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a quick update...

So...again I wonder why it has taken me so long to update. Sometimes I think I am moving backwards in the grieving process, and some days I feel like I am moving forward.....and the rest of the days I feel like I am at a stand still.

I do know this. When I am more connected it God's Word and am open to being used, I get a rush of energy and comfort. When I choose to ignore the promptings, I easily and quickly get discouraged. The worldly pain is too much. A lot of people lately have said, God never gives you more than you can handle....I wonder. My prayer today and probably in the days to follow is to thrive in this storm. To dance in the rain. To rise above Sanfilippo because this is the only healthy place for me to be.

Sunday I was baptized at church. I went to church first service and 4 people were getting baptized. I couldn't stop thinking throughout the first service that I needed to get baptized. I accepted Christ my freshman year of high school, and began walking with the Lord in 2002. I realized that I was "sprinkled" at 12 and needed to take the plunge. So, I decided to be obedient to the prompting, and asked between services if I could be baptized. Normally you write your testimony and take a class...and also bring clothes to wear. I didn't do any of that. I went to the skit closet, found a t-shirt and pj pants and got in line. It gave me a rush to be immediately obedient...a lesson I have been learning in the past year although I am historically stubborn.

Some news about the kiddos:
Jayden is doing well in school. This week is spirit week and so far he has had crazy hair and worn his clothes backwards! He is beginning to recognize a triangle and speaking more every day! He still has been having trouble with his left is clogged with wax. Jut thinks it came out today so that is good. He is also back on antibiotics for a sinus thing.

Brooklyn had her early intervention follow up evaluation and is meeting all her 8 month developmental milestones! Praise God! She is also scheduled to get tubes put in April 7 due to multiple ear infections. We are hopeful that it will also improve her speech in the future. She is about ready to crawl and has 2 teeth cutting through. Amazing!

We now have a secondary insurance, All Kids. They originally began coverage in Feb so when Jayden had tubes put in it was not covered. I requested they back date the coverage and it was approved! yay! now we may get help paying our deductible!

We have new exciting news about people still helping us. Thank you to Del who graciously volunteered our names to be the beneficiary of the Warren Volleyball teams effort to raise money for us every point they score. One of our own youth group students, Tyler Brooks is even on the team! Now, we are torn to cheer for Uncle Tyler and another student, Erik Ness on the Zion team or the Warren team! Guess we can cheer for both!

Ashley (and her friend Kim) are working so hard on the benefit. I think they have over 30 baskets donated! I don't even know if there is enough people to bid on the baskets! They have a coach purse, sports baskets, starbucks gift cards, key lime cove stays, hotel nights, and a ton more. I am even "donating" some paintings that Jayden did. They are so sweet and have worked really hard with Bee Street to do the benefit. We are so excited. Although we never thought we would be the family on the receiving end....still hard.

We also met with Denis and Leah. They are doing hoops and dreams in July. They have a cute logo and everything. We are overwhelmed that so many people have signed up to walk with us through this and have not given up on us...

Which leads me to say....whoever is praying for rest in our home, thank you and DON"T STOP! Our children are sleeping through the night...Jut is resting much better. There have even been mornings we have to wake Jayden up. Unheard of in our home!

Also, thank you to Sue Anderson and Karen Hamilton for the meals....and Leah and Debbie cleaned my house! We are still receiving donations weekly, some even from people we don't know. Thank you for loving us....
we are truly blessed by your hearts!

2 Corinthians 4:8-10 (New International Version)
We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body.


My cowboy!

Jayden spent a week at school learning all about cowboys and cowgirls. They ended the week with a "campfire" in class and all the students sang songs and "roasted" marshmellows in their cowboy outfits. Here are some pics of my cowboy!

And of course, my precious Brooklyn!


Awareness LINKS

Thanks Kelly!

I am following suit with Kelly and posting some links to visit to help you become more aware of Sanfilippo and encourage you to visit.

Team Sanfilippo seems to be the most promising avenue for potential treatments or a cure.

Founder/Parent Team Sanfilippo Foundation:

First family I saw online when we were waiting for a diagnosis:

Interview with Grace's mother:


Upcoming Events

Our cousin, Ashley, has graciously organized a benefit for our children. I thought I would post the info here. Also, our has a new "events" page with the latest info on events that people are working on for our family.

We are so grateful for all the hard work and help. It is always a bit of a battle to suck up our pride and receive the gifts people so generously give. We appreciate everything, but wish we could give back more. We wish we could help you instead of you helping us!

Boyce Benefit Date: Saturday, April 10, 2010
Time: 4:00pm - 9:00pm
Location: Bee Street Pub & Eatery3077 Sheridan Rd.Zion, IL
Facebook event:
Details:There will be a silent auction, raffle & 10% of your mealwill also be donated to their cause. Donations are welcome!

Hoops & Dreams
Date: Saturday, July 3, 2010
Time: 10:00am - 2:00pm
Location: Beach Bible Church3520 21st St.Zion, IL
Details: Coming Soon


utah...the pics

3.06.2010 4

We survived another day in the snow and made it through snowboarding with no injuries. We are a bit sore...but the hot tub helped! I can't wait to upload our pictures! We had such an awesome time and are so grateful for the blessing of a wonderful vacation!

We are also so thankful for our friends, Micah and Kathrina. One of the things I love the most about them is the way they love people. Everyone is important to them and worthy of respect and love. From family to friends, maids to valets.....everyone who meets them feels loved. We especially are so blessed by their hearts and generosity. They went above and beyond to treat us to a wonderful vacation. From paying for us to go to ski school to dinner, giving up their vacation comforts to teach us how to snowboard or sharing a room....they didn't even have to invite us.

We are also thankful for the other two couples we met. Tanya and Dan and Chris and Peter. What wonderful, generous people to let us tag along on their vacation. We could never experience the wonderful gifts without their generosity.

Another HUGE thank you. Thanks Ken and Joan, Jill and Dan, and our dear friend Andrea. You made it possible for us to get this restful, fun vacation while you worked hard entertaining Jayden and Brooklyn. We love you all so much. We also owe you huge....even if it was a labor of love.

God is so good.

5AM we will be heading back....gotta go to bed!

3.05.2010 3

I can feel my body detoxing from stress. It is so weird to move at such a slower pace. Although the reality of our life, and how it has changed, is still with is not in the forfront of our minds for now and that is a tempory gift that I am choosing not to feel guilty about. It is so energizing to focus a a moment on taking a break and recharging the battery that stress and crisis has depleted. And, I think it is an easier decision to not feel guilty when I know it is needed and temporary. We needed this and are grateful for the opportunity to just have adult company and adult fun! We miss Jayden and Brooklyn.....but we also take joy in the little traveling with no carry-ons, diapers, and handy manny DVD's. We are enjoying waking up when our bodies wake us and slowly eating breakfast....feeding only ourself and it all getting into our mouths. We also love all the things we do with our kids....but a break is nice.

Today we are headed to a Spa and then dinner...attempting to snowboard tomorrow. Jut is hitting the slopes today with Micah....

I hope he has a great time! Will update again soon!


Utah day 2

Can you say S....O....R....E?

Jut and I tried to snowboard today and I spent more time falling down a hill and wiping out more than standing but I can say that there were brief moments of me snowboarding! Jut did much better. After we spent the day with a professional snowboarding instructor (a priceless gift from Micah and Kathrina) I went to the hottub (in the snow) and Jut and Micah went to the blue hills.

So much fun! I desperately wanted to bring my camera but it was too big to fall pictures will have to wait!

We are having such a nice time and are so grateful for the vacation!

We are attempting the mountains again tomorrow so, hopefully I will be able to survive another day of butt injuries!

3.03.2010 1

So we are in Utah. A few months ago we were talking with our dear friends, Micah and Kathrina, about taking a trip sometime because we had free round trip tickets through Southwest. They were headed to Utah with family and generously invited us to tag along. We arrived in Park City, Utah today and it has been so much fun so far! Of course we miss the kiddos....but it is a much needed get away and respite for our marriage.

I will try to update as we are here. We are attempting ski school tomorrow to both learn how to snowboard.....