So i have Achon……

It’s been fairly calm the last few weeks, Leah’s health has been good, and we have been enjoying the last few weeks of summer, sadly the air is cooler than there is that distinctive chill in the evening breeze. So I guess we going to keep a close eye out for that nasty flu bug as we heading for that time of year again… Winter!!!!!

I must let you in on Leah’s new favourite word “Achon”. As you have read before she now realizes that she is a little person. Its not easy because we have moments where I can see she seems really sad about it, she often asks me when she will be taller and sometimes she gets frustrated when she cant reach things, or when her foot wont fit in the pretty pink shoes, or when her head can fit through the neck of the pretty sweater. I feel her emotion and it’s hard for any mother to see the disappointment in their child’s eyes, even when it’s not something you would consider a serious issue.

But there is a lighter side to things, Leah has a great spirit, she does not let disappointment get the best of her after a while she seems to accept that sometimes its just not a bright idea to force her cute foot into the shoe that clearly wont accommodate that achon instep, sometimes when the sweater wont fit, she runs around scaring her sister saying “Leah has no Head” we just have to have a giggle because I realize that she is slowly starting to accept her body and most of the time she seems to be fine with it especially when she rubs her round belly and says “make a wish” LOL, but what  I love the most  is when I see how her captivating personality simply makes people fall in love with her she has a such a pure energy with so much love to give, at the same time she has a really good sense of humour…quite sharp at times  let me give you some priceless  moments…

Recently a friend of mine gave birth to a little boy, when Leah saw the baby she said “ Mum he is way to small, I think he has Achon” . One evening I had a problem getting the girls to eat their vegetables and without thinking I said “You are not going to grow if you don’t eat your vegetables” Leah said  “Duh… I have Achon, not going to grow no matter what I eat” that one had me burst out laughing and how was I to counter that comment. The best is when she met some kids who are younger and taller that  she is and I  said “Leah why don’t you go play with your new friends”, Leah rolled her eyes put her hands on her head and said “ Oh my gosh why do I have to play with  the Big Babies I have something else to do right now!! ”

So unfortunately there are going to be sad times, but best of all we will have tons of light-hearted happy moments I love these moments cause they make you realize that things are actually perfectly balanced. I have always been a strong believer in the energy we hold within us and it’s so important to keep that energy positive in our home. Leah knows that she is unique inside and out and just being around her makes me realize that feeling down is only but for a moment. No matter how bad things may seem at times this too will pass, and as a mom I focus on assuring her that its okay to be sad, its perfectly acceptable t laugh at yourself, and never let those ugly negative people steal the joy you have within you.

6 thoughts on “So i have Achon……

  1. Sigh, reading this latest reflection on Leah, made me sad. It reads sad and if one reads between the lines, it is written out of Mummy’s need to get something off her chest because she is feeling down and needs to write it out of her system. Mum needs someone to listen, to listen to her trying to rationalise on her reflections, and mum needs a little bit of reasurance that yer, things WILL be just fine!

    First off, what you are expressing and what you are feeling is actually exactly the same as most parents of a beautiful Achon child feels from time to time. Perfectly natural and human.

    Second, remember that what you see, what you feel, and what you analyse of any given moment in Leah’s life, very rarely reflects her own feelings.

    I like to use the train analogy. Imagine Leah is in one of the compartments of the train, but you are stood some distance away, perhaps on a hillside looking down on the train. Leah only sees what she sees with her own eyes, and she interprets this information with her own limited experiences and awareness of the situation she lives through. She sees what is in the carriage and she works out exactly what she has to do within her limited space.

    You on the other hand see what you interpret her small stature and short limbs as an obstacle in her progress. You see the area around her carriage and because you are some distance from the train, you see some of what is ahead of her. And, like any observer of a train moving along the tracks, you are also aware that there is not a lot you can do to change the trains progress or direction.

    You both live in different worlds but in the same one. You see far more than Leah sees but as a result, you see problems and difficulties that Leah neither sees nor is aware of. She knows her world and she knows the rules that go with it.

    The secret, I would suggest, is for you to be aware of Leah’s world as she sees it and to try to think the way she does. But at all times, trying to remember that what you see as a problem, she probably doesn’t. However, you also have to try to think like Leah. Try to see what she really sees, what she really thinks and to, if you like, get down to HER level, which is not physical and not mental, but more psychological.

    To illustrate….. When I was fifteen and in my last year of school, one wise teacher decided that we would be better learning to dance (ballroom in those days), at school, in the lunch break, rather than be plunged into an embarrassing situation at our first REAL dance! When I heard this, I knew instantly that there was no way I could learn to dance, especially with post pubescent girls with boobs at my eye level! No way were they gonna let me put my short arms around them and no way were they EVER gonna dance with a DWARF!!!!!!

    I went home and broke my heart to my parents. I remember the look on their face. A mixture of totally not understanding my problem and a look of sort of helplessness. I so desperately needed them to understand! To understand the physical problems but also how important it was to me!

    Sooooooooo, Charmaine, as Leah goes through life and meets with her individual hurdles and mental tribulations, try not to just pass it off with a “Never mind, never mind”. Because to Leah it IS important!

    Sigh, a lovely piece of writing from you, and knowing you as I think I do, Leah is not gonna go far wrong with a mum like you:-)

  2. Hie, u are a great mum you remind of mine, im an achon as leah puts it im 24 it is hard bt u make the best moments count. I have gone through school and am bout to finish my bachelor of science degree in environmental health. Leah will go far support her and she’l have confidence to achieve all she wants. You guys have little people of southafrica thats very great. I stay in zimbabwe and would like to setup a similar suport system please help me on how to go bout it.

  3. Perfectly said! Just perfect. She looks so grown up in that picture and you know what? Those are some pretty snazzy pink shoes she has there. And I can’t help but understand your sadness your winter is coming when ours is starting. (So bizarre to me-June-August always think summer). I am a lover of the warm weather so I feel your pain!

  4. Hi Charmaine! I love your post, so beautiful and so true. I love the way you feel the feelings, without denying the sad ones…. Leah will do well with your guidance and amazing love. You are awesome mom and Leah is a little lady I want Amelia to be like Leah! I agree with Fred that our kids feel very differently about themselves than we feel about them and their challenges. I also like to give you an example – For over a month now – Amelia wears this horrendous brace covering most of her little body and I would absolutely die having to live with that burden. But not her. She doesn’t even notice it by now, lives her life like nothing happened, does not know any better. Family members pity her but I pity them because what they see it’s her brace and tell themselves a story about how hard it is to live with it. Just a story, like in other situations, we tell stories with happy or (most often) unhappy ending or progress. We, like Amelia, don’t know any better (who knows the future?) so we project, assume, anticipate it! Amelia lives in the present. No stories, no plots, just NOW. And it is surprisingly a joyful one! She laughs, rolls, enjoys life to the fullest. I know that it gets harder once kids are older and start becoming more aware of what achondroplasia implies…. So I learn from the teachers like you and Leah to guide Amelia in a near future. Thank you Charmaine.

  5. Nice post Leah. I’m with Kim, she’s looking so grown up I’m a summer gal too so very sorry you are heading to your winter. That conversation you had with Leah about eating her vegetables and her response back made me think…our achon kids are smart as a whip….never miss a beat!

  6. I have achon. too, I’m 18.
    so this comment may or may not offend you, but i personally have gained 16 inches in my legs and 4 inches in my arms through the surgery of limb lengthening. i’m now 5 feet, 1.5 inches tall. since i appreciate someone spreading the word to me, i thought i could maybe suggest it to you. not saying you should, because this is a PERSONAL CHOICE. your daughter is gorgeous and will live such a wonderful life no matter what. however, this is for your consideration. fyi, its very frowned upon in LP’s society and by no means should be considered as “everyone should”. because thats not true.

    despite being hard and painful. for me personally, it was incredibly (like 10000000x) worth it. and even if i never decided to do it, was worth at least considering it. i know youre not from america but the best doctor in the world to see is dr. dror paley in southern florida. people from ALL over the world come to see him. patients with achon. see him all the time and make incredible life changes. if you disagree against the surgery, thats fine. definitely understandable. but please at least take a thought to it. and dont be offended if you disagree with it.

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