Allowing “Room” of Disappointment

Sometimes I question my self, I wonder if those who you think or should I say expect to understand you really do understand your situation … I have had a heavy heart about a few issues over the past few weeks and what better place to vent that here in the room were my true support lives.

Recently some friends invited us to a show, the setting of this show is based on the old circus style. The mystical enchanted type of show with fairies ad goblins. The reason why they invited me was because the act involves a little person, but he is depicted as a freak and he falls around and basically makes a fool of himself, I decided its not something “I” would want to attend much to the disappointment of my friends, and during the whole “should I stay or should I go” debate someone says “It something you should get over because you could get good contacts for Leah to use in future as there is not much she can do with her life anyway” Surprisingly it was not anger that hit me, the anger set in much later…. What did hit was the shock of someone you love disappointing the support and understanding you thought they had.

These are the very “friends” who say “oh Leah you are so cute, special, a brave little girl”, but yet these “friends” don’t really believe in her ability?  So forgive me if I question my belief in you being a true friend, To me a true friendship conquers boundaries and feeds love and encouragement into any situation, but guess that’s my opinion on what friendship is.

“Have you seen Leah’s clothing, they never fit, the sleeves are long and the pants are rolled up why cant Charmaine just get clothing to fit the child properly, she looks neglected”

I think this hurt the most, in fact what hurt the most is it was said in the company of Simone and Nicole, Leah’s older sisters. I take pride in my 12 year old daughter Simone for clearly stating the following  “ If you haven’t noticed Leah has dwarfism and if you want to find the perfect “fit” shop bought items then I challenge you to do so… you don’t realize how my mum has to take every item into consideration when we have to buy Leah clothing, a simple neck hole can be an issue the reason her jeans are not fitting the waist 100% because she has tiny hips, her legs and arms don’t fit cause they are short and cutting them means she just gets one season of wear so we make a neat turn-up….. consider that before you judge my mom as being incompetent?  … I thought that “you” of all people would understand.

“Thanks Simone mummy loves you lots and I know you got my back!!!! 🙂

So I guess I must not forget to leave room for disappointment because there will be times when you encounter people who “look at the pictures but don’t really read the book” and it seems I have quite a few of them in my life… but not to worry at least I have my Facebook and Blog family and I know when I enter that room the word disappointment is not part of our LP vocabulary.

7 thoughts on “Allowing “Room” of Disappointment

  1. This saddens me so. I don’t understand why in other parts of the world differences are so difficult for persons to understand. It just angers me that you are getting these comments from people you know! It’s amazing to me. I just cannot imagine anyone saying that to me, at least those that know me and say they love my child. I think this gives you an eye opener into who your true friends are. Leah is just precious and an amazing child. And I know you advocate hard and strong for her. We are all here for you. Love you!

  2. Hi charmaine with the loving family Leah’s has she can do anything. I have been sad alot lately and it is due to most of the issues you are talking about. Shopping for Alex is not easy i either come home with nothing or with something i have to alter altogether. Shoes i cannot find i visit nearly 10 shops at a time. By the time i get home i am completely exhausted. My social circle i have cut by choice. I say try living a day in the life of Alex and kids like her they will change your life. No educator will teach you what they can. LP’S i salute you

  3. Charmaine, how upsetting! I’m so sorry to hear this. It’s one thing when you come across someone you don’t know and they are ignorant and say ignorant things like this, but wow quite a different feeling that settles in your heart when it’s someone you know! I agree with Kim “this gives you an eye opener into who your true friends are!” We send you our love, hugs and support! You are one strong mother and super advocate for Leah! Hugs and Love!!!

  4. I’m with the girls, how astonishing that “friends” would say these things. It’s good that it’s done and you know what they think. Keep your chin up, your girls are beautiful (all of them!!) and smart and determined! It’s so unfortunate that some cannot open their minds but continually open their mouths. Hugs!

  5. Hi Charmaine,
    I stumbled across your wallpost on Lead SA’s page in FB, with a link to this blog.
    Thanks for sharing a glimpse into yours and Leah’s life!

    I am mom to Naomi, 2 years old, born with Congenital Heart Defects. She has had heart surgery and will likely have at least one more in the future. If you don’t see the scars on her torso from surgeries and drain pipes, you wouldn’t even know about it. People often say during conversations about her condition “so she’s all fixed up now, right?”. The short answer is “yes, sort of.” Her heart will always be different, surgery is just to help it work a bit better.

    My niece has Downs Syndrome and I know my sister-in-law goes through many of the emotions you have described in this blog. I love my niece to the moon and back, yet I am sad to say, I know there have been times when I have unwittingly stepped on my sister’s air hose and heart with careless comments. Thank you for expressing some of the feelings I am sure she feels often about her precious daughter whom she loves so much she would give her life for!

    We have precious and unique little girls in our lives and we need to love them well!

    Thanks
    Sam
    Cape Town

  6. Hugs to you! I wish I could say something profound here to take the hurt you are feeling away….but I just don’t know what to say. I think Leah is adorable and from everything I have read and seen about her I think she is as competent, if not more, than any child her age. I think all your girls are! As for the clothes issues, might I suggest you take some of these so called friends shopping with you next time you need to buy Leah clothes. Let them see first hand how difficult it actually is – because anyone who has ever gone clothes or shoe shopping for an achondroplasic dwarf knows all too well just how hard it really is. Hugs to you. xoxoxox

  7. I have dwarfism and I love reading your blog because it gives me an insight into what my parent’s have been through. My parents are of average height and all 3 of their children were born with dwarfism. I’ve added your blog to my blogroll on my site because I think your outlook and experiences are vitally important to those families experiencing similar prejudices. There is no reason, aside from prejudice as to why Leah can’t enter any profession she wishes. There have short doctors, nurses, teachers, laywers etc… I have chosen to become an actress but stay fervently away from steriotypical roles. My other sister is an engineer and her identical twin sister is a production manager for the BBC. All 3 of us have dwarfism. You don’t need friends with limited consciousness, you need mates who will help you and your daughter shatter prejudice. They were always small minded people, they just didn’t reveal it earlier, it just took meeting your daughter to expose their pre-existing fraud.

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