The First Noel

It was Addie’s FIRST Christmas! I was beyond over-joyed in the days ahead. My heart, still heavy from Sandy Hook, was looking forward to seeing the joy and excitement in my baby girl’s eyes.

We went and saw La Salette in Attleboro, MA… which we did last year, too! And we took the train to my hometown in Pennsylvania. We are planning on heading to the light show at Wanamakers in Philadelaphia before we head back, and we went to lots of parties. We went to Church, where Addie loved the lights, music, singing along and everyone loved her, too! We did so much, I could think of no better way to share than a video!

It was a beautiful holiday! I wish everyone peace and beauty in this upcoming year, as well as one full of new lessons and experiences… which brings me to my final teaching point of the year.

As some people saw on my Facebook Page, I went to go to the store on December 20 and a woman was looking at Addie and smiling on the way in. She stopped me and told me how sweet and cute Addie is, and asked her age. When I said 8 months, she crinkled her nose and said “she’s so tiny.” I smiled, as I’m getting used to this, and the comment doesn’t really leave me feeling any which way about it, but when she pulled her leg out by her foot and said “REALLY tiny!”, I used the moment to educate. This woman was well dressed, early 30’s, with her young daughter, so I wanted to take a chance. I smiled and said, “she is! Addie is a little person. She was born with a form of dwarfism called achondroplasia.”

The woman looked excited, glanced down at her daughter and said, “Emma, she’s like one of Santa’s elves.”

My eyes shot open as wide as dinner plates, I turned, put Addie in the car, took a deep breath and a sip of water to compose myself, and drove away.

I wish I’d had a card on me. I wish I had said, “not like an elf. Elves are mythical beings.” Does this little girl really think LP are Santa’s helpers?

Later in the day I had an argument with someone who thought it was OK to call her friend the m-word because she was just a short AH person and it didn’t offend her. She thought it shouldn’t offend me because she was calling a (in her words) “normal” person that, and not someone with a “genetic problem”.

Wow… so, clearly, this was not my day.

I simply responded that my daughter is normal. She is just small, and it is due to a genetic mutation. Her friend that is simply short, because we as humans come in all shapes and sizes, wouldn’t get offended. This young woman didn’t seem to get it, but I was trying to educate people that day.

And so, I will continue to try. I will spread the message about many words still widely used. Including the m-word. Please, think about the LP community; just because your words don’t mean to offend, doesn’t mean they don’t.

I wish all of you the happiest of New Years. One where we are all equally loved, appreciated and respected for our differences.

Sleep With Him

Yesterday 20 elementary school children, in a small town in Connecticut, woke from their slumber to dress for school. Some chatted with their parents or siblings about Christmas coming soon. Some probably looked for their right shoe, or left. Or for the mischief their elf got into. They forgot their homework in the merriment of Friday.

They went to school, but they never came home. They never got the chance to grow up and so we remember them as the innocent babies they are.

This same morning six adults woke to care for, teach and expand the minds of children at Sandy Hook Elementary. They woke to a quick cup of coffee, maybe some cereal. They checked Facebook, or kissed their significant other. They sent a text message and wrote a note about what would be for dinner that night. They hopped in cold cars and drove to work. And they’ll never drive home.

Twenty six souls set free in a world of Hell, while in an elementary school. A mother dead. The gunman, too. 28 people. Human lives.
Is no place on earth sacred? Is there no where safe?
Twenty souls who never had the opportunity to cause trouble, gunned down without cause. Seven adults sharing their lives to grow young minds, now lost in senseless violence. One man who turned his life-calling into the nightmares of countless others.

Today, as we woke up, our heads hurt from the tears we shed, our hearts hurt- trying to beat for 20 children throughout the night.
This day and every day after may we hug our babies a minute longer, enjoy each day just a little bit more, and cherish each moment for moments are so fleeting.

For the times you are blessed with; to watch your child on their first date, drive a car, graduate, get married, start a family. Everyday is your best day, your luckiest day. Hold on to them, as it takes just one to rip you from your dream and into Hell on Earth.

Time is all we have, and it is never time enough.

God rest those 20 souls of children, and the 7 brave adults who are caring for them still. May you all sleep in peace with Him.

This might not be about gun control, or the mental health sector finally being as important as physical health, or, even bullying and the effects it has later in life. Sadly, evil has and always will exist in this world. While I do not own a gun, I know many responsible people who do. And, growing up the daughter of a psychologist, I know the way mental health is still regarded as unimportant and often not covered by health insurance. There is a belief that hotlines and ten visits per year with co-pays of $20 each are enough to “cure” someone of their imbalances. Physicians, untrained in mental health disorders, are supplying medications unfit for the minds of their patients. Patients who may use guns. Or knives, or fists. Who may one day hurt others or themselves. There are no excuses, and what is wrong will always be wrong, but maybe, just maybe, this is a call to take the true threats we face everyday as humans a bit more seriously, and stop playing the terrorist game in America. There have been too many shootings. There have been too many threats, and punches thrown. Let us reflect and bring what peace and love we can to this world of chaos. A tweet I can relate with spoke so true to this thought, including the idea that one person tried to light their shoe and now we all have to take our shoes off at airports, but there have been multiple mass murders, and yet there is not enough being done to prevent them. I do not and will not speak to gun control, as a non-owner, it is not my place. I do not care if you have a gun. I care if you are responsible. What I will support, and hope you support as well, is the mental health of my fellow Americans. Not all shooters are depressed, or crazy. A diagnosis of mania, bi-polar or schizophrenia is not what makes a killer. The more educated we are about these issues, the more outlets we have for help, the less trauma (I believe) we will see in this country.

Have a blessed weekend.
Love,
Chelley

The Top 5

There are many discussions about mommy wars and who is the better parent (what is better anyway?). Who is right and who is wrong, and a whole bunch of opinions being tossed out by people who are not the parent of whatever child they have an issue with at the moment. People, remember to stop and smell the tulips sometimes. Life doesn’t have to be just one way. Oh, it’s roses, you say? We don’t all smell the same flowers:

Sadly, this is nothing new. When I was engaged, my husband got an anonymous letter in the mail (typed) about not marrying someone for the wrong reasons. Yep. This happened. It was sent to his shop, from a zip code on the West End of Providence. It could have been anyone, but I have my own personal list. I remember someone making a comment about robbing the cradle and then winked at me. *ahem* I was 24 when I got married, I just looked like a baby.

Allebach Photography

So why did I think when I had a baby opinions, odd questions and random “winks” of knowledge would end? Because I’m hopeful, I suppose. I feel like having a child who is but 1 out of 45,000 makes her so special that people feel they can ask anything and it’s appropriate because it’s different, but rest assured, some questions are not meant to be asked. Google it next time, perhaps? BUT, more than a few people have asked me the following questions, so here are your answers.^

1. Will Addie grow normally and then stop at a certain age?
Addie will not grow as an average height child would. She will grow slower and possibly reach a height between 3 1/2 to 4 feet. Like any other person, she will be finished growing in her late teens. She may experience growing pains like anyone else, and she has growth spurts as any other infant does. At almost 8 months, Addie is about 24 inches. An average height child would be about 27 inches at 8 months.

2. If Addie’s head is bigger, does that mean she has a bigger brain? Does that make her smarter or dumber? (*One person actually asked if she would be more smarter or more stupider)
Addie’s head is bigger than an average height child’s head. In some cases with an AH child, this could mean a number of brain or skull abnormalities, including hydrocephalus. We were blessed in that Addie’s head size is just a physical tribute to achondroplasia, and does not have anything to do with a medical issue. Because her skull is larger, her brain is, in fact, larger. This has no bearing on her intelligence, either way. Children with achondroplasia are not more likely to have down syndrome, be autistic, have ADD or ADHD or have any certain allergies. Quite simply, their heads are just a bit bigger than average.
*This was from someone at a store who had commented on Addie’s head size and the conversation took off from there.

3. Will her body be even?
I wasn’t exactly sure what this question meant until it was re-worded as: will her body match. The question is still strange, but I understood it better. The answer is: no. Her body will not match or be even. With achondroplasia, the torso is closer to average size, while her arms and legs are shorter. Addie will also have small hands and feet, and as stated, her head will be a bit larger. A common, though not necessary, feature is a little bit of a belly and rolls. Though it’s cute now, this is not something that Addie will necessarily grow out of, thus nicknames such as Michelin Baby or Buddha are truly not things we want her to be called. She is beautiful, but her body will be different. I celebrate her different! The way she needs to have her jeans cuffed already and it looks super cute on her. The way 3/4-length shirts fit her arms perfectly. The way she wears super-cool toddler hats that are too big for most babies. The way I have more baby skin to kiss and more belly to tickle. A full head of hair to brush and small hands to hold on to. Her body is beautiful.

4. Can she have babies?
This question has been asked over a dozen times. The answer is, medically, yes. Addie can have a child. If her partner is another person with achondroplasia, there is a 25% chance of her baby being average height, 50% of the baby being a dwarf and a 25% chance of the child being born with 2 copies of the gene, which is fatal and known as homozygous Achondroplasia. There are a few different types of dwarfism combinations here. Not all numbers are the same depending on your source- science… so un-exact sometimes.
Addie will, if she decides to have children, need to have a cesarean section- but, she should, with a healthy lifestyle, carry a pregnancy just fine.
As her parent, she has to be allowed out of the house first, so NO, she cannot have a baby!

5. Is there a cure?
And finally, no. There is no cure. Dwarfism is not a disease. Addie’s achondroplasia was caused by a spontaneous mutation in a gene called FGFR3. There is nothing wrong with her. She laughs when I dance, she babbles about her “dadadadadada” and she rolls all over the place to get what she wants. She can stand when leaning against her crib railing, and she puts herself to sleep at night. She loves carrots and turkey, and she thinks throwing things on the floor is hysterical. She eats puffs and her toes. She loves to swim and pull my glasses off my face. She is your average baby… just a bit shorter. But, if you didn’t know this already: the best things in life come in small packages.

I am aware that there are some awkward double standards out there, my least favorite being if you look up what a child with dwarfism looks like on Google images, there are multiple pictures of naked children with dwarfism. If those children were of average stature, that would be child pornography. I do not think it is human to want to examine a anyone in this manner. I know when people first see Addie sometimes I see their eyes scan her whole body, looking for something to be different. Searching her limbs for their incongruity with her torso, or staring just a bit too long at her head or belly. I’ve seen the look in the eyes when they’re caught. The shame that floods someone when they’ve examined a child the way a scientist looks over a subject. Someone whispered an apology to me.  The size of cars, football teams and pickles are described using a derogatory term that offends thousands of people, yet the media still uses it widespread. Imagine another derogatory term used so casually? I’m sure the ACLU would be up in arms.

That being addressed, please ask questions about dwarfism. Remember the way things are worded and what your words insinuate can hurt and offend. If you wouldn’t want someone to ask you questions in such a manner, perhaps an internet search may be a better way to find your answer. I am all ears and eager to learn the things that I don’t yet know and educate others on the things I do, but when things get personal- please remember- this is, and always will be, my baby.

^ Not every question on this list was inappropriate, but sometimes the way the question was posed was what got to me. Again, please be a wordsmith when asking tough questions.

Cains’ Pickles

I created a video, instead of writing a letter. I figured some nicely placed words and pictures could, possibly, speak volumes more than just a letter stuck in a pile of mail.

Here is the video:

I AM AWARE THAT I SPELLED ‘diagnose’… sans the ‘g’. Please forgive me… I went through the video 100 times and caught a handful of other errors, and I should have had someone edit me before I released the video, but I was too eager.

I ask you to please share this video. Tell people about it. Ask for change in 2013.

Hallmark Moments

I received an email a few weeks ago from Hallmark (I LOVE Hallmark), but I discarded it. A contest to draw a charm that will be made into one they will sell. Drawing? Me? No thank you.

But, then I looked at all the charms I had, and a book to circle ones I want. I saw a lot of awareness and I was jealous. There is a pink ribbon (three different ones), a yellow ribbon, a puzzle piece for autism, a block for St. Jude, and the list goes on. But there was nothing for dwarfism. So I thought I don’t want another ribbon out there. I don’t want to be associated with something that needs a cure. I want to wear my awareness proudly on my bracelet. I want to show off that I love Christmas, I have a baby girl, I am married, I have a (smelly) dog and I know someone with dwarfism. Some one very close. I want my baby girl to have more representation in the world than she currently does.

I want Hallmark to help us raise awareness!

Dwarfism Awareness hand

This is my hideous drawing. I know what you’re thinking: you can’t even trace your hand! It’s true. I am only good at drawing words on a page. If you were expecting art, you are looking at the wrong woman. But here is my idea- my submission. You can submit two drawings, but I only need one. I need the beautiful trident fingers of our babies wearing a green bracelet to be around my wrist. I want people to ask: what is that charm? What does that mean to you? I want people to think it’s interesting. I want to gift it to others. I want to launch more than green rubber bracelets (that don’t always look fashionable). I want everyone to have a charm that they can look down at and smile; think of Addie, or Hailey or Knoah.

Thank you, Hallmark, for giving me this opportunity. I hope I we win!

#educate

Support our growing community!

My Delaware blog is coming [slowly] along. I am doing my research and trying to use lots of visuals for learning purposes… not just to ooooh and ahhhh about how adorable my baby girl is. With that in mind, I wanted to help support our ever-growing community in British Columbia (and get you readers some new material)!

A mom reached out for me, and as this is a month of THANKS, I wanted to write that this year, outside of the most beautiful birth experience and the perfect daughter I now have, I am most thankful for the wonderful community that has supported, educated and backed me up since we learned Addie has achondroplasia. Without the LPA and multiple parent resource connections on Yahoo! and Facebook, I know that I would still be in the dark about a lot of things, and told by other parents that I am just paranoid. Having the love and understanding of other parents, learning about what other people have experienced, and their education about dwarfism- I can’t say enough good things. These people and their word of wisdom are priceless to me.

For this reason, I want to spread my joy and give some good ‘ole shout outs to help a new friend! Little People of British Columbia, or LPBC, is participating in a contest. Winning would be a great new beer creation for the masses AND some funding for their organization! Thank you to Tammy, for spear-heading this wonderful time for LPBC! Check out her blog Not Just Another Mom and read more about LPBC and Tammy’s son Declan. When describing the contest, she said it best:

We’re a small group with very limited resources, but a lot of heart. We have been shortlisted as a finalist with a very cool brewing company for their ‘2012 Benefit Brew’. The 10 finalist organizations are going head to head in an online vote, which will decide the winner. The winning organization will partner with Phillips Brewing to create their own custom beer and the entire proceeds from the sales of that beer will go to the winning group. Last year’s winning organization received over $10,000, which would be HUGE for us.

Custom beer AND helping an organization grow to fruition, educate others, and offer wonderful new resources about dwarfism? Sign me up!

Voting began yesterday, but you can start voting and SHARING this page and the link to vote today! Please remember to vote once a day until it ends, November 18th.  I will check back with Tammy at the end of the month and see how our community did. Please open a tab on your computer and leave it open so you remember to vote everyday. Pass it on to your friends on Facebook. Link it to your blog. Your help supporting, encouraging and voting for LPBC to achieve funding in this creative way means a lot to me.

I am thankful for you.

VOTE HERE!
FACEBOOK!

Supporting District One!

As I hope my readers know, October is Dwarfism Awareness Month! I am so excited to be a part of such a loving, welcoming and diverse community. I think Awareness should be replaced with Celebration! I celebrate Addie everyday, and having a whole month to do so is great! I am here to educate and I would love questions. Please post them here, or privately on Facebook. Beyond that, I’d like to use this month as an opportunity to give back to my LPA district.

A friend of mine wrote a beautiful and educational blog and brought the idea to the table to donate the funds of her hair bow sales to District One. Sarah has a wonderful blog, Sweet ‘lil You and sells her bows at Sweet ‘lil You Boutique.

I have also been getting crafty… I have quite a few fabrics for our scarf-bibs and the cutest model!

I will be putting them up on Etsy, but until then, please write a post if you are interested and I will contact you! They are 2 for $12 or $7 for 1. 50% of the profits will go to the district and the other half to Addie’s appointment(s) in Delaware.

The fabric I have (so far)! All bibs are handmade, thus not created 100% equal in look, but with 100% love and care. Two snaps in the back to adjust for size. Knit and flannel available.  They’re absorbent and reversible- like more than one design? We can use two on one bib, as long s they’re the same fabric! Also available as a backing: terrycloth!

1. Brown with teal and white swirl, knit
2. Grey and white pattern, knit
3. Multi-color dots, knit
4. Patchwork peach and browns and creams
5. Black and white houndstooth, flannel
6. Sparkle teal, knit
7. Multi-color pattern, knit
8. Monsters Rock!, knit
9. Lime green with purple polka dots, flannel
10. Purple with yellow polka dots, flannel
11. Green, flannel
12. Pink houndstooth, flannel

I also have a navy with gold anchors fabric… not pictured!

What’s the deal?

I went to the doctor, and while the details do not need to be discussed, I’m not sure I’ll ever go back to that one.  I’ll keep this brief, but let’s say my decision is not because of me, per-say, but because of Addie.

The nurse was brief and dropped my file twice. She didn’t write down what I had told her (questions I’d had), and was extremely curt. Then the doctor. This doctor (midwife) asked a lot of questions about Addie, finally landing on her pediatrician (this is my appointment, yet no questions were asked about me). When I told her, then said and she sees a geneticist, the look of relief on her face was palpable. I felt the room heave itself out of worry. If you had a question, why didn’t you just ask? I don’t like to dance- literally and figuratively.

She said, “I was waiting for you to say something.”

She then asked a lot of questions, like “is achondroplasia like dwarfism?” I said, “it is dwarfism.”
I did my best to educate, but with the constant comments about how she had a poopie diaper (she didn’t) and how she could tell she was pushing (she was rubbing her lips together and humming- which she does to make her gums feel better), I’m not sure this person is qualified to know anything about babies… or about the parts from which they burst from.

Perhaps I just have the wrong midwife, but I’m starting to feel like everyone’s bedside manners have been tossed aside. What happened to care and concern for your patient?

Addie is beautiful and I WANT to answer questions, but I will not circle the bowl trying to drag the real questions out of people.

PSA: PLEASE ask! Parents want to educate for the sake of their sanity and for their child to grow up in a knowledgeable world!

October is Dwarfism Awareness Month! Please ask how to get your state to recognize it!

You Educated Yourself AND Won $25!

Thank you so much to Lynn- our winner- for educating herself and others about dwarfism! Lynn is mom to a LP, too!

This cute face wants to thank everyone who joined in the effort to educate people about dwarfism, and will continue to do so!

You Liked AisForAdelaide and Understanding Dwarfism, and that won you $25! (I’m sure you already knew this, as I emailed you, but I figured I would share it with the world!) I am quite excited for all the LIKEs we received, and I hope that everyone continues down this path of education! Becoming aware is the first step to understanding more about LP.

October is Dwarfism Awareness Month and I am hoping that Lynn, and you, my lovely readers keep spreading the knowledge!

A few things to remember:

* There are over 200 types of dwarfism. Achondroplasia (what Addie has) is the most common.
* Over 80% of people with dwarfism have average height (AH) parents and siblings.
* It is very rare to have any type of mental impairment with dwarfism– I made this bold because many people have come up to me and shared their apologies and compared her to being autistic. When I say many, I mean more than 10. While I do understand people are trying to learn, please know that dwarfism is not related to autism.
* Preferred terminology: “little person” “short stature” “dwarf” “having dwarfism”. The word “midget” is slang, antiquated and will not be tolerated by myself, my husband, my family or anyone we know.
* People with dwarfism are able to do the same things as average height people, perhaps with some adjustments- but just as capable.

Please know that we are not looking for a cure. There is nothing wrong with Addie, or any other child or adult with dwarfism. She is beautiful, happy and perfect. Simply, like other little people, she is just small. She may need surgery in the future, but many people get surgery. A lot of people ask me if there is a cure, there isn’t. How can you cure her from nothing?

Mommy Blogger

Am I excited? Yep!

My goal, which I need to focus on, is to bring awareness to the general public about dwarfism. I want people to know that Addie can do anything that she wants to. I never want her to be held back simply because she is small.

A fancy webpage with information from health to hopes, personal stories and, most importantly, to learn about Addie, would certainly help! I am hoping to have the first book published by the end of this year- and we hope to be consistently blogging twice a week!

PLEASE, mommies, register yourself- there are so many blogs out there that I love, and I think we could all use some help with marketing and design but can’t afford it. Go for it, Mom!