The first day we took it easy and explored Downtown Disney. We had a wonderful lunch at Fullers Crab House. While in down town Disney we built a Ride maker. We added the remote control unit to it. When we where at Check up the manager had heard us talking about the reason we where making it and that we where donating to Noah’s Van fund event in St. Augustine. I was ready to pay for when he blessed us and Noah with the everything we had picked during our build of the car. Before we went to bed we went to the pool.

Day two was Schizencephaly Awareness. We drove to St. Augustine to meet Noah, Trisha and River. We had many things to donate for the fundraiser. We had plans back at the resort that night.

Once we got back from St Augustine we quickly got the girls ready for a Princess dinner. We had a little time to go see that Nemo ride and Crush the turtle. We then headed to the Norway village for Dinner with Princess Belle, Snow White, Ariel and Princess Aurora.
We finished the night off with the best Fireworks.

Day three brought a much slower pace day. We woke up and had breakfast at Art of Animations quick service dinning. After that we took the bus to Magic Kingdom and got on the Monorail. We enjoyed just exploring the hotels and relaxing on the monorail. We finished our night off with Dinner at Bongos.

Day four was the final day. A Day that brought little sleep and much fun. We spent the day at Magic Kingdom. We started by riding Dumbo the ride. Ava got to help act out the story of Belle and beast falling in love. She was disappointed that she did not get ride everything she wanted. Joshua and I have decided that this is not our last trip to Disney.

Joshua and I are sad that things did not work out as planned to meet up with our daughters Birth mom. We are excited that we got to meet Noah and see a little taste of what life might be like. We saw a side of Ava that has shown us that she will step into the helper to Gracelyn as Schizencephaly, cerbal palsey and epilepsy is part of our life.
Hope you enjoy a few photos from our trip.

In 2012 Joshua and I decided that we needed to move closer to family and a place that could give Gracelyn the care she needs. The choice to move to Colorado seemed to make sense.

Had we seen what the future would hold, we would have still moved. We just would have done a lot of things different. Joshua and I would have handled the sale of our home different. To be truthful we would have come before hand to look for a place to stay. We are thankful for my parents who let us live with them for a short time.

Had you told me that being myself would create a deeper valley between a family member. I am not sure I would have ever walked this path. That being said, we know we did the right thing by following Gods Plan HERE.

Since moving, God has given us a family though our Church that not only loves us but blesses us is in ways we have never felt. They have truly stepped in when we need it most. THANK YOU Grace Community Church.

You might by asking where my parents are when we need help. The answer to that question is easy. They work with MAPS RVers. So they our gone 8-9 months of the year traveling. They help the 3-4 that they are here.

No matter what the future holds from here. We know that God is in it.

Lisa and Joshua

Our daughter Gracelyn was diagnoised at 7.5 months with Schizencephaly. She has changed our world. We love the way she brings Joy to a room. Gracelyn is a determined and fighter. She wants something she finds a way to get want she wants. She has given us a reason to never give up. We would not get the daily blessing and joy she brings if it was not for a selfless birth mom.

The worst part of her diagnosis is seeing her muscle tighten and not being able to fully strength her out. As a parent it is hard to watcher try to communicate something and not understand what she wants. Even with all the therapy and doctors appointments I would not trade one day.

Amanda

Faith is the positive outlook everyone needs in life. Nothing ever gets her down. She is constant smiles. I would have to say one of the most difficult things about schizencephaly is the frustration she feels when she is trying to tell us something, and we can’t get it. That’s got to be one of the hardest things for her. She communicates through her eyes mostly, so when she can’t “show” us what she’s needing, we all get a bit frustrated. Other than that, she’s about the happiest person in the world. Even while she’s sick throwing up in the hospital or just throwing up at home, she’s still all smiles. It really is the sweetest, saddest thing ever. Faith makes great strides all the time at home and at therapy. I couldn’t be happier to be this little girls mom.

Trisha

To be honest I would trade all of Noahs issues and take them all on. The worst t is knowing you are defenseless in the future. I wish I never even heard the name Schizencephaly. But the only thing good about it all is Noah has taught me to look at the world for the beauty and not the ugliness us “normal people” see.

I have heard crazy things like:
When will her/his brain grow back?
Do you think she/he will ever be normal?
Is it permanent?
Your doing a great thing?

The list goes on and on.

If you ask parents and Grandparents of Schizencephaly children they say this:

Ilcia
Best is that my son changed my life and for nothing in the world I won’t change a thing

Worse well seeing my son wanting to do things other kids do walk play or talk breaks my heart

Jackie
I agree with Ilcia with the best. Definitely I am a much better person because of him.

As hard as it is dealing with this, the worst is dealing with outside parties…. insurance companies (appealing for recommended procedures by his physicians, etc… and constantly being denied), school system (being an advocate and getting services, making sure the IEP is enforced, etc..)and “not so smart” people who try to force their opinion about what you are doing wrong

Diana
Best: Our Andyman was sent to us directly from God. Andrew taught our family the fruitages of the spirit in Galations 5;22-23. Love, Joy, Peace, Long-Suffering, Kindness, Goodness, Faith, Mildness and Self Control.

Worst: Knowing there are wonderful treatment options and better equipment but you can’t afford any of them. When you see other people with proper carseats and mobile vans and you have to still lift the wheelchair into the back with no ramp. You cant schedule therapy sessions because no one else can take him to any appointments because they cant lift the chair into your van. It breakes our hearts to not be able to meet this angels needs. When you have to rig pillows as a carseat to transport our Angel home from the hospital is a shame. Sad thing is,, I’m just a gramma and cant muster the energy to get a second job… you don’t have to add this one.. Worst should never exceed best

Jenna

Bubbie has bilateral open-lipped Schizencephaly. No seizures, about normal intelligence, totally dependent on us for mobility and care, feeds himself a little, a whiz at technology when it’s accessible to him, a sweet and lovable boy!
The thing I like most about schizencephaly is that it is probably the reason I have Bubbie. Had he been healthy, his birth parents may have not placed him for adoption and I wouldn’t know the blessings of having him in my life as my son.
The thing I dislike the most about schizencephaly is the limits that it places on Bubbie.

Please Lord provide that break. Give Me time alone out side the house with my husband. Lord I try to be strong, but really feel weak right now.
Your daughter

The bond can not be broken.

Seeing my baby this way is not easy. I personally feel that pushing for answers is where we are. Please pray we get answers and momma bear does not have to come out.

You may have heard me talk about or even just seen the world on my Facebook. My passion and desire to spread Awareness has become a burning desire. I personally will not stop finding ways to share about this Rare disorder. There has to be resources to help families. The worlds needs to know that everyone that lives with Schizencephaly is a fighter. I am going to make it my point to find ways to help not just Gracelyn, but every person effected. Believe with me and pray God opens doors to create a national awareness day and much more.