Welcome to my blog!

Thank you for taking the time to stop by and visit! We hope to share with you our journey of raising a child with Achondroplasia, the most common type of dwarfism. If this is your first time here, please start by reading Caitlyn's Story. It will share the beginning of her life with you. Enjoy!

Thursday, February 17, 2011

He Has WHAT??

Here is a post from my friend Tonya, who’s son Knoah has Achondroplasia, the same diagnosis as Caitlyn.

ACHONDROPLASIA ( A CON DRO PLAY SA)

Origin: Greek

Meaning: A- in the beginning, Chondro- Bone, Plasia- Without.

Literal translation: In the beginning without bone= Achondroplasia...NOT TRUE.

See, people with Achondroplasia obviously have bones...they have a skeleton, like everyone else, however, their body mechanics work differently than an Average height person. Without a long drawn out explanation, which I could easily give with fore thought, a person with Achondroplasia creates Cartilage which SLOWLY converts to bone. By SLOW, I mean, VERY SLOW. This is the reason for the short stature. Their "bone switch" is turn on continuously, which overloads the system and bone grows slower. Doesn't make sense...I know.

See, I have learned a bit about dwarfism over the 4 and a half years I have had Knoah. I have learned to see things differently. It has opened my eyes to a world I never really paid attention too.

When I had Jacob and Hannah, both who are average height, they looked "normal"...little did I know there is no such this as normal. Enter Knoah. A human child, who by all standards has the cards stacked against him from the beginning...if you look at it that way.

Knoah is shaped differently than and average height child. 99% of days, I don't even notice it. Confined in the walls of our home, he is Knoah. Mouthy, determined, creating mischief and gladly follows along with his older brother and sisters commands...ugh...

I once wrote a post about the "Imperfect" child. Which he is...wait for it. He is not your average 4 year old who jumps, climbs, runs and plays. He does not simply get dressed and throw his socks on. Basic needs he should have are a challenge to him, so we get creative.

Lets look at him. It's okay to look and study him, I give you permission. What do you notice about him?

He has a large head...massive actually. Shirt head holes are simply not big enough...STRETCH them out...

His arms hit belly button level, which means he cannot touch the top of his head.

His torso is long, his belly protrudes and his backside perks out.

His legs are short...at 4 years old he is wearing 12 months pants. His legs remind me of a chicken drumstick. Meaty on top and thins out as you head toward his feet.

His fingers remind me of a starfish. Banana shaped and pointy fingers with fat pads at the base of his hand. Trident Configuration.

He finds his male parts hysterically funny, as all boys do and finds a way to make sure to do the triple daily check to make sure it's still there because god forbid something happen to his wanky.

He can fold himself in directions impossible for an average height person, unless your double jointed.

He walks with a swag(ger)...he is pimpified and runs with a waddle. Throwing each leg out to the side.

He knows he's a Little Person and is okay with it. We run into the daily "MOM! Help! I can't reach it, my arms are too little". :-) Yes, son they are.

When I found out I was pregnant I begged God (knowing he was probably my last) please, PLEASE make him stay little forever...WISH GRANTED. Oh! Not exactly what I had in mind but better than I expected. At 4 years old, he stands at 32 inches and weighs 31 pounds, the size of your average 14 month old...BUT I DON'T CARE.

He is Knoah. Spunky. Loud. Sweet. Loveable. Likes Hugs and Kisses....and donuts.

Remember what I said about the "Imperfect" child. He is "Imperfect by many standards, but by my mine, words have a way of having a new meaning depending on how you break it down. IMPERFECT...I'M PERFECT...Yes. He's Perfect the way he is.

He will have struggles, we all do. His will happen to be physical. He will, as we do, get creative with certain thing...toileting, dressing, etc, but overall. I make him fend  for himself. I cannot and do not want to do everything for him. When he's running and falls, I turn and look and say "Get up" to which he gets on all fours and "Pops" up. He wants something on the second shelf. He grabs his step stool, or chair...or anything with extra heigh actually to get it.

I lightly make light of the fact that a mothers back was built to carry and infant to what 19 months old...old enough they can walk alone with being carried...a POLP will carry their child several times a day due to exhaustion. Little legs take extra steps. My back has learned to cope :-)

I made the comment a while ago about seeing an average height child next to Knoah...Knoah is more visually appealing to me. Why? Probably because I love the way he is shaped, built. I admire the little things about his body and realize that yes, he is your average 4 year old, he is also "different". Being different is not bad. I am bi-racial and that is the first thing people see about me. They don't see my personality, my knowledge, they see my skin color. It's the same with Knoah. Only until you get past the initial shock of what your seeing can you look past it and see a person for who they are, how they contribute to your life and the life of others.
Knoah is no different. His body is, but he's not. Would I change him if I had the chance? No. He would not be who he is had he not of been short statured. He would not be as creative with his environment. I would not see things in his perspective.

I had a child who is I'M PERFECT and that is just fine by me. Please don't think he is a science project because he's not, he is however a work of art. A lone piece of perfection. Beautifully crafted and engineered to fit his specs.

I tell him almost everyday "Knoah, I love that your little" to which he replies "Yes but I'm not a baby. I'm a toddler" :-) No, no one will mistake you for a baby when you open your mouth to scream "it's your fault" when something doesn't go your way. At that point, I'm like dwarfism? SO WHAT...your not going to talk to me that way. I don't care how cute the world thinks you are...yet, he still manages to use his charm on unsuspecting strangers to give him candy, money and whatever else they pull out of their pockets to give him because "he's cute"...double edged sword.

Yes, Knoah has Achondroplasia. Yes, it has been a long, hard road since his birth, but you know what, he has taught me more in his 4 years than I could have learned in a lifetime without him. He has enriched Jacob and Hannah's lives, he has shown them a different view point. Something I could have never taught them unless they were forced to see it.

I love Jacob and Hannah more today than I did when I had them, I took their health, their "perfect bodies" and relished in the fact they would have no issues...little did I know it took a child with a disability to open our eyes to a world we would have never encounter. Feelings we never thought we would feel. A stronger family bond because Jacob and Hanna realize that Knoah is different and they are happily helping him achieve his goals and become your average short child.

He is who he is. My son...Knoah.

EDUCATE: DWARFISM AWARENESS!

TO READ MORE ABOUT KNOAH'S LIFE VISIT OUR BLOG AT HTTP://knoahsarc.org/. It is now in it's 4th year...not to bad!



Thanks to Tonya for allowing me to share this.  She has such a wonderful way with words and couldn't have said it any better.

And to share with you my I'M PERFECT Catybug

5 comments:

Caden and Mommy said...

Ahh! Tonya did a great job with this, she is so creative, she hit every issue just perfect. Seriously, I love being Caden's Mom. I couldn't picture him any other way :0) Where did you find this? I dont see it on her blog.

Melissa Swartley said...

LOVE this post! Tonya is awesome and hits it home every time! Osteogenesis Imperfecta is latin for "imperfect bone". From now on I have adopted Tonya's "I'm perfect"! Brilliant! What a beautiful picture of Caty too! She is such a sweetheart!

AshleyMom said...

Very well written, just the way most of of POLP feel about our I'm Perfect Little ones:O)

Greene Family said...

Love this post - love "I'm Perfect"! Tonya is awesome! Adorable picture of your sweet Caty!

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