Thank you to my mom, Steve, Aunt Nancy and Uncle George….and ALL of their amazing friends for weeks and weeks of packing, moving, sorting, resorting, folding, organizing, lifting, and everything else that goes into a garage sale! For a one day sale, $3,000 isn’t too shabby! We also made the news! The video is down but here is the link and brief article:
http://mystateline.com/search-fulltext?nxd_id=264877
Rockford native Stefanie Boyce's family and friends held a rummage sale to help cover costs.
Each donation pushes them closer to building a handicap accessible home for her two children.
The kids have Sanfilippo Syndrome, an enzyme deficiency disease with no cure.
The home will make it easier for the kids to get around the house and function comfortably.
The family needs to raise 250-thousand dollars, so far they have raised 80-thousand with the help of friends, family and the community.
What an amazing gift! Thank you from the bottom of my heart!
Also-thank you Heidi Habel and Angie Devore for making the road trip in the big Ford with me! Queen will never be the same without you two! Huberts: thank you for your help and for the frozen treat time after!
MUCH LOVE!
8.30.2011
July 16: Rockford Garage sale
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
July 12, 2011: Power outage/Voting
The power outage for a week was awesome! Well, awesome that we had a generator to plug in the tv! A power outage can’t even stop bob the builder! We also ran our fridge and fans, which helped a lot! We adjusted to showering by the lantern, and periodically flushing the toilet. If I hit the light switch one more time, though, I may just go nuts!
Sure makes you appreciate the little things, right? Why does it take things to be taken away to make us appreciative for what we have? Human nature is so sad.
For the record, we were out of power until Jul 16 at 3pm.
Anyway, thank you for all your vivint votes! We are holding steady in first place for $100,000 in our region! YAY! One step closer….
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
8.10.2011
July 11, 2011: Hearing aids
Christina signed up for her second trip to a dr. visit, only this time it was at Glenbrook for hearing aids. Both kiddos needed molds for their ears so they can get hearing aids. Christina helped me pick out “cool” colors for their hearing aids: Both are getting clear molds (the thing in their ears) and the backs are pink for Brooklyn and Beige for Jayden. Funny-I am excited a bit to get them. Not about the fact they will chew them and loose them, but that they can hear better!
It has been a journey for sure getting to this point. As most adults think a “label” for their child is the kiss of death, even the little labels they hand out these days…..we are finally embracing those labels as the exact thing that will help. I know parents that don’t want their kids to wear an allergy sticker, biting necklace, glasses, or hearing aids because they don’t want their child to be “different”. But, what is so wrong with different?! If you think a minor ADHD label is embarrassing, how about special order- handicapped diapers for your five year old, or a “book” of labels & special needs, larger strollers, and now hearing aids, or worst, “terminal”? It’s all about perspective.
Want honest? I am glad we have hearing aids them so when people stare, they know we are different and proud to be. Maybe they won’t give us a hard time cause we’ve squeezed our child into a toddler seat when they see them. I am also excited that they will be able to hear. They hear like they are underwater, dropping the beginning and ending of sounds of words….”car” sounds like “a”. That is one reason they can’t speak as well because you can’t make sounds you can’t hear. I care so much less about labels, and what people’s perceptions are, and care more about doing whatever helps my child. And, I am sad I ever thought any different.
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
July 7-9, 2011: One on One Basketball
Justin and I have been a part of one on one basketball, a 3 day camp for 12-14 year old boys, since it’s first year. As our life has changed over the years, we have less responsibility, but still love being a part. Justin was the guest speaker for 3 of the morning sessions and was AWESOME! He worked so hard on his messages and planted a whole lot of seeds in these boys hearts. He shared about growing up, India, and our kids. I would even say he is a better speaker than me-even though I have done it a few more times! Jut-I am so proud of you! One-on-one was the dream child of Denis LaBelle and with the help of many others, his dream came to life. What I love most about Denis is his passion for the camp and how desperately he wants these kids to hear the gospel through their love of basketball. If you know a boy that loves basketball, 12-14 years old, this is a camp you don’t want to have them miss. It is in Zion the Thursday-Saturday, the weekend after the fourth. It’s only $60 and the food is AMAZING!
One-on-one volunteers, keep up the great work-big or small we are happy to be a part!
(I have great photos of Jayden at the camp, just have to get them from Dennis DuBois)
http://1on1bball.com/home
One-on-one volunteers, keep up the great work-big or small we are happy to be a part!
(I have great photos of Jayden at the camp, just have to get them from Dennis DuBois)
http://1on1bball.com/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
July 6, 2011: Dolores DuBois
Today was another day of mixed emotions. I attended a funeral of a wonderful woman Dolores DuBois, a family friend and best friend to both of Jut’s sets of grandparents. She was a stylish woman who loved to laugh, with a family and husband that loved her dearly. I gather from her family sharing she was feisty (which I admire) and full of life. The last few years, Dolores started fading way as alzheimers began robbing her memory. It always touches me in a deeper spot when I hear alzheimers, because many people say Sanfilippo is like ADHD and Alzheimers combined. I understand from our brief experience with “the light not always being on” with Jayden, and a few people who have cared for loved ones, it is a difficult journey and personally hurtful when loved ones fade away….
Chet, a man Justin and I deeply admire, never left her side and loved her and took care of her like no one I have ever seen. One of my favorite things in her slide show was the pictures of them together. From the time they dated, until their last pictures together, there was this look…like newlyweds, they had in their eyes when they looked at one another. It moved me to tears.
The other thing that grabbed me was a scripture reference Dolores herself had underlined in her Bible. I know I have read it before, but it never hit me like it did and I underlined in in mine. Can I share?
1 Thessalonians 4:13-18 New Living Translation (NLT)
The Hope of the Resurrection
13 And now, dear brothers and sisters, we want you to know what will happen to the believers who have died[a] so you will not grieve like people who have no hope. 14 For since we believe that Jesus died and was raised to life again, we also believe that when Jesus returns, God will bring back with him the believers who have died.
15 We tell you this directly from the Lord: We who are still living when the Lord returns will not meet him ahead of those who have died.[b] 16 For the Lord himself will come down from heaven with a commanding shout, with the voice of the archangel, and with the trumpet call of God. First, the Christians who have died[c] will rise from their graves. 17 Then, together with them, we who are still alive and remain on the earth will be caught up in the clouds to meet the Lord in the air. Then we will be with the Lord forever. 18 So encourage each other with these words.
I am reminded this is where my hope is, not in a cure, or a long life, or any other earthly desires, but in Christ alone, and eternity with Him. Lord-help me to always remember this.
DuBois, Dolores M. Age 76, went to be with the Lord on June 30, 2011. Dolores was born to Floyd and Hester Scogin on April 18, 1934 in Detroit AL. She lived in Zion most of her life, graduated from Zion Benton High School in 1952 and married Chester DuBois on July 30, 1955. Dolores worked as a Paralegal for attorneys Inglis, Will & LaBelle for about 15 years and 10 years as a secretary for Laserage Technology. Dolores was a member of Beach Bible Church of Zion for many years. She loved traveling, camping and sewing. She was preceded in death by her parents Floyd and Hester Scogin of Zion and a brother Dow Scogin of Hamilton AL. She is survived by her husband Chet, two sons, Denis (Debbie) of Winthrop Harbor IL and Dean (Theresa) of Pleasant Prairie WI, five grandsons Dustin, Michael, Trevor, Nathan, and Nicholas. Visitation will be held Tuesday, July 5, 2011 from 5:00 until 8:00 PM at Beach Bible Church, 3520 21st Zion, IL. A Funeral Service will be held on Wednesday July 6, 2011 at 10:00 a.m. at Beach Bible Church. Interment will follow at Mt. Olivet Memorial Park, Zion, IL. Memorial donations are suggested to Beach Bible Church. Please sign the online guest book at www.congdonfuneralhome.com.
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
8.02.2011
July 4, 2011: Fourth of July weekend
As I mentioned earlier, I had to make the most of the Fourth because it was our first one with Brooklyn! So…here was our agenda:
Tie-dye shirts-Mundelein
Joan and I drove the kids to Mundelein Library to tie-dye red, white and blue t-shirts. It was an hour drive for 5 minutes, but a fun memory!
Navy Base-Stef’s parents in town
My parents came into town to celebrate so we went to the Navy Base for their festival. The carnie at the airplane ride was so great! He let Jayden ride until he started to try to get out! We also walked around and Steve bought us dinner. Yum! I love festival food!
Kenosha Parade
We met up with Justin's Cousin, Sarah, and her family...too bad Jayden didn't enjoy himself...good thing it was short!
Run for freedom
Many of our runner friends got together to complete a first/practice 5k to gear up for October’s big race! Justin ran with Brooklyn in the stroller and was the first with a stroller to finish! Way to go, runners!
Suresh BBQ and fireworks
Suresh, president/co-founder of Harvest India (where Jut went on a mission trip) was visiting for a week and we invited him and the India team to our home to celebrate his arrival and the fourth of July. He was very kind and wonderful to be around. He is definitely a humble man after God’s own heart and loves his people and country. So, it had to be interesting for him to join us while we celebrated our country and its people. What a great time! Then, we met up with Justin’s family in Zion for fireworks. I love the 4th! See what Suresh and his team are up to: http://www.harvestindia.org/ see one way you can help: www.walletsforwater.com
Tie-dye shirts-Mundelein
Joan and I drove the kids to Mundelein Library to tie-dye red, white and blue t-shirts. It was an hour drive for 5 minutes, but a fun memory!
Navy Base-Stef’s parents in town
My parents came into town to celebrate so we went to the Navy Base for their festival. The carnie at the airplane ride was so great! He let Jayden ride until he started to try to get out! We also walked around and Steve bought us dinner. Yum! I love festival food!
Kenosha Parade
We met up with Justin's Cousin, Sarah, and her family...too bad Jayden didn't enjoy himself...good thing it was short!
Run for freedom
Many of our runner friends got together to complete a first/practice 5k to gear up for October’s big race! Justin ran with Brooklyn in the stroller and was the first with a stroller to finish! Way to go, runners!
Suresh BBQ and fireworks
Suresh, president/co-founder of Harvest India (where Jut went on a mission trip) was visiting for a week and we invited him and the India team to our home to celebrate his arrival and the fourth of July. He was very kind and wonderful to be around. He is definitely a humble man after God’s own heart and loves his people and country. So, it had to be interesting for him to join us while we celebrated our country and its people. What a great time! Then, we met up with Justin’s family in Zion for fireworks. I love the 4th! See what Suresh and his team are up to: http://www.harvestindia.org/ see one way you can help: www.walletsforwater.com
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
8.01.2011
July 3, 2011: Children's Memorial
This time last year, we were “celebrating” the 4th of July from Children’s Memorial, 3rd floor. Jayden had a cyst that ruptured and he was bleeding in his brain so they had to place a tube in the top of his head in a small hole they drilled in his skull for a few days. We almost lost Jayden during this 2 week ordeal. ( To read more, you can look up our blog during that time) So, as we were getting ready to welcome the 4th this year, which is one of my favorite holidays, I was thankful and reflective that we were not in the hospital this year. Once you experience an extended stay at a Children’s hospital, you can’t help but think about the families that are there when you are not. I was thinking, I wish there was a way that I could reach out to a family that is there….but they don’t just let you in. You need to know a name of someone specific, to protect the families there. I was telling Jut how much I wanted to reach out, but couldn’t think of a way to do it. Then, God, in His sovereign ways, logged me onto Facebook at the exact time that the Garcia’s were posting online.
Emily Garcia is a beautiful young lady in our youth group and I just adore her and her family. I knew Emily was having surgery for scoliosis but I thought she was at a different hospital. Still, I had forgotten she was happening this week. He mom posted that she is doing well, she would be up for visitors, and she was at Children’s Memorial, on the same exact floor, a room away from where we were exactly one year ago! I knew I just had to go. I made big Fourth of July baskets for her and her roommate who was a little 5 year old girl who was having a rough stay. I was so excited to go do this… don’t you feel so good when you know you listened to God prompting you to do something and you listen!? I was thrilled to go see her so I grabbed Jayden, and we headed down. I walked by the nurses’ station and saw many familiar faces, and they recognized Jayden. I just had to thank them for being there…and explained why we were back. They had warm greetings for Jayden and said, “Someone’s got to be here!” And it made me even more grateful for people who choose to enter into difficult professions or situations to help others. They are missing time with their loved ones to help someone else and that is so beautiful. I spent a few minutes with Emily and her dad. They are such a blessing and so positive. I left the gift on the little girl’s bed and Emily told me she was really happy when she returned to see it. I left on a high that day, knowing I got it right in that moment. I was thriving and feeling blessed. It leaves me wanting that feeling more.
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
June 30, 2011: Grayslake farmers market
During the summer, I think I have short term memory loss. Outings are challenging in general with little kids (so I have been told) but you add in Sanfilippo, and that is like hard+crack! But every day, I seem to have forgotten how awful yesterday was, and try another outing. Don’t get me wrong, some outings are better than others. The ingredients for a successful one vary, because my children are so unpredictable. However, here are a few.
1. Other hands. This is a pre-requisite for leaving the house (and sometimes for staying!) I can’t do or go alone with my children. Simple as that.
2. Good weather. Can’t be too hot or too cold. Now, my kids don’t mind as much as I do, but rain or snow test my patience. Which leads me to…
3. Patience. A lot of it. I have to be in a patient mood to have a successful trip.
4. Good attitude on everyone. I know by now that someone is going to have a meltdown…it just shouldn’t be me.
5. Diapers, wipes, “binka” and a change of clothes for each child. It is the one time, the one thing, I forget that tends to be the one thing I need.
6. No expectations. So I spend $40 on Lambs farm for Jayden’s birthday, and both kids cry the entire time. Oh well, lunch was great!
7. Bob. And Handy Manny and Blue and anything else that will keep them occupied while we travel.
8. An act of God. There is no what to predict if it is going to be successful, so we pray it will be. If it is a park, or pool we have a better chance, but if it is shopping, or somewhere they can break something, we need to pray harder.
9. Coffee. Hot or cold, we can’t survive an outing without a little caffeine.
10. Food and drinks. Fruit snacks, Wendy’s nuggets, juice cups, or icee breaks, food is the best way to get an extra 10 minutes of “fun”!
All that to say, we try to get out and today we went to the Grayslake farmers market because we heard Blue (from blue’s clues) would be there. Now, I may have to mention, my kids are deathly afraid of characters, but there was food, an area to play, good weather, other hands, and I was patient, so I thought we could try it. And I am happy to say it went well and we even got and icee!
http://www.grayslakefarmersmarket.com/
1. Other hands. This is a pre-requisite for leaving the house (and sometimes for staying!) I can’t do or go alone with my children. Simple as that.
2. Good weather. Can’t be too hot or too cold. Now, my kids don’t mind as much as I do, but rain or snow test my patience. Which leads me to…
3. Patience. A lot of it. I have to be in a patient mood to have a successful trip.
4. Good attitude on everyone. I know by now that someone is going to have a meltdown…it just shouldn’t be me.
5. Diapers, wipes, “binka” and a change of clothes for each child. It is the one time, the one thing, I forget that tends to be the one thing I need.
6. No expectations. So I spend $40 on Lambs farm for Jayden’s birthday, and both kids cry the entire time. Oh well, lunch was great!
7. Bob. And Handy Manny and Blue and anything else that will keep them occupied while we travel.
8. An act of God. There is no what to predict if it is going to be successful, so we pray it will be. If it is a park, or pool we have a better chance, but if it is shopping, or somewhere they can break something, we need to pray harder.
9. Coffee. Hot or cold, we can’t survive an outing without a little caffeine.
10. Food and drinks. Fruit snacks, Wendy’s nuggets, juice cups, or icee breaks, food is the best way to get an extra 10 minutes of “fun”!
All that to say, we try to get out and today we went to the Grayslake farmers market because we heard Blue (from blue’s clues) would be there. Now, I may have to mention, my kids are deathly afraid of characters, but there was food, an area to play, good weather, other hands, and I was patient, so I thought we could try it. And I am happy to say it went well and we even got and icee!
http://www.grayslakefarmersmarket.com/
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
June 20, 2011: Jayden’s first day of summer school
Jayden started summer school today. Last year, he only had a few days at school before landing himself in a hospital for 2 weeks. We are thankful that he is back in summer school with hopes it will last more than 2 days. He gets the bus at 7:01AM and gets home at 12:43. He is at Clearview school, a new school, with Mrs. Williams, who is actually his Kindergarten teacher in the fall! He will be going to Whittier in the fall, not Clearview, but the same teacher and some of the same students will be in his class so we are so excited that he will be able to maintain those relationships and have less transitions. Good thing he is an early riser! Now, if only I was!
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
June 18, 2011: Missouri and Boarding for the Boyces
As if we were not blessed enough by our Lake County and Rockford families, we have a Missouri family that we adore! This weekend Jodelle paddle surfed 11 miles for Jayden and Brooklyn to raise awareness and funds for us. Last year, she did a solo trip but this year, she was joined by friends who either paddle boarded or kayaked. Brooklyn and I flew down to support their efforts and celebrate Jodelle’s birthday. It was so much fun and they all were so awesome! Thank you, Missouri family, for all your support, prayers, and for embracing us like we are your own! We love you!
www.boardinfortheboyces.com
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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