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10.20.2010

One year ago...Oct 5

October marks the 1 year anniversary of our introduction to sanfilippo. October 5, 2009, was the first genetic appointment we had that mentioned the word MPS. It was the day they took Jayden's urine to confirm their suspicions. It was the day I saw a boy with MPS on line and knew in my heart, both of my children had MPS. It was the day our world changed.

October 5, 2010, a year later, we had plans to have dinner with Sarah, Nate, and the kids. I really wasn't feeling any sort of feeling towards the date, but knew that Oct 5 was the one year anniversary. I was excited we were on time for once, looking forward to the kids playing. I had NO IDEA what the night was actually going to be. When I walked in Sarah's home, I saw Canyon, a son of our friends who live 2 hours away. It didn't add up. I continued to walk in (Jut was still outside) and I saw about 20 of our closest friends and family in the room. They had conspired to have a surprise "Fall love Fest" as they call it. They wanted to let us know, in a tangible way, they are in this with us for the long haul, and that God deeply loves us.

Words do not do the night justice. The only thing I can compare it to is heaven. The body of Christ in fellowship over a meal, praying over my family for an hour, and loving us with laughter and song....we were overwhelmed and drowning in love. Love of our friends, but the love of Christ, more so. He spoke through His people to say...I am WITH you. I am HERE. I FEEL you. I will overwhelm you with my love...just rest in it.

They also contacted people that couldn't be there (Sarah's house is kinda small) to contribute to a scrapbook they put together of their declaration of commitment to walk with us. Talk about too much. Justin and I were in tears. We have always felt so blessed by the support we have. We have never felt alone. I feel like God was saying with abundance, I will be there in my people and this night is like the sugar on top. Totally undeserved, free gift of love.

How can we ever say thank you?

It only way I know how is to show up. Show up for people and be the love of Christ to them.

God, please grant me the opportunities and prompt me to move when you lead.





















lil' Miss Lucy Jane-Oct 2

Lucy is One! Yay! We had a blast at Lucy's first birthday! Cake, Pizza, swimming (indoors), and presents (even for us!). What a treat! We love you!

























Happy Birthday GG Boyce-Sept 29

On Wednesday, the family celebrated Great Grandma Boyce's Birthday and took over the back room of El Lago. It is always fun getting together with a big family and celebrating. We love GG Boyce. Jayden loves mowing her lawn and Brooklyn loves to eat all the fruit she buys for us! Thank you for always thinking of us and happy birthday!












Going to work and GG Beas-Sept 28

After Edwards Apple Orchard, We decided to drop off some of our goodies to the guys who were on a job. I was in a photo happy mood and got some great pics of a "normal" day around the Boyce family. We cleaned up and headed over to GG Beas for dinner. Jayden did a great job eating and it was great visiting with her!


































































































































Edwards Apple Orchard-Sept 28

On Sept 28, Jayden, Brooklyn, Ama Joan and I headed out to Edwards Apple Orchard, an Annual tradition since I was a little girl. It is about an hour west of us near Rockford, so my step-dad, Steve, joined us on his lunch break. It's always fun to take the kids because there is plenty of run space and tractors (Jayden's favorite) and plenty of photo op's. Thank you to Steve and Joan, who rangled the kiddos so I could get these memories!





































































































































Bring your parent to school day-Sept 24

I was an honored guest in Jayden's classroom on September 24. I always love spending the day with Jayden. It was fun to see him in that environment, trying to play with friends, running outside with a huge smile on his face, and "telling" me all about school. He always is surprised when I don't leave. He makes sure he says, "my mom" frequently to see if I am still there. It is fun.

It challenges me a lot to stay focused on his strengths and not compare him to other children. He, by far, is developmentally the youngest in his class. But, for Jayden, he is showing significant growth. He seems to really enjoy school. I send a communication log every day for his teachers to share how he is doing and here are some of the successes:

My teacher was so proud of me for:
-going pee on the potty
-sitting and singing songs on the potty and not getting upset
-playing with lots of friends outside and in the room
-cutting with scissors
-having a good day
-coloring for about 5 minutes before getting upset
-loved making a ghost
-sang "abc" tune
-coming in when the bell rang outside and stopping at stop sign without leaving room
-learning new words...(so what, if they are Spanish :) "hoy")
-great at attempting all PT tasks, even moving surfaces, navigated over obstacles without tripping even climbing up the slide with ease
-enjoyed shaving cream on hands
-J is a lot more agile on the playground. running a lot more with little tripping over the different textures/ground.
-said "i done" on potty
-eats lunch independently and opened his own snack
-says "I'm going with my mom" "I dig a hole" and "neon"
-very verbal today "I done" "i got you" shoe, bow, and very playful
-asked lots of questions in OT, likes the ball
-enjoyed therapy OT
-pulled up his pants independently

Here's the truth. A normally developing child at 4 can do all this and more with ease. However, Jayden will most likely loose many, if not all of these one day. So, it is all about perspective, right? Let us rejoice not only in what he can do, but even more who he is. May Jayden's light continue to shine brightly and let us all learn how to live in each moment, just like Jayden. Sometimes, I feel that I am the one with the disability. Fully able-bodied and able-minded, and still lazy and ignorant. God has made Jayden and Brooklyn more heavenly mature, and earthly gracious than me. Keep making Kingdom impact, buddy, I look up to you and love you very much! You make me so proud!

normal habits-Sept 23

So, I have realized how fast a month goes once again! When you live a "normal" day, time seems to fly by. It is amidst a crisis, that you are forced to slow down and really "sit". Time stops as you await a result, diagnosis, or test. But, when you are running full speed into your to do list, rarely do we stop. I blog a lot when I am in crisis because it helps me process my thoughts and I have time. I am thankful for crisis simply because it forces me to reevaluate what is important. However, I would much rather get the lesson in my normal days. Whatever "normal" is!

I am reading a great book, A Place of Healing-wrestling with the mysteries of suffering, pain, and God's sovereignty, recommended by a dear friend. It is written by Joni Eareckson Tada, who has her PHD in thriving, so to speak. If you don't know her story, I recommend picking up her book. Here is a quote she discusses by Mary Jane Iron:

"Normal day, let me be aware of the treasure you are...Let me not pass you by in quest of some rare and perfect tomorrow. One day I shall dig my nails into the earth, or bury my face in my pillow, or stretch myself taut, or raise my hands to the sky and want, more than all the world, your return"

All that to say, a month has come and gone with no real "news" and I have not made one blog entry...people who enjoy reading have gently asked if I have quit, and the answer is "no", just doing a lot of "normal" lately!

God is still much at work and teaching me a great deal of lessons that I would love to share. Again, the reason I started this blog was simply to print it out (using cutestblogontheblock) and "scrapbook" every year. This was prior to the diagnosis. I still have plans to print my second book this december.

So-beginning with September 23. A former youth group girl came over to just hang, and challenged me more than she will ever know (unless she reads this, I guess). She went to Mexico and had a huge "God" moment. It moved her to make some significant life changes and get baptized as a symbol of her commitment to God. As she was sharing, I was convicted of something that I, too, had been holding onto that was getting in the way of God using me. It was a personal struggle that would take a lot of discipline to get rid of. I thought, if my friend can do it, so can I. I remembered, I lead out of who I am and can't lead anyone further than I myself have gone. So, I gave my struggle to God and expected Him alone to change me. I am happy to say that He showed up in huge ways. Something I heard recently made a profound impact on my prayer life. It is not new, but hit me in a new way. When we pray God's will and His promises, He always answers in the way He said He would. It may not be the way we thought He would answer our in our timing, but He keeps His promises. It is when we pray our will, He answers no.

Funny, how, when you are struggling with a habitual sin, and remove it, God shows up to refine you in other areas. It is as if that habitual sin was a loud stereo on all the time. When it is on, you can't hear anything else. When you turn it off, you can finally hear all the other sounds around you, freeing you up to take action.