Tag Archives: average

Drool on me

So… I went to some craft shows to sell my bibs. I am donating a portion of the profits to my local LPA chapter… but I have to have profits first! Even with my mother-in-law helping me with a huge majority of the fabric, I’m still in the red with just Facebook sales, so I figured some shows would help.

I was wrong. But I’m OK with that. I will still be sending a donation District 1!

I didn’t truly enjoy my first show. It was a cold night and I saw about 12 people come in, total. I DID get to share a table with the awesome Sarah of Sweet ‘lil You– so that was fantastoc! But this is what my table looked like before and after the show:

Bird tree

Sign

Bibs

So, I tried my hand at the game a second time. I didn’t come up big, but I met some amazing crafters AND I didn’t leave empty handed. Or, in my case, cash box. Sadly, I only had a few business cards left, so I made these horrendous things- but I’m hoping to get over to Moo.com and order some pretty, new ones soon!

Bib and tutu

My info!

Tree

bib layout

I felt good while I was there, and the other tables around me were full of some beautiful things- from food to handcrafted jewelry! I just HAD to get earrings for my mom from Ella Grace Jewelry Design. If you ever want a statement piece, even one that you can wear everyday, THIS is your place! I also made a partnership with Rebecca & Me (her products are in my new baby gift baskets), and Silpada representative Jillian Lizotte is amazing!

I guess all is not lost- I hope to add to my crafting and be less specific to babies… or at least more well-rounded. Plus, I used items I had with me and made some adorable tutus for the holidays! I will say that I spoke to a handful of people about dwarfism, they had a bunch of questions, and it felt great to educate! There were a few times I heard normal and it made me cringe, but that’s when I gently respond replacing ‘normal’ with ‘average’, and I van tell by the nod they understand. It felt great to tell people Addie IS, essentially, normal (although any baby of mine is bound to be a tad strange). One woman said, “Oh that’s wonderful. I watch Little People Big World all the time. I love that family!”

I thought to myself, ‘you know what? It is wonderful.”

Please Like Type A Style’s page and consider handmade for all your gift-giving occasions!

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Filed under Craft It

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:
Addie and a tullip

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

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.

Addie

^ 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.

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Filed under #educate, Achondroplasia, Parenting

Brass Tacks

When you boil it down, there is a ton of information about parenting; breast feeding, diapering, scheduling, milestones, sleep patterns, bathing tips, birthday party ideas… these things rule the Mommy World on the internet.  But where is the information for a child who is not average? You know… the child who is above average, but below in height? Where is the information for children with dwarfism? And if you can’t find anything more than general information about dwarfism, let’s make the search easier, and pin point what we’re looking for: achondroplasia.

There are a ton of “facts”, and “the genetic workings” are explained in detail, but the deeper details, multitude of growth and development charts, information on specific spinal development, and what toys, carriers and car seats work best. Where is that information?

Well, it’s not there.

It’s not in Parenting, Parents, American Baby, Family Circle, Disney Family, OR at your geneticist’s office.  It’s not that I’m angry, I’m just confused and deterred. Who do you ask if the doctors don’t know?

I love nice people as much as the next gal, but when I want answers, I want answers. I  don’t necessarily care if a doctor is nice when there is no information in hand. It’s not a hard concept- I want to know all there is to know about everything there is to know ,so that Dave and I can raise Addie in the best way possible for her and her needs, while not forgetting our own. We are good parents doing a lot of research, spending time and energy on excavating information that a working doctor does not have time to seek. Except, the one doctor I hoped would know enough to answer questions I had without reading an article she presented to me weeks ago.

I am wholly aware that I need to be Addie’s best advocate, but is there anyone out there who will help me?

The most helpful information I got from the geneticist: Addie’s measurements. For which I provided the growth charts to be plotted upon.
…And provided the accurate reading of said charts- as the assistant, a pediatric specialist, seemed unable to read the caption under the chart stating which lines were for Achondroplastics and which were for AH children.

And so, I guess I’m really just relieved that I did a ton of research so that I could tell the doctor what she was missing, and so I knew what questions I need to delve into further with the right people. But, who are the right people?

I’m hoping to find some answers in Delaware… insurance pending. Insurance; I believe that would be a whole other blog!

On a happy note: HAPPY THREE MONTHS TO THIS BEAUTIFUL BABY GIRL!!


Thank you, one million times over, to the wonderful parents I’ve connected with who have given me more than advice- they have shared all of their medical knowledge with me- making disappointment easier to handle.  When I can’t find the exact answer I need, I know I can gain  a wealth of medical information from moms and dads who have walked the line before me.  Thank you. Thank you so much for sharing with me and helping me navigate my way as a new mom!

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Filed under #educate, Achondroplasia, Community