Sunday, November 11, 2012

She has spina bifida

I brought Anna to a classmate's birthday party yesterday.  It was held at a place with bouncy structures and I should note that, in general, I hate bouncy structures for I fear my kids will be trampled.  For the past three years, we have held the girls' birthday party at a place with bouncy structures but we had a private room for party guests only and two employees who ensured that the safety rules were followed.

The party yesterday was held at a fairly newish place that I wasn't familiar with.  As I was looking for driving directions online, I discovered that it is open to the public; attending a party simply means that we will be given free admission and there will be a private room for serving the cake.  Well, it turns out that the place is tiny and there are only three bouncy structures.  Two of them had walls too tall and too difficult for Anna to climb without assistance so I was the only parent stumbling into the obstacle course to boost her kid over the wall.  The other structure was intended to be a twister game but all the kids, including Anna, were jumping on it.  The problem was that, aside from an 18 inch tall border, there were no walls so technically, a kid could bounce over the border, fall three/four feet and land on the concrete floor.  There were no rules posted and no one was enforcing anything.  Anna almost fell out of that twister game.  Another mom and I both gasped and lunged for her at the same time.  We were too far away and wouldn't have been able to break her fall.  After that, I told her that she had to stay in the middle.

I didn't aspire to be an overprotective, helicopter parent but if that's what others view me as, so be it.  I'm responsible for my own children and if I feel that a situation is dangerous, I'm going to step in.  Of course, what I view as dangerous may not seem dangerous to others.  What is dangerous for Anna may not be dangerous for other kids.

So not only does Anna have to deal with differences in physical capabilities, there's the whole cathing/pull-ups issue.  During the party, I had to bring her into the bathroom four times to clean her up as best I could.  With about 40 minutes remaining (it was a 2 hour party) of party bounce time, Anna climbed out of the bounce house (this one had full netted walls) and told me that her pants were wet.  This would mean that she leaked and her pull-up didn't catch it.  Totally possible.  I was feeling her pants, which didn't appear wet at all, when I boy walked up to us and asked, "Hey, did she pee her pants?"

"No, she didn't pee her pants," I replied and we headed for the bathroom.  Again.  Sometimes I'm so sad and angry that Anna has to deal with this.  The day before, she missed 10 minutes of their gymnastics class because I had to bring her out to the van twice to clean her up and change her pull-up.  She's old enough to know that this doesn't happen to anyone else in gymnastics or in her class.

By that point in the party, I needed to change her pull-up but didn't have any (long story) and frankly, she was kind of bored.  How long can a kid stay entertained by jumping in the same small area while trying to avoid kids flying around?  She had been in the real bounce house, which had a wall with a slide at the top.  Well, most of the kids were running up the slide and jumping (4 feet or so down) into the bounce house.  Yeah, real safe.  It was like a mosh pit for little kids.

Anna mostly hung out with R who is also in her gymnastics class.  At one point, another little girl had run over and said, "Come on, Anna," and off they all went into the obstacle course.  Anna made it to the wall and was desperately attempting to climb it with little success.  Some of her friends at the top were offering to grab her hands to help her up but she wasn't allowing them to help her.  Unbeknownst to Anna, I had climbed into the course to boost her up over the wall.  When I put my hands on her, she yelled out, "I don't need help.  I don't need help."  Then she turned and saw that it was me.

I have told several of the moms that I chat with how Anna has spina bifida.  I don't really have an exact reason why but I think it's better to educate than to leave others guessing or speculating as to why Anna is the way that she is.  Why is she still wearing a pull-up?  Why can't she climb up a wall every other 5 year old can climb?  Why does she have to go to the nurse's office at school?      

Anna was a bit upset leaving the party a little early.  I think she would have been a bit bummed regardless of when we left.  Before the last bounce house bit, she had been resting with me in a chair so it's not like I was interrupting time with her friends.  Another party was starting at that time so a slew of new, bigger kids had invaded the place.  We were also close to a bathroom issue and I really wanted to be home before we hit code red.  (We made it home just in time too.)

A few weeks ago, Allie asked, "Why did God make Anna with spina bifida?"

"She's special so she can do great things."  I didn't know how else to answer.  God questions are always difficult for me because I really don't know but in this case, I need to believe in something.


Ami said...

I think that was a great answer. :) Anna is so lucky to have you as her mama!

Summers Family said...

Sorry friend. Birthday parties are hard. We just went to Annabelle's first dance party. It was very difficult for me but Annabelle had a blast. She walked in (with her walker) and danced the whole time. I'm glad she's still little and doesn't realize the differences yet.

Good for you for keeping her safe. I too am not a huge fan of bouncy places for lots of reasons.

My boys ask every once in a while why God gave Annabelle Spina Bifida. I never really know what to say either, I usually tell them it's because she's so special and will get to change people's heart. She is definitely doing that!

Take care and I hope everyone sleeps well and in their own beds tonight.

Just the Tip said...

The last sentence has released the flood gates.

P is starting to know that she is different and frankly, it sucks.

She doesn't ask to wear panties over her diapers/pull ups anymore.

Although she did tell H that she needed new panties at walmart the other day. She has atleast 15 pair, all brand new.

Sarah, I thought you guys were doing the ACE, when it's called "MACE" does that mean it includes the mitrofanoff?

I think I left a message on your H's blog a while back but you may want to start looking for a pediatric health psychologist for Anna to talk too, at this age, it's just play therapy and books and stuff, "Brave Bart" was one they did with P.

I just feel like I need to give her the right tools to deal with this from the beginning since we can't even find a private preschool here who would take her, she doesn't really have any longer of 'fitting in.'

I hope Anna still had a good time regardless of the mishaps.

I know it's hard on you though, trust me, I know.

Just Me said...

She is special and was made her way for a reason. Whether disability, lisp, eye color, you-name-it, all kiddos are made how they should, they will all have challenges, you are an AMAZING MOM! Don't ever forget that!

Lily said...

Sarah, I want to thank you for this blog. I (shamefully admit) used to roll my eyes at older kids in strollers, but ever since I started reading, I realized how wrong it was of me to judge.
Thank you.

Chantel said...

I think it is better to educate as well. It will stop people in their tracks quicker the next time they judge.

Leslie said...

I'm glad you tell parents - I do the same thing with my daughter's Apraxia because I know they have to be wondering why she speaks differently than other children. And, I've never had anything but a positive reaction and questions when I've done this.

Last year after a bowling birthday party, my daughter started crying on the way home and said, "I'm tired of being different. I want to be like everyone else." I don't know what triggered this - maybe she was tired? She wanted to know why she had Apraxia? I told her that everyone has a cross to bear, and that some people's crosses are obvious ones that we can see or hear, like her speech, or like my son's friend who has to wear a back brace. Other people have some that we don't see, but everyone has something.

She talks about this from time to time, and will remind me that "everyone has something," and she'll ask what my cross is, or what Daddy's cross is. I know she's still processing it, but I think it makes her feel better to know she's not in it alone.

I do think that these childen will do something special because they beoome stronger.

agirlandherhorses said...

Thank you so much for sharing your story so openly. You bless your girls beyond expression every day with your love, and the rest of us with your heartfelt words. I admire your courage and your honesty, and I sincerely hope that I can be a mom half as good as you when my little one comes.

Anonymous said...

That was such a wonderful answer! Anna will do great things. And she will do them with the determination and grace that she has already demonstrated she possesses. You are the perfect mom for those girls, Sarah. Thank you for posting this.

Anonymous said...

That was such a wonderful answer! Anna will do great things. And she will do them with the determination and grace that she has already demonstrated she possesses. You are the perfect mom for those girls, Sarah. Thank you for posting this.

Angela Bailey said...

Moses had a terrible stutter and public speaking phobia...yet God used him to free the Israelites.

David was the youngest, smallest, and a shepherd boy who played a harp...yet God used him to take down a giant and lead HIS people.

Sarah was barren and old...yet God used her to have the first born of Israel.

Esther was a normal girl...yet God used her to win the heart of the king, which saved her people from being wiped out.

Rahab was a prostitute, yet she is mentioned in the lineage of Jesus (the book of Matthew) which is severely uncommon for a woman to be listed in a lineage. Yet, God used her to save his people.

Paul was the worst kind of sinner and stoned so many Christians, yet when he met Jesus, he became an apostle and wrote most of the New Testament.

God uses the "non-normal" people more often than not to accomplish his will. He has a plan for Anna. Don't lose faith.


Sarah said...

Thank you for sharing stories and leaving comments.

We haven't looked into any psychology services b/c she has been really upbeat - this weekend I saw a shift in her comments. She sees so many doctors already, we haven't wanted to add another unless/until she really needs it. She did have fun - it was harder on me, than her. Isn't it always?

As for MACE - we switched GI doctors b/c the one we had didn't understand SB at all. He's the one who said that she was holding in poop - oh how I laugh at that. I would LOVE it if that was our problem. We haven't pushed for that procedure b/c the recovery is difficult and we want her to be older and part of the decision.

Anonymous said...

I haven't read your blog in years (I'm a mom of twins from the bump), but I really enjoy it.

I also find myself telling people that my daughter, Abby, is autistic at classes or neighborhood activities. I never used to, but as she gets older (she's 4 1/2), her behavior is becoming more and more different from other 'typical' kids her age (I hate that official phrase, implying my daughter is atypical). I don't know if it will ever get easier.

I also don't know why God makes the decisions he makes. I have never been very religious (like, at all), but we have found a church we like and have been going for 2 months. I used to think we never had time or that I wouldn't want the girls to be in sunday school away from us on the weekends (we both work full-time as well), but they LOVE it. And it gives my husband and I a quiet hour at mass just to sit and think. Every week, I pray for patience with my kids. :)

I can also really relate with your stories about being a double working parent household. My mom also watches our girls when they are not in school, but it plain old sucks a lot of the time. It's nice to hear someone talk honestly about it.

Best to you and your family,
Aimee Barbagallo, Mommy to Abigail & Liliana

PS - Have you ever thought about horse therapy for Anna? My daughters do horse back riding for sensory processing issues associated with autism and it has been amazing. I know that children with spina bifida have had many successes with it as well.

Here's where we go, to give you a sense of what to look for if you're not familiar with them.