The support group I found….

Last night I went blog hopping to catch up on all our little ones, and “oh my hat” there are so many blogs!!!!! And I think it’s just fantastic!!!!!!!!!!!!!!!!!! And most importantly we are all there for one another… I still have not had any joy with a support group for Dwarfism in Cape Town, and I have tried, but people here seem to be different (And please I’m not referring to all people in Cape Town!!!) Either they cannot arrange the time to get together, or when we do arrange a date, only one family turns up, but mostly they are just not interested in wanting to know more or to meet other families, I get the impression that they are afraid to learn more about their child’s condition, you know that old saying “Ignorance is bliss”

I remember I use to be like those parents I was  also afraid of “to much info” . After Leah’s birth my brother would bring me all sorts of information about Achondroplasia and I would smile, say thanks and when they left I would take the whole lot and toss it aside, I just could not deal reading about Sleep apnea, hydrocephalus, kyphosis, ear infections,tonsils,adenoids after all where the heck did all this scary information come from!!!!!!!!!!!!!!! She is a dwarf!!!! I don’t believe all that stuff about breathing patterns, head size, and spinal issues……….. All my life I thought being a dwarf meant you were a small person nothing more, nothing less, but deep down in my heart I knew I was of no help to Leah, how was I going to cope with raising her properly if I had know idea how she worked??? I had to accept that she was different and her instruction manual was not quite the same as my previous kids, so I swallowed the fear of the unknown and started reading and learning, and I realized that yes there are some scary issues we need to be aware of but it does not necessarily mean Leah will suffer from all those conditions, I now know what to look out for, in case we ever do have to deal with Kyphosis, Hydrocephalus clicking joints or anything else that affects kids with dwarfism, I am more aware of my options and most importantly, I can determine whether the Doctor treating my child is clued up or not, because believe me I have had a few blank stares when I said “ Hi I’m Charmaine and this is my daughter Leah, she has Achondroplasia” and I even had one answer me by saying “ Oh how long has she been suffering from this problem”!!! Okay honey… grab the baby and the bag and let’s get out of here!!! Fortunately we are now under good supervision, thanks to Red Cross children’s hospital, and my family doctor,Dr Riana who dusted off the old textbooks and got cracking on some Achondroplasia revision, and not forgetting Doctor Hugo Hammond, who has been with Leah since she took her first breath.

So yes in a nutshell knowledge is power, and friends help ease the load, and I cannot begin to explain how all the blogs have helped me in raising Leah, there are times I wish I could be part of the LPA gatherings or be there when you get together just for some play time, all I want to do is give each and every little one a big hug but even though Im on the other side other world, I know that I’m just a click away so I still get to share the laughter and tears and all the achievements… So I guess I have found my “support group” in all the wonderful blogs, Heck some of us have even become Facebook friends!!!!!

So to all the Little People blog parents may we go from strength to strength!!!!!!

6 thoughts on “The support group I found….

  1. We are most definitely a STRONG support system for each other through our blogs and also Facebook. Whether we live here or there or halfway around the world (in your case), I see us as a part of a family.

    I’m sorry that locally you don’t have what we have here in the states with LPA. Maybe with time, your group will grow and there will be new families that are looking for the support and then you can be there to offer it to them. You would be a tremendous asset to new parents!

  2. What a great post! I’m unsure if you ever read my blog, but I do read yours…and since I enjoy it so much I tagged you…go to mazurgirls/ and you’ll see!

  3. Charmaine, I sure hope you do find more families out there like we are so fortunate to have here in the states. I sure enjoy reading everyones blogs and if I get cracking, I may do one myself and I’ll let you know. I am just a click away, your Facebook friend, Melisa

  4. Charmaine, I’m so glad to have you for support and as a facebook friend! We don’t have a very active LPA chapter here in Pennsylvania unfortunately, but I am glad that I have it. It must be pretty tough without that type of support where you are. Maybe someday it will happen, but for now the best support I have found is right here on the computer with you and the rest of POLP and Sonyas Campomelic Families group! Sometimes I wish we all lived in the same neighborhood, how great would that be?!
    Sending hugs from far away ~ Melissa

  5. Great post! I agree with Melissa . . . how fun/great would that be if we all lived in the same neighborhood! 🙂 The blogs and Facebook are an amazing support group to us too, and I feel so fortunate to know so many wonderful families through them! Hopefully, the families in your area will come around with time!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s