Tag Archives: questions

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.

8 Comments

Filed under Achondroplasia, Educate/Adovocate/Make Change, Parenting/Family/Lifestyle

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!

1 Comment

Filed under Educate/Adovocate/Make Change

Early Intervention

Addie went to Early Intervention for her physical interview.  She automatically qualifies for the program based on her diagnosis, but they like to get together to check where her skills are.

She’s 3 months… what skills?

I began the interview by handing the therapists toys that she likes, as she was completely disinterested in the ones that they wanted her to track and follow.  The red and yellow rubber “toys” she presented to her looked more medical than playful; I was glad that I brought along a few of her favorites. Once she proved her skills there, we moved onto a few other things, then questions about her eating.  These confused me, as they were asking about how she takes pureed foods. I’m sorry… what? She’s 3 months- update your questions to coincide with what the AMA guidelines are for feeding.

After more noise making and eye tracking, a little bit of reaching, and a whole lot of “prayer hands” (where she holds her hands in a prayer-like fashion), the therapists asked if I could pull her up by her arms to bring her into a seated position, which helps check her abdominal strength. Um, nope. Have you people seen her head size, which we discussed at length, and how I can’t let it snap back? She holds her arms and legs up in the air, she’s working her abs, let’s leave it at that.

So, we moved on. Sort of. One of the last questions included me holding her, facing me, in a slightly seated position cradled in my arms. From this point, I would drop her back, “just a bit”, to see if she startles.

You want me to drop her to see if she still has the startle reflex, which I said she did? Trust me. She does. And I’m not about to risk her head flapping back to prove it.

In the end, it was a fine visit and I agreed to worth with a therapist to come up with a care plan, but for now, that just consists of monitoring her motor skills.

I provided the therapists with a copy of the most up-top-date chart of where her motor skills should fall as an achondroplastic, and let them know I expect her scores from now on to be biased toward these age-appropriate, according to experts in dwarfism, milestones.

As it is, Addie scored at 3 to 4 months for each group, except social and verbal skills, where she is at a 4 month and 5 month mark, respectively. This was no surprise to Mima (my mom) or Daddy, as they both know how much I love face-to-face communication, always making eye contact with people I am in conversation with, as well as the fact that I love to talk. And I do so a lot!

It’s nice to see that being sure to speak with Addie everyday, encourage her to engage us in conversation and always make eye contact with her, whether she is playing with a new toy, getting dressed and counting her snaps, or in between the lines in a story- we are enhancing her communication skills.  I hope that she can keep up with her motor skills, but even if she ends up a big behind from AH kids, I know that she will reach her goals!

I do hope to add a few things to her goals, like looking at her toys more, but she just loves the social interaction she gets from the people around her, often losing focus on the object at hand and choosing to look at the people near her… unless there’s a ceiling fan.

A BIG congratulations to our tiny little girl for making her milestones thus far, and being the little chatterbox that mommy is, too!

1 Comment

Filed under Achondroplasia, Educate/Adovocate/Make Change, Milestones

Mystic

A day out!  …and what a day!

Addie and I went to the Mystic Aquarium to meet some new friends, and it was amazing.  Addie got loved on by some very adorable little ladies (babies are not an interest of the boys!)- and as she gets older, I know she’ll love playing with her new friends, while mommy got to talk to some parents who told me the truth: she’ll be fine!

The day started out rainy and gross, and I was nervous having just Addie with me. I feared the rain was an omen. I have to admit sometimes it’s hard to be a tattooed mom with less than $100 to your name and a hubby who is always at work. I feel like a stereotype. Like I provide everything Addie needs, but still seems like we’ll never be able to keep up with the Joneses- and why should we try? But there was not a judgement to be made- all that anyone saw was the precious little Addie. And later in the day the sun came out, reflecting how I felt on the inside (warm, not sweaty).

I finally got to talk to a mom I’d met online, and she showed me such a strong spirit- what she has watched her daughter go through could bring you to tears, but she smiles and offers nothing but the happiest and best words. And her little girl? If she doesn’t make you smile, you’re deaf- she will tell you everything you’ll ever need to know about life, without ever taking a breath: the world is good, and riding on the flume is the best part of any water park (when you meet the weight requirement, that is).  I also spoke with a couple that reminded me so much of Dave and me that I found myself blabbing away to them, wishing we lived closer and then calling Dave when I got in the car and bragging about how beautiful their girls are. Then there was the littest cutie, who couldn’t take her eyes off Addie- so much love coming from a 4 year old filled me with such warmth. There were stories of surgeries and sleep issues, advice about anesthesia and the first day of school, and the final word: breathe.

Best advice I got was from a dad who reminded me so much of my own- he loves his little girls and it shows! He told me that Addiewill do what all the other kids do, she’ll just do it in her own time.

There is no rush in life. I often lament that as I child all I wanted to do was grow up so I could do whatever I wanted… now all I want to do is throw on my goalie equipment and do two-a-days until school starts, and then get a pop-quiz day two. What happened to youth? It’s wasted on the young. As an adult mom, I plan on savoring everyday that I have with Addie and enjoying her milestones. Maybe she will walk at 12 months, and maybe not til 30. Who cares? She’ll walk, she will run and until then, she will smile each and everyday. I’ve spent my days since 1984 going from one thing to another, hurrying up to finish things that should have been savored and trying to be ahead of a game that isn’t a game. Life. You can’t really win something that you make up as you go along.

Addie rolls over, smiles at silly noises, holds her head up, pulls my hair and gabs away all night when her daddy gets home! She’s doing pretty darn well at her life… and she’s made our lives complete!

Thank you to all of the parents for answering all the questions I had, loving our beautiful Addie and sharing your experiences so openly.  I feel confident that we can and will have the best care, friends and love we could ever ask for for our Miss Adelaide.

3 Comments

Filed under Achondroplasia, Community

I Knew Before You Told Me

From the moment she was born, I knew she was different. Adelaide Eileen was born at only 18 inches, with my button nose and crooked pinkies. What she was born without was what caught my eye.

27 years ago I came flying into this world with a shock of dark hair, flailing all 21 inches of my body in a fury weighing just shy of 5 1/2 pounds.  During the 3 hours I pushed with Addie, I remember seeing her dark hair, feeling her head and then seeing her little body.  She looked just like me, but, to be honest, squat. I held my little ball of baby, loving all over her and sharing with no one.

I wanted to ask the doctors a million questions- I was shocked the next day when her pediatrician measured her at 18 inches.
I knew before I asked.  I knew she was my genetic miracle. Our little package of jumbled up genes that was perfectly delivered to us.

A daughter holds her mother’s hand for a while and her heart forever.

I was so tired, but I couldn’t stop staring. She was the most beautiful human I’d ever seen.
Watching her grow, or not, led me to think something was up- but you only think to ask the doctors a question if you think there is something wrong. In my heart of hearts I knew there was nothing wrong, just different about my little Addie. Then I read all about it. Her head was big. I was so scared. Could she have hydrocephalus? I researched all I could. I took Addie to her 2 month appointment and mentioned it to the nurse doing her measurements. She inferred that it was something she was going to mention anyway, due to her head circumference growing, and my heart sank.  I wanted to hear “don’t worry about it.” But, as you know from my first post, we ended up leaving that appointment with a script for a ultrasound of her head and x-rays of her long bones.

I took her home, undressed her and examined every inch. I saw her inner thighs and how small her hands were. The non-existent bridge of her nose. The way her legs bowed out. I saw her face, with those shining, deep violet eyes staring up at me. And she’s perfect.

After her diagnosis, Dave and I told a few people. Looking for initial reactions- a way to gauge our responses to people and learn what kind of reactions we would be fielding. And, as if getting unexpected news wasn’t confusing enough, the other shoe dropped.
People said they were sorry. Dave and I found ourselves trying to stop people from saying the wrong thing. Did we tell the wrong close friends? Was it something we said?

Nothing is wrong with her. Why are you sorry? We’re not.
It’s not unfortunate. We’re beyond fortunate to have  be chosen by this baby girl.

I knew she was the most beautiful girl from the moment she was born. She is loved to the core- and being so small, that’s a lot of love per inch!

I knew before they told me. I knew she was going to be the best thing to ever happen to me. I knew it. And I love every little bit.

4 Comments

Filed under Achondroplasia, Community, Educate/Adovocate/Make Change, Parenting/Family/Lifestyle