Tuesday, July 17, 2012
Kylie Grace Byrd
Yesterday, a fellow facebook friend & Down syndrome Mommy, Stephanie Byrd, lost her sweet baby girl very unexpectedly. I created this ChipIn for them..I have no idea if there was any life insurance on Kylie but I do know a lot of insurance companies won't even cover a child with Down syndrome, and we all know how expensive funerals can be. Let's help this family out, I know nothing will make them feel better at this moment but we can all do our part to help out a little. Rest in peace sweet Kylie Grace!
Saturday, March 10, 2012
If I could go back & change one thing...
As you all know, Tucker was born with Down syndrome (Trisomy 21). This month we celebrate World Down Syndrome Day, March 21st (3 copies of the 21st chromosome) and I've seen lots of my Down syndrome community on facebook posting lots of different facts about DS. I have also seen where some parents of a child w/DS that maybe had a prenatal diagnosis created a pretty cool birth announcement for their child, including things about the diagnosis & what the future holds for them. I always thought that was so neat & have wished that Randall & I would have given our friends & family a heads up on things because it's hard trying to teach everyone as we go sometimes & can be emotionally stressful for both of us to try & explain things that we see as "normal" now. So, I've decided to put a few things out there so that people know more about Tucker.
First, I'd like to write a letter, basically what I wish I could go back & do so that there would be less confusion on things. Here goes....
Hello world! Tucker Cole Mitchell arrived December 9, 2009 at 7:52p.m. He was a tiny 4lbs & 17in. long. The next morning his pediatrician was making her rounds, giving all the new babies a clean bill of health. Sadly, we were told some physical characteristics made them think our little man may have something called Down syndrome and they would have to do further testing to make sure. It took a week for the results to get back. We held hands every night, crying & praying to God that it was all just a dream and that this sweet little boy would be perfectly healthy. While waiting for results, Tucker had 3 echocardiograms, numerous x-rays and bloodwork, an NG Tube (feeding tube), IV antibiotics, and oxygen, which meant he had to stay in the Special Care Nursery. We got a phone call from the pediatrician, test results were in. Randall & I couldn't wait to get to the hospital & find out so we asked her to tell us over the phone. Down syndrome...he had it & I was devastated. The first thought to cross my mind was, "what will happen to him when we are gone?".."How would this affect Emma?"..then many thoughts after that, pure worry was all I did for the next few days. Then, I came to a point where I realized this was it, God placed Tucker with us for a reason & I just had to put on my big girl panties & deal with it because this is life from now on whether we want to accept it or not. Since then we have researched & found out that it's not as bad as we thought. People with Down syndrome are delayed in some areas but they can do many things you & I can do. For instance, they can go to school, graduate, get jobs, some even date & get married..and, gasp!..have children of their own!!! Don't worry, your child cannot "catch" Tucker's Down syndrome, the only thing contagious about him is his smile & his laugh. And no, he isn't happy all the time, he gets mad & pitches a fit just like any other child. Also, nothing Randall or I did caused Tucker to have DS just to be clear on that matter, so no one's to "blame". Tucker is doing so many amazing things now, he can sign at least 10 signs & learns more & more everyday...he isn't talking right now but the sign language is helping him to communicate & we have faith that one of these days he will talk as much as Emma (if that's possible haha). It is a fact (& sorry I don't know numbers on this fact) that siblings of children with Down syndrome feel that their life has been enriched by having their brother/sister in their life; we can already tell that Emma loves her brother so much & I feel that she will be one of his biggest advocates as they grow up. To wrap things up, Tucker is our miracle baby...we have been back & forth to Atlanta more times than I'd like to even count & he sees many specialists but that's just part of life these days. Saying that, I don't think any of us would change a thing about him, he is perfect!
Facts about Down syndrome:
*Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.
*The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.
*People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
*Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.
* Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.
*Once a woman has given birth to a baby with Trisomy 21, it is estimated that her chances of having another baby with Trisomy 21 is 1% greater than her chances by age alone.
*People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it and it's not something your typical child can "catch" from my child.
*People with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”
For more information, visit www.ndss.org, www.atlantadsaa.org
First, I'd like to write a letter, basically what I wish I could go back & do so that there would be less confusion on things. Here goes....
Hello world! Tucker Cole Mitchell arrived December 9, 2009 at 7:52p.m. He was a tiny 4lbs & 17in. long. The next morning his pediatrician was making her rounds, giving all the new babies a clean bill of health. Sadly, we were told some physical characteristics made them think our little man may have something called Down syndrome and they would have to do further testing to make sure. It took a week for the results to get back. We held hands every night, crying & praying to God that it was all just a dream and that this sweet little boy would be perfectly healthy. While waiting for results, Tucker had 3 echocardiograms, numerous x-rays and bloodwork, an NG Tube (feeding tube), IV antibiotics, and oxygen, which meant he had to stay in the Special Care Nursery. We got a phone call from the pediatrician, test results were in. Randall & I couldn't wait to get to the hospital & find out so we asked her to tell us over the phone. Down syndrome...he had it & I was devastated. The first thought to cross my mind was, "what will happen to him when we are gone?".."How would this affect Emma?"..then many thoughts after that, pure worry was all I did for the next few days. Then, I came to a point where I realized this was it, God placed Tucker with us for a reason & I just had to put on my big girl panties & deal with it because this is life from now on whether we want to accept it or not. Since then we have researched & found out that it's not as bad as we thought. People with Down syndrome are delayed in some areas but they can do many things you & I can do. For instance, they can go to school, graduate, get jobs, some even date & get married..and, gasp!..have children of their own!!! Don't worry, your child cannot "catch" Tucker's Down syndrome, the only thing contagious about him is his smile & his laugh. And no, he isn't happy all the time, he gets mad & pitches a fit just like any other child. Also, nothing Randall or I did caused Tucker to have DS just to be clear on that matter, so no one's to "blame". Tucker is doing so many amazing things now, he can sign at least 10 signs & learns more & more everyday...he isn't talking right now but the sign language is helping him to communicate & we have faith that one of these days he will talk as much as Emma (if that's possible haha). It is a fact (& sorry I don't know numbers on this fact) that siblings of children with Down syndrome feel that their life has been enriched by having their brother/sister in their life; we can already tell that Emma loves her brother so much & I feel that she will be one of his biggest advocates as they grow up. To wrap things up, Tucker is our miracle baby...we have been back & forth to Atlanta more times than I'd like to even count & he sees many specialists but that's just part of life these days. Saying that, I don't think any of us would change a thing about him, he is perfect!
Facts about Down syndrome:
*Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.
*The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.
*People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
*Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.
* Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.
*Once a woman has given birth to a baby with Trisomy 21, it is estimated that her chances of having another baby with Trisomy 21 is 1% greater than her chances by age alone.
*People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it and it's not something your typical child can "catch" from my child.
*People with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”
For more information, visit www.ndss.org, www.atlantadsaa.org
Saturday, January 28, 2012
lazy Saturday..
As I'm typing Emma is at the store with my Paw-Paw while Tucker plays with all of her toys! :) She looks forward to these trips knowing that he will buy her whatever type of candy she wants, no matter the sugar content or the messiness it may create. I secretly love these times though, I never got to spend time with my great-grandads, but when I was younger my summers & weekends were spent at my Paw-Paw's house..next to my Daddy he is definitely my hero. I know she has no idea now but when she gets older she will look back on the times she spent outside "helping" him with a project & realize just how special that time was.
On another note, we are trying to get Tucker to try some more "advanced" sippy cups, the one he takes now is the Nuk training cup for 6mos. +, it's by far his favorite & up until now he hasn't wanted anything but that besides his bottle. He is taking more & more steps everyday, which makes me so happy and proud as his mommy. So many people tell me, "oh just wait, you'll be wishing he was back to crawling"..I just tell them I've waited 2 years for this moment so I will suck it up when he starts getting into more stuff because it's been a long time coming! I sometimes think, "am I going to have to advocate for Tucker the rest of his life, trying to prove that his life is worth something?" The answer is yes, you will always have people who can't or won't believe he will do anything but the truth is he can do whatever he sets his mind to do. I sometimes dream about the day he participates in his first Special Olympics, or graduates from high school, it makes me want to cry because I know how proud & special these moments will be for him & me, too. He is already so smart & can flirt like no one else, my husband jokes that they need to have a father-son outing because Tucker gets all the ladies!!
Some of you know that I've started a Down syndrome support group in my area, we don't have that many Mommies right now but I'm praying that in time more will be willing to join & support one another..I am trying not to get discouraged but sometimes it's hard no to when everyone is telling you it's impossible. Also, Emma & I are hopefully going to visit our local ARC this week, I can't wait! Tucker won't be able to participate in anything until he's 18 but I would like to volunteer for them & do anything I can to help out so I hope they will allow me to do that.
That's it for now, I have one stinky little boy who's diaper needs to be changed! :) Hope everyone has a wonderful weekend!!
On another note, we are trying to get Tucker to try some more "advanced" sippy cups, the one he takes now is the Nuk training cup for 6mos. +, it's by far his favorite & up until now he hasn't wanted anything but that besides his bottle. He is taking more & more steps everyday, which makes me so happy and proud as his mommy. So many people tell me, "oh just wait, you'll be wishing he was back to crawling"..I just tell them I've waited 2 years for this moment so I will suck it up when he starts getting into more stuff because it's been a long time coming! I sometimes think, "am I going to have to advocate for Tucker the rest of his life, trying to prove that his life is worth something?" The answer is yes, you will always have people who can't or won't believe he will do anything but the truth is he can do whatever he sets his mind to do. I sometimes dream about the day he participates in his first Special Olympics, or graduates from high school, it makes me want to cry because I know how proud & special these moments will be for him & me, too. He is already so smart & can flirt like no one else, my husband jokes that they need to have a father-son outing because Tucker gets all the ladies!!
Some of you know that I've started a Down syndrome support group in my area, we don't have that many Mommies right now but I'm praying that in time more will be willing to join & support one another..I am trying not to get discouraged but sometimes it's hard no to when everyone is telling you it's impossible. Also, Emma & I are hopefully going to visit our local ARC this week, I can't wait! Tucker won't be able to participate in anything until he's 18 but I would like to volunteer for them & do anything I can to help out so I hope they will allow me to do that.
That's it for now, I have one stinky little boy who's diaper needs to be changed! :) Hope everyone has a wonderful weekend!!
Tuesday, January 17, 2012
Three's a Charm!
I can't believe how long it's been since I posted last! A lot has been going on since I last posted, like our baby girl that's due in May! There has been a lot going on in the Down syndrome community also, like little Ryan who has modeled for Target & Nordstrom, he's creating quite a stir & people are seeing how valuable our kids are to society. I am so thankful for that, as a mother it makes me so proud that the world is seeing that people with Down syndrome have something to contribute to society.
On another note, I hear people say all the time, "Oh you're so strong, I could never raise a child with special needs". I used to think this too, until God gave me Tucker. I don't think that I'm any stronger than any other mom I know, I just have to go through more on the emotional aspect of it..no one wants to see their child hurting. Those doctors don't know everything, I think they try to tell people the worst to prepare them, but I don't agree with that. Too many doctors these days try to play God, I'm so glad I have a wonderful OB who, despite the fact we didn't know about Tucker's "extra", told me he was a gift from God! In the past two years I have laughed, cried, & worried more than I ever thought possible..but I wouldn't trade one second of it. I have also learned more than I ever thought possible, too...about myself, my husband, & my kids and how such a tiny little person can teach you so much. I still have my bad days, like when I see someone and they ask me how old Tucker is and I tell them he's two and they look at me like I'm crazy. Or when someone's child who is younger than him is walking and they ask me how old he is...by the way, I don't go out of my way to tell anyone, I think I almost see it as if it's a priviledge for them to know he has Down syndrome, so most people just walk away wondering. Most of the time I only tell if someone pushes the subject, it shuts them up quick! But mainly, I don't see Tucker as Down syndrome, that's just something he has, along with thyroid issues, Pulmonary Hypertension, & other health issues..so why would I say, "Hi, this is Tucker, he has Down syndrome"? To me he is just our silly little boy who loves to make everyone smile.
With the noise of kids playing in the background and baths needing to be done I'm headed off to finish up my Mommy duties for the day. Sorry if it was a little choppy, trying to cover lots of things in a short amount of time & lots of pauses for 2 needy little kiddos.
On another note, I hear people say all the time, "Oh you're so strong, I could never raise a child with special needs". I used to think this too, until God gave me Tucker. I don't think that I'm any stronger than any other mom I know, I just have to go through more on the emotional aspect of it..no one wants to see their child hurting. Those doctors don't know everything, I think they try to tell people the worst to prepare them, but I don't agree with that. Too many doctors these days try to play God, I'm so glad I have a wonderful OB who, despite the fact we didn't know about Tucker's "extra", told me he was a gift from God! In the past two years I have laughed, cried, & worried more than I ever thought possible..but I wouldn't trade one second of it. I have also learned more than I ever thought possible, too...about myself, my husband, & my kids and how such a tiny little person can teach you so much. I still have my bad days, like when I see someone and they ask me how old Tucker is and I tell them he's two and they look at me like I'm crazy. Or when someone's child who is younger than him is walking and they ask me how old he is...by the way, I don't go out of my way to tell anyone, I think I almost see it as if it's a priviledge for them to know he has Down syndrome, so most people just walk away wondering. Most of the time I only tell if someone pushes the subject, it shuts them up quick! But mainly, I don't see Tucker as Down syndrome, that's just something he has, along with thyroid issues, Pulmonary Hypertension, & other health issues..so why would I say, "Hi, this is Tucker, he has Down syndrome"? To me he is just our silly little boy who loves to make everyone smile.
With the noise of kids playing in the background and baths needing to be done I'm headed off to finish up my Mommy duties for the day. Sorry if it was a little choppy, trying to cover lots of things in a short amount of time & lots of pauses for 2 needy little kiddos.
Monday, January 10, 2011
Snowy Days
We've been enjoying the snow today, as you can see! I've been thinking about all the wonderful things we have in store for us this year. I'm still in the process of starting my support group, I have a few people interested, which is much better than none! Also, I have some pretty awesome fundraising ideas for this year's Buddy Walk.
Emma is doing so good with her sentences & trying to teach her brother so much. She comes up to me and says, "Look Mama, Tucker my brudder!". It's so cute, I have to say it melts my heart to see the way she is with Tucker, she adores him & he feels the same about her; she can walk away from playing with him & he cries out for her.
Tucker has come a long way since we started physical therapy, although he still needs some work on the occupational theraphy end of it because he's not exactly where he should be as far as picking small objects up. I have to say he is VERY attatched to me, which of course I absolutely love (most of the time). I admit I've made him that way!!! I'm still amazed at how far he has come in the past year. If it wasn't for him I wouldn't be a parent liaison for the hospital, I wouldn't be trying to start a support group for other parents in our area, and I probably wouldn't try to be an advocate for people with Down Syndrome.
Saturday, November 20, 2010
1st Birthday
Yee Haw Brown Birthday
Shutterfly birthday cards and birthday party invitations.
View the entire collection of cards.
Friday, July 2, 2010
4th of July Weekend
I haven't written in a while so I felt like posting a new blog. Something has been weighing heavy on my mind: when you're pregnant you have this vision of how everything is going to turn out & that everything will be just perfect. I've realized nothing goes like you planned, but in the end you will be a lot more happy with the life you have. I may not know when my son will crawl or even walk, but those moments are going to be even more special because of that.
We are looking forward to spending this 4th of July (Tucker's 1st) weekend with our wonderful family. Happy 4th of July everyone!!!
Subscribe to:
Posts (Atom)