Showing posts with label Bean. Show all posts
Showing posts with label Bean. Show all posts
Remembering. . .
8/30/2010
I woke up at 4.30am, after a very sleepless night at the Ronald McDonald House, to shower and prepare for a long and uncertain day. We had to have Bean to pre-op by 5.30 am. It was a big day for him.
The night before, after having dinner with friends from Gainesville who came to be with us, I was sitting in their hotel room with Bean. My friend, Kim, and I were loving on him when he offered the sweetest smile. It was his first. It was as if, after five months of struggling to stay alive, he knew what was coming and was excited.
When I woke, that smile was the first thing I thought about and it kept me going all day.
My little Bean had been in heart failure since the day he was born (two months premature) and hadn’t had the energy to smile. His smile the previous night was a sneak peak of what I could expect post-op and it gave me confidence that morning. It was a day I had been dreading yet I woke up ready for it. Partly because I just wanted it behind us and partly because I knew Bean was finally going to be able to take a deep breath without turning blue, eat without sweating, begin the big business of growing and learning and laughing. I could hardly wait.
But first we had to get through August 31, 2005. It was a long day and I remember almost every detail. I remember Bean’s whimpers as they stuck him repeatedly trying to find veins in his dehydrated little body. I remember wishing I could feed him. I remember the moment pastor j and I had to hand him over to the o.r. nurse. I remember every call to the parent waiting room letting us know what was happening. "He’s sedated. . . he’s on bypass. . . he’s opened up. . .patches are on and looking good. . . Dr. Q. is closing. . .he’s off bypass. . . Dr. Q. will be out to see you soon."
the day after surgery, getting his bandages changed
In between all that, much time passed. I remember pacing the halls. I remember where I stood on the outside deck to talk with my parents and give them an update. I’m pretty sure that was the first time all day I broke down. I remember wandering the halls and seeing every t.v. streaming the devastation in New Orlean’s after Hurricane Katrina. It was surreal, to see the devastation a few states away caused by natural disaster and to look around the children’s hospital where so many kid’s were fighting for their own lives because their bodies had betrayed them in one way or another. The realities of a fallen world.
But that day, five years ago, wasn’t about me. It was about my Bean. About his tenacity and his strength. He was 9 pounds and some change at five months old. His cardiologist wanted to get him to a year because kids do better with open heart surgery with a little more weight on them, but Bean had other plans. His little ticker, the size of a walnut, just couldn’t make it that long. And, I’m pretty sure he was just itching to play with his older brother.
That day, as with every day since his birth, Bean taught us about perseverance, hard work, love, patience, acceptance and trust. He came through it all beautifully and, after a few hiccups in picu, woke up ready to eat, play, and explore.
getting ready for home therapy a few months after surgery
Five years later, he works just as hard. He works hard in therapy, in school, and at play. He embraces life and all of us fortunate enough to be in his world. I have watched him impact so many with his warmth, love, and acceptance. What a privilege to be Bean’s mom!
saying goodbye to his teacher of more than two years who had such an impact on him
ready for his first day of kindergarten
And, what a privilege to have access to the kind of medical technology that makes it possible to open up the chest of a 5 month old baby and apply pig skin patches to the holes in his tiny little heart, thereby correcting the flow of blood, and prolonging his life. Amazing!
playing with his brothers in the mountains
Bean saw his cardiologist last week for an echocardiogram and general check up. We were thrilled to get the news that his heart has healed so perfectly that unless a doctor was looking for those patches she/he would likely not see them. The tissue has grown over the patches so well that even if he experiences some leaks at any point in the future it would be a very different scenario than what we faced five years ago. After Bean took over the appointment by listening to the doctor’s and nurse’s heart with their stethoscope they sent us on our way and told us we didn’t have to return for two years! Two years!
It’s a great feeling!
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Bean turns five
3/31/2010
Five years ago today I went in to see my perinatologist for what had become a routine look at Bean. We had been doing this little routine for five weeks; non-stress test, 3D ultrasound to check on the size of some unusually large organs, a measure of the blood velocity in his brain to monitor anemia. All of these things, we thought, were related to the antibodies I had developed in my bloodstream that were not being very kind to our little Bean. Nothing about this pregnancy had been typical. Conception occured on our fourth (and would be last) cycle of fertility treatments, at 27 weeks we determined he was sick due to my antibodies, and on this day five years ago the atypical nature of my pregnancy with Bean continued.
When I went in for that routine visit my doctor reviewed everything with an even more somber contenance than he usually wore and rushed me to labor and delivery. I was 32 weeks along.
Within an hour our boy was with us. You can read all about his birth story here, then here, followed by here and here.
Today, he is five!
Today, he is full of life.
Today, he is one of the boys.
Today, he is a student.
Today, he has defined his interests and horseback riding reigns!
Today, he plays with gusto.
Today, his favorite cake is chocolate!
Today, my Bean is five and he is well loved!
HAPPY BIRTHDAY, BEAN!!
blooming and growing
3/25/2010
We are happy to be experiencing the first breaths of Spring around here. With longer days and Bradford Pears in bloom we know, without doubt, that we are about to witness the unveiling of Spring in all it's beauty. We will watch tiny buds turn into leaves on all our favorite trees and perennials burst through the thawing ground with a rainbow of color. We get to add to the rainbow of color with beautiful annuals that will bring us pleasure until Fall's first frost. We get to watch our planted seed peak through the soil to grow tall and proud and fill our home with color and frangrance. I love it all.
I have been getting the house ready for Spring. Bringing flowers in (from the grocer since we have no blooms yet!) to brighten things up.
Giving my favorite little birdie a new slate blue spring dress. Isn't she purty? She came from the dollar store. All sad and chalky white. I sprayed her with my favorite color and added a little dimension to her wings with some mocha craft paint. (The green frame up top, by the way, also from the dollar store. It was a yucky two toned brown before I hit it with some green)
Then I perched her in my grandmother's silver sugar bowl atop some cushy green moss.
But really, this time of year, I take my tinkering from inside to outside (before it gets too hot to tolerate).
These pots are all waiting to be filled with some flowery goodness. Our nurseries are just now stocking up. So while my pots wait, I gave them a little color.
It's a disease I tell ya! If I don't paint at least one thing a day. . . well, my day feels incomplete. Not yet finished. Like something was missing. And if I can't find anything around here to paint? I go to my mom's and paint her stuff. It's true. Just ask her.
The front porch is getting a little love, too. The old shutter I found at a junk place around here, the broom was handmade and was gifted to me by my mom. No, she didn't make the broom but requested it be made from this great little country store a half hour from here. And the pot is from a guy at our now defunct Farmer's Market. Love the patina on it.
Soon, my ferns will be out in their usual spots but for now I am enjoying playing with this space.
Look what I found outside. It's amazing that such tender leaves find their way through the firm winter ground.
This is my Black Eyed Susan. Love the way this stuff spreads.
And lookey lou, lots of Shasta Daisy! I actually thinned this out a ton and spread the glory into several pots so I can take some with me when we move.
Oh, and Cone Flower. Come on out Darling, I'm waiting!
So happy to see some green appearing on my Hydrangea after the winter we had!
And because I am so totally not patient and can't wait for the color to appear. . . I potted a minirose bush that will make the move with us.
It's exciting and daunting to see this sign in our yard! Exciting to begin the process of moving to the area of town where we are ministering. Exciting to have a clean slate, so to speak, to start fresh with decor. Exciting to settle into a neighborhood we hope to call home for many years to come. Exciting to enter this new season of growth.
Guess who else is growing?
Bean. He's about to turn Five! I can't believe it. We will celebrate by doing a few of his favorite things.
Spending the afternoon at Nonnie and Papa's, riding the horses, and eating cake.
Hope, you too, are enjoying the changes in your life!
looking ahead, way ahead
1/29/2010
Education for Bean is almost constantly on my mind.
Today, a press release from our hometown University put a smile on my face.
We are a long way from the college years but it's so good to see programs like these taking root.
Privilege
10/06/2009
Every afternoon I pick Bean up from school. I pull into a specially marked parking spot and wear a laminated star around my neck. This green star gives me a special privilege. It allows me to bypass the check in system; a machine that asks all sorts of information about the nature of your visit, takes your picture, then spits out a sticker with your photograph that you slap on your chest showing everyone you are allowed to roam the halls. My star also allows me to enter the school building 15 minutes before dismissal so that I can get my kid out before the rest of the students pour into the halls and outside to their waiting parents.
As I pull into my special parking place each afternoon I cross the pick-up line where parents have been sitting in parked cars for up to 30 minutes reading books and magazines or talking on the phone while they wait for their kids. They look up as I pass in front of their car, no doubt, seeing my star which identifies me as the parent of a special needs child. As I make my way to Bean’s room just before days end teachers are quietly lining their students up according to their way of transportation: walker, bus, or car. Even though parents are not allowed in the school at this time of day no one questions my presence, because of my star, but rather they give me a soft grin and a nod.
After I retrieve Bean from his class and gather his things we make our way back to our car, along with a handful of his classmates and their parents. I don’t always notice the parents waiting in the pick-up line outside. But today I did. As my green star blows in the wind and Bean wobbles beside me (and Tank stops to play in a puddle) I observe their glances. Peering over their reading material or watching while on the phone, I feel their looks. We are an obviously different group. Most have an atypical gate, some use walkers and one is in a wheelchair. Some wear glasses and some wear their diagnosis on their face, like Bean. I recognize their looks. Looks of pity, of interest, of compassion, of knowledge. I wonder what they are wondering. I start to guess but my thoughts are interrupted by the sound of Bean’s voice yelling, “T. . . . T . . .” as loud as he can. He is calling out to Tank who has moved on from the puddle to some rocks and is not keeping up.
As I hear Bean calling to his brother, rushing him along, I am flushed with pride as I realize that the star around my neck may give me school privileges but it’s the Star holding my hand that makes me feel like the most privileged person in the world every single day.
Down Syndrome Awareness Month
10/01/2009
In previous years, during the month of October, I have blogged daily in honor of Down syndrome awareness.It's not gonna happen this year. I just can't pull it off. There are all sorts of reasons.
One is that I don't have as much to say about Down syndrome in the sense of how it impacts us daily. It's part of the fabric of our days. It is our normal. Bean is not defined by Ds, though it is very much a part of him. On the one hand I don't think much about it. On the other, it is always with me. Somehow those two things have blended together for me.
Second, we just have a lot going on this month and I am finding it hard to keep up with the pace of our family. First up for the month is the first public service of our church. We have been in SC for more than 2.5 years now with the goal of beginning a new church. We hit some hard spots, made some changes, and started fresh last November. After nearly a year of meeting with our core group for worship, teaching, planning, building relationships, seeing new folks join us, and looking for a building we are ready to begin public services. This Sunday, Oct. 4, is the big day. It's a housewarming of sorts. A celebration of all the Lord has brought our little church through. And it's a way to introduce ourselves to our community in a more formal way. We are excited! We even have our website up and running. Check us out: Riverside Community Church.
So, I'll be in and out. Posting some about Down syndrome as well as other goings on in our family. And for those of you that don't know much about Down syndrome maybe you will learn something new from our family. Next time I check in I will point you toward others that will be blogging about Ds more regularly than myself, in case your interested.
Happy October!
Anniversary
8/25/2009
Four years ago, on Aug. 31, James and I carried Bean through a hospital corridor for major surgery. Surgery to repair his three heart defects. A surgery that would end his five month battle with heart failure. A surgery that would allow him to wake up, experience energy for the first time, drink milk without sweating and turning blue from lack of oxygen, gain weight, and get down to the business of growing and learning. And that is what happened.
But on that day. The day we woke up at the Ronald McDonald House at a Children's Hospital in a town not our own. The day we had to carry our son into the hospital at 5am to be prepped for open heart surgery and hand him over to a surgical team that we had no choice but to trust. The day we paced the halls of the hospital for five hours waiting to hear that surgery was over and he was off bypass. That day was tough.
Tom, over at Narrow Ridge, captures it beautifully in a clip from the documentary he is making about his son, Ian. While I do not know the reason for their hospital visit there are many things I find powerful about this clip. Ian's contentment in his mother's arms as they walk the hospital corridor. The medical personnel that pass, glancing at Ian, another patient in a hospital full of patients. Ian's mom, the way she looks up and sighs as she holds her son tightly and waits for the next step. And the music choice. I find the words both haunting and hopeful.
But on that day. The day we woke up at the Ronald McDonald House at a Children's Hospital in a town not our own. The day we had to carry our son into the hospital at 5am to be prepped for open heart surgery and hand him over to a surgical team that we had no choice but to trust. The day we paced the halls of the hospital for five hours waiting to hear that surgery was over and he was off bypass. That day was tough.
Tom, over at Narrow Ridge, captures it beautifully in a clip from the documentary he is making about his son, Ian. While I do not know the reason for their hospital visit there are many things I find powerful about this clip. Ian's contentment in his mother's arms as they walk the hospital corridor. The medical personnel that pass, glancing at Ian, another patient in a hospital full of patients. Ian's mom, the way she looks up and sighs as she holds her son tightly and waits for the next step. And the music choice. I find the words both haunting and hopeful.
Going Green
8/11/2009
After staring at paint cards for 10 days I finally decided on a color for my 10 drawer dresser.
Apple Green. And once I was sure of the color I put everything else aside and loaded up the boys for a trip to Lowe's. And for fun I allowed Tank to walk while I pushed Bean in the shopping cart. What a great decision that was. Moments after stepping into the paint section Tank opened a jar of antique glaze, which is greasy and black, and started finger painting. I took the jar and put it in the cart to purchase while groveling to the paint lady, who was not amused, for something to help me clean up my disaster of a child. A bit later while talking to Paint Lady about my paint needs, Bean hurled the bottle of antique glaze out of the cart onto the concrete floor. It shattered. And black, greasy goop went everywhere. Within 10 seconds five Lowe's employees descended like a hazmat team with a bag of powder and a large bottle of liquid and they went to work cleaning as they asked me to keep my children away. Sure thing.
Oh, and in the midst of that a stranger approached me to discuss her concerns for Bean's skin. "His legs looks bad." "Don't you use sunscreen on him?" "Is it painful?" My telling her that Bean has sensitive skin and was prone to heat rash did not seem to satisfy her. "Isn't there something you can do about it?" "Poor thing." "And sunscreen really won't help?"
And people wonder why I'm such a homebody.
Once home I set to work sanding, priming and painting.
Once dry I distressed it a bit and then accepted my dresser's thanks for the face lift.
It's December now and I've come back to visit this old post to link up to Funky Junk Interiors, a new fav blogspot of mine, to share my diy dresser. Still loving the green!
On the third day of summer. . .
6/10/2009
After the fanfare,
hoopla,
and accolades
of the last day of school, summer has been a bit of an adjustment around here. Spinner is wandering aimlessly around the house while reading his new "chapter" books. I think he has already plowed through four of the ten that I bought him for the summer.
When he's not reading he is experimenting with new ways to take in fluids.
When he gets really bored he starts counting books.
Bean, no doubt sensing that I long for more laundry to wash, has returned to his old ways of stripping all his clothes (and diaper) before falling asleep.
Tank is empathizing with my desire for a little more estrogen around here and trying to find ways to meet that need in my life.
And I am doing a lot of this. . .
because Tank thinks it is hiLARious to lock all the interior doors, over and over and over again. It never gets old for him.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
How is your summer starting out?
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