Leah Jillian: April 2014

We have been pretty busy lately. Two weekends ago we had the annual Spina Bifida roller skating party. This was the party where last year Leah got to try out a big-girl wheelchair for the first time. What a difference a year makes! This year she was out in full force with her wheels and she also enjoyed the company of her own friends. She definitely has opinions about who she likes, what she likes and doesn't like.... and she isn't afraid to speak her mind. Thank goodness/oh my goodness! I think the girl is going to give us a run for our money. I also enjoyed this year for what it was. I'm in a much better place now than I was at the last event because this is her reality, we know it and we know how to manage it. Last year we were just at the cusp of having her in a chair and I was having a hard time picturing that this will be our life. I was also very absorbed in watching her move around, almost as if it was for the first time. She had been in her zip-zac a lot, but that night was really a turning point for her in terms of mobility. It was like the light bulb went off when she saw all the other kids with their wheels, and she realized that she can do that too. So this year was a lot more chilled out, Leah was doing her thing, I got to talk to other parents and have some fun of my own.

Speaking of the event, last year was much better attended, almost double what we got this year. There are lots of other families here in town and these events for us are always a great way to connect with each other. It has gotten me thinking about how to better market the SB events locally, how to get each other more connected, and how to get people to come in person. Anyone who has great ideas, please let me know!

We celebrated Easter last weekend with brunch, church, dinner, and Easter egg hunts. Leah had a really fun time getting an Easter basket and filling it with all kids of goodies, especially M&M's. They are her favorite! This weekend has been rainy and thunderstormy. I love it! It means that spring is here and pretty soon I'll be planting flowers and having lots of outside time. Leah absolutely loves being outside (or out-a-side, as she says), and we have had some nice walks outside. She's been liking being in my back-carrier lately, which I also enjoy to get some extra exercise. The challenge we are going to have now is that she wants to be very independent but that doesn't leave her much that she can actually do. She can roll around on our driveway and we have a few toys for her like a basketball hoop. Bubbles are a big hit too, and now we need to find enough things that will keep her entertained outside. I wonder what an obstacle course would look like in our backyard? Might be a nice thing for us to work on over the next couple weekend.

We finally had a family vacation! It was a much needed break from the longest winter ever, and we also just needed some time away. We left on Sunday afternoon and came back Friday morning, the perfect amount of time away and then we were able to come back to a full weekend here in town. Our vacation was in Tampa where we rented a house across the street from the ocean, just south of Clearwater. Fun, fun week. We got to the house on Sunday afternoon, and Leah was obsessed with getting into the water. We had been talking about it for a while, so as soon as we unpacked we hit the beach. Except that we weren't there long. She did not like the ocean. Poor little girl, she was so excited and then the waves were too big, water too cold, and the experience was too much. As it turns out, the condo building next to us was kind enough to let us use their pool, which was much more her style (and mine too... all that sand, yuck!). We swam almost everyday, had activities in the morning and relaxing afternoons.

Some of our highlights include a trip to the Clearwater Marine Aquarium to visit Winter (of "Dolphin Tale" fame), the St. Petersburg Children's Museum, and a dolphin-watching boat ride in Tampa Bay. And we also got to see my best friend Audrey and her husband John for dinner. Leah was a little disappointed that Audrey's baby is still in Audrey's tummy and she couldn't see the baby in person. Soon enough!

I loved seeing Winter the dolphin. Ty and I saw the movie "Dolphin Tale" when I was pregnant with Leah. The movie centers around Winter, a dolphin who loses part of her tail and becomes an amputee. She gets a new prosthetic tail and becomes an inspiration for people with physical disabilities - including veterans and parents of little girls with Spina Bifida. It was a really touching movie and ever since, I have been really touched inspired by her. So seeing her in person was pretty amazing. Leah and Ty had watched the movie and she knows that Winter has to wear a brace on her tail. We got there when it was pretty quiet because there was a sting-ray feeding at another exhibit, so we had some time up by Winter's pool by ourselves. The volunteers were amazing and came over to talk to us (Leah was in her wheelchair), and even let us hold her prosthetic tail. Then we got to watch Winter's exercising time. We saw the trainers put on her tail - that she doesn't wear all the time, only for a little bit of time a day - and Leah talked about how she wears braces too and goes to exercising too. What a really special moment. You can see all about Winter at http://www.seewinter.com/.

We also had a great time going on the dolphin boat ride. Leah actually really liked it and she pointed out all the dolphins we saw. She thought it was fun to see them swim in the water and blow air out of their spouts. She was calling the dolphins, "come here!" and "dolphins, where are you?" Well, I should say she was yelling at them. I hope the other passengers thought it was as funny as we did. The Children's Museum was awesome too. It had lots of exhibits, like a grocery store, fire truck, vet clinic, doctor's office, and climbing wall. There were lots of other kids her age there and she had just as much fun seeing them as she did playing. I think her favorite part of the trip was going to the bird sanctuary up the street from our house. There were lots of birds and she liked seeing them really close. She kept pointing at "this guy" and "that guy." Due to the high bird traffic areas, that was not a wheelchair destination, but most of the others were.

Leah was pretty much an awesome little traveler. She did really well on the plane ride down to Tampa, which is about 2 1/2 hours from here. She played with her toys, ate snacks and had a short nap. Couldn't have asked for anything better. We brought her wheelchair for her to use when we were outside and her zippa for in the house. It's definitely different taking a child on vacation, and especially one who has lots of equipment. We were able to stuff the zippa into a duffel bag, and then Leah used her wheelchair through the airport. I don't know what I expect when we're out in public with her, but gosh we get a lot of stares. Mostly people are really nice and a surprising number of people stop and say hello or comment on her chair. Kids especially stare, which doesn't really bother me at all... they are curious and most kids haven't seen a kid in a chair before. What bothers me more than anything is thinking about how we're going to handle these kinds of trips when she gets older. Right now she's small enough that we can carry her when we can't bring the wheelchair, like on the boat. But what happens when she's 7 or 8 and she wants to go on a boat ride? The boat we were on would be really hard for someone in a chair. Ty and I also like to walk everywhere and we can go 1-2 miles just to get to dinner. Again, that might not be practical for us to when she's old enough that she doesn't want to be in the stroller. She's already getting to the point where she wants out of the stroller if we go into a store because she wants to check everything out, see who's there, what's going on. I want a stroller/wheelchair combo for a little older kid. Engineers out there, please get going on that! We also may have to adjust the type of vacations we go on as she gets older. As she grows up, it becomes more and more apparent that the world is made for 2 feet, not 4 wheels, and that is sometimes a hard reality to face.

Thankfully, we were still able to have an amazing vacation. All in all, beautiful weather, lazy days and a great trip away.

Here are a few pictures of our family fun!