For all my family and friends! Please email me at joeandbianca@yahoo.com for the link! It would be fun to have somewhat of a live chat with all of you!
I hope you're all having a happy Sunday!
-Bianca
Sunday, June 14, 2009
Saturday, June 13, 2009
Friday, June 12, 2009
Welcome to Holland
I'm sure some of you have read this poem before, so this is for those of you who haven't.
It's all about being the parent of a special needs child. I read this poem quite often and it gives me a little reminder about how special Joe and I are to have been chosen to be Linden's parents. You've been chosen as well, to be her friends, her family. Grab a Kleenex!
_____________________________________________________________
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.
It's all about being the parent of a special needs child. I read this poem quite often and it gives me a little reminder about how special Joe and I are to have been chosen to be Linden's parents. You've been chosen as well, to be her friends, her family. Grab a Kleenex!
_____________________________________________________________
WELCOME TO HOLLAND
by Emily Perl Kingsley.
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 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.
I scream for Ice Cream!
"What was that!?!?"
"Who cares? Just give it back to me!"
"This is the best stuff ever, Mama!"
After the ice cream bar, but before the bath.
Thursday, June 11, 2009
We're 'All Set'
I heard that phrase about 100 times last time we were in Boston and heard it again this morning, so I had to use it.
We'll, Linden's surgery is scheduled. At the same time, I'm scared out of my mind and yet, relieved because this is our little girl's only chance at seeing her first birthday.
I just talked with Sherry from Dr. B in Boston's office. We need to be there on July 15th in order to be at our 7Am outpatient workup on July 16th. That's when they'll do an echo, ekg, and bloodwork. On Friday, July 17th, she'll be having a cardiac catheterization procedure at 7am. She will stay overnight and be discharged on Satuday. Monday July 20th at 6:30 Am we need to be at the hospital for her surgery. She has to stop her baby asprin one week before on July 12 and if she gets sick less than a week before her surgery we need to call them to postpone surgery.
We have been told that this surgery will not be as long (longest 7 hours of my life) or as complex at her AV canal repair last November. It's pretty straightforward from the surgeon's point of view and they seem to have a good idea as to what they'll be doing once she's in there.
Here's a cute picture of Tris and Linnie from the other day. See the redness under Linden's eyes that I was talking about before?
Thanks for checking in on us!
Bianca
~Thought for the day~
All is well. I'm ready for whatever comes today. My yesterdays have prepared me.
We'll, Linden's surgery is scheduled. At the same time, I'm scared out of my mind and yet, relieved because this is our little girl's only chance at seeing her first birthday.
I just talked with Sherry from Dr. B in Boston's office. We need to be there on July 15th in order to be at our 7Am outpatient workup on July 16th. That's when they'll do an echo, ekg, and bloodwork. On Friday, July 17th, she'll be having a cardiac catheterization procedure at 7am. She will stay overnight and be discharged on Satuday. Monday July 20th at 6:30 Am we need to be at the hospital for her surgery. She has to stop her baby asprin one week before on July 12 and if she gets sick less than a week before her surgery we need to call them to postpone surgery.
We have been told that this surgery will not be as long (longest 7 hours of my life) or as complex at her AV canal repair last November. It's pretty straightforward from the surgeon's point of view and they seem to have a good idea as to what they'll be doing once she's in there.
Here's a cute picture of Tris and Linnie from the other day. See the redness under Linden's eyes that I was talking about before?
Thanks for checking in on us!
Bianca
~Thought for the day~
All is well. I'm ready for whatever comes today. My yesterdays have prepared me.
Wednesday, June 10, 2009
To all of you who called/texted/emailed me today
I apologize for not getting back to you. I'm just really sorting through some emotions and it's painful to talk about it right now. I have so much going through my mind. Please forgive me and soon I'll be getting back to you.
Thank you for your patience and your prayers!
Love you,
Bianca
~Thought for the day~
I can't be everywhere today. Nor can I attend to the needs of everybody I meet. I will carefully choose where to give my attention and then offer it totally.
Thank you for your patience and your prayers!
Love you,
Bianca
~Thought for the day~
I can't be everywhere today. Nor can I attend to the needs of everybody I meet. I will carefully choose where to give my attention and then offer it totally.
Linden will be having surgery soon.
It looks like Linden will be having her 2nd open heart surgery before her first birthday.
We had a cardiology appointment yesterday and unfortunately it wasn't the best news. I had a bad feeling when Linden was weighed and she had lost around 2 lbs in a month. That's never good. Dr. B. walked in and said the usual "Questions, comments, concerns?" and I answered back that I simply don't like the way Linden is looking nowadays. I mentioned how her eyes are a purplish red underneath and she's kind of sluggish and tired looking, too. I said how Joe and my mom noticed it because they're not around her 24/7 like I am. It was a drastic difference when she was put on Enalapril and Digoxin, too. She just simply isn't herself. After I finished explaining that, Dr. B asked me how old I was. I thought it was a weird question, but I answered "24" and he said "You're a very good mama" and then he handed me his Blackberry and told me to read the email from her cardiologist in Boston (where she had her first surgery, AV Canal Repair). I started reading and saw "It would be in Linden's best interest to schedule a mitral valve repair as soon as possible" and then everything else after that was a blur. There were lots of medical terms that I just didn't understand.
Dr. B was unusually stone-faced while talking to us about the risks of surgery. He said that he has only had two patients, including Linden, in his whole practice who have had this complicated of anatomy, and the other patient did not survive. I felt a huge lump forming in my throat when he said that. He said that in another 6-9 months her heart wouldn't even be good anymore. I felt all of the blood rushing to my feet at that moment. It's like I couldn't believe that we were talking about my baby, my sweet Linden Caroline. It's a risky surgery as the wall behind where the surgery will be taking place is close to the circulatory system. Here is a very good website describing the surgery she will be having.
Dr. B from Boston will be calling me sometime this week to schedule a date.
I'll be posting updates about everything going on with us on this site instead of calling everyone one by one.
Thank you for your support and prayers during this time.
Bianca
~Thought for the day~
Well-being, my own and someone else's, will be fostered by my actions today.
We had a cardiology appointment yesterday and unfortunately it wasn't the best news. I had a bad feeling when Linden was weighed and she had lost around 2 lbs in a month. That's never good. Dr. B. walked in and said the usual "Questions, comments, concerns?" and I answered back that I simply don't like the way Linden is looking nowadays. I mentioned how her eyes are a purplish red underneath and she's kind of sluggish and tired looking, too. I said how Joe and my mom noticed it because they're not around her 24/7 like I am. It was a drastic difference when she was put on Enalapril and Digoxin, too. She just simply isn't herself. After I finished explaining that, Dr. B asked me how old I was. I thought it was a weird question, but I answered "24" and he said "You're a very good mama" and then he handed me his Blackberry and told me to read the email from her cardiologist in Boston (where she had her first surgery, AV Canal Repair). I started reading and saw "It would be in Linden's best interest to schedule a mitral valve repair as soon as possible" and then everything else after that was a blur. There were lots of medical terms that I just didn't understand.
Dr. B was unusually stone-faced while talking to us about the risks of surgery. He said that he has only had two patients, including Linden, in his whole practice who have had this complicated of anatomy, and the other patient did not survive. I felt a huge lump forming in my throat when he said that. He said that in another 6-9 months her heart wouldn't even be good anymore. I felt all of the blood rushing to my feet at that moment. It's like I couldn't believe that we were talking about my baby, my sweet Linden Caroline. It's a risky surgery as the wall behind where the surgery will be taking place is close to the circulatory system. Here is a very good website describing the surgery she will be having.
Dr. B from Boston will be calling me sometime this week to schedule a date.
I'll be posting updates about everything going on with us on this site instead of calling everyone one by one.
Thank you for your support and prayers during this time.
Bianca
~Thought for the day~
Well-being, my own and someone else's, will be fostered by my actions today.
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