Nothing in life is ever guaranteed and there are times when one must look reasonably at a situation and determine what they must do.

Without getting into specifics, I will not hold the position of Parent Coordinator, my friend Sarah will. I am happy for her, she will do a great job and it was completely my decision.

Having seen what occurs on Board of Director’s, I am passing the reigns onto Sarah. People have their own motivations for doing things and that is fine, but I felt uncomfortable with what occurred. I had a decision to make.

I am okay with that. I like to think of myself, as a leader. I like to see myself making decisions, even when they will not go my way, this is one of those times. Sarah and I have discussed it and she will hold the position and I will help her out. She will do a GREAT job!! I am happy to help help her in anyway I can!

Everyone would have been fine with the two of us doing it together, but that is not the “norm”, nor was it standard.

Enough said.

So, anywho, Knoah has been busy creating havoc in the house. He is either screaming, hitting, biting or just being difficult. Just an average boy he is.

It’s funny, Friday I realized that the more we are out in public, the more comments I am hearing.

“He’s tiny”

“He’s soooo cute”

“How old is he? Oh, why is he so little?”

I was speaking with his Physical Therapist and was explaining the “Knoah Phenomonom”. It appears everywhere we go, people stop in there tracks to stare at him. I have rationalized it as he is so incredibly beautiful, their lives will stop if they don’t drink in the ultimate perfection he is….

So, we were talking and I said I wish I could see him the way other people see him. I mean, I wish I could see what you see. I see Knoah, the eating machine he has become. The heavyweight on my hip, the little boy who has a screaming fit for no reason. People see a baby….no little boy…a child who looks different. Something makes him different, but they can’t put there finger on it.

Knoah’s PT was explaining that when people see Knoah there brain sees a baby. He has the round face, big eyes, high forehead, little body. Then they process he is walking, but baby’s don’t walk, toddler’s do. He’s nearly talking, baby’s don’t talk. So people see him and are confused. Okay, I’ll buy that.

I still just see Knoah. It doesn’t even cross my mind when were are home “how small” he is. He’s just short. Then we got to the store and wow, the stares we get. Then I become conscious of his size. I have never been one as an adult to stare at someone because they have a difference. I look, like everyone else. I may even give a “second glance”. You know, you see something and your not sure you saw it so you look again to make sure you saw what you think you saw, but to down right stare.

He’s not that small, in my eyes. I realize he is in the 80% tile for weight (22 pounds) and he is just above the the 25% tile for height (29 inches). This is on the Achondroplasia growth charts. We don’t bother with Average Height charts anymore. They say by the child’s 2nd birthday, double their current height and that is their adult height. Using this rule of thumb, I am able to predict Knoah’s final height at about 146 cms or about 4 foot.

Does height really matter, we already know he’s going to be short. I sometimes feel like taking a magic marker and writing on his forehead, “Yes, he’s short…don’t stare!”

I don’t feel bad about his height, why do I when other’s look at him as some experiment gone haywire? That’s how I feel. I feel that by the stares and comment’s that because he is little that he’s a curiosity. I understand. I do.

Children I can give a bit more leverage too. At school, when Jacob and Hannah get out, there will be a group of kids who hover around Knoah. It’s sweet. At one point, Knoah was trying to “run away” and there were 5 or 6 kids circled around him. He had enough room to walk but they created this protective circle so he couldn’t get hurt. So the kids where walking, some backwards, around the playground while Knoah was enjoying the attention.

That is why joining LPA was important for us, to give Knoah an opportunity to grow up around other kids who look like him. Speaking of LPA, in October, Knoah and I are going to the LPA Regional Conference in Springfield, Illinois.

I am so excited!! A weekend get away!

If you want more info, please email me and I can send you the information! We will be going with Sarah and her family, so it will be fun, fun, fun!!!

Ladies and Gentlemen, please stay tuned for a brief announcement…..

Today, I wish to welcome Little People of America’s District 5, Chapter 23’s new Parent Coordinator…

Tonya Sweat!

Yes, thank you, thank you, oh, really, your too kind!!

Okay, enough.

I was elected as D5’s C23’s Parent Coordinator! What does that entail…nothing that I am not already doing. Just now, I have a really cool title to go along with my really cool job, Mom, Friend and Activist!

We will be planning outings, coordinating field trips and meetings. Encouraging new members to join LPA and best of all, join our growing family of friend’s! It is a three year appointment, so you can be sure we’ll accomplish a lot!

We went to the Chapter meeting today and the kid’s had a great time, unfortunately, my camera is MIA so no pictures. We had a great time! I’ll write more about our trip later, I am exhausted!

Forward Friday

I wrote this post on March 6, 2007. In the early months after having Knoah, I sat and ponder the implications of Knoah’s dwarfism, amoung other things. Looking back and re-reading, I find this post really doesn’t have anything to do with Knoah’s dwarfism, but life and the people we encounter.

Sometimes, you see that the train in the distance and you have a feeling it’s going to crash and burn. Your advantage, you were smart enough to stay at a safe distance.

I was sitting around thinking today, like I don’t do enough of it already. I know we will face issues with society in general when it comes to people. There will be those who will be understanding of Knoah’s dwarfism and treat him as a person, looking past his short stature. There will be those who will continually question his intelligence, abilities and standing in society because he is different. Some people will trust him when he says something, others will no doubt want to treat him as if he is unimportant. I expect kids to be mean. They just are. They don’t realize how they can impact other people. It maybe funny to them, it maybe their feelings are hurt, so they want payback.

I wondered how do we counter this from happening? How do we raise him so there is no questioning his thoughts, abilities and motives. Then it dawns on me, wait a second! I am average height, intelligent, articulate, compassionate and honest. Still there are people who look at me or my husband as if we are insignificant. We get treated like we simply don’t exist. More so my husband than I. For me, it bothers me, but ultimately, I DGaF. I really don’t care if someone doesn’t like me. I was raised appropriately, I treat those the way I want to be treated. Openly, honestly and with compassion.

My observation of my husband’s standing in life is this, he is either appreciated or not. I watch him in his daily interactions with people, I listen to other’s impressions of the way he gets treated and I am worried. I mean, we as a family, people try to associate ourselves with people who are genuine. As we talked about this, I learned a few things. He looks for individuals who follow four basic values: to help, respect, trust in and take responsibility for self and others.

I was breaking each one of these down today and came up with a few pros and cons with regards to our situation.

To help: Be of service to anyone you come across. In work, in life, in the community. You must without question always be prepared to help others and do so with a honest heart.

Respect: Always show respect. Regardless of who, what, when, where and why. When you are disrespected, it does not mean you may do so back. Respect is not demanded it is deserved.

Trust In: You have to trust in those you encounter until they prove they are not to be trusted. When you can be trusted, you keep their trust. When it is lost, you can never fully replace it.

Take responsibility in yourself and others: You have to take responsibility for your actions. Right, wrong or indifferent. Show those who do not know or do not want to take responsibility how to. You have to be a model for others. It is their choice if they follow it.

Now reflecting on this, it brings up a few questions and responses.

To help: Let’s say you help. You do so willingly and wantingly. Then it is thrown away by someone who doesn’t believe in this. We have all come across that person, the one who says, I am here to help, but doesn’t really mean it. They’ll help when it benefits them. How do you not let this affect you day in and day out?

Respect: You show respect for another person because they are a human being. You don’t have to like them, but you can show them respect by acknowledging their existence. Then how do you respond when you are ignored, put down publicly and talked badly about. We won’t get into law of slander, but just simply disrespected. How are you suppose to react?

Trust In: One has to trust in something. You car starting everyday, you kid’s behaving appropriately in school, your spouse loving you. You have to trust in something or someone. Then you learn the hard way, you can’t trust those your suppose to trust in. At work, you have to trust your supervisor sees your dedication and extra work. Then you find out they don’t. Your supervisor talking about you behind your back and your still expected to trust them? How?

Take responsibility of yourself and others: Most people are taught early in life that for every choice you make, you must take responsibility for it. That you must show others how to take responsibility for their actions if they don’t. Be a model. Then when you do take responsibility, you still encounter those who want to make excuses for the reason they won’t take responsibility for their actions. They don’t care who they hurt or what they have done. Hurtful words, spiteful actions are a way of life for them. Yet, we are still expected to interact with them.

I said earlier I was worried. Why? What I am describing are things I have seen as an adult by other adults. Not children, not second graders. Fully grow adults who have jobs, influence other’s, are expected to behave within a code.

It maybe because I am a military brat. My family history is steeped in a military way of life. My great-grandfather was in the Army, my grandfather the Navy, my father the Air Force, my husband the Army, my uncle was Chief of Police, one of my best friends is a State Trooper. The CODE. You act a certain way and you will be treated accordingly. You lie, your treated as a liar, your honest, you will be trusted, you help those in need, you are rewarded with kindness. Yet, I know others don’t believe in this or they don’t act like it.

So how do I add that layer of protection on Knoah, given his appearance? That is what people will see first. How do I give him the resources to deal with the world outside my front door when the world is seething with depravity? How do I give him the words of encouragement that the world is good when we, right now encounter nothing but deception?

I as an adult cannot even wrap my head around this. I struggle everyday with this conflict. I want the world to be a peaceful place for all of us, but it’s not. What can I do to make it better?

Mandy has decided to “yell” at me for not updating *Sniffle, Sniffle* …Mandy, a faithful reader and friend would ideally like to see What is Normal? updated every day…or at least 3 times a week.

While I’d like to oblige…oh, well, it doesn’t matter

Knoah is heading full force into the Terrible Two’s. I have known it’s been coming. Little clues like that dreaded stare or the “huffing” sound he makes when he’s irritated, but really kid! He is taking the cake.

A few nights ago, I was sitting in his room on the floor enjoying playtime with him. I try to get onto his level so he can look me in the eyes and communicate with me. Well, he started playing rougher than I wanted…IE…biting me. So I told him to stop….

The Conversation from a mommy’s perspective:

Knoah : Bite

Mommy: “Knoah, NO! We don’t bite!”

Knoah: Eyes wide open, half cocked grin…goes in for another bite…

Mommy: “Knoah! STOP biting me!”

Knoah: Heeding mommy’s voice stops, looks at me and giggles while flapping arms in the air. He proceeds to come in for the kill…

Mommy: “KNOAH!!” Mommy grabbing his arms to hold him at arm’s length away, fearing loss of limb…”KNOAH! I asked you to stop biting me. PLEASE, it’s not nice!”

Knoah: Eyes wide open, lip starting to quiver under the stress. Looks at me with innocent glances. “Agh!” He says with both arms thrown in the air.

Mommy: “Well get mad, but your not going to bite me!”

Knoah: “AGGHHH!” Arms raising up and down, while he is turning in a circle. “AAAAGGGGGGHHHHHH!”

Mommy: Realizing now we are in a staring contest, is determine to not let him win.

4 minutes later….

Knoah: Eyes FULL of tears, but miraculously, not one tear drop. He’s fighting it. The rage welling up inside of him. Lips quivering more intensely, he will not give in…

Mommy: Taking a deep breath…”Knoah, look, this is the way it will be….You WILL stop biting me and you ARE going to cry. You might as well stop trying to hold those tears in and give in. Just let it go dude, your not doing yourself any good by fighting them back. Your two, you cry when you don’t get your way, that’s what your suppose to do. So just let it out and when you do, you’ll give me a hug and I’ll give you kisses and in about 5 minutes you’ll be fine and you’ll forget all about this. So, just let it out, you’ll feel better…..trust me.

Knoah: Pondering what mommy just said, gives in. He cries his heart out with big old crocodile tears and within minutes we were back playing with Match Box cars! He breaks so easy.

The End.

So, as you can see, I have been defending myself from Knoah’s mouth. He has such a temper…today I was at school helping (trying) to set-up for the Silent Auction that is happening tonight and Knoah wasn’t having it. He fussed and yelled, screamed and mommy gave in and brought him home.

School is going well for him! I am actually embarrassed to admit this, but he is doing better than I thought he was. I mean, it’s not until you get around other kids his age that you can compare, but he is doing remarkably well! Especially in the speech department. Right now he is using Knoah speak and sign language. I understand him and sometimes other’s do too. The words he can say are:

Momma, Dadda, Juice, Jacob, Hannah, This, Take This, Thank You, Please.

He can sign:

All done, pointing, shakes his no to a question or item, Eat, Put away, Give it to me.

So between the two, we have a good understanding. I know when he’s upset and I know what he wants.

I bought his Halloween Costume…”Arr, me hearty, me thinks Knoah will be in Davy Jones Locker if he keeps treating this lass the way he do.” Sorry, I can’t give any clues.

Okay, well he is starting to fuss now, I can hear him in his crib yelling…”Momma! Momma! MA! DADA!” This is code for “you better come get me or I’ll have you arm!”

A friend of mine, Dee Dee Allemon needs your help!

Dee Dee and her family were previous contestant’s on the show Wife Swap. Well, they have another chance to show the world that being little doesn’t mean you have to change who you are!

Wife Swap will begin voting on October 3, 2008. Per ABC’s website:

Coming this Fall…The Wife Swap Viewer Vote!

You have the chance to help pick the families for a very special 100th episode!

24 families have put themselves up for a reswap and we are asking you to help decide who should swap again.

During four weeks of voting, families are eliminated until only four remain.

Voting takes place on ABC.com starting Oct. 3rd, coinciding with the season five premiere of “Wife Swap,”and will run until October 24th, 2008,

Viewers have the opportunity to vote 24 times the first week, 12 times the second week and four times the third week.

Phase 1 — Oct. 3, polls open at 12:00 noon PT and close Oct. 10, at 2:00 a.m. PT, 24 families will be voted on to narrow the eligible families to twelve.

Phase 2 — Oct. 10, polls open at 12:00 noon PT and close Oct. 17, at 2:00 a.m. PT, twelve families will be voted on to narrow the eligible families to four.

Phase 3 — Oct. 17, polls open at 12:00 noon PT and close Oct. 24, at 2:00 a.m. PT, when viewers vote on four families.

From the final four which two families end up swapping?

You’ll have to tune in to find out.

Help decide Wife Swap’s ultimate swap.

The Wife Swap Viewer Vote coming to ABC.com on October 3rd 2008.

This is a post I made January 15, 2007. We had just been released from the hospital from the “un-explained” ALTE.

I can remember the doctor looking at me with this 6 week old boy, who, by all accounts looked “normal”. They started to run tests and during one of the MRI and CT scans, they found a Subdural Hematoma. A brain bleed. They asked the routine questions about who cares for him, who is usually alone with him, is there any physical violence in the house….I was okay with that. It’s their job to ask questions when they may suspect child abuse.

They proceeded to ask me about my labor and his birth. Now, obviously, he has a large head. It was large at birth…prompting the emergency C-Section. He was bruised after his birth from my pushing and he not wanting to come out the right way.

But where they really upset me was when they wanted to release us some two days after we were their, but 4 days after admitting us they started asking questions again about the Subdural.

How in the hell are you going to ask me AGAIN about child abuse when you were willing to let me walk out of the hospital with him two days ago?! That doesn’t make any sense! So, a week later I sat at home, looking at Knoah on his apnea monitor and wondered, was I proactive enough.

Everyone knows I read everything I could about dwarfing conditions prior to his birth. I know what complications could occur. I knew, based off my limited medical knowledge they suspected child abuse, but more specifically Shaken Baby Syndrome. SBS will be present in an infant who has been violently shaken by a caregiver. Doctor’s will see broken bones, bruises and yes, the infamous Subdural. The one thing they didn’t want to take into account was his Achondroplasia. They didn’t want to look at his Foreman Magnum, they didn’t want to look at Hydrocephalus. I forced them too. I had Will bring my all my papers and I went to the Doctor and shoved them in his face. I didn’t want to seem rude, but there came a point when I realized at the end of the day, if we were to lose him, they wouldn’t have to experience burying him, I would.

BE PROACTIVE!!!

This is a post I made to POLP2, although I use the word dwarfism, change it to disability and it is a starting primer for those parents just entering the world of their child’s disability, whatever that maybe!

Just starting down this road, I have been forced to look at things
through from a different perspective. My hope is to give new parents
somethings to consider when experiencing the medical aspects of
dwarfism or any disability concerning their children. Although I am just over 24 hours of
being home with Knoah, I have begun to reflect on my experience.

ALWAYS follow your gut instinct: You know your children. You know what
they do and how they act. If something is not right, you should seek
medical attention immediately. Even if it turns out to be nothing,
don’t ever chance it. You may not get another opportunity.

Read everything about your child’s dwarfism: Find and contact a doctor
who specializes in dwarfism. Ask for medical journals and articles that
pertain to your child’s genetic condition. Make copies for your
pediatrician. Insist they read it. Look for information that deals with
growth and charting, development, cognitive and developmental. Look for
community resources for additional information IE, Health Department,
Non-Profits, Medical Centers. Your local Health Department and
Department of Human Services or FIA can help determine if your eligible
for additional money or help with medical expenses and daily living
expenses. Also consider Social Security benefits.

If you experience a medical emergency: Do NOT hesitate to give the
hospital doctor’s information regarding your child’s dwarfism. Do NOT
let them discount it simply because the think it has nothing to do with
why you are there. Explain to them that they cannot discard it until
they rule that out as a cause. If your doctor’s are not familiar with
your child’s dwarfism, insist they consult a doctor who is. Do not take
No for an answer.

Know that your are not trying to cause trouble: You are protecting your
child. This is YOUR child. Your brought them into the world for a
reason and you are simply trying to keep them here. Never feel guilty
for being an advocate.

Find a doctor who specializes in dwarfism: Contact a Bone Dysplasia
clinic and make an appointment to have a doctor follow your child’s
progress. You can keep your pediatrician and have a specialist
concerning your child. One deals with colds, the other deals with bones.

Find a local LPA group in your state: Get active! Not only will you be
getting help for yourself and your family, but you may just help
someone in the future.

More to come, I am just trying to stay awake, it’s only 2:30am. You
know, trying not to freak out being home!

Tonya- A Very tired mom to Knoah (achon), who is only 8 weeks and
determined to give his mother a heart attack, before being a
heart-breaker to all the girls of the world. SIGH, Breath…

“I WILL NOT WEAR A DIAPER ANYMORE!”

Oh the joy! I think Knoah is getting ready for potty training! He is throwing a fit when I change his diaper, meaning he doesn’t want to put it back on. So, this weekend I bought him some undies to start the process!

I am super excited about this…not potty training, but the undies! While on the site that causes me to spend money easily I managed to find him boy underpants that have a waist of 12-15 inches! Their suppose to be like XXXS. YEAH!!!!

I bought some in different colors to help peak his interest in this potty training thing.

I also bought him a potty chair.

Obviously, short legs mean not the average potty chair will work. If we are going to be successful, he will need a chair that he can reach by himself. So I bought a Baby Bjorn Little Potty. It has the shortest height and in time he will not need help using it.

The other day he was walking around bottomless…yes, you know where this is going…and I thought, “Oh, let me put him on the potty so he can wee…well, wee he did…on my rug!

He seems to want to mark his spot, so he marked it Hannah’s room, the Kitchen and the hallway.

AGGHHH!

He keeps taking his diaper off and the kids are not helping! They will scream and laugh and follow him around the house yelling “MOM! Knoah took his diaper off and I can see his wee-wee…” Knoah loves this kind of attention and proceeds to grab his butt cheek while chasing them around.

I am not even getting into the fact that he’s a boy and well, ladies, we ALL know what boys love doing…so, now I have to get him to stop grabbing at himself and…sorry guys…YANKING.

It’s not just any yanking, it’s yanking and stretching…I am like, “Knoah, it’s not a rubber band…”

Amy asked this question:

I was checking out the BabyBjorn site and this potty. What is the difference between the one you ordered and the potty chair? Things have changed alot since I had my other two boys and if this brand seems to be easier to use, I’ll give it a try. Just trying to figure out which to order. Opinions?

Any suggestions for her since I haven’t recieved ours yet?

Every Friday I am going to bring up posts from oh so long ago to change things up.

With the kids being in school and I volunteering my time, the days are not long enough!

Forward Friday will be just a random post from the past, I like to see what I was going through then compared to now. It’s a learning moment.

Knoah and daddy. Knoah was about 15 hours old!

Posted December 31, 2006

My life, that is. As a teenager, I would daydream about my life. We all did. Who I would marry, what my kids would look like, how I would dress them, how I would raise them. You can say my vision included my son a being a little sk8ter boy and my daughter rocking rebellion to the day is long. In someways I got my wish. My son is a little sk8ter or he tries to be. Hardcore he’s not, but gentle and kind. The kind of kid who looks tough but is the kid who is always telling his mom he loves her. I love it! My daughter, standing up for social injustice. Protecting the meekest and mildest of us all…okay maybe not “US” but if you have four legs, she’s got your back! Unless your a worm, then she’ll hold you till you dry up.

I didn’t envision being a mom to a child that some could call questionable. I didn’t think I would have a baby that some can say “isn’t right”. Then again, if anyone of my siblings were to be in this position, it should be me. In a lot of ways, Hannah, my daughter, is a lot like me, except the four legged part. I stand up for those who cannot themselves. I voice my opinion to give those who do not have a voice a chance.

I was standing in the kitchen yesterday, holding Knoah and dancing with him. Thinking about his life and how I would like for it to turn out. Because we know our children’s lives never turn out the way we want. I made a vow to myself long ago, that if I were to ever bring children into the world I would try to teach them to speak their mind. Hum, is that what I really wanted? Yes. My children have learned to speak their minds. I am going to do the same thing with Knoah. I know he is going to be stared at. I know he is going to be looked at as strange or different. I know people are going to point him out. He is going to need a thick skin. I use to think I was in the minority being bi-racial. I thought I stood out in crowds, especially in Monroe. I could not tell you how many times my husband and I walk into a building or function and you can bet 99% of the time I will be the only black there. I know how Knoah is going to feel. Granted, I never had to outwardly deal with people pointing me out or making my race something to be gawked at. Most people are use to seeing African Americans, Asian, Hispanics, etc. Most people have never met a dwarf. The condition is so rare, that it is estimated that worldwide there are only 195,000 people with dwarfism.

I never included in my daydreams a little person.

Is my life what I expected. No.

I worry about Knoah’s health. I worry about my son’s safety. I worry about my daughter’s education. I worry about my husband’s employment. I don’t know what tomorrow will bring. There is a lack of stability in our lives that threatens our survival. At any moment, our world could be shattered.

I sometimes wonder if I would change things if I could. I would. I would have encouraged my husband to not change jobs. I would have pushed earlier in the pregnancy that it was not progressing as it should have and something was amiss. I would have home schooled my children, instead of placing them in public school. Yes, I would change a lot of things. You make decisions based on what is best for your family. Usually, they work out to your advantage. It is those rare occasions that make you wonder why you thought you were doing a good thing.

Is my life what I expected? Definitely not.

My children, my husband? Yes. I know what to expect from them.

Andy and Clare have posted more about their “American Adventure“!

Go over and see what they have said!

All over the place, actually!

Do you like?

I have to admit, with all the blogs popping up, I can’t keep up! I try. If I haven’t commented on your blog in say, weeks, it doesn’t mean I haven’t been there. I keep up with all these precious children, I just don’t always have time to comment!

So, I still love each and everyone of my blog buddies, I am a blog junkie, I’ll pop by soon and let you know I have been there!!

In the meantime, where can you find me?

MySpace.com:

http://www.myspace.com/knoahsarc

Facebook.com:

http://www.new.facebook.com/profile.php?id=1034130389

And, as always, here!