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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Things we are uncomfortable with

Before I even dive into this post I want to say Maria knows that I'm writing this. She gave her approval and has nothing to be ashamed about. Yes, this is personal, but it is also to help others adopting children with disorders such as Spina Bifida understand some of the challenges.

Ok....so, there are certain topics most people are uncomfortable with. Which is rather silly, because EVERYONE pees and poops. If you are one of these people who is uncomfortable with this topic, please do us both a favor and stop reading now.

Spina Bifida is a neurological disorder....meaning that there are issues with the nerves that go from the spine into Maria's legs. Many times nerves get tethered or look like a big knot. Most people with SB have continence issues....this means that they usually do not have control or have limited control over when they urinate or defecate. I knew this was a possibility prior to meeting Maria and high hopes that one day she would be able to have control over her bodily functions. The lack of continence was confirmed when I visited Maria in Bulgaria.

So, wanting to be informed I started talking with other parents who have children with SB....I needed to know what did they do to help their child gain control in this area...what supplies did they use....what issues were there. I also talked with Maria's doctors here about what they recommended. I decided that I needed to wait until Maria had a good handle on English and understood so that she too could have a say in what would happen to her body.

The first step was her urologist. He recommend the use of catheters with a medication to assist the bladder in expanding. We have started this and it has been very successful. Other SB friends helped connect us with the right products that are appropriate for a preteen/teen girl. Some families choose not to go this route for their own personal reasons. Maria and I made the choice because we knew it meant that she would be healthier in the long run.

The next step was making a choice regarding the bowels. A little over a week ago we met on a surgical consult about a procedure for this. We were both familiar with this since we know a young adult with SB that has had it. Towards the end of July Maria will go in for this surgery....basically she will have a port (looking somewhat like a G-tube, just lower) on her lower abdomen. Once this is place and she is healed, she will be able to inject a saline solution into it each night and flush out her bowel...which will take around an hour. Ok, I know this sounds rather gross....embarrassing for a child her age....but it isn't. For the first time she will have complete control over this area and be able to gain even more independence. Having this control is a big deal! It will be a huge blessing. Something she is excited for!

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1 year Gotcha Day

A year ago yesterday Maria and I celebrated our Gotcha Day....yes, we call it that thanks to Disney's show Jessie. Maria wanted to spend the day with family. We did some crafts and she got to make ice cream with grandma. We decided to try making some Bulgarian themed jewelry. We also tie dyed t-shirts like the Bulgarian flag. We ended up decorating them with fabric markers and pens later.

Happy Gotch Day Maria! I love you!!

 

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Reconnecting

Last week we finally made the long trip to Ohio to see Maria's friend from the doma and her family. This was such and amazing time for both Maria and myself! Maria hadn't seen Alexis for over 2 1/2 years. She has asked since coming home to get to see Alexis and spend time with her.

We got there early Wednesday morning and were met by a welcoming committee of kids and turkeys. Maria was able to spend time playing, swimming and coloring with Alexis, Maren, Alayna, Lily, Joshua and the little boys. The older boys were at a day camp so we didn't get to spend much time with them.

For me it was a great time to reconnect with Valerie. We could talk about things that impact our kids with physical differbilities..one of the words Val uses, because although our kids have physical challenges, they still can do things, just in different ways. It is great talking with other parents that truly understand challenges Maria faces on a daily basis.

Showing off our camo leg braces

I also got to spend some time with a college friend. It always amazes me how some friendships just fall right into place no matter how long between visits.

After too much traveling we finally made it home and are trying to get some rest before Maria's upcoming surgeries.

 

 

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Virginia

We spent the first week of June at the beautiful Massenutten Resort in Virginia. It was so beautiful there! Maria and I went with one of my college friends and her four kids....yes, you read that right two moms and 5 kids traveling from the Chicago area to Virginia. There were some meltdowns along the way, but it really was fun.

 

We left for Virginia at 4 am Saturday morning...yup we got an early start to beat any bad Chicago traffic. We ended up finagling getting to the resort around 7pm.

Sunday we ended up taking the kids to the ropes course and zip line. Maria did great. We then followed it up with some gem mining.

 

 

Monday brought on the time share tour...took the whole morning. We should have brought the kids with us :). After that we ate and went swimming. Ending the day by grilling hotdogs and burgers....and s'mores of course. The kids played on a playground that was nearby. After this we took the kids up to the ridge to show then the amazing view.

 

 

Tuesday I woke up not feeling the best. We took the kids to the arcade to play and went to the pool again. Everyone went to bed early so we could go to Washington DC in the morning......oh Washington DC, aka total epic failure. We drove to me of the Metra stations and went to Union Station. What we didn't know was that they are in the process of updating their handicap accessibility on the subway (we didn't learn this till MUCH later). We lost each other at one point, but found each other again. We went to the Postal Museum which was across from Union Station. The rest of the day was spent attempting to get to the mall area only to meet one challenge after another. We ended up getting some help from a woman who actually helps people with disabilities learn to navigate the subway system. We learned about the subway issues from her and that some of the monuments were being repaired from an earthquake. By the time we FINALLY got to the right stop, the kids were begging to go back to the condo. Tired and feeling defeated, we went back to the condo. On a happy note, I did learn that I can get Maria up an escalator in her wheelchair, she wasn't amused with this discovery at all.

 

Thursday we were all tired and it was raining. Took a quick trip to Wal-mart and spent a quiet afternoon at the condo. Friday we took the kids to the water park. Maria loved the lazy river! We packed in the afternoon and the kids had fun with some of the glow sticks I brought.

 

 

We left bright and early Saturday morning. We got to Hershey around 10:30. It was a lot of fun. We made our own chocolate bars, saw a 4D movie and went on the free tour. After this we headed for Chicago. We finally got there at 1am....very tired.

 

 

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