Sunday, March 23, 2014

Is spina bifida good or bad?

This is the question that Allie posed to me one night a few weeks ago as she was changing into her pajamas.  With Anna in earshot, I certainly wan't going to answer "bad" but I wasn't going to respond with "good" either because it certainly isn't.  I told Allie that her question was one that I couldn't really answer.  That it's not black or white and I can't just answer with one or the other.  She wasn't happy with that.

Good or bad?

Allie's curiosity and questioning, I suspect, comes from some recent difficult moments for Anna.  Allie's just trying to figure it all out.  Unfortunately, we're trying to figure it out too.  As parents, we're expected to have the answers to all questions but we don't.  We're learning as we go too.    

With Anna, there's been a bit of realization her spina bifida isn't going to go away.  And it's not really "having spina bifida" that's the issue - it's all the stuff that goes along with it.  It turns out that the kid who often tries to be different, doesn't really want to be that different after all.  She has stated that it's not fair that she's the only one in her class who doesn't get to go to the bathroom.  So what do you think happened on St. Patrick's Day when a classmate told everyone how he saw a leprechaun go into the hall bathroom?  That's right.  At some point during the day, Anna flashed the bathroom signal to her teacher and went to the hall bathroom to check for the leprechaun because why should everyone else be able to do it and not her.

Allie and I did have a discussion last week regarding her question.  I explained to her that although spina bifida isn't good, Anna is doing really well.  Anna is good.  And I hate to say, "It could be so much worse," but it could be.  It could always be.  I do wonder why this happened to Anna though.  Why us?  I'm not one to believe in "everything happens for a reason."  I still struggle with what happened to Abbey.  I suppose I just have to accept that there are no answers.

A few weeks ago, I picked the girls up from school and as we were walking to the parking lot, we ended up intersecting with a line of kids, mostly, if not all, from Anna's class who were waiting to be led out to the buses.  Anna's BFF, who was near the end of the line, was frantically waving to her.  As we approached, most of the kids called out to Anna.  It was just a big jumble of words consisting of hi, bye, triplets, and blast off to space.  That last bit was from the kid at the very end of the line.  I smiled at their innocence and wished for it to remain in some form or other for many years to come.


Sara said...

You should read Andrew Solomon's "Far From the Tree." It's a really interesting read about families facing all kids of special needs and differences. It's a big book, but a quick read. Many families featured in it argue that while they wish their child had a different outcome, having a special need is what makes their child who they are, which is someone they wouldn't wish to change at a all.

Sarah said...

Sara - thank you for the book recommendation. I don't think I've heard of it before.

Just the Tip said...

P is only 4 but had been asking alot of questions too. Tonight she asked about her surgery and if it hurt and did they use a needle, etc. It's definitely not easy to know the right answers. She has alottttt of Dr appointments and acts out because of it. You are right though, it could always be worse.

Ami said...

You're such an amazing mom, Sarah. You are. I think of you often...there are days when I feel so guilty that Colton had to have been born with a cleft lip and palate and the other two didn't. I think about how unfair it is that he has to have surgeries and they don't. Explaining 'Why' to little ones is so difficult. You have always been an inspiration to me. Just so you know. :)

Vesti said...

Mine are younger than yours, but have also been asking a LOT of questions lately. A lot. As a mom, it is so hard! My son, and your Anna (my daughter is also named Anna) will never have an easy life, but you are could always be worse! Also as a mom, it helps to know that someone knows how I feel.

Soulja said...

"Your dear little child is with God; she is looking down on you and loving you; and one day, you will posses her again. This is a great consolation that I have experienced myself, and which I still feel."

Emily B said...

I just thought I should thank you for taking time to write this blog. I found it on a list of recommended bloggers, and I've been hooked ever since.

Lauren M said...

Hi Sarah,
My name is Lauren, I'm 19, and I have a little sister named Erica, who is 15. Erica was diagnosed with autism just months before her fifth birthday. Erica had been a "typical" child until she was four, which was when she started to regress. Nine months later she was a completely different person, she stopped talking, laughing, and making eye contact. I was only around eight at the time, and it's definitely something that is really hard to wrap your head around. Even though Erica is 15 now her mental age is at around only 7 and will probably stay at 7 for the rest of her life. I still struggle with this daily, even after ten years, about whether autism is good or bad. It has definitely opened some different doors for my family and I wouldn't be where I am today without it, and it has taught me so much about just how fragile life can be. I believe it has made me a better person. But I still struggle with what happened to my family daily. Some days when I think about all the things that she will miss out on, all of the things that my family has already missed out on, the pain is almost too crippling to even handle. But there are good things too that are happening that I never thought in a million years would happen for Erica because of her disabilities, she had her first sleep over EVER about a month ago!! She has so many friends (even "typical" friends) who invite her to parties, dances, movies, the mall. It is truly amazing the compassion that some people have for my sister, they look past the label of autism and they just see her as Erica. While I still see the bad everyday, I am starting to see the good too that can come out of it. I don't know why I felt compelled to write this to you today, but I did and I hope that I could help you in some way. I'm sorry for the length
Best wishes,

Ashlee said...

I'm just glad that Anna's teacher let her go to the bathroom and didn't make a big deal out of it!

Maybe you can tell her that if she feels like she needs to wash hands or whatever she can go to the bathroom too so she isn't feeling left out? (hope you don't mind the unsolicited advice!)

It seems like you guys are doing a great job figuring things out as you go!

Elisabeth said...

Sarah - I also wanted to thank you for the time and thoughtfulness you put into this blog. Your attitude about parenting truly inspires me. This isn't anything like the challenges you've faced, but I'm struggling with my infant daughter (also named Anna) who just can't seem to gain enough weight no matter what we do. (Her twin brother is growing well and I'm so so glad, but it's a little hard, too, to see one baby taking off and another standing still.) When we survive another week of awful feedings and are crushed at another weekly weight check, I just want to bury my head in the sand, stop taking her to doctor's appointments, and just hope the problem will go away. But thinking about the patience, persistence and determination you've displayed in the face of so much more serious challenges reminds me to take a deep breath and schedule the next appointment. I especially think about when some doctor told you your Anna would be less trouble to you when she was older, and you said or thought "She's no trouble to me, she's my baby." Sometimes when my Anna is screaming at another bottle, I remember to tell her, you're no trouble to me - you're my baby.

Sarah said...

Wow - I want to thank you all for your kind, thoughtful comments. I wasn't expecting that at all. It does help to hear from other moms and families who are in similar situations. It helps to keep it real. I was teary eyed reading your comments. Thank you for sharing.

Elizabeth - I just want to tell you to hang in there. We had the whole "failure to thrive" thing with Anna. All three of them were terrible eaters - I know that stress. I used to get so frustrated, I would toss the bottle across the room b/c they just wouldn't eat.

Carolina said...

Thank you for sharing Sarah. :) I confess that as the years pass by, I have came to admire you a lot and enjoy reading your posts.

In reference to this particular post, I wonder if we should pass the message to the new generation not all is good or bad, there are things which only make us different, there are characteristics. It is put to us to see them as such characteristics and label them as good or bad, but in essence there are not.

From my life, I have wonder and learn that there is not need to label all as good or bad all the time, because it is relative to a situation, our interpretation, etc. There are things which are just making us different and unique, you can take it bad or good, but that is up to you.

Some books that deal with this “neutrality” and I believe it makes us think of the grandeur of life, more than thinking on things as good or bad, are the mommies.

Try to get some books or I send you something if you wish - I live in Finland . I am sure the books will help to see the world full of uniqueness and not as bad or good. It is an interesting way to see things actually ;)

Hope the comment helps somehow, and all the success, energy and happiness for the whole family.

Annalise Kendrick said...

Disabilities are difficult. But the fact is everyone has them. My younger brother has several mental disabilities and as a result struggles both socially and with learning. His disability is a medical one; it's in textbooks and is included on his IEP. Anna's is clearly difficult, it comes with her feeling different an struggling with things others do not. However Allie and Emily have disabilities too, they just don't require doctors appointments. When I was younger, I was EXTREMELY shy, more so than Emily. When I finally began to talk at school in 4th grade, everyone thought I was new. That along with my ADD were my disabilities. You could argue that my severe allergy to peanuts was a disability; I certainly spent a lot of time at doctors offices and in the hospital. But I don't know who I'd be without it. I guess my point is that although you may ask, "Why me?" It's just a part of life. As they grow up they'll come to find more things they struggle with but also more things they love. All these things come together to make us who we are. As their mom, you obviously know them better than almost anyone else and maybe you could explain to Allie that Spina Bifida is just means that Anna has more trouble with physical activities than she or Emily do just like Allie has a harder time with reading than Emily does. But they both have an easier time with other things than their sisters do. Disabilities are just the things we struggle with. But we have strengths in other areas to make up for it an sometimes even because of it. So Spina Bifida isn't bad, it's just a difficult obstacle to overcome.

Angie said...

I know I'm not the only one that found this blog after their own child's spina bifida diagnosis. 18 weeks pregnant with twins and I felt shattered. The babies we wanted for so long were possibly slipping away. While I was trying to figure out what the heck spina bifida was and what it meant for my baby's life, your blog was recommended to me. Although Anna has some challenges, she gave me so much hope for my daughter's future. So thank you for your frank discussions and for tagging some posts so those of us starting this path can find some real world examples of what a happy "normal" life a girl with spina bifida can have.