Friday, December 11, 2009

Anna, spina bifida and another holiday party

This past weekend we attended a holiday party hosted by the Spina Bifida Association, an organization we would like to become more involved with. Anna's spina bifida has been with us for just over three years now. On December 5, 2006, the girls were discovered during a routine ultrasound. Spina bifida is so much a part of our household. It is second nature to us.

The girls have no idea what the words 'spina bifida' mean. A lot of adults do not know what those words mean either. The girls know that Anna has a boo boo on her back. They know that Dr. B fixed Anna's back after she was born. When I ask them to say spina bifida, they can't pronounce it. 'China bispada' is what comes out of Allie's mouth.

At the holiday party, there were kids in wheelchairs. There were kids using walkers. There were kids who walked a little different. My girls did not notice any of this. I wish it could be like this forever. That kids would never notice any physical differences amongst their peers.

I don't want to say that we are lucky that Anna can walk by herself. I don't want to say it that way because it may imply that those with children who can't walk by themselves are unlucky. We are lucky that Anna is Anna. I am on the internet. I have read some extremely tragic and heart breaking stories over the past few years. We are lucky that we have Anna.

Anna can walk on her own but she does not have the same physical strength as her sisters. For example, I notice that it is more difficult for her to walk up stairs. Intellectually speaking, she grades on mark or above for her age. She knows her ABCs, she can count, she knows shapes, she knows emotions, she holds conversations with her sisters.

As with almost all kids with spina bifida, we are dealing with bladder and bowel issues. The connections from her spine to those functions do not work properly. We currently catheterize her approximately six times a day to ensure that her bladder is empty and to reduce the risk of a bladder or kidney infection. I remember the emotions swimming around in my mind when we were first told that we were definitely going to have to do this. I was afraid, concerned, upset. The whole process now is just like changing a diaper. All I need to do is find a spot for Anna to lie down and I can cath her anywhere. And I have!

Our main concern with Anna's condition has always been her shunt. I will never forget the neurosurgeon telling us that shunts are still rudimentary and prone to infections and malfunctions. When she was an infant, there were certain warning signs we needed to be aware of which would indicate that something was not right with the shunt. This was one of the main reasons why we would never have felt comfortable placing Anna in a daycare situation with multiple strangers. Those who knew her temperament intimately would be able to see that a problem was brewing.

Because Anna is older and can communicate, I feel more comfortable that we would be aware of a shunt problem fairly quickly but it will always be a concern. When I was pregnant with the girls, Rich, Grammy and I met with the neurosurgeon regarding Anna's situation and the surgeries that would be required immediately following her birth. As we were sitting in the waiting area, a mother ushered her little girl out to that area and told her to wait while she had a conversation with the doctor. The little girl cried and cried. She kept saying, "I don't want to have another operation. Do they need to fix the shunt? I don't want to have another operation." She was young, less than ten years old. It was heartbreaking to watch. {It is still heartbreaking as I type this out.} All I could think was that this might be us in eight years.

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The girls had fun (and were extremely well behaved) at the holiday party. Santa arrived and to our surprise had gifts for all the kids there. When it was announced that Santa was in the lobby, Rich wandered out there with Allie and Em while I stayed behind to change Anna's diaper. When we met up in the lobby, Em was holding a new baby doll in a box. I was a bit confused. Rich told me that Santa had called out her name. I kept looking around at all the other kids to see if there was a little girl with an Emily name tag crying because the wrong Emily had her doll. Nope.

There was a moment of ohmywhatarewegoingtodo when the pile of presents was just about gone and Allie and Anna had not received one. Allie kept saying, "I want a present too." Santa remembered everyone and the girls each received a baby doll, which was extremely adorable. {Please note that the girls were extremely terrified of Santa and wouldn't go within five feet of him.}

We met some really nice families and received some great advice from parents with older kids. And you know I can't end this post without commenting on someone else's parenting skills (or lack of.) This little boy was wandering around and took a liking to my girls, most likely because they were the same size as he was. He was a bit bigger than them but based upon his vocabulary (or lack of) he was definitely younger. He kept trying to take their dolls and Allie's Elmo. At this point, Rich and I were packing up and trying to head out so we were taking turns watching all three girls. Not only did I have to make sure they didn't run off out of my sight, I had to make sure this kid didn't take off with their babies. Eeeeeeiiiiiissssh.


Anonymous said...

Hi Sarah - This is Lillian's mom from the old BBC board. I am a little bummed we didn't make it to the party (had my niece's birthday in RI). It would have been nice to meet your girls in person!
Glad to hear Anna is doing so well - we've finally gotten her on a "program" that is working and might try going diaperless in the new year. Very exciting for her (and us!).
Have a great holiday season.

megan said...

Wonderful post, it's so amazing to learn more about sweet Anna and how spectacular she truly is. How sweet that Santa had gifts for everyone, I would have been a crying mess, esp. with Allie and Anna not getting one near the same time Em did. Adorable picture too. I love the gingerbread outfits!

Wendy said...

Darnit!! Megan is my sister! This is Wendy :P

Sarah said...

Hi Amy - I was thinking about you at the party. I'm glad to hear that Lillian is doing well! I hope we can meet up at another event.

Thanks, Wendy :)