Today we went to Brayden’s 5th birthday party. Brayden is 10 weeks younger than Jayden, and they have been friends since they were born. It was a beautiful day and wonderful outdoor party, with tractor rides, train rides, yummy food and a play set.
I will be honest, it was hard to be there, seeing all of the boys Jayden's age running and playing together, while Jayden played with us on the play set. He didn’t care. He would watch the boys then go back to playing with us, but it broke my heart. Parents stood around and lightly supervised their kids while they chatted about how as their children they get physically easier to take care of….while we tried to smile as we went up and down the play set with our kids. Our lives are just different. Not even bad. It was just a sad reminder of what Jayden can’t do, but a happy reminder that we are happy being different.
Sometimes, I wish I could walk into situations like that with that confidence I feel inside. Proud of my children, not sad or wishing they were "normal". I LOVE them JUST the way God made them, but selfishly, I wish they were a part of this world. I wish I could show people that the little things don’t matter, and kill them with kindness. I want them to think when I leave, wow. God shines so bright. I want to love my kids with the freedom they do. I want what she’s got inside. But, honestly, I mostly freeze. I become quiet and don’t want to talk in fear of what dumb thing they may ask or say---or what I may say back. Maybe this doesn't make sense to you...and that's ok.
God bless Kristen. She totally gets how we feel but didn’t want to leave us out….which would have been worse to not be invited. It just is what it is and I am not going to pretend it isn’t hard. Thank you, Brandts for including us and always making us feel welcome and loved. We love Brayden, and were so happy to share in his day!
10.29.2011
Oct 1: Brayden’s birthday
Stefanie is a writer and speaker, best known for her voice on her blog, Boyce Lane, which chronicles the beauty and pain of Sanfilippo Syndrome, a rare genetic disorder effecting her older two children. Learn more at www.StefanieBoyce.com
Sept 21: Missouri girls road trip
Talk about the perfect get away. Now, I love my family, but there is nothing like taking an extended weekend with my girls, road-trippin’ it to Aunt Sue’s listening to old 90’s hits! Angie, Michelle, Sarah, and I made the 10 hour journey to Branson and really had a blast! We “slept in”, drank coffee on the porch, ate breakfast in peace, took our time getting ready, and shopped all day. I was only responsible for feeding, dressing, bathing, and wiping one person, ME! Don’t get me wrong, I am not complaining about taking care of my kids, I just APPRECIATE both times! Thank you to Jut and Joan for pulling most of the weight when I was gone. I really couldn’t have left if you guys wouldn’t have helped out so, thank you!
To my girls, thanks for the fun, laughter, tears, car sickness, bad singing, deer legs, inside jokes, and memories! Love you!
Sue-thank you for hosting, for all your great ideas of things to do, your stories, treating us to lunch and pickles, and our photo shoot! We all really like you too!
To my girls, thanks for the fun, laughter, tears, car sickness, bad singing, deer legs, inside jokes, and memories! Love you!
Sue-thank you for hosting, for all your great ideas of things to do, your stories, treating us to lunch and pickles, and our photo shoot! We all really like you too!
Stefanie is a writer and speaker, best known for her voice on her blog, Boyce Lane, which chronicles the beauty and pain of Sanfilippo Syndrome, a rare genetic disorder effecting her older two children. Learn more at www.StefanieBoyce.com
Sept 20: Adventures in hearing aids
So both of the kiddos have hearing aids now, and they really don’t keep them in much. It has turned into a bit of a game. They say, “How fast can I disassemble them and put them in my mouth before mom gets me while she’s driving?” Brooklyn lost her set…Jut found them in the trash in a McDonalds bag. The next day, Jayden lost one ear at school. The next day, I sent him with the one he didn’t loose, and he lost that one somewhere between the bus and classroom. That same day, they found the one he lost from the previous day! Needless to say, these things, for as well as they work…need to be implanted!And we are already on set two with Jayden! Oh, did I mention they cost $2,000 a set!? That's $1,000 an ear X 4!
Stefanie is a writer and speaker, best known for her voice on her blog, Boyce Lane, which chronicles the beauty and pain of Sanfilippo Syndrome, a rare genetic disorder effecting her older two children. Learn more at www.StefanieBoyce.com
10.11.2011
Sept 16: Matt’s Game
One of my greatest honors is working with high school youth. Ironic, since Jayden and Brooklyn’s teen years will look much different than all the ones I work with. Part of our journey was grieving the loss of possibly never going to a dance recital for Brooklyn, a track meet or basketball game of Jayden’s, seeing them go to prom, or maybe even youth group. Yet, every week, twice a week, our life and home is full of teenagers.
God has a way of twisting things into blessings if we are willing to see it as that. I just adore many of our high schoolers and their faith truly inspires me. I love how they love and accept my kids, and that love has poured over into how they are with kids their age with special needs. They sit at their lunch tables, stick up for them, and some are “buddies” to the students. It is beautiful to see a big football Senior giggle with Jayden in our bounce house. Or watch a game of tag around the house with Brooklyn and Christina. It is just plain fun. I love our home full of high schoolers, the timing is just different than we thought it would be.
I see the gift God has given me. I may not watch Brooklyn’s dance competition, but I got to watch Michelles. I may not get to have a deep conversation with Brooklyn, but I can with 20 students in my living room. I may never hit my imaginary brake when Jayden learns to drive, but I will when Steph starts driving. I may never see Jayden in the band, but I saw Cameron. I may never see Jayden’s football game, but Sept 16, I saw Matt's.
Matt is one of the students that attended Beta at my house last spring and now attends deeper. One of the most humble, smart, God fearing football captains I have ever met. The apple doesn’t fall far from the tree because his mother is simply amazing. If you want to see what Jesus looks like as a Puerto Rican woman, look at Irma-it's beautiful!
The more I think of it, I have the best of both worlds. I hear parents of teens complain all the time about the cost of sports, attending another game, my kid doesn't pay enough, so and so's kid gets better fill-in-the-blank. I also know dad's that whine about a 3 hour dance recital, or never even go. I am so blessed to appreciate seeing any student do anything they love and am happy to support them, but don't have to deal with all the yucky stuff!
I sat with some of the girls and brought my camera to try to get some fun shots for the students. It was an awesome game and I had a great time. Funny. It’s all about perspective. Thank you-God-for giving me this moment and these incredible students.
God has a way of twisting things into blessings if we are willing to see it as that. I just adore many of our high schoolers and their faith truly inspires me. I love how they love and accept my kids, and that love has poured over into how they are with kids their age with special needs. They sit at their lunch tables, stick up for them, and some are “buddies” to the students. It is beautiful to see a big football Senior giggle with Jayden in our bounce house. Or watch a game of tag around the house with Brooklyn and Christina. It is just plain fun. I love our home full of high schoolers, the timing is just different than we thought it would be.
I see the gift God has given me. I may not watch Brooklyn’s dance competition, but I got to watch Michelles. I may not get to have a deep conversation with Brooklyn, but I can with 20 students in my living room. I may never hit my imaginary brake when Jayden learns to drive, but I will when Steph starts driving. I may never see Jayden in the band, but I saw Cameron. I may never see Jayden’s football game, but Sept 16, I saw Matt's.
Matt is one of the students that attended Beta at my house last spring and now attends deeper. One of the most humble, smart, God fearing football captains I have ever met. The apple doesn’t fall far from the tree because his mother is simply amazing. If you want to see what Jesus looks like as a Puerto Rican woman, look at Irma-it's beautiful!
The more I think of it, I have the best of both worlds. I hear parents of teens complain all the time about the cost of sports, attending another game, my kid doesn't pay enough, so and so's kid gets better fill-in-the-blank. I also know dad's that whine about a 3 hour dance recital, or never even go. I am so blessed to appreciate seeing any student do anything they love and am happy to support them, but don't have to deal with all the yucky stuff!
I sat with some of the girls and brought my camera to try to get some fun shots for the students. It was an awesome game and I had a great time. Funny. It’s all about perspective. Thank you-God-for giving me this moment and these incredible students.
Stefanie is a writer and speaker, best known for her voice on her blog, Boyce Lane, which chronicles the beauty and pain of Sanfilippo Syndrome, a rare genetic disorder effecting her older two children. Learn more at www.StefanieBoyce.com
Fall stuff: WOW and Dance class with B
This fall, I am trying a few new things. Wednesdays (Women of the Word), I am taking a Precepts class with Michelle Jenison, Deb Boerman is teaching, and have really enjoyed it so far. Studying Scripture this way is awesome, I love color coding so that helps, but even more, I am really getting a lot out of learning about the old and new covenant. I am desperate to learn more about and personally claim God’s promises.
On Thursdays, Brooklyn and I are taking our first dance class together! It is special for me because she is dancing in the class I used to teach at the very same park district. I think she is the youngest of the girls. She is not a huge fan of it, but I am up for making memories. Now, if I could just get her to let go of my leg and dance!!!!
On Thursdays, Brooklyn and I are taking our first dance class together! It is special for me because she is dancing in the class I used to teach at the very same park district. I think she is the youngest of the girls. She is not a huge fan of it, but I am up for making memories. Now, if I could just get her to let go of my leg and dance!!!!
Stefanie is a writer and speaker, best known for her voice on her blog, Boyce Lane, which chronicles the beauty and pain of Sanfilippo Syndrome, a rare genetic disorder effecting her older two children. Learn more at www.StefanieBoyce.com
Sept 13: Dinner at Angies
In all the years I have known Angie, I have never had dinner at her house. She is always so gracious to come to our house because of the kiddos, but this special night, she had us over for a great dinner. Ravioli…and not the kind in the can! Thank you Angie for a great night!
The picture is our "glamour shot" pose!
Stefanie is a writer and speaker, best known for her voice on her blog, Boyce Lane, which chronicles the beauty and pain of Sanfilippo Syndrome, a rare genetic disorder effecting her older two children. Learn more at www.StefanieBoyce.com
Sept 11: 10 years twin towers and Katie run
I remember exactly where I was. I had just finished class at EIU, our teacher didn’t tell us (stinkin Stat’s teacher) and I walked into my friends house and the video of the plane and burning buildings was looped on the TV. I remember thinking it was a movie they rented. I feel so awful for the families of loved ones who lost someone that day. I am sad that there is such evil in the hearts of people.
On a lighter note, we went to see Katie and her friends run the ½ in Chicago! I am so proud of you, Katie! Way to go, running for the Boyces team! We love you!
PS if you look at the picture of the church, I took it from the passanger side, out Jut's drivers window, on the highway, and didn't even see the bird mid air til I got home!
On a lighter note, we went to see Katie and her friends run the ½ in Chicago! I am so proud of you, Katie! Way to go, running for the Boyces team! We love you!
PS if you look at the picture of the church, I took it from the passanger side, out Jut's drivers window, on the highway, and didn't even see the bird mid air til I got home!
Stefanie is a writer and speaker, best known for her voice on her blog, Boyce Lane, which chronicles the beauty and pain of Sanfilippo Syndrome, a rare genetic disorder effecting her older two children. Learn more at www.StefanieBoyce.com
10.06.2011
The Build Has Begun
The Build Has Begun
Boyce Family Breaks Ground on Handicap-Accessible Home
October 6, 2011 --- In October of 2009, brother and sister, Jayden and Brooklyn Boyce were diagnosed with a rare genetic disorder called Sanfilippo Syndrome. Sanfilippo Syndrome is a genetic disease that makes the body unable to properly break down long chains of sugar molecules, resulting in developmental delays and deteriorating mental and physical status. There is no known cure for this disease and those affected typically only live into their teenage years.
Since their diagnosis, family, friends, and even strangers have given generously to help build a handicap-accessible home for Jayden and Brooklyn’s future needs. Their efforts are part of a campaign called, Build with the Boyces. Spearheaded by family and friends, the campaign has raised enough money to break ground on their new home, conveniently located next to family who can offer a much-needed extra hand.
The benefits of having a handicap-accessible home is that it will give Jayden and Brooklyn a safe place to live and play. It will also allow their devoted parents, Justin and Stefanie, to spend better quality time with their kids, without the stress of having to watch their every move in fear that they may get hurt.
“We feel so blessed and humbled at the generosity of friends, family and strangers who have come alongside us to make a dream for our children a reality,” said Stefanie Boyce. “What an amazing gift we have been given.”
It will take millions of dollars, years of research, and a miracle to find treatment or a cure in Jayden and Brooklyn’s lifetime. Until that happens, a safe home is the best gift they can receive.
If you would like to help the Boyce family raise the additional money needed to complete their home, please visit www.buildwiththeboyces.com. There, you can learn more about the family and their story, donate, and also keep up-to-date on the home construction with a time-lapse video.
For immediate release October 6, 2011
Boyce Family Breaks Ground on Handicap-Accessible Home
October 6, 2011 --- In October of 2009, brother and sister, Jayden and Brooklyn Boyce were diagnosed with a rare genetic disorder called Sanfilippo Syndrome. Sanfilippo Syndrome is a genetic disease that makes the body unable to properly break down long chains of sugar molecules, resulting in developmental delays and deteriorating mental and physical status. There is no known cure for this disease and those affected typically only live into their teenage years.
Since their diagnosis, family, friends, and even strangers have given generously to help build a handicap-accessible home for Jayden and Brooklyn’s future needs. Their efforts are part of a campaign called, Build with the Boyces. Spearheaded by family and friends, the campaign has raised enough money to break ground on their new home, conveniently located next to family who can offer a much-needed extra hand.
The benefits of having a handicap-accessible home is that it will give Jayden and Brooklyn a safe place to live and play. It will also allow their devoted parents, Justin and Stefanie, to spend better quality time with their kids, without the stress of having to watch their every move in fear that they may get hurt.
“We feel so blessed and humbled at the generosity of friends, family and strangers who have come alongside us to make a dream for our children a reality,” said Stefanie Boyce. “What an amazing gift we have been given.”
It will take millions of dollars, years of research, and a miracle to find treatment or a cure in Jayden and Brooklyn’s lifetime. Until that happens, a safe home is the best gift they can receive.
If you would like to help the Boyce family raise the additional money needed to complete their home, please visit www.buildwiththeboyces.com. There, you can learn more about the family and their story, donate, and also keep up-to-date on the home construction with a time-lapse video.
For immediate release October 6, 2011
Stefanie is a writer and speaker, best known for her voice on her blog, Boyce Lane, which chronicles the beauty and pain of Sanfilippo Syndrome, a rare genetic disorder effecting her older two children. Learn more at www.StefanieBoyce.com
10.01.2011
Build with the Boyces "open" house
Who: YOU!
What: An “open house” celebration and chili cook-off
Where: 10427 Boyce Lane Beach Park, IL 60087 (on Boyce Lane near Yorkhouse and North)
When: Saturday, October 22, 2011 between 11:00AM-2:00 PM
Tours of the home on the half hour. Stop by and leave whenever you want!
Why: Because of YOUR hard work, generous giving, passionate advocacy, and wonderful hearts, we are digging the foundation for our new, safe, home for Jayden and Brooklyn. We are thrilled! We feel so blessed and humbled as the generosity of friends, family, and strangers that have come alongside us to make a dream for our children a reality. What an amazing gift you have given us.
We hope to be in the framing stage and we would like to officially “bless” the house and celebrate! We will be giving guided tours on the half hour of the home. From 11-2, we will have an open house feel in the yard with corn hole, a bonfire, and a chili cook off! We will have jars for people to vote for their favorite chili using money-and the chili's jar with the most money will win a one night stay and dinner. If you are interested in entering the chili cook-off, sign up at www.buildwiththeboyces.come/building. The money raised will go back into the house. We are also going to have hot apple cider, and caramel apple dips with a topping bar!
We’ve come a long way, but still have a few more steps to go! Thanks for joining us every step of the way!
Beeba’s Bows and Our Sweet Bee necklaces will be available for purchase.
What: An “open house” celebration and chili cook-off
Where: 10427 Boyce Lane Beach Park, IL 60087 (on Boyce Lane near Yorkhouse and North)
When: Saturday, October 22, 2011 between 11:00AM-2:00 PM
Tours of the home on the half hour. Stop by and leave whenever you want!
Why: Because of YOUR hard work, generous giving, passionate advocacy, and wonderful hearts, we are digging the foundation for our new, safe, home for Jayden and Brooklyn. We are thrilled! We feel so blessed and humbled as the generosity of friends, family, and strangers that have come alongside us to make a dream for our children a reality. What an amazing gift you have given us.
We hope to be in the framing stage and we would like to officially “bless” the house and celebrate! We will be giving guided tours on the half hour of the home. From 11-2, we will have an open house feel in the yard with corn hole, a bonfire, and a chili cook off! We will have jars for people to vote for their favorite chili using money-and the chili's jar with the most money will win a one night stay and dinner. If you are interested in entering the chili cook-off, sign up at www.buildwiththeboyces.come/building. The money raised will go back into the house. We are also going to have hot apple cider, and caramel apple dips with a topping bar!
We’ve come a long way, but still have a few more steps to go! Thanks for joining us every step of the way!
Beeba’s Bows and Our Sweet Bee necklaces will be available for purchase.
Stefanie is a writer and speaker, best known for her voice on her blog, Boyce Lane, which chronicles the beauty and pain of Sanfilippo Syndrome, a rare genetic disorder effecting her older two children. Learn more at www.StefanieBoyce.com
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