So much has happened over the last year and without bombarding you or myself to re-tell it all at once I will gradually share bits and pieces of our life as we have now come to know it. I don’t know why and won’t question it, but I knew, when I was ready to share and to blog about it, I would…I just didn’t think it would happen at 3 in the morning on a Tuesday. Guess that’s just they way it goes.

In brief, it is 3am and while the rest of the world sleeps, I am awake. I was woken by Knoah saying “Momma…” I simply asked him “Do you have to pee?” He responded with “Yes!” Ok then…it’s to the bathroom we go.

One of the things that I was concerned with when we had Knoah, was how my marriage would fair. I never blogged about it and I will find the article I read, but it basically stated that nearly half the marriages that had a child introduced to the family with a disability will fail. It was never really specific as to the reason why, but it basically summoned it up to stress, the financial issue and other reasons. We all know, if you had been a regular follower of Knoah’s ARC that, financially, we were never in the best position. When Will lost his job, everything else took a downward spiral into the great abyss of hell…

Making the decision to give up the house, while painful, was the least of my concerns. We had a home we could make our own and while it wasn’t my grand Victorian, it would do. Things never turn out the way we ever envision them too, hence the original blog name “What Is Normal?”

In short, although not officially signed yet, on June 23, 2010, Will and I attended our final divorce proceedings.

I will share my reasons for asking for the divorce, as I see it. I will share Will’s blog and the way he sees it and I will share how the children are handling it. The good, the bad and the dirty.

So, there you have it. I stopped blogging during that time because I know how I am. Blogging is a way for me to vent, share my feelings and make sense of my surrounding. I’m not going to say I kept it bottled up, I just didn’t share it here. I have a wonderful support network consisting of people around me, both near and afar! Although, I don’t routinely call on them when I have a problem, they know when I need them.

I don’t really know right now what else to say. I guess just that…I think that’s a fair start, don’t you?

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children.

Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger. “Armstrong, Beth; son; patron saint, Matthew. “Forrest, Marjorie; daughter; patron saint, Cecelia. “Rudledge, Carrie; twins; patron saint…. give her Gerard. He’s used to profanity.

” Finally, he passes a name to an angel and smiles, “Give her a handicapped child.” The angel is curious. “Why this one, God? She’s so happy.” “Exactly,” smiles God. “Could I give a handicapped child a mother who does not know laughter? That would be cruel.”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.” “I watched her today. She has that feeling of self and independence. She’ll have to teach the child to live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.” God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps, “Selfishness? Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says “Momma” for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.”

“I will permit her to see clearly the things I see—ignorance, cruelty, prejudice— and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her patron saint?” asks the angel, his pen poised in midair. God smiles. “A mirror will suffice.”

While in NYC, I had several opportunities to participate in discussions that affect LPA and the dwarfism community.

I did not set out to become an advocate, more likely, I became one because I was thrusted into a world I knew nothing about with the birth of my son, Knoah.

During one of our Advocacy Meetings, we engaged in a discussion regarding a “hot topic” surrounding LPA and past historical events. We also discussed the “M” word or Midget for those unfamiliar with the reason it is now referred to as a letter in parentheses.

When “Celebrity Apprentice” aired April 5, 2009, my husband and I saw the episode. We typically don’t watch this sort of reality TV, but when we tuned in and watched the first few minutes, we knew it was not going to be good.

Repeatedly, contestants were asked to come up with a “viral video“. A video that would prompt wide spread viewing and conversation. Well, they accomplished their goal.

Using All’s Small and Mighty as their theme both groups came up with the idea to use Little People as actors. This was not an issue, it was the fact that both groups referred to the LP actors as “Midgets”. Over and over again, this word was used throughout the show, even though it was mentioned that using such a word would be considered offensive. Yet, they continued.

As a parent of a little person, I am offended on several levels. One, doesn’t a network have a responsibility to the general public to air material that is suitable for all viewing audiences? Did NBC cross the lines by airing the show?

Simply put, I am just offended that they would refer to a Little Person as a “Midget”.

To understand, lets look back into the history of the word to see how it has evolved.

Throughout history, little people have been referred to as midgets, dwarfs, circus acts,
munchkins, oompa loompas, mini-me, tiny people, and many more comments that some little
people may find offending. In the 19th century, midget was a medical term referring to an
extremely short but normally- proportioned person and was used in contrast to dwarf, which
denoted disproportionate shortness. Like many other older medical terms, as it became part of
popular language, it was usually used in a pejorative sense. When applied to a person who is
very short, midget is now often considered offensive.

Dwarf is an ancient word dating back many centuries. In the unabridged Oxford English Dictionary
(OED), the meaning of dwarf is straightforward and neutral: “A human being very much below the
ordinary stature or size.” The dictionary traces uses of the word as far back as the year 700. By
contrast, midget was coined only in 1865, and its definition goes to the heart of why it is so deeply
unpopular: “An extremely small person; spec. such a person publicly exhibited as a curiosity.” In
other words, it’s impossible to think about the word midget without placing it within the context of
the freak show, of the circus, of Midget Villages, and of Munchkins traipsing about the Land of Oz.
Then, too, the root of midget is midge. And as the short-statured artist Jacki Clipsham puts it, “A
midge is a small insect that can be killed with impunity.”

For some reason, midget has another meaning as well. It refers only to a dwarf whose limbs are
in the same proportion to his body as an average-size person’s–generally, to people whose short
stature is the result of a hormonal deficiency rather than a genetic bone anomaly, as is the case
with achondroplasia and other skeletal dysplasias. Because midget was coined at the height of
P. T. Barnum’s career, and because his most famous performers, Charles Stratton and Lavinia
Warren, were proportionate dwarfs, it is often assumed that it was Barnum himself who came up
with the word. There is, however, no evidence for that. The word midget did not appear anywhere
in Barnum’s 1855 autobiography, The Life of P. T. Barnum. In fact, he referred to Stratton
repeatedly as a “dwarf.”

The OED is cryptic as to the 1865 origin of midget, attributing it to “W. Cornw. Words in Jrnl. R.
Inst. Cornw.” Thanks a lot! But the dictionary entry also notes that, in 1869, it was used specifically
to refer to a small person in Harriet Beecher Stowe’s novel Old Town Folks: “Now you know
Parson Kendall’s a little midget of a man.” Stowe’s usage may, in fact, be the true origin of midget.

As to Barnum, to the best of my knowledge he did not coin the term “midget” &, as you know, used
the word “dwarf” when referring to the Thumbs, Nutt, &c. I have seen him use the word “midget” in
a few of his letters written toward the end of his life–the 1880s–but he must have picked it up from
someone else. He was a great reader, of course, & knew the Beechers.

The deep unpopularity of the M-word is a fairly recent phenomenon. Indeed, in the freak shows of
the nineteenth and early twentieth centuries, dwarf had a more negative connotation than midget,
according to the historian Robert Bogdan, because dwarfs were farther down the pecking order,
and were assigned more degrading roles:

The terms midget and dwarf had important social meaning in the amusement world. Small
people who were well proportioned–”perfect humans in miniature”–in particular coveted the term
midget for themselves as a way of disaffiliating from the more physically deformed dwarf exhibits.
For midgets, who were typically cast in the high aggrandized mode, to be called a “dwarf” was like
being called a “child”: it was an insult. “Dwarfs” were associated with exotic freak or circus clown
roles, and these roles “midgets” shunned.

As we have seen, the word had not fallen into disfavor even by 1957, when Billy Barty held the first
get-together for dwarfs under the name “Midgets of America.” And when it turned out that many of
the people who showed up in Reno were disproportionate, Barty’s solution was to change the
name to Little People of America–not because midget was considered offensive, but because
Barty wanted a name that both proportionate and disproportionate members, midgets and
dwarfs, could accept. Soon, little people became the preferred term.

http://www.shortentertainment.biz/LittlePeopleHistory.html

So, as far back as we can see the word “Midget” has been used medically and descriptively to describe a little person. So what’s the problem?

The problem is, that as times change, so do words. In the 50’s and 60’s as the term Midget shifted over to Little people, it also became unacceptable to call blacks Niggers or Coloreds.

According to Websters the term was commonly used to refer to a person a short stature who was physically proportionate. However, over time, people within the general public began using this word in a manner to degrade someone IE: “Mental Midget” meaning less than. You can come up with all sort of terms and phrases that that demean and belittle a person if you choose, so a word no longer becomes descriptive but a pejorative.

Medically, this word is still used to describe a person of short stature who is physically proportionate.

Following the airing of “Celebrity Apprentice” an outcry was heard from people within the dwarfism community.

Newspapers across the country started to pick on the press release and the public, voiced their opinions. Even Perez Hilton got into it and voiced his opinion of “Fight on!”

Then you look at comment by readers….

Having a child that the public would call a Midget I am curious as to why a person would refer to another person in so demeaning of a way. I haven’t done it. I wouldn’t look at a person with Cerebral Palsy and call them a Retard. I wouldn’t look at a Gay man and call him a Fag. I wouldn’t even look at someone of my own race and call them a Nigger, but I have been called it.

“Sticks and Stones may brake my bones, but names will never hurt me”….

No, your right, they are only words and we give them power if we let them.

Then we have a celebrity like Cheryl Burke who openly says “I gave you the whole Midget thing” when asked about her comments about Verne Troyer and a certain video that was released.

Why do people feel it’s “okay” to make fun of Little People? Why do people feel that they can call someone any old thing they want because it’s “funny”?

In a recent Salon.com interview I participated in, Lynn Harris asked me why I compare the “N” word to the “M” word and I told her.

Being a Bi-racial women, who father is black and mother is white, I am all too familiar with being called derogatory names. On one occasion, right before the 2008 LPA National Conference, my father came over for a visit and asked what we were doing. We were packing for the National in Detroit, Michigan. When I told him we were going to spend a week in Detroit for LPA he says “Oh, your going to spend the week with a bunch of Midgets”…..my mouth hit the floor! I was stunned.

I, internalized what I had just heard and was seeing. My father, a 6 foot 4 black man, the stereotypical man who was not invited over for dinner when my parent’s met. I asked him why he would say that. He, embarrassed, looked at me as asked, “isn’t that what their called?” I replied calmly and said “No, they are Little People, more importantly, they have names just like your grandson.”

After talking, I soon realized that in the era he grew up in it was acceptable to call a Little Person a Midget, as was calling a black person a Nigger. So, I started equating the “N” word with the “M” word.

Just because it was acceptable doesn’t mean it still is.

Calling a Little Person the “M” word is demeaning, belittling and objectifies the person. It casts the aura that Little People are not real people. They are to be made fun of, laughed and pointed at. Joked about.

My son is NONE of those things. He is a person, who as he grows will come to understand his feelings and will become more aware of the world around him.

The next time you pass a Little Person on the street, don’t stop and stare, don’t stop and ask for a picture, because they are not novelties to be shared with friends, they are men, women and children, who have jobs, have families, make a living just like you do.

A Little Person maybe lacking in height, but most were given something the rest of us were not. Understanding of differences and acceptance of all people, short, tall, black or white.

This is my son Knoah and that is what I would like you to call him.

One of the issues of having a child with a disability is making sure to have insurance to cover the massive medical tests and bills that come with such a child.

During Knoah’s first hospital confinement, in the flurry of paperwork, I filled out paperwork to get Knoah Medicaid. I don’t remember doing it, but he does have it.

So, when Will became unemployed, we also became uninsured. Although, to be fair, Will was told he would have insurance until the end of September. Then the having insurance ended up being a part of the “Release” they want him to sign. So, effectively, we are uninsured.

Illness and catastrophic medical crisis’s as most of us know can occur at anytime. One moment your breezing along life, then next your sitting in the emergency room waiting to be admitted to the hospital for one reason or another. All the specialists and doctor’s your child has seen in the past vanish and the torment of having to re-educate new ones seem daunting and cruel.

Now this raises the question, if you or your child is uninsured, what do you do?

Apply for Medicaid. Medicaid is a Federally and State supported insurance program that helps medically needy individuals attain the medical support they need.

Good health is important to everyone. If you can’t afford to pay for medical care right now, Medicaid can make it possible for you to get the care that you need so that you can get healthy – and stay healthy.

To find out if you or your child is eligible for Medicaid, please visit this website.

To find out what programs your state offers, click here.

In Knoah’s case, he is covered by Medicaid and State Children’s Health Insurance Program (SCHIP).

Having at one time, three insurance policies, what our primary didn’t cover, it would fall to Medicaid and what Medicaid didn’t cover, SCHIP did. However, there are pitfalls to this.

In the case of Knoah TLSO brace. Our insurance would only cover 50% of the brace, which left approximately $1400.00 to be paid. Since Medicaid doesn’t cover Orthotics, SCHIP covered the rest, leaving us with no out of pocket expenses.

This is all fine and well, but where do you start? You need to visit your local Department of Human Services or DHS or Department of Health and Human Services to fill out the paperwork. From their they will guide you through the steps of the information you need to bring or supply them with to help them figure out what services your eligible for.

Now, for my rant…

I am SO not looking forward to finding new doctor’s for Knoah. Medicaid should cover most of his original doctor’s, but what if they don’t? I am going to project here:

Imagine…walking into the examination room, waiting for the doctor to come in. After what seems to be hours, they walk in. The examination starts with routine questions, the first of which is, “so, his chart says he has Ach..On……

Me: Achondroplasia

Doctor: Right, what exactly is that?

Me: Blank stare

Me: Explains Achondroplasia and physical features

Doctor: Yes, I have read about that, blah….

Exam starts

Doctor: His head is rather large, has anyone ever mentioned Hydrocephulas?

Me: Tilting head to the side, determining what I want to say:

A. “Did you actually hear anything I just said or are you assuming just because I’m only a “mom” that I have no clue about my child’s condition or what complications can occur?”

B. “Hydro…what? He’s 21 months old, of coarse I wouldn’t let him participate in a sport like that! That sounds dangerous! He can’t even swin yet!”

Me, wanting to opt for a refined version of the two…

Me: Yes, we know but according to his Geneticist’s his head is average amoung achons. I do have a question though, you don’t think water entered his ears and is now stuck in his head, do you?

Oh the TERROR of having these conversations again!

Not fun!

Several hours later….Well, there is good news, I just got off the phone with Dr. Pauli’s assistant, Casey and we are good to go!!!

WOO-HOO!! At least one of his doctor’s will not change! Such a relief!

Candi left a comment that I think will be helpful to some readers:

One thing I would add is that it seems that if you are anywhere near a teaching hospital, they will usually help you out and care for your child when achondroplasia is diagnosed whether you have the ability to pay or not. It seems that the doctors that really know about dwarfism and learn about the condition truly care that these kids get what they need above all else, including payments. There can be a little difficulty when it comes to testing, etc…because unlike doctors, hospitals want their money….but the doctors themselves seem to have no problem helping these kids with what they need. So, if your readers feel they are at a dead end and can’t seem to get help – find a teaching hospital with a doctor who treats kids with dwarfism….even if you have to drive a hundred miles to do it. They will find a way to help you.

Candi
YaYa to Bryan

I was selected by Melissa Swartley who writes 3 Pretty Girls. THANK YOU!!!

My job today is to write 7 things most people don’t know about me. Well, most people know a lot about me because I usually share everything anyways, but I will try.

1. I currently have 8 tattoos and 2 piercings. I tend to lend myself to the “Alternative” lifestyle if you will. My favorite radio station is 89X and I have listened to it for the past 20 some years…I know this dates me I would have my hair crazy colors like blue, pink, and bright red of society wouldn’t look at me funny.

2. I am addicted to my phone. It is said it is an extention of my hand, which most times it is. I have a G1 and think it’s the GREATEST phone out there,

3. My favorite color is black. I most of the time wear a tee-shirt, jeans and a hoodie, along with a pair of Doc. Marten’s. I LOVE Mustang’s and they are the only cars I can force myself to buy, although I do see this changing soon . The kids are getting bigger and the car is getting smaller.

4. I HATE cold weather. I HATE the snow and understand why I am in Michigan. My ancestors have been here for hundreds of years. I am part Indian and the tribe my family comes from is the Potawatomi, which is native to southwest Michigan. That doesn’t mean my blood is. The blood running thru my vains is all southern.

5. I am taking 14 credit hours this semester, which now seems crazy. Luckily, one of my classes is a film class, so we watch movies. YEAH!

6. I live on coffee. I have to have it every day, all day.

7. Since October 2009 I have lost approximately 23 pounds!!

So, I have to select 7 bloggers to nominate and will do so now.

They are:

Destiny and Rose

Paula

Kasia

Jeff

Amy

Andrea

Laura

Rules are you must post 7 things about you that most people don’t know and provide a link back to this blog.

The verdict: It went fairly well….not as many issues as previous times, however recurrent issues are still present and new ones popped up.

So, Knoah’s Good Report!

1. His legs are still straight! YEAH!!! Typically some children with Achondroplasia will have bowing of the lower legs. This is due in part to the Tibia and Fibula. The Tibia, while not directly affected by Achondroplasia is still shorter in an LP than an AH person. The Fibula, continues to grow at a “normal” pace. At the point when the Tibia and Fibula start to pass each other in length, the Fibula starts to bow and causes the Tibia to bow along with it. The usual fix to this is surgery to brake the bones, set them in pins and rods to straighten out the legs.

So, no issues there!

2. Head size is good. He is at 56.7 cms, which puts him on the Achon growth chart in the 65% percentile. Which is good! Hopefully his head size has started to slow in growth.

3. His weight is good. He is 30 lbs, which still puts him on the smaller end of the spectrum, but compared to weight and height he is just under the 50% percentile, so he has caught up a lot!

Now, issues, which still remain plentiful…

1. Wrists: Knoah’s wrists are still very flexiable. Which means you can take his hand and bend it back toward his forearm and have the back of his hand touch his arm….BLAH. Dr. Pauli said that while this can happen it’s uncommon especially at Knoah’s age. We have to monitor this as he gets older and as he enters school. With writing, this can cause an issue with fatique of the wrists and hands. We may have to look at accomdedating him with less writing assignemnts to prevent the stress on his wrists. Worst case senerio is we can brace his wrists to prevent them from over extending.

2. Agh! He just had sugery June 22 to have his T-Tubes or ear tubes replaced for the 2nd time. We know get to do it again. One of then have already fallen out and the other is on it’s way….Nice.

3. Breathing. He is a snorter. Dr. Pauli said it at our first visit and he still hasn’t grown out of it. Even with his Tonsils removed and Adenoides removed twice, he is still a very loud sleeper. Doctor Pauli said that if his breathing starts to become worse or I start noticing an increase in his sleep apnea, to obviously get him into to have a sleep study, but for right now, as long as his sleep is not affected to not worry. His coloring has looked very good and I haven’t has any concerns other than the Achons snore, which can be quite loud.

4. Finally, his back. Agh. The “short version”. We can continue bracing therapy, with the expeectation that to see any type of measurable improvement, he will be in a brace at minimum another 2 to 3 years. I explained that *if* I saw some improvement during the last three bracing therapies, I would be more apt to continue bracing. However, with the last X-ray only showing a correction of 2 degrees, I fel I am tourturing him more than helping him. Even if we continue to brace there is no guarentee he will avoid surgery. If we do not brace, as he is doing quite fine mobility wise, he will have surgery by the time he’s 8. So, we have some decisions to make. His curve right now is hovering about 68 degrees or so with some correction of 20 degrees lying on his tummy. Personally, I think that’s the way to go, but I will leave that for another time….

So, other than that, Knoah is Knoah, just as ornary, just as bossy, just as adorable!

Even though I was able to take the kids bowling last weekend it had been a while since I had spend more than a few hours alone with Jacob, Hannah or Knoah. Work and other commitments had kept me at arm’s length from them since Christmas . . .

WOW, look at what I missed! With Tonya out of town working it was a great opportunity to simply enjoy being around the kids. After working sixteen on Friday it was awesome to pick them up Saturday morning from Tonya’s Mom (PS – thx Carol, Bonnie, Frank and Frankie for helping).

First order of the day . . . Getting cleaned up and changed for the challenges that would face us.

Jacob who is becoming more and more of a young man with each second needed a haircut and thankfully this is a skill that I am capable of doing. So after a bit of cajoling Jacob walked away with an acceptable Fort Bragg, 82nd Airborne (Hooah!) high and tight! (OK, I said I was capable and had the skill, I didn’t say I wasn’t limited . . .).

The brood, collectively known as “Jannob” were all showered and changed and ready for the day. . .

It was time to decide something “fun” for the kids and I too do.

Sadly, living in Michigan in January can be hard, especially when the temperature is somewhere around 18 degrees it limits what you can do. Thankfully if you become creative you can find some cool and even reasonably priced fun things to do. We discussed it as a group, planned it out and chose to go to “bounce mania” at the Monroe Multi Sports Complex.

Bounce Mania is a way for the ice rink in Monroe to stay afloat.
Instead of keeping a sheet of ice frozen and paying all the money out for that they simply cover the floor with indoor outdoor carpeting and put up some industrial grade bouncers. Charging each kid 5.00 a day to enjoy the “bouncy” fun is keeping them in the black and giving parents some great things to do. Knoah took to the bouncers with great zeal and even enjoyed the end of the rink where they had basketball rims and soccer net set up. Jacob and Hannah, because we live in such a small town, ran into friends they knew from school so they were off enjoying being autonomous, so much for being “with them” eh? Jacob went off and played soccer with his friends, scoring at least one goal.

The one thing that is always amazing to me is what Knoah seems able to do without trying. Look, I know he is cute . . . look at his Mom, it isn’t his fault! But, it’s more than that . . .

Wondering out loud as the parent of a Little Person I sometimes hate the show “Little People, Big World . . .” not because it isn’t cool but because now so many people think simply by watching the Roloff’s on TV that they can come and approach a child that may look like they are a Little Person. Of course that happened to us at Bounce Mania. I can’t judge or speak for anyone else but it is always strange to me when someone comes up and says, “he’s like that little boy, Zack from little people, big world, isn’t he . . . oh, he is so cute . . . can I take his picture?” Tonya is so much better at this than I as she can be a wonderful advocate and politician. Me, I want to simply be left alone with my kids. But, I decided to play, “WWTD” or “what would Tonya do” when I was approach by a mother admiring Knoah. As expected she was aware of veering you would ever need to know to be around a child who has Achondroplasia as she watched the Roloff’s. OK, her assumptions were a bit off. No, Knoah was not just like “Zack” (Little People Big World), No; Knoah was not so fragile that people needed to give him 20 extra feet of play space. No, Knoah is not more intelligent than other kids his age and does not possess some special “insight” that only people “like him” can have. After a few minutes of talking and listening I decided that the best course was to simply smile, thank her for her interest and ask that she not take photos of Knoah on her cellular phone and that she please refrain from pointing at him. This was the first incident I have had like this without Tonya being there to intervene and I pray I handled it OK. Course, it does beg the question . . . “what the hell is wrong with people that they think they can look, stare, point and ask question about our children?”

Any who . . . Knoah had a great time with the bouncers but quickly discovered that they had a small arcade that contained his first love, sort of anyhow. . bowling! Even though it was a video game it was “bowling” and that was enough for him. We bowled a few games, had some juice (side note; if you have not tried the Ocean Spray Cranberry – Grape juice you need too. It would, of course, be better with Vodka . . but is still nice as a standalone). Amazingly, Knoah also discovered a “Circus” shooting game that he proved to be very good at. So good that he managed to set the daily high score. OK, he was the only one that played but it was still a good picture!

Jacob and Hannah were awesome with Knoah as we played in the bouncers. I was able to climb into one of the bouncers and play with the three of them for about 15 – 20 minutes before I remembered that I was really way to old and fat to be inside a bouncer!

After the bounce mania we decided it maybe a great idea to eat something. Of course the kids thought “McDonalds” would be the best option, especially the one with the playland, as Jacob pointed out. Thankfully we settled on Ruby Tuesdays where we all had a great meal. I have found that Knoah and Hannah are loving eating salads and considering my current desire to decrease my girth this fit in wonderful!

After a wonderful meal we spent a few minutes wondering Wal-Mart where everyone picked a new toy and then headed home. Once at the house nobody seemed too tired so it became fun to simply have a slumber party in the living room. Thanks to the Dallas Cowboys and Philadelphia Eagles we had something to watch on TV, for a few moments (for those out of the loop the Cowboys CRUSHED the Eagles). Once the game was out of hand the four of us began to play fun games which lasted until Knoah began playing the “fart” game. Seems this game involves Knoah sitting close to someone and then “farting” and laughing once he does. . Yeah, it’s odd to hear Knoah say, “dat’s funny”.

After a couple of “toots” we all fell asleep.

Waking Sunday with Knoah, Hannah and Jacob all in arms reach was the greatest thing that I can imagine. We quickly decide to go do something fun. I had to pick up somethings from my parents house so the four of us set out.

After a day of shopping and playing it was time to eat. Thankfully, in the grand tradition of Ron White, I had a “coupon”
http://www.youtube.com/watch?v=u7WLfY2455o and we were able to spend some time with our favorite rodent; Chuckie Cheese. It is always cool to be at Chuck’s house. Of course with the kids this never goes off without a hitch. Simple things they are . . Jacob being angry that he cannot ALWAYS win at video games. Knoah being angry that the games are not HIS size. Hannah, ok, she simply does not care and just wants to run around getting tickets to by the little rubber snakes and lizards that you get.
Knoah, being Knoah, did what he did best. He found the one game that was built for him . . . Sponge Bob Bowling! Of course we all had a great time and were able to spend so much energy that once the kids arrived home they were calm, even sleeping in the car on the way.

What a wonderful “lost weekend”. . . . Too bad this wasn’t everyday

Since I cannot possibly give everyone a gift, I offer this; advice.

I have found during the three years (WOW!) of doing What is Normal aka Knoah’s ARC, this post has been the most important!! My single goal in life is to make sure the all babies, particularly ones with Achondroplasia live full and happy lives. We have to get them there. Some will does so without a thought, others will struggle and think “why me?”….

This is OKAY! You were blessed with a child who is more special than anything you will ever know. You have entered a world that will bring you may friends, prayers and best of all a “new” family!

A new year is coming and babies are still being born, so to keep them safe and with us, this is my gift to you!

Merry Christmas!!

*Note: I am not a doctor and any questions regarding these or any other tests should be directed to your doctor!!*

Being a new (now old…lol) mom of a child with dwarfism, in particular, a child with Achondroplasia. One of the questions that gets quickly asked is “What tests should we have done?”

Right from the start, these are common, known recommendations, along with the reasons why. Most of these can be found in Health Supervision for Children With Achondroplasia. Which is also found on the sidebar.

Right after receiving the diagnoses of Achondroplasia, several tests should be preformed as a matter to safe guard your child’s health and well-being. Achondroplasia is not just a visual impairment (one you can see) but it is a physical impairment. A child with Achondroplasia is structurally different than an average height child. Common placement of bones are located and grow differently than in a person who is average height.

In no particular order:

1. An MRI of the head, neck and spine.
- The reason for this is to check the Foreman Magnum (FM). The FM or Cervico-medullary Myelopathy is located at the base of the head and neck. In an average height person, the FM is usually perfectly round. The spinal cord runs through the FM and connects to the brain. For an average height person, the FM doesn’t draw concerns from the doctor’s unless there is an abnormality, as in Achondroplasia. People with Achondroplasia have a smaller than normal FM. Instead of opening being round, a person with Achon has a FM that is shaped more like an old-fashioned key hole. It is wider at one end than the other. If the spinal cord gets trapped in the smaller end of the FM, death can occur due to the brain failing to get the signal to continue breathing. The spinal cord basically gets pinched.

Compression at the foramen magnum – the bony hole at the base of the skull through which the brain-stem and spinal cord exit the skull – can cause a child’s brain-stem to “kink.” This can cause a child to have:

very brisk reflexes
numbness
weakness
difficulty walking
loss of bowel and bladder control
sleep apnea – periods during sleep when the child stops breathing.
Brainstem compression can ultimately lead to death if it is left untreated, so parents and physicians of achondroplastic children should watch for the symptoms outlined above.

- John Hopkins

The MRI of the spine to to check for Spinal Stenosis. Stenosis is common in people with Achondroplasia. If it is going to present a problem, it will occur later in life.

Spinal stenosis can cause a wide variety of symptoms throughout the body. The most common symptoms are:

pain,
numbness,
tingling, and
weakness

2. CT of the Brain.
- All individuals with Achondroplasia have “Hydrocephalus”. I quote this because it is not the typical Hydrocephalus that we think of. People with Achondroplasia have extra ventricle fluid within their brains. On appearance this is the cause for the larger head. On a CT, the extra fluid can be seen, but it doesn’t mean there is a problem. This is Cerebrospinal fluid (CSF) that bathes the brain daily. In a majority of cases, this is typical. People with Achondroplasia have what is called Extra-Axiel Fluid. Which means as quickly as their body makes the fluid, they can absorb it. The fluid is free flowing and is not blocked. When the CFS becomes block or is Non-Communicating the child has to be seen by a Neurosurgeon to evaluate the need for a shunt.

A shunt is a flexible but sturdy silastic tube. A shunt system consists of the shunt, a catheter, and a valve. One end of the catheter is placed in the CNS – most usually within a ventricle inside the brain, but also potentially within a cyst or in a site close to the spinal cord. The other end of the catheter is commonly placed within the peritoneal (abdominal) cavity, but may also be placed at other sites within the body such as a chamber of the heart or a cavity in the lung where the CSF can drain and be absorbed. A valve located along the catheter maintains one-way flow and regulates the rate of CSF flow.

3. A Sleep Study or Polysomnogram
- Is a multi-channel study of the child’s breathing during sleep. This study records episodes of Apnea (cessation of breathing). There are two types of Apnea, Obstructive and Central.
Obstructive Apnea (OA) is most common in children with Achondroplasia. This refers to the abnormally small airway within the nasal cavity and throat area. OA is usually cause because the Tonsils and Adenoids are blocking a part of the airway. A surgery called a T&A can be preformed to remove the obstruction to improve breathing. Gastro-oesophageal reflux has also been known to cause OA. Having a Pulmonologist, Gastroenterologists and ENT review these results will hopefully eliminate the problem.

Central Apnea (CA) can be caused because of the FM cord compression. CA occurs when the brain does not receive the signal to keep breathing. The brain forgets to breath and the end result can be death. Pharmaceutical Caffeine can be used in treatment for controlling apnea, however, there has been a coralation between apnea and seizures in children with Achondroplasia and Caffeine therapy should not be used until an EEG has be preformed.

4. An X-ray of the Spine.
- Because all children with Achondroplasia develop Kyphosis or curvature of the lower spine. This needs to be monitored. Simple activities such as avoiding unsupported sitting, keeping the child on the floor or on their back will help reduce and eliminate the risk of progressive Kyphosis. In some children, around 10% will continue to develop a moderate to marked kyphosis, regardless of parental deterrents…(Knoah). The child should be followed by an Orthopedic Surgeon who has experience dealing with dwarfism and Achondroplasia. I cannot stress this enough. It is not “okay” to have any Ortho follow your child. They must either HAVE experience dealing with dwarfism or is willing to contact someone who is!

From birth, you should have the child followed by a dwarfism specialist. This may be a Geneticist or major Skeletal Dysplasia Center. Your child will Thank You for being informed!

So, there you have it. These tests, should be preformed early in the child’s life to establish a baseline record of all vital markers. That way if a problem is found later on, your doctor’s have a record of how and why it has changed. If you have any questions about any of these tests or the possible outcomes, please consult you physician.

My semester is over and I already have my classes registered for next semester…I do like the torture….

Since Knoah has turned 3, we have learned a few things.

1. He is obsessed with Spongebob. With it being DVR’d every time it comes on, there are episodes he has memorized…

2. He really does know how to play with his Nintendo DS. Moves the characters up and down, scoring points.

3. Has become a bit more whiny than normal and is a lot more protective of his things. Hitting the first person that takes something of his…not cool.

4. He is still short.

I am finishing up Christmas shopping and have a dilemma. He’s growing out of his 6 to 9 month pants, but 12 months are too long. The only thing I am thinking is do I have to bust out the sewing machine?? I hope not yet.

I am trying to get creative with his clothing. Buy age appropriate, no baby blue pull on pants and such but jeans are hard to come by at 6-9 months. Especially the ones without the diaper snaps.

He is picking up “bad habits” from his older brother and sister….who said they wouldn’t get along so well? As of late, his favorite saying is “Shut up (insert name)” Agh! Will and I were talking the other day and I had remarked about how funny it is to see him become a little man. His walk is changing, he is more confident, his voice is becoming more clear and deep. He knows what he wants, when he wants but sadly the only thing that hasn’t changed is his temper…. quite laughable really. The only thing he wants to do is play the Wii, his DS or watch Spongebob. He tells me “no” that he’s not taking a bath and will go into the fridgerator and run with his food of choice.

Yes, he’s growing up. He isn’t a baby anymore. What am I talking about, he will ALWAYS be my baby!!

The stares from the public are also changing, no longer do I get that lok of confusion, it has turned into a look and remarks of “Oh my goodness, look at him, he’s SO CUTE!” I find this strangly more acceptable. He is not seen as a child who is not “normal” he is seen as a child, who is different, but still a child.

This year has gone by so quickly! I cannot believe it! We have been in our new home now a year and are making this small house work for us, which I thought we’d never do. We are weeding through old toys, clothing and other stuff to help “un-clutter” years of gathering items. Still, I have a hard time letting go of things I find dear. I also realize that material items are just that and family is precious.