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Mixed Emotions...

I write this with mixed emotions...

On one hand, I am in "paradise". We just had our first full day in St. Thomas, on vacation with my parents yesterday. Jayden got a B+ and Brooklyn got an A- traveling. We left via limo at 3:30 AM and flew to Miami and then to St. Thomas, arriving around 3PM. The house is beautiful. The view is breath taking and the pool is perfect for the kids. We went to the beach yesterday and swam in the ocean. Brooklyn LOVES the sand just like Jayden. Today we are going to Coral World and Coki Beach. I am excited and couldn't ask for a better vacation with my family.

On the other hand, I am deeply sad. I lost a very dear friend to eternity yesterday. Bonnie went to be with the Lord. I can't get her and her family out of my mind. I have a heavy heart and I know Jut does too. I wish I was there to hug Melissa, Steve, and Erik. I wish I was there to support them on Friday and Saturday. I hurt with them.... from a distance.

Bonnie was such a role model for me and I adored our friendship. I worked with Bonnie in youth group for 5+ years and on staff for 3 years. I realized that I have spent more time working and serving with Bonnie than I have spent with my own parents. Bonnie and I were usually roommates on retreats. I will never forget to retreat that we stayed up until about 2 AM. I listened for hours as Bonnie shared her life story with me. I truly feel I was on sacred ground as she shared deeply private things in the dark room lying next to me in the other bed.

I loved Bonnie's servant heart. A part of Jesus could be seen through her gift of serving. She never wanted to be the center of attention-even though she deserved to be. She was the person who was naturally gifted to work behind the a well oiled machine....she made others look good. She made Immanuel look good. She made youth group appear organized and put together. I KNOW there are many youth group students (she served over 20 years) hurting too.

A student Jut lead to Christ just this year called him yesterday. He can't get Bonnie out of his head. He can't understand why God took Bonnie....and I can't either. We are comforted that Bonnie loved the Lord and is with him-migraine free. But we can still be sad and miss her.

Bonnie was such a giver and gave freely of her money, her comforts, and her time. She selflessly lead by example. Every Wednesday when I would come into work, she would be sitting there behind her desk, with a smile waiting for me. She would comment on the latest blog I wrote, and ask me how the kids were doing or share in the latest pain or joy I was feeling that week. We would chat about youth group and life and I would go to my office.

Bonnie-I am gonna miss that. I am gonna miss you. Thank you for letting the light of Christ shine through you---enough to shine right on me. I pray I can learn from your example and be able to do the same.

Oh, my dear Melissa (Bonnie's daughter). I met Me-Me ( as Jayden calls her) her junior year of high school. We met on a youth group scavenger hunt at the mall. She was in my small group for 2 years and she easily became one of my favorites (I may even say my favorite-oops, we are not supposed to have favorites....). We remained very close as she went to college and I would now consider her a very close friend. I told Bonnie on Wednesday, when we thought we would never see her again-I would take care of Melissa. I love her so much and want to be there for her whenever she needs me to. I hurt so much for her. My hearts breaks. I feel that part of my deep suffering for my own children has allowed me to enter in to Melissa's suffering and share it with her. I can't take it away but misery loves we can journey through suffering together. Melissa is such a strong young woman of faith and is following in her mother's footprints. She also has a huge heart for people and is a servant. She would do anything for anyone. I almost began to cry when I saw her open her computer at the hospital and her desktop background was a picture of Jayden and Brooklyn. I did cry when I read her caring bridge entry when Bonnie passed.

Here is my promise, Melissa, whatever---whenever, it has always been that way but I want you to never forget. If you need me, I am there. One thing we are learning is that we may not see Jayden play volleyball for Zion-or Brooklyn get married....but we can see Erik and Melissa do it. We can be present for other kids just like we would for our own. The memories and experiences we are grieving for our own children-we can experience through the students we serve. Melissa-I want to share in your joys and pains, your heart-breaks, your laughter, your successes and failures. I am honored to be a part of your life.

Erik and Steve, Immanuel friends and family. Thank you for allowing Christ to shine through you in all of this. Erik and Steve-we will be there in whatever you need. We love you guys. Immanuel-thank for "showing up". You continue to show up as the body of Christ.....

So-it is with mixed emotions I write this. Full of joy-full of pain. Thank you Jesus-for Bonnie, her faith, her family, her example.

Love you Ness family!


Bonnie Updates

for updates on Bonnie's condition

BONNIE...Please pray

Please pray for the Ness Family.

Last night, Bonnie Ness had a brain anurism in the lower back of her brain. For a few days, she has been complaining of a migraine. Wednesday-Bonnie worked all day, went to Erik's volleyball game, and came home. While reading, she got a terrible migraine and went to get Steve and Erik who were downstairs. Steve helped her upstairs and she began to grab her head in pain and loss consiousness. Steve called 911 and she was rushed to Victory. Around 11:30 PM they airlifted her to Northwestern Hospital in the city.

The Dr. said only 50% of people survive flight for life so that is a good sign. She is still unconsious as of 5:15AM and they are preforming surgery to clamp the anurism as early as 7:30 this morning.

There are about 20+ people with the Ness family. Melissa had a roommate drive her so she is there with the family. Bonnie is in room 932. To get to Northwestern, take 94 to Ohio (50B) to Michigan Ave. (Head North) to Superior.

We are currently taking up a love offering to assist with the immediate need of a hotel for the family. The Wyndam is next door to the hospital. It is $149.00 a night and currently they have 3 nights paid. Please consider helping if you can. You can contact Micah Montondo if you want to help.

Please pray. Pray for Steve, Erik and Melissa. Pray for Bonnie. She is fighting hard right now. Please pray for the doctors and the surgery. Pray for comfort healing, and peace.

Steve and the kids are doing as well as can be expected and are trusting God. We can have peace knowing Bonnie loves Jesus and we can trust His will and plan for His precious child.



I don't think I was thriving today. For some reason, it was just a rough day. Short fuse. Nothing specific....just a bunch of minor irritations that just kept itching today.
Enough about me.

Brooklyn and Jayden are thriving!
My baby is CRAWLING!
I'll get a video up soon!

Jayden's urine came back with NO GAG's. We don't quite know what that all means but it appears that the genistein is working! Genestein is a supplement that they are on that is supposed to tell the body to slow down the production of the sugar that they can't recycle due to the missing enzyme. They measure GAG's (sugars) in the urine to screen for MPS. A child with MPS have abnormally high levels of GAG's. His first urine sample in Jan lowered the level to a normal range. Now there are no GAG's present. We don't know what the side effects are exactly. No one does, but, our genetisist wants us to keep the dosage the same. We believe that it is a good sign so far.

Some new pics...

Ama and Bee Ba
Bubba, Jay (his foot) Ama and Beeba
Jay the builder and Brooklyn ther firewoman!
Jay and Logan


Liv Life

Our dear friends, Kelly and Jake have put together a website with the help of some very talented people at an area church for Livia. We met Kelly and Jake back in October. Unfortunately, we became friends because one of their daughters, Livia, also has MPSIIIA (Sanfilippo) like Jayden and Brooklyn. If we would have met any other way, we would have been friends for sure! Kelly was the first mom I spoke to on the phone after our diagnosis was confirmed. It was an instant connection. Kelly and Jake were the missing link in our journey and over the last few months, Kelly has become my dear friend and sister in Christ. She is the only other person in the world I have connected with on such a deep level because we share a pain and joy that can only be understood by another mom facing Sanfilippo. God blessed us in huge measure when He placed people, who love the Lord, 1.5 hours away....close enough to Rockford (my hometown) that I get to see them whenever I am home. Sometimes I even make special trips to see them.

Liv has become like a 3rd child to me, in a way. I know I have said this before, and I feel so lucky to be around Liv when I can. Our children show us how to liv life. They also have a beautiful daughter, Finley. Finley is a carrier of Sanfilippo but is unaffected....Unaffected. As I write that, I realize in so many ways she is forever affected. Affected by fighting for her sister's life.

I am always so encouraged by Kelly's faith and the way she loves so deep. She is such a great mother and sister in Christ. We share so many ups and downs as we navigate becoming "case managers". Bottom line, she is a blessing that I can't put into words.

In support of Kelly and her family, and especially Liv....would you please support Kelly in anyway you can? We are on the journey together and they are just an extension of us. Jayden is even featured on their website! If you do nothing else, please visit their beautiful website and begin to LIV LIFE!

Love you....Hubert family!


Our dear friend, Jodelle, is simply incredible! She is bringing awareness to Sanfilippo and support Jayden and Brooklyn in the most creative ways. Jodelle has such a huge heart and is madly in love with Jesus! She has committed to paddle across Table Rock Lake 11 miles standing on a surf board to raise money for Jayden and Brooklyn on June 20. Below is her website link she set up and a picture. She also had the crazy idea to encourage people to join her putting purple streaks in her hair!!! That is awesome! Everyone in Branson is going to have purple hair!!!! (just like the visitor's in Branson!!!) (oh wait, that's blue hair!!!)

Thank you Jodelle. You are truly a light from God! You are a spark that is contagious and we love you so much!

First off, if you haven't checked out the website yet, be sure to go there and sign the guestbook and check out what this fundraiser is for a family in desperate need of your prayers and donations...

Now then, to all you ladies who love to make a fashion statement! Head to Stephanie's Salon out in Galena for a hot little purple streak put in your hair! From now until June 20th, Stephanie and Kim at Stephanie's Salon will have purple hair dye on hand and will streak a strand or two of your hair since purple is the awareness color for Sanfilippo Syndrome. All proceeds from the streaks will go to the Boyce family!!! I get my two streaks put in on Tuesday! One for Jayden and one for Brooklyn! So call today and set up your appointment too! Every streak helps! Stephanie's Salon 4 miles outside of Reeds Spring on Hwy 413417-357-6254For those of you who purple's just a little too crazy for ya, then that's okay. Just consider donating whatever you can to help this family. If just 200 people give $5, then we will raise $1000 right there! Pass it on! And thanks for your time!


Boyce Benefit and Display Opportunity

Thank you to all of you that came to support us at the Boyce Benefit! There was a huge turn out! I know some people couldn't make it and sent cards, gifts, and were praying for us and that means just as much as being there.
Thank you to Ashley and Kim for organizing this and Bee Street for hosting. Thank you to Kalie, Robert, Kathy, Joan, Ken, Laurie, Jill, Nate, Sarah, Dan, Lucas, and the rest of our awesome family for all the hard work you put in setting up, tearing down, watching kids, and all the behind the scenes stuff. All the purple people were family and there were A LOT of us!!!
This is how God is showing us He is good. I feel like God Himself is present when the body of Christ is gets together. We can feel the love. This is one way God tells me He is still good.It was the first official public thing we have done for the kids and there were some emotional pieces that of course came up. If you have been following the blog, you may recall me saying I wasn't ready to see my babies faces on a can, or by a purple shirt....Well the day came. April 10, 2010. And, although it was a bit hard to think about why people were there....and that this is for MY was easier to DO something so I tried to help. Jut tried to manage Jayden....To be honest, the outpour of people-many I didn't even know-superseeded the hard emotional impact that it had for a moment.He spoke through you. Thank you just isn't enough!Also, we are still collecting silent auction final payments-but so far, YOU raised over $11,000.00!!!!!

Thank you.


Lastly, I made a display that I wanted to make available to anyone who wants to support us in raising awareness for Sanfilippo. I was thinking people could place it in their place of business for a week/month. I have included pictures of the display. I wanted to make it a happy display...cause the info is so hard to read. So-you will see grass, a home and keys representing our current goal to raise money for a home on Boyce Lane, so Jayden and Brooklyn have a safe home that will adapt to their future needs. I also put some lemons on it.....when life gives you lemons-make lemonade, right? and purple is the color for Sanfilippo awareness. It is anchored by a white picket fence (read the blog entry with the same title to understand why-i think in Jan/feb10) and info about Sanfilippo with magnets, web site business cards, and a flyer about how people can help. It is centered with a lovely pic of the kiddos.If you are interested, please let me know.

Easter...a bit late

I wanted to post a few pics from Easter and I was a bit late. I want to comment that this Easter was the first Easter that I can actually say held more significance to me than ever before. I took time to walk through an exhibit dedicated to the hours leading up to the death of Jesus-Stations of the Cross-that our church put together. I also think my reaction to suffering is heightened given our situation. It was so meaningful to me that Jesus would suffer for a sinner like me. And at the level of suffering He endured so I can live eternally with my Maker.

I also think of God as father and what it was like to see His perfect son cry out as he was dying, "My Daddy, My Daddy, why have you forsaken me?" Wow. The best part of Friday was the anticipation I felt, that I never felt before, for Sunday. The day Jesus rose from the grave. The significance of that day is what made Jesus-God in the flesh. It fulfilled Scripture and gave truth its very foundation. We serve a LIVING God. It sets us apart from every other faith. How amazing! On Sunday, I enjoyed celebrating knowing that Jesus is risen and He will fulfill His promises and my children will be in his presence. We will be in his presence. Eternally. What hope! It makes this fallen world so insignificant sometimes for me-in a good way!

Now on to the pics...

Jay and Brooklyn Sunday morning...

Elle Bea!

The cousins-Elle Bea, Brooklyn and Lucy Jane!
Lucy rockin the shades...

Brooklyn-my little bunny!
Sarah and BeeBa having a moment....

The men and the women...seperate like a junior high dance...

Aunt Jill and Lucy...

Cole helping Jay find easter eggs..

Here is some pics of Easter Morning and Saturday dying eggs with Ama!


Uncle Ty Ty

google "Zion's Boyce plays with heart"

Uncle Ty Ty makes the news!


Brooklyn's Tubes

Well-another successful visit to Children's! I have to say that I was a little less nervous about this one. Brooklyn had tubes put in today and she did a fantastic job! There were so many of you praying for her! She was a little trooper! So strong. As she was wheeled away in her little hospital crib...she was on her belly, propped up, smiling in true Brooklyn fashion, wearing her bow! She did great and there were no problems.


I can't tell you how those words mean so much to us. They didn't have to put her under anesthesia and just used gas because she didn't get her adnoids shaved like Jayden so she recovered without a tear. Thank you God-for answering our prayers today!

Also, we are getting ready for an eventful Saturday with our first official fundraiser. This past week, we went to Bee Street for lunch with the kids. It was weird seeing flyers with my kids faces on every table and door in the place. I chose to accept it for what is was and enjoyed a lunch with my kiddos. As we were eating, I saw the wheels turning of some people at the next table as they connected the dots.....Hey-those are the kids on the flyer. They smiled and interacted with the kids. In my head...I kept saying....yep. That's us. Not someone else.

At the end of our meal, they motioned for me to come over. As I headed over, they handed me a check for $50. People who don't even know us. A complete stranger. But for that 30 minutes of lunch, they DID know us and my kids touched their life enough to not look away. It's not about the money. It is the fact that my kids were seen, loved and touched a life. THAT is what thriving in this is all about. It is what we all want from life, isn't it?

Thank you, God, for using this awful thing to bring you glory. May you continue to shine through our family. Lord, I pray for a cure or treatment. Save my precious babies. Regardless, my prayer is that you will use my babies to teach us all how to live. I want to live expecting heaven....Thank you for protecting my children from the pain of this world....thank you for using my pain to always point back to how truly wonderful you are. Help me THRIVE, not just survive in the storm....I want to dance in the rain.




Saturday I left with the kiddos for Rockford. I stayed until Wednesday without Jut. I went to give Jut some rest from the kids and to see friends and family for a few days. Usually Rockford is full of quick visits...this time I got to enjoy people's company for a bit longer which was nice. Here are some photos:

Brooklyn....8 months (almost crawling!)

Jayden digging in papa's yard...a favorite of Jayden!

Jayden found the eggs!

Our dearest friend Livia...
by a white picket fence!

Daddy we are home...lets golf!