Normal treatment, or special treatment?

The thing I've wondered about the past week, was how should I have treated my little girl? In particular, with regards to her legs.

A few days ago, I was waiting for my son to come from cricket practice. I saw 2 moms coming out of the school with their little girls. Gorgeous little girls of about ages 6-8. They were wearing tutu's. The whole little ballet costumes, in fact. The two families looked so happy.

Somehow, it hit me. The fact that my little girl couldn't do that. I did. I took ballet for a while, and I absolutely adored it. I would've continued, but my teacher went away. We lived in a small town, and there was no one to continue our lessons with. The teacher urged my mom to take me to the next-door town, because accordingly to her, I was good. It warmed my heart, but I told my mom it's okay. We don't have to continue with lessons. It broke my heart, which I never told my mom. But I was old enough (at about age 8...hahaha) to know that we weren't rich. And that it would cost my parents allot of money to not only pay for my lessons (with the previous teacher it was free, but in the neighbouring town it wouldn't be), but also the petrol money. I knew it wasn't worth it, because even if I was very good, I wasn't exceptional. It wasn't as if this would've been my career one day.

So when I had a little girl, I was excited about the idea of her doing ballet one day. Not super excited like it's a burning desire in me. Just excited because I loved it so much, and hoped that she too would find joy in it. Soon after starting grade R, I asked Boeboe if she'd like to start ballet. She agreed, very excitedly. We made sure with her orthopead surgeon that it was safe for her feet/legs, and he said yes, it won't cause any harm. It may even be beneficial.

Sadly, Boeboe didn't enjoy the ballet. In the beginning, she couldn't tell me why not. She just continued to be negative on ballet days. Seeing it as a chore, not a joy. I used to be excited about going to my classes. She wasn't. She was strangely not very talkative about it at all.

After some time, she started complaining about it. Her legs hurt. She couldn't explain to me why and what precisely. Just that it hurt. A few months later, she was able to vocalise it better. Telling me what they do, when it hurts. Usually, it was when they were stretching, or twisting their legs or feet.

Numerous times I'd ask my husband if we should allow her to stop. Every time though, we thought lets just give her some more time. Let her try and find the joy in it. Let her learn that one should not give up, just because exercise can be painful. Let her learn that if you start something beginning of the year, you see it through until end of the year.

So. We treated her like a normal little girl. We treated her like we would've treated any girl of ours. Not like a disabled kid. Partly of course due to the fact that we didn't know yet that she was disabled. Sometimes, I did think...what if something is wrong with her legs? Ballet isn't suppose to hurt at this age? But then I'd shrug it off again.

End of that year though, I gave her the choice if she wants to continue or not, and she immediately said no thank you. She chose to do a music/drama type of class, which she enjoyed thoroughly.

So I sat in my car a few days ago...watching those little girls walk happily out of the ballet lesson in their little costumes, and I felt like crying for my little girl. Because of the pain I put her through. She tried to tell me. Yes, it couldn't have been TOO bad, because it's not as if she was crying afterwards (or during) lessons. Or begging me to stop. She would just matter of fact telling me she doesn't like it much, because it hurts her legs. How was I to know?

Now I'm wondering. If we have known...almost 3 years ago. If we had known that Boeboe has a nerve condition involving her legs. Would we have been more sympathetic? I'd like to say yes. Would we have let her stop the ballet classes? I'd have to say Yes, most definitely.

What would Boeboe have learned from that? That her parents are sympathetic and supportive? Maybe. That you can stop something when it hurts and you don't like it? Yes. That you can use a disability to not do something that causes pain? Yes. That you don't have to finish something when you have a good, valid, solid excuse? Yes.

What did she learn? That her parents were unsympathetic and not supportive? Yes. That you have to stick through something despite it being painful? Yes. That you have to bear and grin? Yes. That you have to be strong? Yes. I can go on and on. Is this what I WANTED her to learn? No. A big, fat, solid NO.

People tend to say...don't wrap your disabled child in cotton wool. I don't. My daughter doesn't even know that she had a "disability". Or have. Whatever way you want to look at it. She doesn't know there's something different between her and her brothers. Now that it is "fixed" in her eyes, she doesn't know there's any more difference between her and her peers. So I certainly do NOT wrap her in cotton wool. I do not safeguard her. I do not protect her from unnecessary hurt because of her condition. Maybe because we didn't know about this condition from birth? Maybe because by the time we knew for a fact WHAT is wrong with her, she was already operated for it. I could never mollycoddle her because of my suspicions. Until we had a diagnosis, I treated her like a normal little girl. Then, after her diagnosis, she's been operated on already and mostly "fixed". So no need to treat her different than any normal little girl.

But then I think of the ballet. And I feel sad for her. Sad that she had to do something physically painful and uncomfortable, because we didn't know about her condition. How unfair towards her. Didn't she deserve to be treated sympathetic? And supportive?

So what's better? To treat a disabled child "normal" so that she doesn't feel disabled? Or to treat a normal child "normal" and then finds out she isn't so "normal"? Which hurts the child more? Isn't it the right of a disabled person, to be only pushed to her limits, and not beyond? Isn't it fair for a disabled person to be treated inside their limits? I once complained to a neurologist that Boeboe can't walk very far without getting very tired. He answered: All children gets tired when walking far.

True. But a able-bodied child gets tired differently than a disabled child. The latter's tiredness goes much much deeper. It causes aches and pains and a sense of failure. Is that fair? Should you push your disabled child until they feel that sense of failure? And then wash your hands in innocence and say "I didn't want her to feel disabled"?

OK, I'm rambling now. Like you see, I'm struggling with this. How far does support, sympathy, empathy and acceptance go? And how far do you push a little child? To be normal.

If I could do it all over again. This time WITH the knowledge of my daughter's condition. WITH the knowledge that her legs have been touched by her condition. I would've done it differently. I would've been more sympathetic. I would've looked for a trolley in the mall earlier. I would not have gotten cross with her when she complained she's tired. I would not have walked so fast. I would not have told her "everyone's legs tire" when she complained. I would not have urged her to take ballet. I would not have told her she had to finish the year's ballet. That it's okay and acceptable that it makes your legs ache. I would've given her more choices. Less forcing. More support. Less arguing. More sympathy. Less denial of her feelings. Would this have changed her into a wimp? Into a worthless person who do not push herself? No. It would've validate herself. That what she was feeling, the pain, was real. It would've given her confidence in the fact that her parents believed her. I think the lessons she should've learned, was more valuable, than the lessons she did learn with our unsympathetic attitudes. So I'm sorry. Sorry that I didn't know. Sorry that I acted like everything was normal. Sorry that I didn't believe my daughter. Sorry that I didn't support her.

It's in the feet...or is it?

I took the photo of Boeboe's foot yesterday. I have no idea if that's just how her feet are supposed to look, or if it is influenced by the occult tethered cord. But here goes:

Boeboe's feet a few days after birth. Clearly flat as can be.

Boeboe's feet age 2. Still flat, though there's the beginning of an arch on her left foot.

Boeboe's feet age 4 (with Mr N here). Clearly arched by now. Her left toes are curled, though this isn't a permanent thing. She can curl it easily, but it doesn't stay like that. Oh, and don't ask me, I can't remember why she has the little plaster on her cheek! :-)



Boeboe's feet as it looks today (age 7). The left foot (the one on the right)'s arch is especially pronounced. It's also the left foot that mostly "drop" down, causing her to fall.

So is this normal? /hmm  I don't know. The doctors still seem to think so. To a degree at least. Maybe that's just how it is. It looks just very different from Mr N's feet. His have small arches, compared to hers. His are almost flatfooted.

So long, 2010...

2010. Over and done with. Where did it go?

I'm not particularly sad that this year is over with. But when I see how fast my baby is growing up, then I want to grab hold of time and force it to a standstill. He can't be turning 3 soon, can he?!

New Year also starts the count-down to the new school year. Something I loath, completely. But let's not dwell on that, there is still 11 days of holiday left!

So what did 2010 teach me? That I must, and can be patient with my daughter. With helping her, with her tantrums, with her differences. That was the major lessons I (had to) learn this year. It still doesn't come easy. When you're called for the 3rd time to the bathroom in 1 hour, you feel like screaming and stomping your foot like a 2-year old. Or when you deal with the 4th tantrum of the day, you feel like grabbing hold of the nearest flowerpot and throw it against the proverbial fireplace. Or when she for the umpteenth time forgot what she was busy telling you... you get my drift! So I needed those lessons. I still need them, to cope. Every day.

Though, it's been a marvellous 4 days without bathrooms and accidents and medications and tantrums. I missed my children something terrible. But in a way, it was good for me. I believe it was good for them as well. Mr N just wanted to come home. Part of it was his love for his home, and missing us, but a big part was missing the Wii, the computer and the satellite dish. I think it was good for this technology-crazed boy of mine to be without for a bit.

So what else did I learn in 2010? That I have amazing kids...:-) :-) :-)

No really, I do!

Mr N. Ah, my clever little boy. He really came into his own this year. He got certificates for academic achievement. Not only in the maths we knew he was good in. But also in Afrikaans. Wow wow wow. I was speechless and so very proud. But most of all...I was proud when he was chosen as one of the 4 best readers (out of 29) for his class. My boy...a good reader?! I was in tears! There's no greater gift to a child (okay, maybe some!) than teaching them a love for reading. I love words. I love books. I love stories. I dream stories, I live stories. I would die without words in my life. The worst thing of being diagnosed with glaucoma, is the fear of someday not being able to see words anymore. I can live without seeing a tv. But don't take my written words away from me.

I digress. Mr N...ah yes, he did so well in grade 3. But not only academically. He was on the 1st cricket team for his grade. He absolutely loved and adored the game and gave it his all and everything. He also grew emotionally this year. Getting a maturity and understanding that surprised me. I love getting to see glimpses of the man he is going to be one day. And it makes me proud! Also...health wise. He did so well. Nearly never had any illnesses, apart from gastro once and scarlet fever. And his clean EEG (no seizures)!!! That was THE best news. If it's clean again in 9 months time, he may be taken off the lamitrigine (epilepsy medication). That would be a wonderful, wonderful day. It's been 4 years now. Of giving him the meds every day. There were difficult times, where he refused to drink it. Or spit it out. Or hide it in his cereal or the dustbin! And the side effects. Horrible, horrible side effects. It would be just lovely, to throw it away and have our son back...unmedicated!

Next is our daughter. I can just say wow. How, after everything I've done to her, did she turn out to be this kind, loving, sweet, happy and amazingly strong little girl? What did I do, to deserve this beautiful little girl? She had to cope with more this year, than some adults even have to cope. And she did it beautifully. She went for test after test, doctor's visit after doctor's visit, without complaining. Without digging her heels in (accept on the rare occasion, LOL). She tried drug after drug, experimental treatments and never lost hope that THIS time it'll work. Her faith was and is still unwavering. That God WILL help her. At some point, when we've prayed long and hard enough, He WILL listen and answer all her prayers. She prayed for a rainbow around May this year. Just after the rainy season in this part of the country. So no luck. For months and months she prayed to see a rainbow. She never stopped praying. Never forgot about it. And then, one day around October. It rained and there was a beautiful, big rainbow. She was ecstatic. I, was humbled. She has given me hope this year. Hope for her. Hope for us. Hope for the future. Because she believes. And that's all you need.

She also worked hard at school. Between everything, she still had to learn how to read, how to spell, how to write, how to count, how to subtract, how to multiply and how to divide. And she did it. She did it all. I'm so very proud of her. For sticking to everything and taking it on, and overcoming the obstacles in her path. And to stay happy and kind and thoughtful and loving and a little chatterbox through it all. Never letting depression or heartache or sadness overwhelm her. Never letting life get her down. What an amazing little girl I've got!

And lastly (but definitely never the least!), our little Monkeyman. What a great little personality this guy has. He's kind and cute and loyal. He's also extremely perceptive, sure of himself and trustworthy. He's contend and peaceful and calm. And he is such a little boy. So typical boy. Give him a car in the one hand and a ball in the other, and he's happy as can be for hours on end. He entertains himself. He rears himself! He is so easy-going. Such a splendid little boy to have. He gives us so much pleasure, so much joy. We can't imagine life without him. It would've been seriously lacking! We can just stand in awe of how fast he is developing. He can do things at age 2 that I never thought is even possible (for a kid of mine that is!). And he do it all by himself. I do not sit and teach him anything. He just picks it up. From tv, from conversations around him, from following his siblings, from copying his dad. It's just absolutely astounding. The way he plays kinect. And Wii. Especially Wii. I don't even need to put the game on for him anymore. He does it all by himself. From step A until step Z. He just knows what to do. What buttons to press, what options to choose, what answers to give. Amazing.

So beside learning that I have awesome kids, what else did I learn in 2010? Hmmm...that SA should be given the chance to host the Olympics! And that if they don't do something SERIOUSLY soon about the farm-murders, food prices are going to skyrocket as we're loosing our farmers to other countries, resulting in us having to import more food. But that's a whole different conversation for another day. Not at midnight!

So I hope that everyone will have a great 2011. That it will be kind to us all. That everyone's prayers will be answered. And that we'll all stay healthy. And that Boeboe's surgery will be one big roaring success. Happy New Year!!!

Musing...

I was looking at old baby pics of Boeboe today (taking pics so that I have them digitally to post on here, they're all on films from those days!). And 2 pics stood out for me. Both was taken of her feet, from the bottom. The one a few days after birth, the other around age 1. And both times, both feet was FLAT. Though, the one of age 1 was a little, teensy tiny bit more arched than the one at birth. But stil...FLAT. I think, as soon as Boeboe's back, I'm going to take a pic of her feet at the moment. I'm sure it would clarify to anyone who still wondered if he feet is really arched or not. I know, all babies feet start out flat and then get their arch later on. But this...it's such a huge difference from that pics until how it looks today.

Even her grandparents looked at her feet a few days ago, exclaiming how abnormal they looked. Her feet was dirty, and the dirt didn't come close to the inside arches. Those parts were as clean as after her bath. I think when I saw that baby feet photo today, I realised...this really is neurogenic. And it really is progressive. I'm not making it up, or imagining things. It is nice to get little confirmations like this, to squash the lingering doubts if we're doing the right thing...going for this surgery.

It also makes me feel a tiny bit better about something that's been bothering me for ages. Around age 4, I got impatient with Boeboe, because every time we'd take a walk, she wouldn't walk in a straight line. She'd keep bumping into me, or turning in front of me so that I'd trip over her. It riled me! Age 5, precisely 2 years ago, the in-laws were here for Christmas and we took a stroll to look at all the lights. FIL (father in law) was walking behind me and Boeboe, and I was shouting at her to walk in a straight line and stop bumping into me (she was walking next to me, pushing her little doll in a stroller).

FIL called me to him, while Boeboe walked next to her daddy. And FIL showed me the problem. Boeboe was walking with her toes pointing inwards, which caused her to walk skewed. She couldn't walk in a straight line! I was heavily upset. Mostly because I never noticed it! How could I have missed this?

Well, that's where our journey to the pead started, who referred us to a bio-kineticist, who immediately told us there's some major problems and referred us to an orthopediac surgeon. He just kept a close watch on it all and said it's still okay.

Well, now I feel so much better. If her high arches wasn't there from birth, but appeared around age 5, then maybe her toe-in wasn't there either, and I didn't miss it! It appeared later! It all makes sense, and it makes me feel quite relieved, and so much better. Silly, huh!

Hiya Everyone!

I’ve started this blog as a means to keep family and friends updated, as well as a place where I can gather my thoughts. I’m used to writing in English, and since some of my friends are English, I’m going to do this mostly in English. So excuse any spelling mistakes and grammatical errors! Well, this is still a work in progress, so give me time to expand, design and beautify the blog…:-)