Well…we made it back from Disney is one piece…barely. We knew going into this trip that it was going to be a difficult time, and it was.


we left via limo for o’hare and Jayden and Brooklyn did great on the plane! We got to Coronado Springs and settled in. We checked out the grounds and had dinner. The weather was warm….the only day we can say that.

we went to Magic Kingdom and followed Pastor Joe’s detailed itinerary. Jayden, Brooklyn, and I did Dumbo, we all did small world (yes, even Chad and Tyler!) and of course, we did space mountain (not Jayden or Brooklyn!). It was a busy day and the kids did great. We even saw the fireworks show at the end.

was a downtown disney day. We shopped and Jayden rode the choo choo train and Brooklyn posed next to the princesses. Later that night, we had dinner with our dear friends, Kelly and Jake, who were also attending the conference.
After, we headed to the first session of the night. It was hard. We were submerged into MPSIIIA….name tags and all. We went into a room with other parents (and kids) living with Sanfilippo. It was challenging to see other kids who have progressed further in wheelchairs, some were making noises, twitching, some with severe mental special needs. Two other moms proudly showed pictures of their sweet children that have gone to heaven. And there we were. Kelly, Jake, Jut and I….shell shocked as words of feeding tubes and home modifications, IEP’s, and prescription drugs danced in the air. We later met some of the parents I communicated with when we first got the diagnosis. They were wonderful. I am going to try to remain positive about things, so the best thing was meeting the other Sanfilippo kids and parents.

was the full day of the conference. Jayden and Brooklyn went with Ama, Bubba, Chad and Tyler for the day. (Thank you for taking them!) I know they had fun. J went swimming and Ama even did our laundry. I which I could report the day was better. The conference just was not good. We didn’t learn anything…in fact, it was more despair than hope. Again, connecting with other parents was really the best part.
We later joined the family at Planet Hollywood for dinner and celebrated Kelly’s birthday. That was the highlight for Friday.

was Hollywood Studios. Jayden loved the playhouse disney show and even met Handy Manny! He was a bit scared though. We also did tower of terror and rockin roller coaster. Favorite part? The Christmas lights show.

Later that night Jut and Jay went to the hotel pool. J took off running and fell, bumping his head on the concrete and scratching his face under his nose. We thought everything was fine but he woke up the next morning and was stumbling all over. He threw up as we were waiting for the ambulance to come get us. We thought he maybe got a concussion…

morning was spent in the ER getting a CT scan. Joan texted everyone and you all began to pray. The CT scan came back normal and we left by noon with no answers. They thought he may have moved the fluid in his ears, causing a balance problem which made him nauseous. I have to tell you now, that I felt broken and defeated. Jut and I feel so fragile. The littlest thing sets us off into this overwhelming feeling of brokenness and helplessness.
We attempted to do epcot when we got back cause J was feeling ok. Bad choice. I ended up carrying J back from Mexico to the bus, and later took a 3 hour nap with him. Oh yeah, did I mention I had a head cold?!

By now we were ready to come home. We spent the morning at Downtown Disney and headed back to the airport. The flight was good….not as good as the flight down. Oh yeah, did I mention we think Brooklyn has Croup? Just another thing…..

So, a hard trip.

If you are wondering why Christmas morning I am up so early writing a blog, it is not because “Santa” is putting Christmas presents under the tree, it is because I have been helping Jut get 3 inches of water out of our basement since 5 this morning and we just finished. We are idiots and j got a huge bounce house from the entire Boyce family so last night, we unplugged the sump pump to test it out and forgot to plug it back in.

I know.

Well, Merry Christmas. We hope you are having a better one than us!
Jut made a great point last night. It is so easy right now for us to get worked up about all our problems…we are standing in quick sand. But Christmas isn’t about us. It is about Jesus. We celebrate his birth and rejoice He alone is the savior. he alone is the only thing saving us. Although that is getting harder for me to see in the moments, I still know it’s true.

4 thoughts on “Disney

  1. I just spent some time catching up on your blog. It sounds like you had quite an adventure in FL. I agree with you, that there wasn't a lot of new information given. (I was disappointed in that, too.) And yes – meeting the other families was the highlight. My friend Laura and I kept thinking of you and the Huberts throughout the weekend. It was overwhelming and scary for us – and we have been in the MPS world for 2 years now. I have never actually seen an older Sanfilippo child and it was unsettling in some ways. I can't imagine Waverly & Oliver one day being confined to a wheelchair, unable to eat. I had to step back and remember to take it one day at a time. I cannot believe we have made it this far – with all of the changes the kids have gone through already. And you just do it – you have to. I hope there were bright spots in your trip. I wish I could have spent more time talking with you all. It was lovely to meet you.


  2. Hey there! Just wanted to say that I've been through so many of the feelings you mentioned above and I'm praying for you and yours. That first conference was super tough for us as well. Seeing other families (always has been my favorite thing)brings on a whole new line of thoughts…Just what I've read on your blog and hopefully what you know about me makes me refer you to the Steven Curtis Chapman song, “Our God is in control.” Those lyrics just suit MPS so well; if you haven't heard it, I highly recommend it! Praying for you. I really mean that.


  3. Dear friend…I have cried both times I read this post…I just don't understand. I know that you are and never will be outside of God's arms but it is sure easy to forget that sometimes. I have missed our Mondays and I can't wait to catch up. I hope that in the midst of this sadness and difficulty that you will feel strong even in the most broken places. You are never out of my thoughts and prayers-even when I'm in Nigeria!!! and I love you and your family so incredibly much!!!


  4. I'm SO sorry all this stuff is happening to you guys. I keep wondering when God is going to show you the light at the end of this dark tunnel but we must continue to trust in Him, no matter how hard that is. You and Jut are such strong people and you continue to be an inspiration to us all. Love you guys TOO much!


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