Tag Archives: baby

Marvelous Monday

I seriously cannot believe it’s Monday. I feel like we didn’t get a weekend- it was so jam-packed! …and while I am certainly stressed out and frazzled from the festivities, it’s the best feeling in the world.

I usually have a format… thankful dwarfism random that I follow, but this week, I have two thankful-s and no random. I know. I live on the wild side- even breaking my own rules!

SO this week, I am thankful for all the medical wonders we have at hand. While it is not my story, I will say that my newest nephew, Beckett James, has arrived. As I would expect any child of my bestie would be, he has a bit of a flare for the dramatic and didn’t make his entry into this world easy. But he is here. My beautiful (by everything but blood) sister is not only doing well, but looking like a super model, and they are heading home today. I spent much of my weekend running between birthday celebrations and the hospital, and I feel so tired but so energized at the same time. That feeling of holding new life. The one-on-one time of a new baby, in the quiet of the night (sure, I stayed a bit beyond visiting hours), talking to my friend. About our parents, about the future, about our families, and plans and and and. It was like a sleep over, with cooing and sweet baby breath. I took photos as my nephew took his first bath, and we laughed at re-learning to change a diaper (we both have girls for our first babes). This experience made me wish I lived closer to my big sister in Florida, wishing I could have been by her side, and also brought about such a deep love for this woman who mustered all of her love and strength to bring sweet Beckett into the world. I’m so excited for the next chapter!

And what else could I be thankful  for this week, if not the amazing women who rallied behind me almost 2 years ago through Rhode Island New Moms Connection? These women have given me so much love and support, and having them surround us to celebrate Addie’s second birthday (a little early) meant so much to us. We played, ate delicious pizza and mini cupcakes, and then played a bit more… and I watched as each child made connections to the others- all of whom they have known for their entire lives. Many of the kids ran up to other parents, giving hugs and kisses, because we all know each other. We all have a bond with each other- those first few weeks of motherhood that we spent together sitting on a floor with our new babies, trying to make sense of what we were doing right, and what we needed to change. Having those same women beside me… that’s what keeps me going. But there’s more. There are the moms I know from other personal experiences… like a friendship kindled over a wedding gown, flourishing through a love of hockey and sharing a first pregnancy! And friends from our cherished LPA community who made the hike to play, and pick up good conversation like we’d just spoken last week. A comfort and bond brought to us by a shared difference, making us  common- but a friendship we grow together watching our kids enjoy Life.

#aisforadelaide #birthdayparty #hangingaround

Just hanging around (BY HERSELF!!!!!). She’s come a long way in 2 years!

I have been blessed by my experiences, no matter how frazzling they may be, because they have brought me right here. To you. What will happen this week that will test you, but also teach you, nourish you and grow you? I hope  you find those moments and smile.

*  *  *

And what’s new in the dwarfism community this week? The LPA National Conference registration opened on the first!!! I would love to know what families will be there this year! We are so excited to meet new people, explore California and learn as much as we can at the workshops! Stay tuned to the blog for my conference tips later this month!

Lots of love to you this beautiful Spring week!
xo,

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Adelaide has achondroplasia

Adelaide was born after a lengthy labor on April 17, 2012. She was perfect. Beaming up through eyes that spoke of wonder. We swaddled her and held on for hours. It felt like we could not sleep. She was too much to let go of- her small body (18″) was a ball of cuddles that we’d waited almost 39 weeks to hold.

As the weeks passed, I noticed she didn’t look like the other babies in my new moms group. She was… rounder. She was happy, and a great sleeper, but she wasn’t the same as the other babies and I couldn’t put my finger on it. Each morning as I dressed her, I saw that her clothes fit oddly, and her head struggled to fit in her onesies.

Her head is big, I remember saying to her pediatrician’s nurse as she took measurements at her two month appointment. Addie was 9 weeks… and the ball had suddenly been put in motion.

When the doctor came into the room to examine Addie, she took two looks at the measurements and whipped out her own tape measure. She looked Addie over, asked me some questions, and cooed at her tiny patient.

What was happening? I wasn’t sure. But my stomach was in my throat,

You’re right, she confirmed about Addie’s head. It was bigger, but she was also measuring a bit small. To be safe, the pediatrician ordered an ultrasound of her head and x-rays of Addie’s long bones (arms and legs) to make sure everything was working as they should be, to be performed the following Monday, but we didn’t make it that far. A few hot days later with a lethargic infant and incessant fever, Addie was admitted to our local children’s hospital. An emergency CT of her head was performed to make sure there was no abnormal fluid in her head- this called for multiple spinal taps to be attempted unsuccessfully (and without anesthesia of any kind) to check for meningitis. Due to her high level of dehydration, the tests were lacking enough fluid, and we were left to give her broad spectrum antibiotics.

Panicked, I called my mom (250 miles away) who hopped in her car and started the drive up.

Because the tests were already on the table, while admitted, Addie got her x-rays and ultrasound done. After hearing that her head and brain were fine and there were no signs of hydrocephalus, we were wheeled back to her room to wait. I tried to sleep, to read, to do something, but I was stuck in a whirlwind of what-ifs.

I’d read it all… so when a woman came in who introduced herself as a geneticist, I knew we were looking at something serious. I listened to her introduce herself and say that she just wanted to stop by and check in on us. She was asked to look at Addie’s x-rays… I stopped listening, but then  she stood up, shook our hands and left.

Photo: Dimery Photography

Photo: Dimery Photography

I tried to nurse Addie, who was still having trouble eating, so I resorted to the pump. As I stood at the hospital room sink, burning my hands in the water, I looked up in the mirror to see the geneticist walk back in. I stayed there, forgoing the pain of the water for a minute. The look on her face was a nervous smile, not that of a confident woman. I sat down. I was prepared… but numb. The woman in front of me talked about the x-rays, the best doctors in Rhode Island, thorough examination…

Adelaide has Achondroplasia.

My husband asked what that was, but before he could finish his questions, I blankly said dwarfism.

I cried. A lot. I didn’t know enough about what was happening. Was this why she was sick? Would she be ok?

As it turned out, her dehydration was unrelated. She wasn’t great at latching, the summer was hot, and she had spiked a fever. That was why she was sick. Dwarfism was not an issue here.

In fact, here we are 2 years later, and dwarfism isn’t an issue anywhere. Some things are different- that’s for sure. Addie is a pro at staying still for x-rays, falling asleep with things attached to her head and body (sleep study), she can travel hundreds of miles by car without much issue to get to and from her geneticist in Delaware, and she’s encouraged to climb objects to get what she needs (where as other kids are told not to!).

When I think back to those days in the hospital, the fear and the unknowns, they scare me- how could I know so little about my own child? But they also serve as a reminder that what is different is not bad- difference is something to be celebrated and advocated. Our lives are different from most, of course… but it’s an amazing life. And that’s what means the most.

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Toddle…r

Dear Adelaide,

I swear it was just a few weeks ago that you learned to toddle.
But you were still my baby.

You spoke a few words and laughed at whatever you thought they meant.
But you were still my baby.

We read the same books over and over- you asked for them by nickname.
But you were still my baby.

You danced to songs that you knew by tune.
But you were still my baby.

You’re running, while yelling full sentences about soccer, friends and lunch. You request different books by name depending on your mood. You ask for specific songs. You sing full melodies.

But you will always be my baby.

love,
Mom

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Marvelous Monday!

So… it’s a really marvelous time for us. Check out the video for more!

Happy Monday, Reader!

xo

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Filled with Thanks

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Filed under Community, Educate/Adovocate/Make Change

Little Bits Carseat Cover *REVIEW*

I received a car seat cover from Little Bits by Monica Rodgers in exchange for a review. As always, all opinions are my own.

When I was asked if I wanted to do a review of a product that was voted Mother’s Pick by Kate Hudson (yes, THE Kate Hudson), I almost fell over. I quickly emailed my YES first.

Arriving in a beautiful reusable canvas bag, the perfect gift for the woman who has it all had arrived. Due to my car seat’s design (Graco MyRide 65), I knew that the cover would not be a good fit for us, but I knew the perfect lady: my best friend! Also the mother of a toddler: messy, spilling, sweating, adorable toddler, Hadley. As I dry Addie’s car seat from another water spill (she’s only allowed water in the car), I eye the gift sitting unwrapped on my desk. What a perfect, unique creation.

IMAG6200

The car seat cover.

Infant seat cover. Picture from Little Bits.

Infant seat cover. Picture from Little Bits.

Infant seat cover. Picture from Little Bits.

Infant seat cover. Picture from Little Bits.

Toddler car seat cover. Picture from Little Bits.

Toddler car seat cover. Picture from Little Bits.

 

Initially, The Original Car Seat Cover Company in its 2004 launch, this year took on a relaunch under the name Little Bits by Monica Rodgers. Monica’s mission is to inspire her customer in thought, deed, and style. She hopes to to inspire parents to think about doing their “little bit” in the world. It takes a village to raise a child, but also to heal the world and make a difference. And her past reveals just that. Her products have been featured in InStyle Magazine, NY times, Child Magazine, Newport Life Magazine, on the Today Show and a celebrity favorite for parenting gear. Monica’s car seat covers are durable, practical, styling and downright PERFECT for all parents! If you’re looking for other great accessories, lovies, apparel and burp cloths are some great choices!
Please check out Little Bits’ WEBSITE, on FACEBOOK, or contact Monica at rodgers107@me.com or 401-588-4388 for pricing info and to order.
Best part? You, Reader, get 20% off your order from today until December 15th with the code: rhodybloggerA
Are you stumped on a great holiday gift? Order today and fulfill your list with a unique car seat cover for the most stylish parents in your life.
Happy shopping,

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I hope this never ends

Dearest Girl,

I was scared our time in bed, comforted by the others breathing, would end. Once you went into your crib I feared you would never want to lay with me again. Yesterday afternoon you fell asleep on me after an abrupt wake-up from a nap. I carried you into my room and we slept there together- your head in a pool of sweat on my chest- for over an hour. Your binky fell out from between your lips and your breathing was heavy, but restful.

I was in heaven.

MorningNapSnuggles

Sometimes I forget that no matter how much you are growing, you are still a baby. You will, of course, always be my baby… don’t you forget it.

Thank you for the sweet naps, the early morning snuggles and the energy that seems never ending, but when it is, always lands you in my arms with your head resting on my shoulder. RECENTLY I felt like I was failing you- giving up something important for a freedom I don’t really think I was missing… but all we need is each other. Your sweet breath on my neck, even and slow, reminds me that everything in life just falls into place- even when we don’t know it yet.

There was a time when I thought this was as cute as it got…

CarternadMorganjpg

Then there was you.

Love,
Mom

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Time Marches On

… or crawls or walks. At 8 1/2 months, we don’t really sit up yet. While Christmas is in the air, I’m becoming more aware of the gross motor skill differences between Addie and other children her age. In some ways, I consider myself lucky to have a baby who doesn’t move much, yet. I don’t have to chase her around- she stays on her play mat and happily rolls from one toy to the next, but other times I feel sad. I want to wear her on my body. I want to have her sit up and look at me. I don’t want to worry every time she bumps her head that there will be some severe injury. I don’t want to feel the kyphosis in her spine. All good things in time… Sometimes, time takes a long while to come.

It’s Christmas Eve, and as people are tucked away in their beds, I am feeling Addie’s soft spot to check for a buldge. Like I do every night. I wait until she is asleep, then gently feel her head to make sure that there are no signs of hydrocephalus. Then I let her sleep. Just as Santa is making his way down our chimney, I will wake up to make sure Addie’s snoring isn’t getting worse. When the milk has been finished and the cookies all gone, and the big man is on his way to the next house, I will lay back down to pretend to sleep ’til dawn.

I love Christmas, but maybe my love for the season is rivaled with hate for it, in equal parts. I miss my Dad. I hate that we barely put up lights to save on an electric bill we already can’t afford. I wish my whole family could be together and not spread out down the east coast. And I wish I knew what the future held for Addie. There are a million things that can go wrong in life, I just want one wish for Addie’s first Christmas: A lifetime of happiness for my baby girl.

I remember last year at this time:

Christmas 2011

We were in Florida and I could not wait for Addie to arrive. My handsome nephew, Mark, had been born almost a month prior, and I could not stop snuggling on his little self. I couldn’t even dream of a human so small and fragile. But then, my Addie came.

Florida 2011

Brand new Addie

This face is wise and curious:

Addie

She is, as far as I can tell, the reason I am here in this world. But sometimes, I wonder if I am good enough for her. Am I willing to wait for all the good things? Will I show her the right path to take, but let her choose her way? I want so badly to live in the now, but it’s so hard when the past is always nipping at your heels.

My dear baby girl. You are the comfort and joy, the wondrous night, what makes me laugh all the way home where you snuggle into me and keep me warm, you’re my good cheer and you help me live in Heavenly peace. You are my miracle. Christmas, or not.

Happy holidays to all who celebrate. May we never know what God intended for our lives, just that He intended them for us.

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You’re Magic

It’s no surprise I think my baby girl is the most amazing human to ever exist. She is, to me, magic. In the days after Friday’s tragedy, I find myself feeling more blessed and emotional than usual (which is intense). I have the opportunity to hold my baby girl today. I have a million and one things to do before the 25th, but my priority is to hold my whole world and kiss her little face, tiny toes and hold her hands in mine.

Addie arrived after personal tragedy. She came in the wake of a lost sibling. She brightened my life from the inside. She is my first birth… and what a birth it was! I cannot believe we are going to be celebrating our first Christmas together as a family. I cannot say that I didn’t know love without Addie, as my husband is one of the most selfless, kind and loving people ever, but I didn’t know how my mom never beat me (literally), or disowned me, or turned me over to the state. I didn’t know the love my mom had for me until I had it for someone else.

And so, before we go caroling into the neighborhood (or just try to regain some normalcy), I wanted to celebrate another milestone: 8 months!

8 month Addie

Addie!

She’s growing more beautiful by the day, and she is looking more and more like a child and not my infant. I miss her eyes closing at the simplest movements, but I love how she laughs when we dance. Her gentle sighs have turned into deep breaths and her once small movements have turned into rolling herself into the middle of the bed and pushing Dave and me to opposite ends. She is growing up. And I am so proud of her How silly she is just kicking her feet brings a flutter to my heart:

Just two months ago we celebrated with cake (she didn’t have any) and candles and balloons!

She was like "woah!"

She was like “woah!”

6 Month Photo-shoot!

6 Month Photo-shoot!

I love that smile… and I love how silly it is to celebrate 6 months. But, in life, the big stuff is just all the little stuff piled together.

Just a few weeks later, it was her first Halloween…

Standing with some help

Standing with some help

I had asked lots of people to write a letter to Addie, but I’m the only one who did. I think it’s a mom thing, but I want her to know how much I love her- long after I’m not here to tell her:

My Dearest Adelaide,
From the very moment I dreamt of your existence, I felt so in love. Then you were on your way and thought my love could get no deeper. When you first put your head on my chest, my heart stopped. Each and every day I love you more. you are amazing, loving, smart, and so happy! How I got to be so blessed to be chosen by you, I’ll never know.
Happy 6 months!
love,
Mommy

And then she was 7 months…
7 Months

Growing curiosity

Growing curiosity

Next will be 9 months, and then 10. And then, before I know it, she will be walking, talking. Talking back. She will not like me for a while… but I hope she will come back. This brain of mine rattles off ever different circumstance that could pull her away, but she will always be my baby. I hope that I am blessed to be a mother like mine. To love unconditionally and let Addie fly, the way I flew away. But I never went far. I like to sit on the perch, close enough to home, but never back inside. I am encouraged to be on my own, but I know that my mom is always close by, even if that means a 250 mile drive in the wee hours of the morning. Yeah. That’s the kind of mom I want to be.

Happy 8 months to my beautiful baby girl! May you stay forever young at heart! Thank you to God, or whomever is watching over us, for giving me another day. Another milestone. Another month and birthday to celebrate this beautiful baby.

Inquisitive Addie

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