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 her bladder 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.

New school term

So the school holidays is over...:( It was so nice. Every minute, every week. Three weeks of bliss. Pity it had to come to an end. Just the weekend left, then it's back to school. Back to the normal routine. All the running around, the activities, the homework, the early mornings, the lunch box preparations, the school clothes, etc. etc. etc.

The kids arrived safe and sound back from the grannies on Wednesday. They had a great time! Boeboe was very pleased when she saw her room when she got back. It's all sorted, packed, stacked, and looks neat and orderly again. Wish I had time (or rather, the energy and inclination) to now tackle Monkeyman's room, clothes and toys! Fortunately Mr N's room is still nicely ordered and neat. His toys just neats sorting, and we did half of that.

On Thursday, my sister brought us a new puppy! He's still nameless, since we said everyone has to agree on the name. Trying to get 5 people (or at least the 3 kids) to agree on a name seems to be almost impossible! The puppy is very cute. Still small. And a mixture of quite a few small-breed dogs. Very soft, longish hair. Cutest little face. And a personality that seems would blend in easily with our family. We're trying to make it an outside dog. Only allowed in the kitchen at night, since it's winter and very cold at night outside. After the years of struggle with Boeboe's accidents, I just can't face doggie pooh and wee all over my house too. As it is, it already happened once because Boeboe left the door open. And of course quite a number of accidents in the kitchen during the night. But I throw newspapers in the little area we block him off in. So that's easy enough to clean up every morning. Not nice though, so I look forward to winter being over, so that the puppy can sleep outside. The kids are trying to teach it to only wee and pooh in one place (at the back of the garden). Since they're the ones who have to pick up the pooh (with a poop scoop).

Here's some pics:

The new puppy

Mr N with the puppy

Our puppy on the right, with his brother. We could choose which one we wanted.

Introducing the puppy to the bunnies. Both were rather skittish...:-)

Fluffy kept him in the eye. She didn't trust to leave the cage and leave him in there, LOL.

Monkeyman being silly, pushing his head in front of the camera...:)

The twins...as MIL calls them. They're always together, always playing, and absolutely adore each other.

Home alone...:-(

I felt guilty after my last post, LOL. It was just me me me me me. All about how I feel about everything. That wasn't fair. It's my daughter it's happening to. How I feel about it, should not matter that much.

So how does she feel about it? Well, to be honest, I'm not sure. Something weird happened a few weeks ago. We spoke about the time before the operation, and Boeboe couldn't remember what I was talking about. She couldn't remember having accidents daily, and why she needed the operation. I was flabbergasted and extremely concerned, so I queried the psychologist. She too didn't understand why that was the case. She said maybe Boeboe has really worked through all her issues already, and put it not only behind her, but blocked it off/out. She's done with that part.

I don't know hey. Still sounds strange to me. But, my daughter always had trouble remembering detail. So maybe it's just the way her brain is wired. Sooooo different from Mr N, who is able to remember minute detail of things from when he was age 3 and 4. Boeboe can't even remember something SO HUGE happening to her when she was 7!!!

Well, she couldn't remember it THAT day. When I asked her about it a few weeks later again, she remembered the operation, why it was done, and when I asked her if it worked, she smiled a big, beautiful smile and said yes!

Anyway, so she's handling it all well, I guess. She's over any and all trauma. She hates the meds she gets, and she hates the constipation. Apart from that, she's really doing well. Happily playing with her brothers now that it's holiday. She's having a blast, and she's really really being such a sweetheart. All the upsets and tantrums before end of term has all completely disappeared. I'm 100% sure the term was just too long and too difficult for her. Now that she's rested, she's fine! Just being an adorable, sweet, calm little girl...:) Love it!

So their grandmother called the weekend (Saturday) and asked if they can have the two oldest kids for the last week of the holiday. I first said no, since we had a busy week planned, but then after saying goodbye, I felt guilty. The in-laws rarely ask for the kids. Maybe once or twice a year. So I asked the kids how they feel, and all THREE exclaimed they wanna go!!! Even my baby...:-( Well, he's almost 3.5 years old, so no baby anymore really, though he'll always be my baby!

So we phoned the in-laws and asked if they want to have all three! I just couldn't tell Monkeyman he has to stay while the other two go. He loves his granny and grandfather, and he would be soooooo lonely without Mr N and Boeboe. He's played and played with them so much this holiday. From the moment he wakes, until he goes to bed, he was with one or both of them. Even when he got tired, he'd grab his pillow and blanket and bottle, and drop down next to wherever they were playing. Then he'd lie with them, watching how they continue the game they were all playing. Once he rested, about 15-30 minutes, he'd join them again.

So to tell him they're going and he's staying...it would've broken his heart. So against my own selfish wishes, I agreed to send all three. We dropped them with the in-laws today, and they'll bring them back after 3 nights on Wednesday. They wanted to come and visit with us next weekend in any case, so now they're just coming a few days earlier.

I'm sure they're all going to have a lovely time. Monkeyman was so excited to stay there, and he was adamant that he wanted to. He hugged us easily, and waved us goodbye with a big smile on his face. So I'm not too worried about him. Though, of course I'll miss him something terrible! Just like we miss the other two when they're not home. Neither me nor hubby likes it when the children aren't home. We don't like sending them away. We don't want time alone, or time to/for ourselves. We get enough of that every night when the kids go to bed at 8pm. We like having our kids with us. It's lonely and quiet without them.

So here's some pics taken during the first 2 weeks of the holiday at home:



My three little monkeys



Since we lowered the slide a bit, he's having so much fun on it

Just look at what Boeboe's doing! Jumping off the climbing frame, not even 3 months after a huge backoperation!!! Just amazing how their little bodies just recuperate and heal.

Even if we're all playing outside, when Monkeyman gets tired (every hour or so), he'll go grab his pillow, blankie and bottle, and lie down whereever Boeboe and Mr N are.

My little tree fairy! We bought and planted this tree before her birth, and it's only now possible to start climbing it.

The house was too silent, so I went in search of the kids. Found them outside, where they were holding a little picnic with naartjies, joghurt and juice. LOL, they're just so inventive and cute. Love it when they entertain themselves like this!

Look ma, no teeth! Monkeyman broke his front tooth (and swollowed it!). Poor poor little boy. We're waiting to see the dentist in a few weeks time. Hope they can help him!

Having fun with his version of Ben10's omnitrix

Just look at that cute little face



Having such a blast!



Monkeyman got a bubble "gun". They had so much fun with it!

Gotcha! Catching bubbles...

My beautiful Boeboe. Eating tomato sauce, lol.

Loved playing with the bubbles

Close-up of the healed wound almost 3 months post-op. You can clearly see the "hairy patch" that used to concern me, though most doctors said it's nothing. Clearly, it wasn't nothing!

It looks really, really good. Can't believe it's been almost 3 months already!





Feeling like a yo-yo!

One moment, I'm up and think the world is just great and that I couldn't be happier. Next moment, I'm tired and feeling down and wish some things can just get better NOW. I'm not very good with accepting things I cannot change. Wish I was though. It would've made my life so much easier.

So what am I on about? Well, the last few things that wasn't fixed by the operation. Everyone just keep on telling me how grateful I should be for what WAS fixed. How awesome and wonderful and amazing the progress has been. How happy I should be.

Thus, I feel terrible to be so ungrateful to still complain about the symptoms that's left. I really love the improvements, don't get me wrong. I don't want anything to change again for the worse. I really, really am thankful for all that's changed for the better. It's just that sometimes, I still get so depressed about the bad things. It's difficult for me writing about it, because this is such an open environment (the blog). 

I feel so sorry for my daughter, because accidents definitely influence how I feel towards her AT THAT MOMENT. Of course, it doesn't change my love for her. These things, just makes me irritated and short-tempered towards her. So unfair, but so human.

So our fight against this inhuman constipation continues. It just doesn't get better. We struggle so immensely, I don't know what to do anymore! NOTHING seems to really help! I've reached some kind of conslusion the other day. My daughter's constipation is made worse by her love for fruit. You'd think it would be the oposite. But remember that her constipation isn't "normal" constipation. Like the constipation most of the population struggles with at least some of the time. Her constipation is because the colon does not get the signals from the nerves to contract. It's totally different from the reason for "normal" constipation.

Fibre is a great thing for the colon, but only if you have enough water, and enough movement in the colon. Then it helps things along. But if you're lacking in water or movement, fibre works like a plug. It stops things in its tracks. I think that's what's happening with my daughter. That's why her diet (lots of raw fruit and veggies) had no positive impact, ever, on her colon. That's why she was so severely constipated as an exclusively breastfed baby. Because her colon doesn't move things along as it should.

So what can I do? I honestly don't know. The only 2 things that the pead could advise, was lactulose and polyethlene glycol (in my country, these are things like duphalac, Laxette and movicol/pegicol). Lactulose works beautifully, but not enough. I'm giving very high doses, and getting a 50% result. Movicol works slightly better, but to find the balance between getting things to work as normal, or causing diahhrea is extremely difficult. And ontop of this, Boeboe absolutely HATES the taste. She hates the taste of both movicol and lactulose. But if she can choose, she choose Lactulose. So we try to stick to that. It must be awful for her, drinking so many spoonfuls of something she hates. Daily.

I've resorted to a suppository a few times as well, and it DOES help. But to force your child like that...:( It breaks my heart into a thousand pieces and feels so totally wrong. She's 7! It's HER body! To force things like this...I just don't think it's right. I've done so many things to her over the years. Forced her to have so many procedures and things to try out. It's difficult. So difficult. So we use the suppositories as an absolute last last last resort. 

Geewhizz, a whole page full of talking about sh*t. Sorry about that. But as you can see, it fills my days and it's NOT nice. But, there's still MUCH improvement, so I try to hold onto that. The nr 1 accidents is really so little now. In volume, and in frequency! It's happening about every 10 days still. It's as if she can now control it some more. Somehow I still feel as if there's continuous improvement. So I don't want to go to the urologist just yet for medication or botox. I think she needs another few months to see how much control she can learn over the last bit of the bladder contractions. I have much hope left that some day, she'll be totally continent with her bladder.

After the one night time accident, there was none again. So, in 3 months, just the once since the operation! Praise the Lord! Same with the pins and needles. Just the one incident. Falling down/stumbling/bumping toes....still about 3 times a week. Just amazing. When it happens, I still cringe. I still wish there was none, or once every few months like my 3-year old. But so much to be grateful for.

So as you can see, I should not really complain. Not about the little bit of issues we have left. It's just that I struggle, and I'm not patient or kind-hearted when I struggle. And my daughter has had so much impatience from me, it's so unfair.

The speech therapy isn't helping either...:-( We've fallen behind with this so much, and we got some new assignments for over the holiday, that we had to start this daily from this week. Yesterday, she did one assignment where she had to answer 5 short questions and drew 2 easy pictures. It took her 90 minutes! Of which 14 was spent in two seperate timeouts since she gets so tired and upset about it all. This isn't fair. But what choice do we have? It needs to be fixed now, before she's grade 4 with exams and everything. Being slow with it, is no excuse NOT to do it...:(

Apart from these complaints, we're having a lovely holiday at home! Very relaxing. I'll post some photo's later in the week.