Yesterday

Yesterday we were on our way to the annual SBAI (Spina Bifida Association of Iowa) picnic. After picking up some cookies to take with us, Maria started her normal routine of asking me questions (not that she talks much to anyone else). The conversation went like this:

Maria: "Mom, wishes come true?"

Me: "Sometimes."

Maria: "Wishes come true in movies and tv?"

Me: "Sometimes. Why?"

Maria: "I use to wish for a mom and dad. Then I got you, mom."

Me: "I wished and prayed for an amazing daughter and got you."

It was a pretty amazing moment for me....I wanted to cry tears of joy for Maria sharing such a special wish with me.

After this we headed to Raccoon River Park in the Des Moines area for the picnic. The picnic has grown a lot since last year. Around 160 people attended. There were individuals with SB of all ages 50+ to babies. The park is awesome...it has a great shelter near the bathrooms (which are easily accessible for those who use wheelchairs) there is a nice open grassy area next to the shelter....there is an easy transition from the concrete to the grass and the grassy area is flat and is very even. Maria said it was very easy to walk on compared to another recent park we were in.

Maria had fun with a spunky little 6 year old who thought it would be fun to play freeze tag....her dad and I looked at each other and both of us were wondering how that was going to work. They ended up having fun though. She even decided she needed to eat lunch with us. After lunch and a short parent and adults with SB meeting there was a group picture of everyone with SB there...it is quite the group. After the picture Maria was talking with an older woman who offered to show Maria her adaptive car hand controls. While Maria did this I got to chat with lots of different moms. Everyone is always shocked to hear that Maria's SB is at the T12 level and walking. A spinal injury or SB at the T12 level should mean that the person has no feeling below their belly button. Most likely Maria's SB is not complete on both sides of her body...which explains why she can walk.

After Maria got back from looking at the car she was able to play some games. I got to chat with the lady who showed her the car. She was so sweet and said that she use to walk and that they took breaks from walking when Maria needed to. One of the main issues with people with SB walking is that their legs get tired easily. When their legs are tired they are more likely to fall. Falling for them is also different...at Maria's age fall can increase the chances of breaking a bone, blowing out a knee joint or hip displacement....none of which we want for Maria. She usually does really well with walking and not falling, but wet and uneven surfaces increase the likelihood that this will happen. She has also been known to fall if she is bumped into...this happened a couple times at school this year. Maria was having so much fun and giggling so hard I was sure she was going to fall down as a result...thankfully she didn't.

It was a great day and time for both of us. I know I really needed to be around people who understand the unique challenges of parenting a child with SB. I also need to figure out if we are going to have a Walk n' Roll for Spina Bifida team this year. The goal is to raise money to help families with with Spina Bifida needs, provide education and provide opportunities for people with SB (such as camp).

 

 

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