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12.29.2010

Dec 18: Rockford Christmas

My mom's side of the family always do Christmas the weekend before Dec 24-25. It is fantastic because then we can always see them and never have to choose which house to go to. My grandma makes spaghetti, we open presents and play BINGO! That's right, BINGO!

An added bonus to Christmas this year was we got to celebrate Kelly Hubert's birthday! Her husband had a suprise party for her so we stopped by after Grandma's to play catch phrase and see my girl! She's the best! We also got to see Liv and Fin before bedtime which is a special treat!


Sunday, we went to Heartland church....my favorite place to be Sunday morning in Rockford and ate some yummy eggs from papa steve! Great time overall!

12.28.2010

Dec 4-16 in a nutshell....

Dec 4: Boys Weekend
Jut and a few guys took up the fourwheelers and did an overnight guys trip in WI. I was so glad he went. I missed having him around, but my parents came out to visit. It was fun and the kids love to see Nana and Pappa. The only problem was my mom brought the stomach flu. Late Saturday, she got sick. I woke up at 8 with it too and needless to say, needed help with the kids. My parents left and Ken and Joan were wonderful and took the kids until Jut got home. That's twice now....stomach flu, go away!

Dec 10: Cole and Monkey Joe's
Cousin Cole spent the night and we treated him to a stop at Target and Monkey Joes for his birthday! I love that kid. He is so good to Jayden and J looks up to Cole so much. He wants to be whereever Cole is. We enjoyed spending time with him. He wanted to watch the karate kid so we stayed up til 11 and watched it with him. (Don't tell Aunt Sarah). He was a great help with family photos the next day too! You are welcome anytime Colee-olie!

Dec 11: Henrys
We love the henrys. Being with them is like slipping into a favorite pair of sweats! Comfortable. They have 3 beautiful children and life in Elmhurst. We actually made the trip down to spend some quality time together. Usually, they are the ones that drive up here so we owed them big time. Katie made a great dinner and we really had a great time talking, laughing, watching the kiddos play, and talking real. I love Katie for many reasons but the thing I admire most is not her fantastic giftedness of being a mother/martha stewart/betty crocker, but her attitude. She loves deeply and always has a positive attitude. She could be standing on burning coals and she would, in all humblness, say, "this is not that bad...a little hot, but I am fine....how are you?" At first when I met her, I was jealous that she always was so put together. Over time, though, I have seen that she is extremely gracious and is trying to be kind and loving, putting her needs last. Christ is using her to teach me a lot, even from a distance. Love you K8!

Dec 16: Justin is Amazing
Jut is amazing everyday, but on this particular day, he shared his life story in front of 8 other people in a class we are facilitatiing at our church called Vantage Point 3. One of the things we do as a group is share our life story with one another. it is about 45 minutes long of reading. The purpose is to look back and see God's shaping hand in your life. It is a vunerable place to sit and exposes who you are. Jut did a great job and it was an honor to hear his story, to be a part of it, and to share in what is ahead. I am so thankful for Justin and it is very rare that I tell him.

more to come...Beeba is up from her nap!

Life giving water during the rain...


I was reading an article online about the water wells in India drying up. They were talking about the desperate need for water and a woman, who is paid in wheat and .40cents a day for digging a pond intended to catch rain water said this:

There were times, she acknowledged, when it became difficult to feed the children. Now she finds herself digging ponds for a bag of wheat. And praying for rain. “Our life is not life,” Meera said. “Only when it rains, there’s life.”

Profound.

12.27.2010

2011 Purple Christmas

So-I had an idea for Christmas 2011.
Our good friends, the Henrys, live in Elmhurst, IL. People there have a tradition to decorate a tree outside their home each Christmas. They go so far as to buy a Christmas tree and tie it to a stake if they don't have a tree.
I thought it would be a great way to raise awarness Christmas 2011 if a bunch of us did the same on our block with the National MPS awareness color-purple. I went to Target and was able to get purple ornaments 50% off and thought I would share the idea now so you could get decorations at a discount. I am thinking if you don't have a tree or don't want to get that big, you could do your christmas door wreath, or garland or something to add a little purple to your Christmas.
I would love to know as we get closer to Christmas how many people are willing to do this so we can get it promoted with like a tour of homes or pictures, or something.....


Will you join me?




12.21.2010

November 26-30 Arizona

Joan and I had two free tickets to nowhere and decided to go to Arizona. It was a last minute trip. Why Arizona? Why not?! Joan had never been and I loved it so we made the girls trip with Brooklyn. It was a blast. We rented a HHR and headed to Scottsdale. We shopped, sat in the hot tub (the only day it was above 60 degrees) and took a road trip to see the red rock!

Thank you, Ken, for letting me take your place, and Joan, for letting me go for the ride. Many memories made. I loved being with Brooklyn for that long and really enjoying her alone (I missed the boys) but to make memories with her....pricless.

The mood on the way home changed. As I was reflecting on the great trip, Sanfilippo creeped up. I was reminded of it because a boy that looked a bit like Jayden, was now in heaven. They had made a video to share and I watched it before we took off. Try as I may, Sanfilippo colors my life. But, it is all about perspective. It's kinda like the sun. When I look straight at it, it is too bright, too painful. I can't look long. If I was too close, or in it too long, it will burn me. Sanfilippo is like the sun. However, I love it's rays. I love the beauty of a sunset or sunrise, the warmth on my skin, the light in my windows, and the way it makes everything look more beautiful.
The plane ride also reminded me that my Savior, He can move mountains. From the ground, mountains seem impossible. From my ground perspective, all I see is the mountain. From the air, mountains seem so small. Like I could pinch my fingers and plop...just drop is a little to the left. I see the roads going around it, the ones going up and over. I see many different paths to get past it and I also see how small my mountians must seem from Gods perspective. He is mighty to Save....Save just may not look the way I want it to look.

Nov 22: EI/Christmas Spirit

Brooklyn had her early intervention evaluation and will begin to receive Speech services. We are so proud of her and all her successes. She is signing a lot and immitates words with approximations, however, for her age, she is showing a bit of delay. We wanted to get a jump on services so we are blessed to have Angela returning weekly to provide services in our home. Angela was Jayden's therapist as well and is fantastic.

I also spent that day decorating for Christmas. I love the reminder that Jesus was born, a baby, that His father gave to a sinful world, for me, for my family. I love the lights and how they warm my home and my heart. I love classical christmas music...O holy night is a tear jerker for me! Anyway, I love seeing the lights, smelling the pine candles, seeing gifts under the tree, and embracing the wonderful season that my dear savior was born! Happy Birthday, Jesus!

Nov 21: Gratitude at iMPACT

Nov 21 I had the opportunity to lead the evenings youth group message. As most of you know, I work part-time at Immanuel Church as the Student Ministries Coordinator. I love my job. In fact, there is not one thing, after 4 years working in youth ministry that I would change. THAT is hard to say about any job, but it is true about mine. My wonderful boss, Josh Petersen, has been amazing about letting me be a team player and letting me grow in my gifting. That being said, HE is the gifted speaker, not me. Now, I don't mind talking in front of people, I am even to the point I don't mind praying in a mic. (I have come al long way :) But, Josh has some pretty big shoes to fill.

That being said, I really was pressed. I had been thinking about what I could talk about and prayfully asking God to make it about Him and not me. I only had about 1 hour to actually sit down to "write" it and when the time came, I was paniced. All I had were a bunch of ideas.

Well, I gave the Lord my small window of time and my heart and he came up with a great idea. He led me to the book of Colossians. It is 4 chapters and each chapter addresses being thankful. Perfect for my "thanksgiving" message. And, instead of talking, I would invite students to participate in as many "stations" as they felt led. It was amazing to watch high schoolers participate in their faith and be moved by the Holy Spirit.

Below is an outline of the stations. I hope I can always focus on finding the blessings in the darkness and in the light.

Hx of Col.
Paul writing from prison in Rome
Why? To argue against errors in the church (Christ and…)
And show believers have everything they need in Christ alone.

STATION 1: THANK YOU CARDS
Col 1:3-5 Thankful for other believers (Christ in the flesh)
“ 3 We always pray for you, and we give thanks to God, the Father of our Lord Jesus Christ. 4 For we have heard of your faith in Christ Jesus and your love for all of God’s people, 5 which come from your confident hope of what God has reserved for you in heaven. You have had this expectation ever since you first heard the truth of the Good News.”

How?
Be thankful for their faith and changed life. (1:3)
Ask God to help them know what he wants them to do. (1:9)
Ask God to give them deep spiritual understanding. (1:9)
Ask God to help them live for him. (1:10)
Ask God to give them more knowledge of Himself. (1:10)
Ask God to give them strength for endurance. (1:11)
Ask God to fill them with joy, strength and thankfulness. (1:11)

STATION 2: ROCK ALTER
Col 2:6-7 Altar of Remembrance with your life
6 And now, just as you accepted Christ Jesus as your Lord, you must continue to follow him. 7 Let your roots grow down into him, and let your lives be built on him. Then your faith will grow strong in the truth you were taught, and you will overflow with thankfulness” NLT

6-7My counsel for you is simple and straightforward: Just go ahead with what you've been given. You received Christ Jesus, the Master; now live him. You're deeply rooted in him. You're well constructed upon him. You know your way around the faith. Now do what you've been taught. School's out; quit studying the subject and start living it! And let your living spill over into thanksgiving.” MESSAGE

How?
Commit you life and submit to Christ (Romans 12:1-2)
Seek to learn from Christ, His life and His teachings (Colossians 3:16)
Recognize the Holy Spirit’s power (Acts 1:8 and Galatians 5:22)

STATION 3: COMMUNION
Col 3:16, 17 Give thanks with your life
16 Let the message about Christ, in all its richness, fill your lives. Teach and counsel each other with all the wisdom he gives. Sing psalms and hymns and spiritual songs to God with thankful hearts. 17 And whatever you do or say, do it as a representative of the Lord Jesus, giving thanks through him to God the Father.” NLT


How?
1-2 So if you're serious about living this new resurrection life with Christ, act like it. Pursue the things over which Christ presides. Don't shuffle along, eyes to the ground, absorbed with the things right in front of you. Look up, and be alert to what is going on around Christ—that's where the action is. See things from his perspective.
3-4Your old life is dead. Your new life, which is your real life—even though invisible to spectators—is with Christ in God. He is your life. When Christ (your real life, remember) shows up again on this earth, you'll show up, too—the real you, the glorious you. Meanwhile, be content with obscurity, like Christ.
5-8And that means killing off everything connected with that way of death: sexual promiscuity, impurity, lust, doing whatever you feel like whenever you feel like it, and grabbing whatever attracts your fancy. That's a life shaped by things and feelings instead of by God. It's because of this kind of thing that God is about to explode in anger. It wasn't long ago that you were doing all that stuff and not knowing any better. But you know better now, so make sure it's all gone for good: bad temper, irritability, meanness, profanity, dirty talk.
9-11Don't lie to one another. You're done with that old life. It's like a filthy set of ill-fitting clothes you've stripped off and put in the fire. Now you're dressed in a new wardrobe. Every item of your new way of life is custom-made by the Creator, with his label on it. All the old fashions are now obsolete. Words like Jewish and non-Jewish, religious and irreligious, insider and outsider, uncivilized and uncouth, slave and free, mean nothing. From now on everyone is defined by Christ, everyone is included in Christ.
12-14So, chosen by God for this new life of love, dress in the wardrobe God picked out for you: compassion, kindness, humility, quiet strength, discipline. Be even-tempered, content with second place, quick to forgive an offense. Forgive as quickly and completely as the Master forgave you. And regardless of what else you put on, wear love. It's your basic, all-purpose garment. Never be without it.
15-17Let the peace of Christ keep you in tune with each other, in step with each other. None of this going off and doing your own thing. And cultivate thankfulness. Let the Word of Christ—the Message—have the run of the house. Give it plenty of room in your lives. Instruct and direct one another using good common sense. And sing, sing your hearts out to God! Let every detail in your lives—words, actions, whatever—be done in the name of the Master, Jesus, thanking God the Father every step of the way.

STATION 4: PRAYER ROOM
Col 4:2 Pray-Thank Him.
2 Devote yourselves to prayer with an alert mind and a thankful heart.

How?
Have you ever grown tired of praying for something or someone? Paul says we should “devote” ourselves to prayer and be “alert” in prayer. Our persistence is an expression if our faith that God answers our prayers. Faith shouldn’t die if the answers come slowly, for the delay may be God’s way of working his will in our life. When you feel tired of praying, know that God is present, always listening, always answering-maybe not in ways you had hoped, but in ways he knows are best….even if it doesn’t “feel” best.

Nov 19: 30 and the bucket list

30.

On November 19, 2010, I turned 30. To be honest, after such a "big" year, 30 doesn't seem too bad. I have realized, for the first real time, I am not invincible. I guess that comes with getting older. I mean, I could very well, die.
Crazy thought I know.....amazing it took me this long to think of it.

Anyway, it made me think about what I want be true about me the next 10 years, God willing He keeps me here. I also thought, I want to tell some of my good friends that are also turning 30...hoping they too, would be challenged to think about the next 10 years being the best 10 years yet.

Here is my bucket list:

-commit to being mentored in my 30s
-be obedient to the Holy Spirit’s prompts
-love family and friends well (pay attention)
-be expectant for God to do something amazing
-not be scared to try new things and look dumb
-thrive and be stretched
Here is what we all committed to doing:
-get a tattoo
-get our grandma's to say “boner”
-call Bill Devore “cuch” at least once (checked this one off my list :)
-take a trip
-do something annually as a group
-go on a mission trip
-as best as possible, become the woman God made me
-stay married (or get married)…love our husbands well
-go on the giant swing at Lake Geneva Camps and Conferences
-sing a song at a karaoke bar

I am blown away by my friends response. Not only were they willing to share, they were excited. The night was blessed by God. Something I anticipated lasting 30 minutes took 3.5 hours. I welcomed my 30's in with a bang. We enjoyed each other's company and the Lord wove our stories and struggles together. We were open, vulnerable, and honest. We were not trying to compare or "one up" each other. We cried, we laughed, we shared, we danced. I know it was significant for everyone. I loved how my friends, some who never met, embraced one another. Especially, my dear friend Kelly from Roscoe. I know she knows how loved she is from my friends! That makes me feel like a proud mama!

Thank you to my bucket list girls! Here's to our 30's...may we live it to the fullest!
Life is not about waiting for the storm to pass,
It is about learning to dance in the rain!




Nov 13: Coffeehouse Benefit

Again-better late than never!

Our wonderful family, once again, came through huge for buildwiththeboyces. (side note, emotionally it's easier for me to disconnect and focus on buildwiththeboyces as an organization I am a part of, instead of being "the family". Therefore, I am writing in 3rd person to save my emotions just a bit).

Justin's Uncle Keith, his wife, Laurie, and beautifully talented children, Desiree, Tommy, and Julia....and their church body at Edgebrook Covenant Church. Many people brought baked goods and others shared their musical talents. We were able to share about Sanfilippo and show the video I put together of the kids. We were so overwhelmed that most of the people in attendance were strangers. Of course our abnormally large, close, family made the hour drive to be there, and I can't thank them enough for that. I get so flustered when the body of Christ shows up because thank you is just not enough. But, I am not going to let my pride, or Satan, steal the fact that we were blessed and if I am inadequate in saying thank you, oh well. I just love all of you so much and every little thing you do, is felt in immeasurable ways. Thank you for listening to God prompt you and for being obedient. May you be blessed.

Here is an e-mail from Keith:
Hi, Thank you all for attending the coffee house. We are thanking God for a wonderful time together. We had over 110 people and collectively we raised over $1555 for "Build With The Boyce's" and more came in through the church today! Many thanks to everyone who came, who gave, who sang and volunteered. Attached are some photos, sorry they are mostly of our kids. Building God's Kingdom Together Keith

http://www.evite.com/app/photo/viewPhotos.do?albumId=ETXRPJELCMKDLPPMFFZY&eventId=XVWGXCRDEDOZSMAIYYEO&currentIdx=0

12.17.2010

a tree, a star, and a little boy


Joan, Jut's mom, wrote this about Jayden:
follow her story at http://www.thenorwaybelle.blogspot.com/

Jayden was curiously looking at our Christmas tree the other day. I had just finished decorating the tree and it was the first time he had seen it. Our tree stands about 7ft tall and was beautifully lit with at least 1000 white lights. I had put a simple star at the top. That morning I noticed Jayden staring at the tree. He slowly raised his arms with wonder and awe as if he wanted to hug the tree or maybe he was wanting to reach the star. I'm not real sure. He had such a sweet, whimsical and somewhat worshipful look on his face, as he lifted his arms. In that moment I was touched by his tender embrace and the sweet smile and look of astonishment and wonder on his face, as only a little child could have. The wonder and joy of a little child. I know he doesn't understand that the star at the top of the tree reminds me of the star that shone so bright over Bethlehem the night that Jesus was born. I know Jayden didn't understand the worshipful attitude he showed me that morning. But Jayden reminded me in that moment of what was most important. I sensed in my heart a deep desire to worship the babe that was wrapped in swaddling clothes and lying in a manger. The babe who came wrapped in mercy and grace. That simple star at the top of my tree was pointing and reminding me of the most important gift....the gift of a saviour, the gift of His presence. So I have to thank a little 4 year old boy for reminding me and pointing me to that baby, the gift of God. A moment I won't soon forget. A moment that caused me to worship Jesus in a new way. The wonder of a child. I'm glad that I didn't miss the gift of a little 4 year old boy, in a tender, childlike way pointing me to the most important gift of all. Thank you Jesus for a beautiful reminder of your love, your sacrifice, your grace, your gift for me, for us, for all mankind.

Luke 2: 6-12While they were there, the time came for the baby to be born, and she gave birth to her firstborn, a son. She wrapped him in cloths and placed him in a manger, because there was no guest room available for them.And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, “Do not be afraid. I bring you good news that will cause great joy for all the people. Today in the town of David a Savior has been born to you; he is the Messiah, the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.”

Jay Jenison is my hero!

Justin and I have a great friend, Jay Jenison. He and his wife, Michelle, are becoming two of our most favorite people! They have a son, Bonn, who I affectionately call my boyfriend (I think he is about 6 months old!). They serve on the youth ministry team with us and have really been a blessing to us. Jut is even going to India with him. We are still kinda "newer" friends, but I look forward to growing our friendship.

Jay is a very talented graphic design artist and photographer. He is working hard on our new logo, that we will be unvailing January 2011, and came by last week to take our family winter photos. Here is the link for our family photos:

PLEASE help us pay him back! If you have any graphic design needs or photo needs,
he is your man!


Thank you to Michelle, for the hours of patience while Jay does work for us, and, Jay, thank you so much for blessing us with your talents. To us, these are priceless!
And Bonn-I am gonna kiss you all over when I see you!

Brooklyn's a model!


So I opened the package that came in the mail thinking it was a christmas gift that I ordered. I was shocked when I found 3 COURAGE magazines with Brooklyn's picture on the cover! There is also a picture of her inside from a wonderful gathering we attended in Bloomington.
To be honest, it is with mixed emotions I see it. I am so proud of her like any mom would be if their daughter graced the cover of any Parenting, Family Fun, or Gap ad. However, it is a magazine for the National MPS society. As if we didn't need another "reminder" she has now reached international publication as a Sanfilippo "poster" child.
I really think that the blessing and feelings of being proud outweigh the yucky feeling. I don't mind our family coming into the "spotlight" if it brings God the glory, we can tell our story, and our family can be a blessing to others.
It brings me back to the start of this all. I never wanted to wear the purple shirt, stand on stage, and share our story. I didn't want it to be our story. I wanted to sit in the back, listen to someone else's story, decide to give a bit, shed a tear, and look away. I wanted to feel bad for someone else and go back to my healthy kids. Awful, I know, but true. I am ashamed now to even to have those thoughts. As I learn to embrace the path that God gave me and my family, I begin to see that God has chosen us for great things, for His story to be told. God is still good, heaven is real, and suffering can truly be a pathway to peace. I am learning that "safe" and "easy" and "comfortable" are words that I don't want to represent me anymore.

So-all that to say, way to go, Beeba, momma is so proud of you...shine, baby, shine!

12.03.2010

Nov 12: House for sale!


We are selling our home in Beach Park, IL. We want to get out before we NEED to get out! Any takers!?
Jayden needs to get out of Waukegan school district and we want to save money and get him into Beach Park as soon as possible so we can begin to build our safe, handicap accessible one story home near family as soon as possible so the kids can enjoy it as long as possible!




































Nov 11: Children's Appointment

Went to Children's to meet with Dr. Burton et. al.:

Notes:
*Jayden had MRV scan and is now too strong and tramutised to do it without sediation. Future scans for shunt may have to be under sediation

*Jaydn and Brooklyn are still presenting high GAGs in their urine. We are still unsure how we got an undectable urine GAG result months ago for Jayden

*it is REALLY hard to collect urine samples...but both kids did really well all day in the city.

*we are officially participating in a new study on Genistein conducted by Dr. Burton at Children's. We are very excited for this and the potential outcomes of being a part of such a study! We also have worked out a better solution for genistein availability by being participants in the study which is an answered prayer. They are looking for funding to help with the study if people would like to donate directly to research that Jayden and Brooklyn are a part.

* we are working on getting Jayden a sleep safe bed. Saw another family with one and thought it may help get Jayden back in his room and off our floor so we all can sleep better!

*medically, the kids look good and will remain on current genistein dose 3xday at 150 mg/kg. We have noticed that Jayden and Brooklyn seem to be "calmer" still active by normal standards and Jayden is doing much better than this summer. Part of that may also be attributed to the brain trauma he had this past summer as well. It significantly effected all the academic and motor skills he had and is now regained them back.

*children will be seen every 3 months to monitor.

*We are beginning to look at adaptive equipment that will make our daily lives more managable. Car seat, larger stroller, bed, etc.

*we really enjoy working with Katherine Kim and Dr. Burton

*pending: DSCC confirmation. Be praying that we don't have too much headache from dealing wtih insurance and assistance as we pursue adaptive equipment and medical supplies.

*resolved: genistein!

Nov 9: GMAP radio


Justin's Aunt Carolyn got me a "spot" on GMAP radio to promo our coffeehouse event and talk about Sanfilippo. It is a gospel internet radio station out of Winthrop Harbor. While we were on air, 400+ people were signed on who learned about Sanfilippo and our story. Praise God! Unfortunately, it was only live, but Sahron said she would love to have me back! Thank you Sharon and GMAP! Much love!


Nov 6: Lainio Wedding

Justin's great friend from growing up, Al Lainio, tied the knot to Caroline....who I simply adore. I think he is overacheiving. (JK, Al) Justin was in the wedding with our friend, Johnny. The wedding was simply perfect. Caroline thought of EVERYTHING from toiletries in the bathrooms to pizza at 11PM for dancing guests. In lieu of favors, they made a monetary donation to Build with the Boyces and included this note on every 200+ menu at the wedding. Priceless. Thank you.