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Original poster

"It's because I'm a bit wobbly, Mummy"

27 replies

BluStocking · 31/12/2003 11:54

Just welling up a bit.

On Boxing day DS, 2 and a half, spoke to us for the first time about his leg (which is several inches shorter than the other , small foot etc etc). He got out of bed and tripped over, as he is much less stable without his Piedro Boots which have a lift in them, and said "It's because I'm a bit wobbly, Mummy". I said "Is it because you haven't woken up all the way yet?" and he said "No, I'm wobbly. friend isn't wobbly and friend isn't wobbly, I'm wobbly".

DP and I have decided we need to start explaining clearly to him about his leg, so that he is confident and in control of the info..in a two-year-old sort of way.

Anyone got any experience?

OP posts:
dinosaur · 31/12/2003 12:00

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JanH · 31/12/2003 12:04

I'm welling up a bit too, Blu.

I think Lou had something a bit like this with her ds2 quite recently - is he a similar age? He suddenly said something about not being able to walk, and cried. So she may be able to help.

WSM · 31/12/2003 12:07

Bless him, Blu.

Original poster
BluStocking · 31/12/2003 12:15

I haven't tried the Yahoo Groups yet, I must tap into them. (MORE compulsive inter-netting).

Yes, Bless Him! He seemed fairly matter-of-fact about it, and as if he was telling me something I might not know. I remember Lou's post about this. The thing is DS is extremely active (as MN-ers who have met him will know) and he has tremendous physical confidence. My DP and I just need to make sure that that confidence is never undermined.

OP posts:
dinosaur · 31/12/2003 12:19

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WSM · 31/12/2003 12:20

Absolutely, Blu. It does sound like he is fairly comfortable with his disability, he certainly seems to be a confident little chap. I think you have won half the battle, as I would think that once a child is confident and comfortable with thier 'problem' it is really just a matter of arming them with the information. I'm sure one of the support sites will have useful advice on the best language etc to use with a 2 year old.

madgirl · 31/12/2003 12:22

blu extra special new year's message to you and your family. what a special little boy.x

Lou33 · 31/12/2003 12:32

Hi Blu. BIG hugs to you and your lovely sounding liitle boy. I'm welling up with you here!

DS2 said a similar thing a few months ago, and it was completely heartbreaking. I just had to tell him that he couldn't walk yet, but we would just have to make sure we got his legs extra strong. After his announcement, and his tears, he really didn't wantto talk about it much, he just got cross with me. It's a very hard age, because they are so young, and it's difficult to know how to phrase it isn't it?

I would think that the best thing to do is say yes, you are a bit wobbly, but...... then find something he is really good at to show him he can do other things better. Not sure how much help I have been, but give him a squeeze from me .

Original poster
BluStocking · 31/12/2003 12:38

Thanks all of you.

Lou, I do remember your posts about your DS. How is he about it now?

You are right of course, and really it's me who's wobbly: DS will be fine. We have a consultants appointment next week, so a good focus for explaining. He knows that he has 'special shoes from Jim' rather than from a shop. I think this has been a good prompt for us to think ahead. I'm going to casually introduce the fact that he has 4 toes, too, before those rhymes (this little piggy etc) start to become an issue.

Must go home and take him to park...Happy New Year, Everyone, and remember campagne can make you VERY wobbly!

OP posts:
dinosaur · 31/12/2003 12:41

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Lou33 · 31/12/2003 12:46

He's very sweet thank you. Still not walking, only crawling (he is 2y 10 m). We have been told he won't be able to run, which really upset dh (footie,sports days, etc), and just before Xmas his physio said she thinks if he does get walking he will always need to use sticks, which was quite hard . But he's a very happy boy, he asks his daddy to hold him upright so he can play football, and says "look mummy I'm jumping", by which he means "w" sitting then he throws his arms into the air as high as he can, a bit like a mexican wave, lol. I've moved my own goalposts now (lots of football references in this, lol). We were hoping he would be up and about by 3, well that's not going to happen, so I'm hoping he will be ready for school.

Good luck with your appointment , let me know how it goes.

Lou33 · 31/12/2003 12:48

As an aside, when i was about 19, I used to have a bf with fused toes. It made no difference to me at all. These things are important psychologically when you are growing up I think, but I just wanted you to know that , in case you think he might lack in the gf department when he is older, lol .

dinosaur · 31/12/2003 12:49

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MABS · 31/12/2003 14:19

sorry for recent abscence - very poorly mother . Can totally understand and empathise with all of these comments. Ds is doing very well in his piedro boots, but, my God, he is all over the place when they are off. He seems to be able to balance with them but without them he seems to be going backwards. He refers to his ' funny leg' and I still can't hear him say that (or write about it) without choking back the tears. Happy new year to you all. x

JanH · 31/12/2003 14:40

Sorry to hear about your mother, Mabs - sorry about the 'funny leg' thing too - it must be very hard to be matter-of-fact about it sometimes.

How is your DD's face now? Hope she has healed up well?

alohappychristmas · 31/12/2003 15:52

Happy New Year Blu, and happy to New Year to your LOVELY boy. I feel very teary hearing what he said, but confirm in spades that he's such a clever, goodlooking and physically adept boy that whatever happens in the future I am sure you and he together will be able to overcome it. As for telling him, I suppose it's the same as any difficult conversation, the truth, in little easy to digest bits and don't give more than he's comfortable with.

chatee · 03/01/2004 13:16

lou, my dd does exactly the same 'jump' and i know exactly what you mean about moving your goalposts !!

Luckymum · 03/01/2004 18:59

BluStocking, I so feel for you. Dd (now 10) has a slight shortening of one leg amongst other problems and is becoming very aware of her 'image'. We've always said shes 'special' but recently she said she 'didn't want to be special cos that means different and I just want to be the same as everyone else'

motherinferior · 03/01/2004 19:22

Also remember that he is quite probably using 'wobbly' as a descriptive rather than a perjorative term - can you build on this to say he 'wobbles'(or whatever term you/we come up with) everyone's different (colours, heights, and so on - look at Mummy and Daddy who are different colours) etc etc? Oh dear. I'll go on thinking. And of course I totally agree with Aloha (all the best-looking blokes are half-Asian IMO!)

codswallop · 03/01/2004 19:31

that is so sweet blu. I am too abit tearful. Immense respect to you.

Blu · 05/01/2004 11:08

LOL Lou, re the toes re-assurance!!!
Very pleased to hear that your DS is enjoying his jumping. He will make it, bit by bit, but it must be hard.

Luckymum: does your DD manage with shoe lifts, or will you be looking at lengthening / growth plate treatment? What is her shortening associated with? My ds's is a common side effect of his complete lack of a fibula.

Thank you, all lovely MN-ers!

dinosaur · 05/01/2004 11:21

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ThomCat · 05/01/2004 12:18

Hi Blu - bit late coming in on this but just wanted to say how much that squeezed my heart when I read it. I know he'll be okay though as with a mum like you to help him through these times he'll grow up a very confident happy boy.
Did you find the thread that Lou started when she went through something similar?

Lots of love to you anyone hon' - hope you had a great time over the festive season.

Lots of love Thomcat xxx

Luckymum · 05/01/2004 14:39

Blu - dd's leg discrepancy was caused by a clot post-op open heart surgery. Her heart function/circulation was seriously compromised and in the end the clot was surgically removed but caused damage to the main artery. Shortening is only 2.9cm on CT scan, she's more bothered by it because its quite a bit thinner and she thinks its noticeable. She manages Ok with shoe raise but they have offered shortening of her long leg (epiphysiodesis (sp?)) later if she wants it. Will your DS be offered treatment later?

Blu · 06/01/2004 12:05

Hi, Luckymum: Oh my goodness, complications really are far-reaching, aren't they? Hope your DD is flourishing. DS has had extensive surgery to the soft tissue in his foot, and is now being monitored as the discrepancy is likely to change (both ways) as he grows. The plan is to start considering bone-lengthening when he is 6 at the earliest, and maybe to restrict growth in the other leg (it sounds brutal; basically they destroy the growth plate, don't know if that is the procedure you have named)to assist the levelling effect. There is still a risk that lengthening may not be possible (if the discrepancy increases too much) in which case they will advise amputation of his foot and a prosthetic lower leg.
But as people who have met him have said, he currently manages very well indeed with his shoe lift and Piedro boots.

I can understand that your DD finds it hard. Does she have any networks or contact with other kids with similiar conditions?

Thomcat: and kisses