I'm locking this blog in 7 days - please email me at fladfamblog@gmail.com or catch me on twitter - email me for my screen name. I'm sure very few of you know this, unless you're on facebook with me, however, on April 6th, our youngest son was kidnapped briefly while we were in Seattle for Spring Break. It's been a horrifying event, that's made us want a little privacy, or at least to not have this blog open to the media, and or to the man who took our son (he is currently in jail, and I intend on blogging on the entire event once this is locked).
Thanks for understanding, and please let us know if you want to still read this blog, and I'll add you.
Saturday, May 30, 2009
Sunday, March 15, 2009
The Amazing Trip in Pictures, continued...
One of my absolute favorite pictures from the entire trip. I always wanted my kids to be close, this picture is what I have worked for as a parent. 
I love that 15 minutes in a superhero's suit is all you need to feel invincable. 
The Princess and her boys.
Jimmy Buffet's Margaritaville. We LOVE this place (if you ever get there, have the Nacho's - trust me).
A horse is a horse, wooden or not. 
I love that we were in the amusement park capital of the world, and the kids just wanted to play stuffed animals. 
3 years ago when we were at Universal, Tommy fell asleep in Curious George's lap, it seemed like maybe that memory was imprinted in his brain, because he could not let go of him once we got there.
This smile...it says it all.
Friday, March 13, 2009
Make A Wish - Walt Disney World Edition
Here are a few pictures of our Make A Wish Trip. I have so many amazing, magical things to show you, and tell you, but I wanted to at least pop a couple pictures on here, because it's taken so long. I've been in Wisconsin and Minnesota this last week, visiting some BioLife Plasma Centers to say Thank you for the plasma that makes our medicine:
watch a video here if you want to see a news story
Here is the best part, Kate's Make A Wish, in a few pictures!
Those limo rides can be hard on a girl (in her defense we had to leave at 5:30 am, which means we woke at 4am).
The kids rode this merry go round every single day, it's at the village Give Kids The World and it's an amazing place (a whole blog post to come on this amazing village). 
A new playground at the village captured the kids imaginations, and literally they would have been content to just play at Matthew's Boundless Playground all day, every day. It's Candy Land themed, who could want more?
Epcot, the first park we visited.
Checking out Mexico inside Epcot. 
What an amazing character experience, can you see that smile on her face?
The boys favorite of all the characters :)
watch a video here if you want to see a news story
Here is the best part, Kate's Make A Wish, in a few pictures!
Those limo rides can be hard on a girl (in her defense we had to leave at 5:30 am, which means we woke at 4am).The kids rode this merry go round every single day, it's at the village Give Kids The World and it's an amazing place (a whole blog post to come on this amazing village).
A new playground at the village captured the kids imaginations, and literally they would have been content to just play at Matthew's Boundless Playground all day, every day. It's Candy Land themed, who could want more?Epcot, the first park we visited.Checking out Mexico inside Epcot. Day 2 - The Magic Kingdom - on the boat headed over. This day needs it's own post because of a very magical experience, so look for that to follow. But this picture? This picture warms my heart, the smile on her face says it all. She so loves him!
What an amazing character experience, can you see that smile on her face?The boys favorite of all the characters :) This is by far one of my favorite pictures, my expecations are low, if everyone is looking at the camera, it's a good picture. Besides that crown on her head... every little girl should feel that special!
We sometimes call Tommy Stitch, so this picture cracks me up, they all find him so funny, that he just makes us all smile.
Saturday, February 21, 2009
Wishes Come True
There was a time, not too many years ago when I felt terribly alone. In less than an 18 month period all three of my kids were diagnosed as missing part of their immune system and then started their IVIG infusions.
I felt isolated, and lonely and I wondered why no one understood. I hurt in ways I can't even explain. I worried about my children's futures, I worried about what they would be able to accomplish, would they go the places they wanted to without worry? Would they travel on planes and explore the world as they pleased or would they spend most of their lives tied to a hospital?
When I thought about what I wanted for my children, I wished that my children would never have to feel as alone as I felt when they were first diagnosed and sick, I wished that we could live with so much less worry, that we could be like anyone else. I wished that we could get explore without needing to sanitize what we touched first.
When our oldest son Charlie had his Make A Wish Trip when he was 5, Kate was 3, and Tommy was almost 2, I remember being so scared, wondering who we would use if the kids got sick? How could we possibly get on a plane with immune deficient children and be that far from their doctors? I remember how AMAZED I was that they went on what amounts to a flying germ factory, and somehow managed to not end up in a hospital, to not get sick. For us, that trip represented a first step back to really living.
The first time I was ever asked to speak to the employees at Baxter Health Care, in the actual plant where their medicine is made, I spoke about this. I told the story of being alone, and afraid. I told them about the time before Tommy was born and Charlie and Kate were in the hospital at the same time. I told them about the desperation I felt. How I knew something was wrong, but I didn't know what it was. I told them about the doctor who told me I was over reacting, and that there was nothing wrong with my daughter, that she was too fat to be sick, that fat babies were not sick babies. I told them about the hope that I had gained as my children started on their Gammagard, the medicine the employees made. I talked about the excitement that we had when our children flew across country, went to Disney World, and didn't get sick. I thanked them, and I told them that WHAT THEY DO MATTERS. That their jobs were more then just a job, that they truly changed our lives.
Over the last 3 years, we've continued to go to the plant with the kids, to keep reminding them that they matter, their jobs matter, that we appreciate them every day. Every time we do something we couldn't do with out them, and the medicine they make we are grateful. We've built relationships with the employees at Baxter and over time with the people who collect their plasma, and even some of the people who donate the plasma to make their medicine.
We try, as much as possible to help our kids see that they are not alone in this fight. We want them to know that they have this enormous support system standing behind them, cheering them on, making sacrifices and working at a difficult job so they can be like any other kid in every way possible. It's one of our goal for the kids, that they never feel the isolation that I felt in that first year.
Yesterday, the employees at Baxter amazed and humbled our family. You see, we always try to make sure our kids know that they are not alone, we spend time going to the plant, we talk about the people, we do as much as we can. Yesterday, the people at Baxter showed us in a way I could have never imagined that not only are we not alone, but that they really are cheering the kids on.
You see, Kate is having her Make A Wish Trip, she also chose to go to Disney World, and we leave next week. She really wanted to share that with her friends at Baxter, so she wrote them a letter to tell them that she is going, and is going to send postcards. We planned to go to the plant to drop off the letter. Instead of her just dropping of the letter, Baxter planned a send off party for her.
They had cake and sparkling cider, and they gathered in a room and brought princesses and had her bring her friends, and most of all, they laughed with us, and talked with us, and they spent time showing our kids how much they care. They humbled us. The people who make our medicine, the people who already give SO much to us, spent their very precious time being excited for us, and loving us. It was more then this mother could have ever asked for.
It's a phenomenal feeling to be in a moment that you realize your family will remember for the rest of their lives. A moment that will become a part of who you are as a person, a moment that changes you, that helps you feel less alone, moments that in the end define part of who you are.
It's an amazing thing to watch your daughter paint on the face of a man who makes her medicine...
to see your son sitting and having cake with the people who make it possible for him to go to school...
It's an incredible thing to watch a little girl sit with your daughter, to know that they go school together, do girl scouts together, and know that her Daddy makes it possible for your daughter to do those things.
How can it be anything less then marvelous to watch your husband talk about his children and the lives they live with the people who make it possible for them to live those lives.
There are not enough words to describe the way my heart feels, how wonderful that moment was when Kate said to me, "You know the best part about today Mommy? It wasn't the princesses, or the cake, it was that we got to do it our friends who make our medicine. "
In a few days time we'll get on a plane and head to Disney World and Kate's wish will come true. As we head to the plane, I'm not worried anymore, over the past 3 years as we've begun to trust that we really can live again, and that we can explore, we're getting on a plane knowing our support system is standing behind us, and my wishes have already come true.
I felt isolated, and lonely and I wondered why no one understood. I hurt in ways I can't even explain. I worried about my children's futures, I worried about what they would be able to accomplish, would they go the places they wanted to without worry? Would they travel on planes and explore the world as they pleased or would they spend most of their lives tied to a hospital?
When I thought about what I wanted for my children, I wished that my children would never have to feel as alone as I felt when they were first diagnosed and sick, I wished that we could live with so much less worry, that we could be like anyone else. I wished that we could get explore without needing to sanitize what we touched first.
When our oldest son Charlie had his Make A Wish Trip when he was 5, Kate was 3, and Tommy was almost 2, I remember being so scared, wondering who we would use if the kids got sick? How could we possibly get on a plane with immune deficient children and be that far from their doctors? I remember how AMAZED I was that they went on what amounts to a flying germ factory, and somehow managed to not end up in a hospital, to not get sick. For us, that trip represented a first step back to really living.
The first time I was ever asked to speak to the employees at Baxter Health Care, in the actual plant where their medicine is made, I spoke about this. I told the story of being alone, and afraid. I told them about the time before Tommy was born and Charlie and Kate were in the hospital at the same time. I told them about the desperation I felt. How I knew something was wrong, but I didn't know what it was. I told them about the doctor who told me I was over reacting, and that there was nothing wrong with my daughter, that she was too fat to be sick, that fat babies were not sick babies. I told them about the hope that I had gained as my children started on their Gammagard, the medicine the employees made. I talked about the excitement that we had when our children flew across country, went to Disney World, and didn't get sick. I thanked them, and I told them that WHAT THEY DO MATTERS. That their jobs were more then just a job, that they truly changed our lives.
Over the last 3 years, we've continued to go to the plant with the kids, to keep reminding them that they matter, their jobs matter, that we appreciate them every day. Every time we do something we couldn't do with out them, and the medicine they make we are grateful. We've built relationships with the employees at Baxter and over time with the people who collect their plasma, and even some of the people who donate the plasma to make their medicine.
We try, as much as possible to help our kids see that they are not alone in this fight. We want them to know that they have this enormous support system standing behind them, cheering them on, making sacrifices and working at a difficult job so they can be like any other kid in every way possible. It's one of our goal for the kids, that they never feel the isolation that I felt in that first year.
Yesterday, the employees at Baxter amazed and humbled our family. You see, we always try to make sure our kids know that they are not alone, we spend time going to the plant, we talk about the people, we do as much as we can. Yesterday, the people at Baxter showed us in a way I could have never imagined that not only are we not alone, but that they really are cheering the kids on.
You see, Kate is having her Make A Wish Trip, she also chose to go to Disney World, and we leave next week. She really wanted to share that with her friends at Baxter, so she wrote them a letter to tell them that she is going, and is going to send postcards. We planned to go to the plant to drop off the letter. Instead of her just dropping of the letter, Baxter planned a send off party for her.
They had cake and sparkling cider, and they gathered in a room and brought princesses and had her bring her friends, and most of all, they laughed with us, and talked with us, and they spent time showing our kids how much they care. They humbled us. The people who make our medicine, the people who already give SO much to us, spent their very precious time being excited for us, and loving us. It was more then this mother could have ever asked for.
It's a phenomenal feeling to be in a moment that you realize your family will remember for the rest of their lives. A moment that will become a part of who you are as a person, a moment that changes you, that helps you feel less alone, moments that in the end define part of who you are.
It's an amazing thing to watch your daughter paint on the face of a man who makes her medicine...
to see your son sitting and having cake with the people who make it possible for him to go to school...
It's an incredible thing to watch a little girl sit with your daughter, to know that they go school together, do girl scouts together, and know that her Daddy makes it possible for your daughter to do those things.
How can it be anything less then marvelous to watch your husband talk about his children and the lives they live with the people who make it possible for them to live those lives.
There are not enough words to describe the way my heart feels, how wonderful that moment was when Kate said to me, "You know the best part about today Mommy? It wasn't the princesses, or the cake, it was that we got to do it our friends who make our medicine. "
In a few days time we'll get on a plane and head to Disney World and Kate's wish will come true. As we head to the plane, I'm not worried anymore, over the past 3 years as we've begun to trust that we really can live again, and that we can explore, we're getting on a plane knowing our support system is standing behind us, and my wishes have already come true.
Wednesday, February 4, 2009
Grandparents Day Tea
Each year, the first graders host a Grandparents Day Tea. They spend months learning about family, and long ago vs now, and how it all fits together. Last year, Charlie was a host in his classroom, and this year, Kate was a hostess in hers. My parents came down from the coast where they live to be a part of the special day. As an added bonus, that morning, Charlie recieved an award at school for excellence in academics and my parents were able to see him recieve his award as well. 
The kids were thrilled to have grandma and grandpa around to show them the classrooms and share such special days.
Oh... and tomorrow I need to tell you all about our Upcoming Make A Wish.
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