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June 11, 2011: Ali’s Birthday

Aliyana Henry is one of Jayden’s best friends. From the time she and Jayden were sparkles in our eyes, they were friends. She is about 2 months older than Jayden. She (and her family) used to be 3 minutes away and sadly, moved to Elmhurst (aka the promised land, according to Katie :) a few years ago but we have remained close to the Henry’s. They will always be treasured friends.

Katie and Jud do an excellent job parenting and they have really helped Ali embrace and love Jayden, even though he is a bit different than her. To Ali, Jayden is just…well, Jayden. And as a parent of a child that may not experience a lot of acceptance from his peers, it means the world to us that in her eyes, he is just...Jayden. She takes good care of him and still pays attention to him, which means the world to us, especially when her other friends are around. In fact, that has been a hard transition for us. We are learning how to truly be joyful for other children as they meet milestones, and separate that from our grief that our children are not doing the same.

Thank you, Katie, for being gracious through the process and still sharing about your children and all the wonderful things they are doing while still being sensitive to where we are. You have never offended me and I LOVE to hear what new and exciting things are happening with the kiddos. We love the way your family is with our family and consider your friendship truly a gift. We also enjoy how Canyon is now interested in Jayden. It is fun to see him run around in Jayden’s old clothes and ask “where’s Jayden?”. Kingston just doesn’t know what he is in for, but soon enough!

We are thrilled that Ali is becoming such a lovely young woman and feel blessed to be called Aunt Stef and Unc. We love them like they are our own and were honored to share in her day. We drove to Elmhurst and went to a cute pizza joint and then to the park. The kids had a blast!

Ali-our birthday prayer for you is that you always find your identity in Christ, that you embrace an eternal perspective and see yourself through God's eyes and not the worlds. We thank God that he is already pursuing you. We pray for your salvation-that you know and love him deeply. I pray that you will be just like your mother, with a heart for the hurting, and love that runs deep for everyone she comes in contact with. We pray that all your independence and “grown-up” behavior will mature you into a lovely young woman of Christ!

Thank you Henrys-for loving us like family, Ali-for including us in your day, and we look forward to celebrating more birthdays together!

June 10, 2011: Dr. Burton Checkup

Christina (the poor high school victim that volunteered to join us) and I took the kids to children’s for their check-up. They weighed Jayden and Brooklyn and suggested we start watching their diet better…hummmm…does that mean no more fruit snacks because those are life-savers to us! Other than that, we just went over the Univ. of Minnesota Natural History Study results, got urine gag testing and blood drawn. We also discussed hearing aids, because both kids are getting them. Overall, the trip was successful and Christina made it home in one piece-but I don't know if she did in the picture! Thanks, girl!

June 8, 2011: House Plans

We are excited to announce that we have started the house plans! We had an architect donate his time so the cost was drastically reduced. He actually used my chicken scratch drawings and designed a beautiful home specifically designed for our needs. Learn more exciting news at

June 7, 2011: Jayden’s last day at EPIC

It is bitter sweet saying good-bye to EPIC. It has been two years since Jayden started pre-K and I remember balling out a director because I didn’t want my little 3 year old going to the south of Waukegan on a bus! I have to say, I have grown a lot since then and learned in my stupidity that it is not really the school district you are in, it is the staff that makes or breaks your experience with a school. I remember Jayden’s first days of pre-school, putting him on the bus, and following right behind in my car to make sure he got there ok. I remember being frustrated that he had a horrible teacher his first year. I remember carrying Brooklyn in her infant seat, taking her to Jayden’s IEP meeting to discuss his new diagnosis of Sanfilippo in October 2009. I remember meeting Nancy-who would become my eyes and ears into the school and be the biggest advocate for Jayden during our short stay. I will never forget Jayden meeting Ms. Rodriguez, for his 3 days of summer school. Kim was affectionately deemed the “boot camp” teacher who would become his 2nd year teacher and second biggest advocate. She put Jayden on the potty every day for an entire year. During circle time, she would put him in his cube chair, place her one leg over him, and read to the class while Jayden chewed her shoelaces. She won my heart when she and Nancy made the trip to the hospital twice when Jayden had a cyst that ruptured summer 2010. The last semester, we met Ms. Newbury and Ms. Torres, who stole Jayden’s heart. The support staff would greet Jayden, and call him “pape”, a Spanish endearment that makes his entire face light up. Jut and I joke that Jayden may not have a speech delay, he just speaks Spanish to us and we don’t understand because his entire class was bi-lingual. Overall, I am sad that he has to start over meeting new people, but I am excited that they helped us with the transition, securing a fabulous teacher for Kindergarten in the fall (who was also his summer school teacher). Thank you-EPIC staff, you have been so wonderful to us and we will miss you! Whittier, watch out-here we come!

June 6, 2011: cooking

June 6, 2011: cooking
Believe it or not, I can actually say I can cook! Like meals! For about two months now (I am writing this 7.31) I have been using e-mealz. You put in your store of preference and your “diet” preference (low-fat, regular, gluten free, etc.) and weekly, it generates your meals on an excel sheet and your grocery list by aisle at your store! It even estimates how much each item costs, and each item has a corresponding number to each meal, so if you don’t like the meal, you cross off all the items with that number so you don’t purchase them. It has been really fun to make things with ingredients, and to get the results from happy kids and a happy dad each meal. We also have been able to have enough food to have over last minute guests. Angie texts me sometimes to see what is on the menu for the night! We all rank the meals out of four stars and most have gotten 3-4 stars! We do the low-fat, walmart meals and they really have been yummy! I even made pizza and shrimp with grits which both were really good. It’s $15 for 3 months of menus.



June 5, 2011: Brookfield Zoo with Children’s Memorial-Part 2

Part of the reason Kelly and Liv joined us was so we could go to Brookfield Zoo together. Jake and Finley met us down there and we were able to walk around and attend the event sponsored by Children’s Memorial. I had a great time at the zoo but it really got hot that day and the kids were done by 1PM. The event was disappointing.

I love that they get us all together, but time and time again, it is the same information. We do not need to know what MPS is…we are good and well familiar with it. I can tell you what I want….A chance to talk with other Sanfilippo parents, information on daily living, how to parent a child with MPS, activities I can do that will increase learning and be fun, a chance to meet medical equipment companies and test out products, information on writing medical letters of necessity, how to advocate for my children in the schools, training for caregivers and medical staff and case managers working with my children, and childcare so I can participate.
I think it is ridiculous that they offer these MPS trainings and don’t think about accommodating families. The last event was downtown Chicago in a non-child-friendly place with no changing tables and stairs to get into the event. The Zoo was better, but still, same info and no childcare. We lasted through lunch, then Jut and Jake and another family spent the rest of the time chasing our children at the park. I would love to host my own event…and maybe I will! I will say that I am thankful that there are even events out there for us, and the biggest gift is the feeling of not being alone in this.

When we came home, we headed over to Stephanie Habel’s for her 8th grade graduation. She and her family watch the kids a lot and are good friends of ours. I am so excited she is a high school student now so I can see her on Sundays! Way to go, Steph, you’re in high school now!


June 3-4, 2011: A visit with Kelly and Liv

There is a special spot in my heart reserved only for the Huberts and I was blessed to spend extended time with Kelly and Liv this weekend. They made the trip out we had a great time talking, sitting by the pool, enjoying the lake, and just being together. Kelly and Liv just make me smile. And, although I wish I could take Sanfilippo away from Liv as much as I wish I could take it away from Jayden and Brooklyn...I am glad that we have one another. I feel like I am not alone in this when I am with her and when I look at Liv, I see my children. I love Kelly's heart for others, and her continuous determination not to give up. She is a crafty, beautiful, smart, athletic, witty, fun, and loving friend and I admire her so much....Thank you Kelly for letting me be part of your journey....

May 31, 2011: Mentoring with Jill

Throughout this past year, I had the honor to be mentored by Justin’s Aunt Jill. In the class that Justin and I did, VP3, each participant is encouraged to get a mentor. I knew right away that this year, I wanted to be mentored by Jill. I have always enjoyed her company and really admire her relationship with her children and husband. She is an awesome Kindergarten teacher and strong woman of faith. It was a great year sitting at her feet and learning, although many times she would be literally sitting at mine. I blabbed away about the things I thought God may be teaching me, lessons and challenges I was facing, and even had the chance to share my narrative, or life story, with her. I think the best part, although there are many, was being trusted with her life story. Jill took the time to hand write her life story and share it with me! What an honor! Thank you, Jill, for teaching me how to be a good listener, when to choose my battles, and for many shared tears and laughter!


May 26, 2011: good friends and default settings

I love girlfriends. That’s right. 5 years ago, I couldn’t count 5 girlfriends on one hand, now I can honestly say my hand is overflowing with solid, honest, authentic, life-long girlfriends. It is so rare that you can show all your true colors, and be loved right through it.

I was having a really hard week. There were multiple conflicts happening that left me broken and angry, to be honest. They were conflicts that attacked who I was as a person and left me broken. (Sometimes, I think I should get a free pass from God challenging me in other areas when I feel like I already am being challenge enough!) Many days, it feels like I am hanging on by a single thread, and this night, it felt like someone cut the only lifeline to "put together" I had left. I always say the straw that broke the camels back...

We had planned on getting together for very different reasons-actually to watch TV together. The night, however, turned into a wonderful, raw, emotional time for us all to share and support one another. The few hours I had to talk through my feelings and not pretend to have it all together, helped me have a clear mind to respond to one of the conflicts in a positive way. Which, by the way, goes against my normal default reaction to being attacked.

I am a fighter in recovery-and God continues to break me of responding in that way. I will be honest, this night, I was angry and hurt. I usually try to hurt the person worse than they hurt me. I even enjoy verbally sparring and winning a bit. Unfortunately, that goes against how God tells us to respond. Bummer.

Don’t you hate when your natural reaction is the very thing God is trying to refine in you? It is like God hitting reset and manually changing all your settings which sucks because your default is easy and you don’t have to think about it. You don’t have to think about dialing a number on your phone when it is on speed dial, or what your password is when it’s stored in your computer. It’s only when you loose your contacts or forget your login information it becomes a problem and you have to really think about it. James 1:19-20 says "19 My dear brothers and sisters, take note of this: Everyone should be quick to listen, slow to speak and slow to become angry, 20 because human anger does not produce the righteousness that God desires."

And it seems God keeps trying to reprogram me. I want to react the way I have for years, but new life with Christ means He wants that ugly default parts of me, too. This is a life-long thing….He will continue to want more of the “nasty” so He can get the credit.

And-that is what happened. I was deeply hurt but after talking honestly with my friends and getting out the nasty, I was able to reach out and initiate a conversation that needed to take place and respond the way He wanted me to respond. God is so good in that way, and honest friends that are full of grace and truth are priceless. Thank you girls….you are such a gift to me. MAKK


May 21, 2011: Make-A Wish

The morning was spent with my two sick babies, the even was spent dressed up at a ball. I felt like Cinderella and Angie was my prince!  HA!

I had the honor of joining Angie to the Make-a-wish ball because Discover (the credit card) was one of the sponsors and that is where Ang works. So-she got an extra seat and I was honored to join her and 2 other couples. We went down on a party van and were VIP when we arrived. I bought a raffle ticket to the Bahamas…which I didn’t win. Shucks. We had fancy food, like sheep meatballs (gross-sheepmouth) and food that takes up a quarter of your plate. Dinner was yummy but it left me wanting more! It was a great night of giving, laughter, and hearing from the founder, how make a wish got started.

I always struggle a bit with extremely wealthy people walking around thinking they are so great as they bid on $20,000 for pricey packages for a good cause. Don’t get me wrong, money makes wishes happen. I just hope those same people give when no one is looking. I also hope that for me.

It was interesting being there as a soon to be make-a-wish family, under the disguise of a VIP corporate sponsor. I sat at table 3, right up front, close enough to wave at Billy Corgan and Brian Urlacher (if he was there ). I kept thinking, these people are actually making my children’s wishes come true. The funny thing is, they really don’t have big wishes. They don’t want to go to Disney, or meet someone famous. In fact, those things would scare them. They don’t want a shopping spree or care to be a firefighter for a day….Brooklyn would scream in the store and Jayden can borrow Micah’s hat if he wants, but he is scared of that too. The wish that we will be requesting will be towards the new house. We are doing a safe room for the kids to play in and will be wishing for some therapeutic toys for the room.

All this to say once again, nothing is as simple as it appears. Everyone has a story. Sometimes, our two worlds collide. A donor and a receiver happen to be the same person. I just have to coexist in two worlds, but, don’t we all?!

Thank you Discover, Angie, and Make a Wish for a wonderful night!