Showing posts with label Down syndrome. Show all posts
Showing posts with label Down syndrome. 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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It matters
2/11/2010
The use of the R-word is back in the limelight again.
By now I’m sure everyone has heard about Rahm Emanuel’s use/misuse of the word, followed by Sarah Palin’s rebuke, followed by a sit down with Disability Leader’s to discuss the damage this word causes.
Followed by Rush Limbaugh’s response, who called the meeting between Emanuel and Disability Leaders a "Retard Summit," followed by a letter from Tim Shriver, Chairman of the Special Olympics, appealing to Rush in much the same way he and other’s did to Emanuel.
Too much?
An over reaction?
Political Correctness gone mad?
Maybe.
Maybe not.
In many respects the r-word has gone the way of “moron” and “imbecile” and “idiot,” words that once medically described the cognitively impaired. These words were adopted by popular culture to describe something or someone dumb.
The r-word is definitely used by many in this way. “Oh, I can’t believe I did that. I’m so R,” “You look like a R wearing that!” And so on.
I think much of the time those that use it so cavalierly are not intending to make fun of someone with cognitive delays when it rolls off their tongue.
Or, at least, that’s what I’m told.
But isn’t that what using the word implies?
The word exists because it has been a diagnosis for people like my son for years.
It is associated with people like my son.
When it is thrown out as an insult or used in a pejorative way it’s done so because, in our minds, we associate it with people who have low IQ's.
It is one of the first things we were told after Bean's diagnosis. "Your son will have moderate to severe retardation."
That word.
Retarded.
It's a punch in the gut.
The first time I felt it was sitting in the family room in NICU listening to the doctor describe our precious boy.
The last time I heard it was yesterday as two middle school boys were walking by our house and one called the other a "retard" while acting out the meaning and laughing heartily.
Another punch in the gut as I realized that one day soon Bean will come to understand that he is the subject of the joke.
Still don't get it? Read this.
By now I’m sure everyone has heard about Rahm Emanuel’s use/misuse of the word, followed by Sarah Palin’s rebuke, followed by a sit down with Disability Leader’s to discuss the damage this word causes.
Followed by Rush Limbaugh’s response, who called the meeting between Emanuel and Disability Leaders a "Retard Summit," followed by a letter from Tim Shriver, Chairman of the Special Olympics, appealing to Rush in much the same way he and other’s did to Emanuel.
Too much?
An over reaction?
Political Correctness gone mad?
Maybe.
Maybe not.
In many respects the r-word has gone the way of “moron” and “imbecile” and “idiot,” words that once medically described the cognitively impaired. These words were adopted by popular culture to describe something or someone dumb.
The r-word is definitely used by many in this way. “Oh, I can’t believe I did that. I’m so R,” “You look like a R wearing that!” And so on.
I think much of the time those that use it so cavalierly are not intending to make fun of someone with cognitive delays when it rolls off their tongue.
Or, at least, that’s what I’m told.
But isn’t that what using the word implies?
The word exists because it has been a diagnosis for people like my son for years.
It is associated with people like my son.
When it is thrown out as an insult or used in a pejorative way it’s done so because, in our minds, we associate it with people who have low IQ's.
It is one of the first things we were told after Bean's diagnosis. "Your son will have moderate to severe retardation."
That word.
Retarded.
It's a punch in the gut.
The first time I felt it was sitting in the family room in NICU listening to the doctor describe our precious boy.
The last time I heard it was yesterday as two middle school boys were walking by our house and one called the other a "retard" while acting out the meaning and laughing heartily.
Another punch in the gut as I realized that one day soon Bean will come to understand that he is the subject of the joke.
Still don't get it? Read this.
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.
how can you help?
10/15/2009
In many countries children with Down syndrome are institutionalized at the age of 4 or 5. Reece's Rainbow is a ministry dedicated to locating those children and helping them find a family. Hundred's of kids have been placed and saved from the neglect and abuse found in many institutions. There are many, many more waiting for their families. Maybe you can help. Click the link below to find out. (this is a 12 minute video and well worth the time)
Reece's Rainbow
Reece's Rainbow
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.
Blogging about Down syndrome
10/02/2009
As I said yesterday I don't feel like I can commit to this years Get it Down: 31 for 21 challenge.
There are many others, however, that are stepping up to the challenge. You can find a complete list over at Unringing the Bell, where Tricia has organized this effort for the third year in a row.
Go take a look. You are sure to meet some of the cutest kids ever!
There are many others, however, that are stepping up to the challenge. You can find a complete list over at Unringing the Bell, where Tricia has organized this effort for the third year in a row.
Go take a look. You are sure to meet some of the cutest kids ever!
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!
The R word. . . do you "get it?"
9/13/2009
Chances are, if you are around kids at all, you have heard the 'R' word used in derogatory ways. To describe themselves, or someone else, as being or doing something stupid. Or silly. Or goofy. Sometimes it is used to be cruel.
The other day I was walking out of the YMCA with Bean and I observed a group of middle school girls on the playground. The group of them watched us, conversed a little, then looked back at us when I heard one of them say in a disgusted voice, "I think he's retarded." I didn't say anything. My immediate thought was that I was glad Bean didn't get it yet. And then I wondered when he would. And what it would do to him.
Kids aren't the only one's guilty of using the 'R' word. Adults are too. I suspect that kids pick up the word from adults as much as they do their peers.
Part of why I didn't say anything to those girls on the playground was because I had that punch-in-the-gut feeling that Tammy and Parker describe here at Praying for Parker. Please take the time to read her post.
It's time that more people "get it."
The other day I was walking out of the YMCA with Bean and I observed a group of middle school girls on the playground. The group of them watched us, conversed a little, then looked back at us when I heard one of them say in a disgusted voice, "I think he's retarded." I didn't say anything. My immediate thought was that I was glad Bean didn't get it yet. And then I wondered when he would. And what it would do to him.
Kids aren't the only one's guilty of using the 'R' word. Adults are too. I suspect that kids pick up the word from adults as much as they do their peers.
Part of why I didn't say anything to those girls on the playground was because I had that punch-in-the-gut feeling that Tammy and Parker describe here at Praying for Parker. Please take the time to read her post.
It's time that more people "get it."
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.
This Just In!
6/11/2009
From Dr. Betz, the specialist from Shriners in PA that has consulted on Wil's "instability:"
Got all the films.
Looks perfect.
NO instability at all!
Will try to call later.
If you have followed along with us in this year long uncertainty (this time last year they were ready to fuse his spine) then you know how amazing it is to hear this! We are overjoyed!!
Got all the films.
Looks perfect.
NO instability at all!
Will try to call later.
If you have followed along with us in this year long uncertainty (this time last year they were ready to fuse his spine) then you know how amazing it is to hear this! We are overjoyed!!
package of love
5/28/2009
We had just returned from Bean's non-MRI and he was cranky. Truth be told I was a little cranky, too. For Bean, nothing cures the cranks like a little Elmo so we grabbed a snack, put in an Elmo movie and snuggled on the sofa. That's when I heard a big thud at the door.
Strange sound, not really a knock, but something definitely hit the door. I peered over the sofa and caught a glimpse of our friendly, gentle, selfless post woman jumping in her post-mobile and speeding off. I went to the porch to find that, with tender love and care, she had lobbed a package onto our porch, evidently from roadside based on the indentation in the box.
I gathered our package and brought it inside to inspect, hoping that it wasn't fragile. Bean also did some inspecting.
Strange sound, not really a knock, but something definitely hit the door. I peered over the sofa and caught a glimpse of our friendly, gentle, selfless post woman jumping in her post-mobile and speeding off. I went to the porch to find that, with tender love and care, she had lobbed a package onto our porch, evidently from roadside based on the indentation in the box.
I gathered our package and brought it inside to inspect, hoping that it wasn't fragile. Bean also did some inspecting.
We cracked it open to find that the T21 Traveling Afghan had made it's way to us, along with a journal revealing it's adventures.
Bean, ever the cautious one with anything unfamiliar, looked and touched with curiosity and gentleness.
Together we flipped through the pages of the journal, reading about the lives this lovingly made afghan had already touched. Other kids, from other cities and states, that share the diagnosis of Trisomy 21 are now sharing this afghan and calling it their own for one week before passing it along to the next family.
Bean enjoyed a little hide-and-seek, like so many other kids have done with this afghan.
It was pulled in to the nightly mosh pit.
And it joined him in bed. . .
This weekend we will say goodbye to this special afghan and send it on to the next family for more love and different experiences. If you want to keep up with the T21 travels be sure to check in here.
no phase two
3/18/2009
I didn't realize how anxious I was about Bean's x-ray until after the doctor told me that, while the measurement is still a little above "normal," it is not great enough to even warrant putting him through the MRI. "Come back in a year," he said.
Whew!
Whew!
Something
3/17/2009
James said I am getting slack on the blog and need to post something.
Something.
Oh, and here is something else. Please pray for Bean, he goes in tomorrow morning for phase one of follow up on AAI. If you were reading last year you may remember this, followed by this. Tomorrow, another x-ray. Later, CT and MRI.
Something.
Oh, and here is something else. Please pray for Bean, he goes in tomorrow morning for phase one of follow up on AAI. If you were reading last year you may remember this, followed by this. Tomorrow, another x-ray. Later, CT and MRI.
T21 Traveling Afghan, update
3/06/2009
The T21 Traveling Afghan has it's own blog now. If you want to follow the travels of the T21 Afghan and learn more about families around that globe that have loved ones with Down syndrome, then go here. Right now the afghan is hanging out in Iowa with The Flege Family.
Three Things
3/03/2009
1. I have mentioned before how valuable the on-line Down syndrome community has been to me. I have often wished I could take a road trip to meet all the great moms (and some dads) and kids that have helped me navigate the twisty and unexpected roads we have traveled since Wil's birth. I can't do that. But Little Miss E's mom has come up with the next best thing. A traveling afghan that will make many stops at the homes of families I have enjoyed getting to know in the blogiverse. A notebook will accompany the afghan with notes from families around the world. Yes, the world. This little afghan has quite a journey ahead. When it shows in our mailbox I will be sure to post a photo. Well, maybe. See #3.
2. Speaking of the Down syndrome community. Avery, son of Jennifer Graf Groneberg, author of Road Map to Holland, is about to have open heart surgery. Many of us know all too well how difficult it is to hand your child over for a surgery such as this. Remember them on March 11 as Avery goes in for surgery. You can read more about it here and even leave her a word of encouragement if you wish.
3. My youngest - by far the most destructive child of our brood - decided to play "let it float" with my camera. My camera did not float. In case you are wondering. It also did not survive the game. He also played said game with my bottle of migraine meds. It did float but he didn't like that so he submerged them, allowing water to fill the bottle and dissolve my costly, good as gold, pills. After that he made his way into Luke and Wil's room and dumped out all the colored sand Luke was using for a project. Bright oranges, blues, yellows, greens, browns ALL. OVER. the carpet. And my vacuum? It's been broken for a week. Fun times around here. And costly.
By the way. . . If you want to follow the afghan just click on the T21 Traveling Afghan button on my right sidebar. It will take you to Little Miss E's blog where she will provide updates and pictures of all those who receive it.
2. Speaking of the Down syndrome community. Avery, son of Jennifer Graf Groneberg, author of Road Map to Holland, is about to have open heart surgery. Many of us know all too well how difficult it is to hand your child over for a surgery such as this. Remember them on March 11 as Avery goes in for surgery. You can read more about it here and even leave her a word of encouragement if you wish.
3. My youngest - by far the most destructive child of our brood - decided to play "let it float" with my camera. My camera did not float. In case you are wondering. It also did not survive the game. He also played said game with my bottle of migraine meds. It did float but he didn't like that so he submerged them, allowing water to fill the bottle and dissolve my costly, good as gold, pills. After that he made his way into Luke and Wil's room and dumped out all the colored sand Luke was using for a project. Bright oranges, blues, yellows, greens, browns ALL. OVER. the carpet. And my vacuum? It's been broken for a week. Fun times around here. And costly.
By the way. . . If you want to follow the afghan just click on the T21 Traveling Afghan button on my right sidebar. It will take you to Little Miss E's blog where she will provide updates and pictures of all those who receive it.
Big Brother
2/12/2009
Luke was 2.5 when Wil was born. He was one excited big brother-to-be. He has taken the role of big brother very seriously from the time he found out he would hold the title. For Luke, if he was to be a BIG brother he had to change a few things. Soon after we told Luke that I was pregnant with Wil he announced that he wanted to start using the toilet. And he did. We "trained" a few times and that was it. I don't even recall him being in pull ups for long. BIG boys don't wear diapers OR pull ups, after all. Shortly after that, he announced that he was ready for a BIG boy bed. He transferred with ease and never looked back. Too, he took great interest in everything we were doing to prepare for Wil and told everyone at pre-school that he would soon have a brother.
One of the early thoughts I had after we received Wil's diagnosis was of Luke. And his excitement to have a little brother. To have a playmate. I wondered how Wil's delays would impact him. How would we explain it to him? How could we help him understand what having Down syndrome would mean for Wil when we didn't even understand?
I wondered whether Luke would protect Wil when needed. I wondered if Luke would accept and love Wil like we do, especially as he aged and began to notice the differences between them.
Yesterday, Luke came into the kitchen with a question.
Luke: Mom, when will Wil learn to talk?
Me: I don't know for sure. He is communicating with us now, through signs and some words.
Luke: But will he be able to talk one day?
Me: Yes, I believe he will. Kids with Down syndrome have different abilities when it comes to talking. Some speak a lot like you and me and some don't have as many words. And some have lots of words but might not speak as clearly as we do.
Luke: Will we know what he is saying.
Me: I'm sure we will. We know what he wants to communicate now so I feel sure we will be able to understand him just fine. Others may not always be able to understand him as well so we may have to help him out sometimes.
Luke: Will they make fun of him?
Me: Well, I hope not. But sometimes kids make fun of other kids that are different from them so it may happen from time to time.
Luke: Well, if that happens. . . I'm goin' in!!
Me: You're "goin' in?" Watchya gonna do after that?
Luke: I'm gonna let 'em have it (demonstrating pitiful boxing maneuvers).
Me: Hmmm, well, letting them "have it" may not be the best way to handle it. Maybe you could just tell them about Wil.
Luke: Yeah, I will tell them that Wil is really nice and just because someone has Down syndrome doesn't mean that they aren't really great. And I will tell them that Wil learns differently but he still learns stuff just like we do. And that he is a really good brother.
I don't think I have anything to worry about. Well, unless he "let's 'em have it!"
One of the early thoughts I had after we received Wil's diagnosis was of Luke. And his excitement to have a little brother. To have a playmate. I wondered how Wil's delays would impact him. How would we explain it to him? How could we help him understand what having Down syndrome would mean for Wil when we didn't even understand?
I wondered whether Luke would protect Wil when needed. I wondered if Luke would accept and love Wil like we do, especially as he aged and began to notice the differences between them.
Yesterday, Luke came into the kitchen with a question.
Luke: Mom, when will Wil learn to talk?
Me: I don't know for sure. He is communicating with us now, through signs and some words.
Luke: But will he be able to talk one day?
Me: Yes, I believe he will. Kids with Down syndrome have different abilities when it comes to talking. Some speak a lot like you and me and some don't have as many words. And some have lots of words but might not speak as clearly as we do.
Luke: Will we know what he is saying.
Me: I'm sure we will. We know what he wants to communicate now so I feel sure we will be able to understand him just fine. Others may not always be able to understand him as well so we may have to help him out sometimes.
Luke: Will they make fun of him?
Me: Well, I hope not. But sometimes kids make fun of other kids that are different from them so it may happen from time to time.
Luke: Well, if that happens. . . I'm goin' in!!
Me: You're "goin' in?" Watchya gonna do after that?
Luke: I'm gonna let 'em have it (demonstrating pitiful boxing maneuvers).
Me: Hmmm, well, letting them "have it" may not be the best way to handle it. Maybe you could just tell them about Wil.
Luke: Yeah, I will tell them that Wil is really nice and just because someone has Down syndrome doesn't mean that they aren't really great. And I will tell them that Wil learns differently but he still learns stuff just like we do. And that he is a really good brother.
I don't think I have anything to worry about. Well, unless he "let's 'em have it!"A dream realized
2/05/2009
This morning while at the gym, struggling to put one foot in front of the other on the treadmill but finding the distraction of the Today Show helpful, they teased me with a story to be shown in their next half hour.
It was about a high school senior with Down syndrome and his time on the basketball court. Well, I had to see that. So, I stayed on the treadmill and learned about women's heart disease, exercise equipment "as seen on tv" and their claim to fame, and more about our struggling economy.
Finally, the story I was waiting on came on. It's about a boy named Patrick who had his dream of playing on the high school basketball team realized. For me it was about a boy who was loved, cared for, and accepted by his peers. So glad I waited and got an extra 30 minutes of exercise to boot!
Enjoy! Patrick's dream
It was about a high school senior with Down syndrome and his time on the basketball court. Well, I had to see that. So, I stayed on the treadmill and learned about women's heart disease, exercise equipment "as seen on tv" and their claim to fame, and more about our struggling economy.
Finally, the story I was waiting on came on. It's about a boy named Patrick who had his dream of playing on the high school basketball team realized. For me it was about a boy who was loved, cared for, and accepted by his peers. So glad I waited and got an extra 30 minutes of exercise to boot!
Enjoy! Patrick's dream
Monday Miscellany
12/22/2008
1. Wil has been sick. For three months now. It is not uncommon for kids with Ds to hold onto colds or sinus issues for long periods. Typically their airways, ear canals, sinus cavities, etc. are smaller than the average kid so when they get "gunky" they have a hard time clearing it out. This has been true for Wil since he was an infant. I especially remember how bad he sounded after his heart surgery, and how long it lasted. When he was a baby he just sounded bad and that was it. He seemed to tolerate the stuffiness and sinus pressure well. Now that he is three? Not so much. 
He really lets us know that he does not feel good. And that eating is not comfortable. This has been a common reaction at the table as we try to find foods that he will tolerate. His preferred mode of comfort the last three months is being held, which at 32 lbs., is getting tough on my aging back. Poor guy, he is on his third round of antibiotics - each round getting stronger. This time he takes it for 20 days. If this doesn't clear out his sinuses then we are off to the ENT.
2. Wil is not all grump. He definitely has his feel good moments. When he does, he grabs Timothy and they wrangle the sofa cushions.
3. Timothy, when left alone, does things like this.
4. Luke is happy to have a little time off from school. He has been in the creative zone lately. This is what he came down wearing last night.
5. We are looking forward to a low-key Christmas. The little bit of Christmas shopping I do was done a wrapped a few weeks back. The boys and I will be doing some baking tomorrow and Wednesday, including a gingerbread house, and then we will enjoy our Christmas Eve tradition of homemade chili and fries, by chef James. He perfects the chili a little more each year! On Christmas day we will lay low, let the boys enjoy their new toys and then grill steaks with Nonnie and Papa.
And we will give thanks for Jesus as we celebrate Him!
Day 31
10/31/2008
It's been fun blogging every day this month to raise awareness of Down syndrome. I don't know if I necessarily did that. There is certainly a lot more I could have written about Down syndrome and the issues around it, like using people first language, or dispelling myths, or the use of the "R" word. There are other people that write about these things far better than I could so I decided to give you bits of our family, like I normally do. Because really, our lives, with Wil, pretty much reflect a typical family. Yes, we see doctors more often, we have a history of pretty significant medical issues, and Wil requires more attention in certain areas. But really? Those things have become so much a part of our story, our day to day lives, that I hardly think about it. Most days I don't think about the fact that Wil has Down syndrome. I am sometimes caught off guard in public when someone brings it up. I forget that he wears his diagnosis on his face because when I see his face I don't see Ds; I just see Wil, with his brilliant sparkling eyes, his rosy cheeks, and big grin. Just like any other toddler Wil has his playful, happy moments and his ornery, stubborn moments. He has favorite books, toys, food, activities and cartoons. And when he is not aggravated with his brothers he is loving on them.
James and I feel incredibly privileged to be Wil, Luke, and Timothy's parents. They each have important things to contribute to our family and to this world. When parents-to-be face a diagnosis of Down syndrome one of the concerns I hear is for their other children and how they will handle it or how it might negatively impact their lives. I hope that you see from our family that Wil (and his diagnosis) has only strengthened us, deepened our understanding of love, brought us more laughter and joy, and increased our sensitivity to others. If you have been reading along this month, thanks. I may take a little break. Or not. Depends on the day and what we have going on!
Now excuse me while I go dig through Luke's halloween candy.
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