Tag Archives: average height

Marvelous Monday

For the first official Marvelous Monday post, let’s jump right in!

Educate

First up: sitting up!
If you had asked me last week if Addie could hold herself up, the answer would have been NO! But now:

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IMAG2012That’s a whole ‘lotta sitting! Her back is super straight, and I love giving her the opportunity to see the world from another vantage point. She does not pull herself into the position, so we don’t practice this too often.

Placing a child with dwarfism (specifically one with spinal issues like kyphosis) into the seated position often leads to “tripod sitting”. While this position is fine for most children, it is not for an achondroplastic because their vertebrae crunch in on themselves on the inner part of the spine. This leads to chipping away the bone, and can case severe back issues. Addie tries so hard to not fall forward, that she often falls out backwards (hence the pillow behind her).

Children with dwarfism can expect to sit up, on their own between the ages of 11 to 14 months. While Addie is only 8 1/2 months, she is not doing this on her own! We do not use seats (Bumbo, Mamas&Papas) that assist with propping because they allow for lower spine curvature, however, on Friday (1/11/13), I went to place Addie on her back, and she would not un-fold herself. I was bending over to put her down and I let her go to readjust my positioning, and she sat. Just like that. She wasn’t leaning on the sides, or against a toy. She was just sitting there! When she does fall back, she cannot hold her head up from falling like I’ve seen lots of other children do, so I do not leave her like this, but it’s been wonderful to see her sitting up for 30 seconds (or more!) at a time and laughing and smiling the whole time. Knowing that she is doing something new is not just exciting for us as parents, but for Addie, too!

While Addie’s milestones may be well behind those of average height (AH) children, her mental and emotional skills are not delayed. She mimics us and says funny things like “dada”, when she sees a man with a beard, she loves to brush her teeth, and when the music shuts off on her Baby Einstein player, she knows to slam her hand into it until it starts again (yes, she does this in the middle of the night when she wakes up). I have a baby who puts herself back to sleep with music. I feel like I might be WINNING… sorry Charlie.

Many times people have wondered when their child will sit, and being that Addie is my first, the wait is so hard. Watching other children sit up, crawl and walk, while my beautiful girl tries to squirm on her tummy or rolls into a toy isn’t always easy, but when she curls up into me, soft and warm, I know that when she is sitting up, walking and running, I will wish for these fleeting moments and never get them back.

I send you all my love POLP. It’s never easy to be a parent. Our babies are different. We don’t want to point it out, and as they mature they will do anything any other child does, but this early in the game, it can be daunting to watch other children do what our baby cannot. I still feel those things, knowing that Addie is “behind” her peers. As first time parents, all the things we prepared for are different. If you’ve already had a baby who is AH you’re starting all over again; learning new ways to parent and raising a child completely different from your others. And to all my friends out there who have no idea about dwarfism… be patient with me. I will move on and Addie will, too, but some days I just feel very alone. Thanks for sticking by me.

Thankful For

While I’m cooking dinner, a task we begin at 6:15 every evening after Addie eats, I put the babe in her exersaucer. Previously, she stayed in her highchair and demanded puffs. Shrieks and shrill cries told me none of my offerings of mixing bowls, wooden spoons or spinning toys would appease her desires. She wanted puffs.  While I don’t think any baby needs a diet, I don’t think my baby needs to eat puffs because she is bored. And so, most nights, dinner would be started, but not completed by the time Dave got home. There was simply no way to make food and stop the tears at the same time.

Addie wakes up from her 4:30-6pm nap, eats and then wants to play. She gets some puffs so I can begin dinner, plays with spoons and makes herself into a little drummer (just like mommy) and then, at the time when my hands are covered in raw chicken or beef, she lets out the first cry. I usually get the food prepped and my hands clean before WWIII starts, at which time I pick her up and put her in her new exersaucer.

Addie Playing

And so… what am I thankful for this week? Not the exersaucer, but for the best friend who knew what I needed before I did… even if that need is an exersaucer. I am thankful for my best friend. Sometimes you meet your soul mate on the playground of kindergarten. She’s the little girl who is similar to you, with the opposite hair color, but the same shoes. Or maybe she is in your dance class, or you swim together at the Y.

Me? I met mine at a new mom’s group. I won’t get too involved, but when I heard she was a transplant (from the south, HA!), her husband works too much, she had encountered similar loss in life, and had a high-risk pregnancy, it was like we were meant to be. We are not the same person on the outside. She is blond to my brunette. I have blue eyes to her brown. My muscular, though under-toned, body is covered in tattoos and a few piercings where hers is beautiful and lean with some freckles on her otherwise bare skin (when I was little I used my mom’s eyebrow pencil to give myself freckles- I love them!). I wear flats, she wears heels… and then we’re the same height. But, what we are the same in is our adoration of our baby girls (Addie and Hadley, known as Adley or Hadelaide), born just 4 days apart. Where I thought I wanted Addie to be born on April 21st to help heal the wounds of losing my father, I am glad she was born on the 17th (my lucky number). Hadley’s birthday gives me something to celebrate, but not a party to plan, which is something I don’t think I could handle. We are the same because we don’t fit in, but we do. We love red wine and champagne with cheese and guacamole. We love our SUVs and the men who provide for us, even if we never see them. We’ve known each other for about 8 months. Almost since the girls were born. There are no pictures of us in middle school laughing on the field hockey bus, but she didn’t play field hockey and I was never a cheerleader. High school dances? Nope, we didn’t know each other. College parties… I prefer those pictures never be released, anyway. But there are memories being made now. The loneliness of my pre-mom friends being too busy to ask me if I want to come out after the baby is asleep… it doesn’t hurt anymore. I have met someone who fills all the gaps and spaces. I love all of my friends, including (of course!) my Nick, who is my rock in Philadelphia. There are lots of ladies who fill my heart with love, and a few special men who have always protected me like a sister and fought with me like brothers. I am a blessed woman to have all of the love and support a person needs. Not from numbers, but from strength in the few I’ve let in, and who locked the door behind them.

I am thankful for all of my friends, but today I am specifically thankful for my best friend because she somehow always knows what I need. Yes, even if that need is an exersaucer so I can make some darn dinner!

Random?

Dinner is never random here. We eat around 7:30 8:00 9:15. Let it be known, we eat every night. I always have dinner ready… well, since 2013 began, and I wanted to share 3 super easy dinners you can get done in less than 15 minutes… as long as your children are amused. Can’t get them to calm down? Ask your friend for an exersaucer!
Quotes like: I can’t eat this fast enough and This has been an amazing month for dinners and Are you trying to out-do your dinner from last night are what keep me going. I wanted to have dinner ready when Dave got home as a personal resolution. No more asking him to come in the door and let me drop everything for him to take care of Addie and finish dinner while I come up to the office and Facebook. And so, I’ve rearranged my schedule to ensure we are home by 4pm everyday. Addie takes her nap 4:30-6 and then we head down to the kitchen to eat (her last meal of solids for the day) and make dinner. I make sure that I am prepared for what we need ahead of time, placing all the dry, canned and jarred goods out on the counter and putting all the refrigerated goods together on the bottom shelf in the fridge- ready for grabbing. I make sure that any recipe is loaded into my phone and the oven is pre-heating while Addie eats. And so, I’ve had dinner ready every night- including wine poured!

A few faves, each serves 2-3 adults… or 2 adults, 2 kids. Dave and I eat dinner and he takes leftovers for work!

Chicken Cesar Salad
I was never a fan of prepackaged salad kits, until they were on sale and I decided to get a few.

Cesar Salad Kit
Amazing.
Add sliced black olives, 3 minutes.
Grill chicken on the Foreman, 6 minutes.
Slice chicken, throw onto salad kit in bowl.
Call yourself a chef.
Pour wine and pat yourself on the back.

Garlic Kale with Sausage and Mushrooms
Take the casing off three sweet Italian sausages, cut into 1/2 inch pieces, throw into pan with oil until brown. No casing is crucial… I think it tastes SO much better.
Meanwhile, wash and dry one bunch of kale. Cut leaves off stem. Put into wok with 1T olive oil.  Add 8oz. sliced mushrooms. Cook on medium heat.
Dice fresh garlic… as much or as little as you want. I LOVE garlic. And toss with kale after 5 minutes.
Add salt to taste. Cook until leaves are tender but still crisp and bright green, lower heat and add sausage. Mix. Let sit for 1-2 minutes.
EAT!
You can use whatever meat you want… but YUM!!!!

Lastly… I got some pork tenderloin, already seasoned.
Follow the instructions on the package, but plan on about 40 minutes of bake time (I LOVE long cook times… set and forget… without having to unload the crockpot).
Make some couscous, which is super fast and simple, and season with S&P, paprika and turmeric for some smoky flavor and color.
Steam up veggies (I used broccoli) and dinner!
Pork is super easy because you let it rest for 5-10 minutes, then slice the whole tenderloin and divide it for dinner and lunch the next day. Couscous and steaming veggies are super fast, and great sides.

Happy eating… and HAPPY MONDAY… to all!

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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

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?

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Filed under #educate, Achondroplasia

I didn’t know it would feel this way

Sitting with other moms, listening to the births of their children. Discussing how long and lean their kids are. How they are looking more like one parent or the other- growing like one parent or the other. Laughing and fantasizing about if they will be tall like daddy, or short like mommy. Commenting on how chubby their babies are getting.

I didn’t know it would feel like this.

I didn’t know I would revert inside myself. I didn’t know I would want to cry. I didn’t know that I would try to compare the length of their limbs with Addie and notice a 3 inch difference in leg length with a child 3 weeks younger.

I didn’t know the fear that this would bring up in me.

I love my baby girl, and she is perfect just the way she is- but I have to admit, I felt a pang of hurt. I didn’t want to be a part of the conversation. I wish that I could have gotten up and left the park, but I wasn’t angry. Just a little sad. The same sad I feel when someone asks me if she’s 10 or 11 weeks. Sad for the days ahead that will be difficult for her with her peers.

I was going to make a post similar to this, but I didn’t feel brave enough. Now I do. It’s an admission I have to make. Be it raw and unreasonable. This is not something I think about often, just passes through my mind when the topic comes up. It’s a conversation that I could join, I suppose, but I don’t know what to say. She won’t be tall like me, or short like Dave. She will be her own. I am incredibly proud, in a way. She will be Addie, and only Addie. She won’t have my lean (read: not skinny) or Dave’s athletic build. She will be short. Short like Addie. Beautiful like Addie- with a touch of mom and dad.

And so, I present:
Below is a post I wrote a few weeks ago that I feel comfortable sharing now.
Showing you my soul.

I don’t want to think they way I do, and although I’m sure it conveys as disappointment, it’s not. I’m full of awe of my beautiful baby girl. The way her eyes sparkle, her creamy, smooth skin and her amazing hair color- that I matched when getting my highlights done. Her little fingers and feet. Her smile is infectious and the dimples above her lips brings tears to my eyes. The way she turns her head to-and-fro, sticks out her tongue and squints her eyes- I’m sure the laugh is coming any day now!

But, I still wonder.
What would my daughter look like if she were of average height?

How many people just gasped? ‘X’ed out the window and vowed to never read my writing again?

I write of how people should not offend anyone, and here  I am, offending myself.
I’m so ashamed to be wondering this… but hasn’t anyone else felt this way? As an average height parent, baring my soul in each post to the readers following, is it OK to wonder? I feel no need to dwell, but I promised myself I would be honest when writing. I would give people something to read that may not always make them smile, or agree, or want to know- but it’s the truth. My truth.

Addie will hold her head high, no matter who she is more like. She will have passion, drive, creativity, sass and the power of debate that runs though both her father and myself- and she is and always will be our beautiful girl. She will get a bit of each of us, I hope- my fire and Dave’s calm to the storm- as well as my nose, pinkies and ears, and Dave’s lips and dark blue eyes.

There are people of all races, nations, religions, orientations and statures that are beautiful and not, so please do not read this as a fear of her looks. It’s just a wandering thought, not a lingering concern, about who she would take after more.

And with so many concerns, is a little imaginative thought so bad?

…imagine if she got Dave’s nose- now that would be a concern!

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Filed under #educate, Family Life

Reaching Out

I got a phone call Wednesday afternoon. It was a conversation that lasted 51 minutes and 57 seconds, not once during which I yelled, begged or felt hot tears welling up behind a headache fueled by stress. Nope. This phone call has left me lighter, although I wish physically, mentally. In fact, I feel like a feather.

When Dr. Shurr sat down with us on June 22nd and told us about Addie’s diagnosis, I immediately began to research. Everything that came up was negative. From the media portrayal to stories of surgeries and even deaths. It was heart breaking. I felt guilty. I felt sad for Addie. I wanted to do everything to make life easy for her, and was left to feel like all I had done was make her life difficult.

So I did what I do when I need to vent.
I wrote.

I blogged and was inundated with response from a whole new community. A loving and understanding community- complete with information no doctor had presented me with.  I was relieved to find so many blogs with information, but where was the medical community on this one? Why did it seem that no one besides other parents knew about Achon babies?

So many people reached out to me, many emailing and sharing their stories and all they knew to help Dave and me navigate Addie’s future, and for that I am so grateful.  One mom, in particular, went so far as to call me. She is the phone call.

She shared her story about her daughter who is nothing shy of beautiful, and is completely average in all she does, except her height. She does everything her older sister does, including scaling the stairs of their multi-level home, and does it with panache!

Since I began this week with a healthy does of puff, I wanted to end it with another light-hearted piece, filling your week with the sustenance of life: compassion.

This mom spends her days helping other parents who are just learning about dwarfism, understand what lies ahead for their child, and know that there are good stories out there to go with the “bad”.  Sometimes achon kids and adults need surgery- average height children and adults are no different. Achondroplasia doesn’t have to mean a new home, not having other children or a constant battle with insurance- sure these things may present themselves in different was; a stool in every room, a sibling who needs to understand their sibling has a few limitations, and an unruly agent who needs a lesson in LP, but for the most part, it’s all  going to be OK for Addie. She is my little blessing, as every baby is to their mother. I love her- big or small, and I am so excited to journey through life as a mom learning all I can to make Addie’s life the best it can be for her before she ventures out and changes the world!

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