To Hollandby Emily Pearl 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 guidebooks and make your wonderful plans. The Coliseum, the Michalangelo 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 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 go out and buy new guidebooks.
And y
ou must learn a whole new language.
ou 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." The pain of that will never 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 will never be free to enjoy the very special, very lovely things about Holland.
How awesome is that?! Thank you Dani for sending me that beautiful analogy...I know I will love Holland!
I met with Dr. Riverra today, a pediatric cardiologist. He drew me a picture of what's going on in the princess's heart. I nodded my head and acted like I knew what he was talking about (yeah right) but wow, I really need to start learning my medical terminology! Anyway, basically she has three holes in her heart. One is a totally normal one that ALL babies are born with that should close on it's own sometime soon. The other two holes are very typical in people with down syndrome and just need to be watched. She may or may not need surgery. It's just a wait and see kind of thing. IF she 
does need surgery, we can do it around six months of age or even later...just depends. And if that is the case, she will have the procedure done at UC San Francisco.
does need surgery, we can do it around six months of age or even later...just depends. And if that is the case, she will have the procedure done at UC San Francisco. Dr. Riverra also told me about how much has changed in the way we treat down syndrome now as opposed to 20 years ago. There are so many therapies she can be involoved with and so much she will be able to do. He even told me about a person with down syndrome in Florida who was Valedictorian in at FSU! How awesome...
So anyway, I have high hopes and know Gabby will be just fine and have a great life! Please just keep her in your thoughts and pray she will not need surgery!
Love and kisses to you all!
xoxo
Posts
19 comments:
I think Holland is going to be your new favorite place :) Love, Cori
I absolutely adore Welcome to Holland. It's one of the greatest things ever. I'm so glad you love it, too! I am already addicted to your blog and have checked it quite a few times already today for updates on Gabby! Keep 'em coming, Sheree! She's a superstar! :)
Hi Sheree
I came over via Kyla and want to say CONGRATULATIONS on your beautiful girl!
I am so happy to see you have been treated well so far in terms of people being positive about her future.
Just over a year ago my daughter was born and we went through something very similar to what you are going through now. My daughter took longer to diagnose as she has Sotos Syndrome which is more rare than T21 and is caused by a single gene so it wasn't visible on her karyotype.
Julia had heart surgery for her PDA and has an ASD which has not needed surgery (and hopefully will not ever!)
You will be in my thoughts and prayers. Send me an email if you would like to chat or need NICU support. I know how hellish having to leave your baby in the hospital.
Sheree, I'm already in love with Gabby, she is just so beautiful! You are so amazing how you are handling everything. You are inspiration to a lot of people, including me. Give Gabby and Cam kisses from Aunt Nutty. See you soon.
Love,
Aunt Nutty
I love that poem, I was just thinking of that for you today. You are so lucky to have this angel in your life.
Jen
Kyla sent us over to lift you up with some support. When there are days when you can't see the silver lining in the cloud, just let us know. We're here to support you and to believe when you can't. Trust me...my blog friends have been there for me when I was lost in the darkness of my pain. Oh, dear...I didn't come over to cast the shadow. I just really want you to know that it's okay to let it all out here. Use this space as your personal venting platform. We're here to cheer you on. I can't wait to read about Gabby's progress!
Hopping over from Kyla's blog to say hello and congratulations.
Your little girl is beautiful. Don't let the stress and confussion of all the new info you're receiving distract you from that.
You'll do great!
Blessings to you all.
Wow, what a great analogy. I love that!
I'm glad to hear more details about Gabby's heart. I pray for no surgery for your princess.
Holland is pretty freaking awesome. And we've already been to Italy once, time to see the rest of the world. ;)
I'll be praying for Gabby's little heart!
(PS: If you want some reputable medical research links, I'll be happy to send you the ones I use...sometimes random Google searches are frightening. LOL.)
Sheree, we were just thinking of that essay for you today. I knew since the day you told us what Nguyen had said to encourage you that you would LOVE Holland. Kyla made a GREAT point...you get the distinct honor of going to both Italy AND Holland, you lucky lucky girl. We love you! Linds, James, Collin and Mia
Came over via Kyla and wanted to give you a welcome to blogging ~ and to Holland. My daughter was born with Cornelia deLange Syndrome 11 1/2 years ago, and the social worker at the NICU gave me a copy of that poem. It really helped carry me through some bleak days. Holland really is a lovely place ~ I love it here!
Congratulations on your new baby girl ~ she is absolutely beautiful! Looking forward to getting to "know" y'all better ~
Kim
here from Kyla's...just wanted to welcome Gabby to the world and say how beautiful she is.
our Hollands come in many forms, and bring with them unexpected blessings. i think you're facing your surprise landing with courage and mamabear instincts and i wish you great joy.
Hi! I'm here from your link on BBC. :) What an amazing mom you are. Your sweet children are a beautiful blessing. I look forward to following your family's site. God bless.
Sheree,
Hi, it's Nichol from BBC, I was thinking about you this morning and I hope you are doing well. I am so glad you have been in touch with some great people who are assuring you that Gabby is going to live an awesome life, she is so beautiful I love the picture witht he bow!
What a beautiful girl, and a beautiful heart that her mommy has. Congratulations!
(came here via Kyla)
Over from Kyla's.
I think you are going to do alot of travelling with that beautiful girl.
Congratulations!
Oh, she's beautiful! Congratulations! I'm also over from Kyla's :-)
I am a parent to a little guy with special needs and even though we have our hard days, we mostly live with joy and gratitude that he is ours. You seem like a strong and courageous woman, your daughter found just the perfect mama. Best wishes to you and your family.
Sheree:
Gabby is so beautiful. She is a princess. I love your blog. Thank you for allowing all of us to get to know Gabby and seeing her angel face.
Please give her a kiss for me and you take care of yourself.
Gabby is so beautiful!
I love the "Welcome to Holland" story. So powerful!
We're praying you get to take your precious Gabby home soon! ((hugs))
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