Tag Archives: parenting

Every Six Months…

We made it to Delaware… with minimal traffic- which always makes me happy! Being in the company of doctors who are so confident and can answer questions that I forgot I had, or that I never even thought of always calms my mind.

When we got into the room with Dr. Bober, we sat down and Addie started playing. We talked a lot about where she was developmentally, her walking, her sleep- the usual. We then talked about her ears- which are at the top of my worry list. With her tubes coming out and her infection, we came to the conclusion that she will, most likely, end of with another set. Also, interestingly enough, we discussed the idea that her adenoids could also come out. Our ENT, locally in Rhode Island, spoke about a 50% chance that if we remove the adenoids with another set of tubes that a recurrence of tubes would be unnecessary. Dr. Bober assured me that this number is not reflective of children with achondroplasia.

A new lesson in life.

So… we will check her ears in a few weeks, see if there is fluid in there, and then take it from there. Should fluid still be in there, we will check for swollen adenoids. Fluid, tubes. Fluid and swollen adenoids, tubes and adenoids. Plan of action- simple! Of course there are a million steps in between, but to have a start and an end point makes the middle ground a bit easier to navigate.

So we are moving out of the worry of hydrocephalus, as her soft spot is closed and she has no signs, as well as the concern for central apnea (which seemed to disappear after 6 months) and kyphosis because Miss A is up and walking… and her x-rays looked amazing! Hearing that her spine looks great is nothing short of wonderful news!

And what are we looking at now? The bowing in her legs, which is something Dr. Mackenzie really keeps an eye on. Obstructive apnea and being aware of the signs, such as snoring and bad sleep patterns. And we also have to be more conscious of ear infections, especially because Addie’s tubes fell out already… but we already talked about that! :)

Some interesting facts for expecting mamas:
We have a 2-3% chance of having another child with achondroplasia.
A Level 2 ultrasound after 30 weeks will give us answers if there are size concerns.
We could still have a child with dwarfism without knowing (just like with Addie!).
Bonus?
We aren’t concerned. Knowing what we know now, we are thrilled to be welcoming another baby into our family!

… and then Dr. Mackenzie. After we ended up doing acrobatic acts on the floor:

#aisforadelaide #babyyoga

#aisforadelaide #yoga #downwardfacingdog

Colleen and Mac came in to examine my sweet yoga girl. After a few looks at her, we took to the halls of DuPont for some walking action. Make that running! Knowing that she’s been falling sideways a lot, I was worried about her legs and knees… but thankfully her legs are just the way they are (for now). We are having x-rays done to make sure her legs are going in the right direction and, as usual, monitor if she has any pain or increased falling.  Addie does have the typical hyper-extension in her knees, but she also has hyper-mobility that causes her knees to arc sideways, which could be adding to her falls (but not bad per se).

As expected, we will be going back in 6 months (really 7) for her next set of appointments and are excited for what lies ahead. The best part of going to DuPont are the answers, the new knowledge and knowing that the next time we see these specialists we will have a whole new world opened to us. Given that we see the doctors every 6 months we are never given too much information that we worry for months to come, but we always leave with things to think about.

… we hope we can work with our insurance going forward and are looking to generate more information about United’s vendetta against major medical providers and bringing them back to Nemours! (Hello high hopes!)

Until then, We hope you had a wonderful Sibling Day… Addie loved giving her soon-to-be baby sibling a kiss while we were on a beautiful family walk:

#aisforadelaide #siblingday2014

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Filed under Achondroplasia

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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Filed under Achondroplasia

I Take it Back

Let them eat cake.
Well, not my child, but whomever choses.

Recently I reposted THIS article from HuffPost Parents on my personal Facebook page. I’d love to be featured there, but I won’t do it via parent wars. So here, I offer my rebuttal:

At first read, this opinion holds a lot of water with me. Why go so crazy for every holiday? I don’t see the point. But hey… that’s not my family. I also don’t see why people drive $100,000 cars, hate tattoos or still have flip phones. But judging others won’t change them, it just makes my point of view narrow. I see how some holidays have gotten, for my family, out of control. So I choose to not make traps for leprechauns or host color-coordinated Easter egg hunts. This doesn’t mean I’ve sworn off Pinterest or the fun crafts that come with the holidays, it just means that I don’t stay up until 1am for every holiday making a path of coins or creating a huge mess from a Christmas elf. But you know what? I wrote THIS piece over Christmas about why I don’t want to be judged for my Elf on the Shelf. My parenting my child does not affect you. I am not teaching hate, bullying, judgment or harm. I am instilling memories, silly times and having some fun myself- all in a way that does not overwhelm me. I defend my creepy little Christmas doll because he adds some more wonder to the holiday. As with the rest of our celebrations, we incorporate food, but not candy or sweets, and like to teach a lesson- as simple as a Bible verse or learning to save the change from our pockets. Another child gets 8 nights of gifts, and sure, that seems unfair to a child who only gets one… but there is a story, religion, culture and familial beliefs surrounding all celebrations. It is not up to our children to dictate how we observe holidays, or for other parents to redefine our celebrations.

#elfontheshelf Jingle #aisforadelaide

Who am I to judge you, parent who takes the time to handcraft Valentines for each class member or makes fondant topped crafted confections personalized for your child’s birthday? I am not one to pass judgment on anyone.

If I choose to make an observation, it’s that any child who doesn’t have what another child does and has a tantrum because of it, does not deserve a stressed parent who will appease said child. It is a life lesson- a family lesson, if you will. “We do not celebrate by doing x, y and z for the holiday.” End of story. I know tears and a few “it’s not fair!” arguments will ensue, but it is! Fairness is celebrating with your family as your family does.

When we look to others to make ourselves feel better about what we, as parents, do differently, we are creating this rift we claim to be fighting against. Our lives are all different from each other. We can’t preach love and acceptance to our children if we, ourselves, do not believe it. I am not a lazy parent if I choose fill-in Valentines, and I am not an over-achieving parent if I choose to make handcrafted gifts for all of my child’s teachers. I am simply parenting as I do. Let us release our insecurities. Let’s do more than teach that difference is OK- let’s believe it.

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Filed under Parenting/Family/Lifestyle

Life Hacks for Traveling Parenting Moments…

This past weekend we attended our first regional event for our LPA district. While I love eating out, when you’re paying for everything away from home, while still paying for your home (wouldn’t it be cool to suspend your mortgage if you weren’t there?!), that can be a weighty financial burden. So, we did what anyone would do. We packed food and gift certificates- which we used to treat ourselves to dinner!

In our cooler we had:

#aisforadelaide #vacationisntaboutgoingbroke

This stash, plus a stop for a bunch of bananas, got us through 2 breakfasts, a lunch and snack times without hesitation. We ended up treating ourselves to coffee (because we are coffee snobs) as well as a special baked good from a local bakery, Plum Beach Bakery. For $1, their glorified dough boy left Dave and I stuffed! So, while we can’t control the price of fuel or tolls, we can control our food costs with some planning!

Best tip: PACK WATER BOTTLES! Even when you’re traveling and cannot bring a cooler of food (say on an airplane), you can always bring water bottles for everyone in the family. For this trip, we brought enough water so that we would not have to drink from the tap, but when we fly, we bring empty Nalgene and CamelBacks so we know that we can fill them up at a bar (just remember to tip the tender) and board with it!

And what else do we struggle with as parents who want to travel?  Ahh… The dreaded hotel room-with-a-child situation. Addie too big to sleep in a Pack n’ Play and the hotel cribs are often not full size, so those are a no-go, too. A big bed? By herself? No rails? No thanks.

But wait!
Those decorative pillows are not for naught! They are for bed rails!

From The Sea Crest Hotel website (Falmouth, MA)

From The Sea Crest Hotel website (Falmouth, MA)

Using the large cylindrical pillows under the fitted sheet, I created bumpers along the sides of the bed. Addie was able to sleep by herself, safely, while Dave and I watched over her and cringed each time she kicked… knowing it would have been his face, or my back, had we not put what we had at hand to good use. Sharing a bed with your child is a beautiful thing- until the day your child becomes a smallest bucking bronco one has ever seen.

#aisforadelaide #lifehack #hotelhack #travelhack

She only looks innocent. Don’t let her smile fool you.

#aisforadelaide #seacresthotel #lifehack

What travel-hacks have made your life easier? Share below!!!

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Filed under Make it, Parenting/Family/Lifestyle

Because Normal isn’t What You Think…

My life is different from your life. It’s got nothing to do with you, your child or your relationship status. Actually, it does. That’s it exactly.

We are different.

Do you need me to prove it? I went to private school. My pinkies are curved. I only have one living parent. I love my step-father. I have 4 siblings. I am a dog person. I prefer reading a book to reading on an e-reader. I have blue eyes. I grew up in suburban Philadelphia. I haven’t gotten a haircut in over a year and a half. Ice hockey is a way of life. I enjoy running. I own a life insurance policy. I think water is delicious. I never want to own another car besides a Subaru.

Did  you get all that?

We’re not the same.

But that’s ok.

Somewhere along the lines, someone thought that someone like me could be considered normal. Here’s a few things that you may not know.

I have flat feet. I’m above  average height for a female at 5’8′. My father died while myself, my mother and sister were holding him. I’ve suffered from depression. I  don’t love where I live. I have a child with special needs. I’m addicted to social media (but I won’t be detoxing). I have over 30 tattoos and a permanent piercing. I’ve totaled more cars than most people own in a lifetime. I’ve miscarried. I have anger outbursts that I’ve worked almost 30 years to control and still struggle with.

But, someone thinks I’m normal.

I know this because I’ve been asked how someone normal has a special baby. Well, here’s how it goes. Two normals get together- you know, in the between the sheets, don’t tell mom kind-of-way. A baby grows. It’s an amazing baby. The parents, those normals I told you about, have dreams and hopes for this baby. Then the baby is born, and it’s so much different than the normals expected. It’s not better, or worse. It’s different. This child is, GASP, normal too. Sure he or she is different, but all humans differ. If you believe that there are two people alike, you’re only fooling yourself. All children are special. They are all unique- even those really strange ones like my brothers who are identical twins. Somehow those kids, 21 years later, are night and day… both amazing, handsome, special kids headed in two different directions.

So what’s normal? How the hell do I know?

I’m a tall woman, with crooked fingers and flat feet. I’ve encountered death and loss the likes I don’t wish on my enemies (do I have those?). I’m married, but is that even a cool thing to be anymore? I live with  OCD issues paired with insomnia (no, I don’t consider any part of my life to be suffering from…).  My normal husband? He’s a 37 year old who made a career change at 35. He went from a single guy-musician-business owner, to husband-solely-supporting a family of 3 (soon to be 4!) in under 5 years. He’s not very tall, or dark, but he’s really handsome. His nose is big and his heart  is huge. His normal-self didn’t own a car for 6 years. In fact, he’s so normal that he chose me to marry (as described, I’m as normal as they come, no?).

Normal? It’s not what you think.

What are you? What am I? What is Dave? And Addie?
Well… we’re all human. Let’s act accordingly.

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Filed under Educate/Adovocate/Make Change

Mother

It’s such a simple word.

moth·er
ˈməT͟Hər/
noun
noun: mother; plural noun: mothers
  1. a woman in relation to a child or children to whom she has given birth

verb
verb: mother; 3rd person present: mothers; past tense: mothered; past participle: mothered; gerund or present participle: mothering; noun: mothering

  1. bring up (a child) with care and affection.
    “the art of mothering”

This is how a book of words, all the words we recognize in the English language, defines the most important woman in my life.

So how would I describe my mother in less than 1,00 words?

She’s a rock when the whole world is on a roll. She’s the person that took responsibility over the lives of 4 other humans when her partner in crime, my father, passed away. She is what a pillar of strength hopes to embody to define itself. She is power. Beauty. Courage.

But she never had to try to be these things. That’s the most amazing part. Life never happened to her. She happened to life.

I grew up hearing: no one makes you feel a certain way.

Which is why I do not choose the love I have for her. It’s just there. It’s all in my heart and soul. It spills out as I bounce questions off her, call for advice or press the right buttons so Addie can hear her Mima’s voice.

I cannot help but love where my heartbeat first originated. I love you, Mom.

Happy birthday.

xo,
FTN

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Filed under Parenting/Family/Lifestyle

Marvelous Monday

What a wonderful weekend- jammed packed with all I am thankful for and all things dwarfism! I have mentioned LPA about a million times, and all the support they offer to the LP community, but there is so much more than that.

There are lifelong memories made by friends who see each other a few times a year. Parents who lament all the silly things that we get that no one else truly does. Not life-altering stuff, but finding shoes that fit, are cool and also comfy. Why moving a faucet can make life easier for your child. How to hem jeans. It’s the same old parenting things we all think about, but rarely do we encounter so many seemingly minuscule things over and over and over.

The best part? When Addie gets into a large group of kids, there are no worries because this community is watching over her- everyone.

This mama may be suffering from serious pregnancy hormones, but when Jackie and Avery (two fabulous young ladies) took Addie’s hands and walked her to their dance circle complete with other girls, and encouraged her to dance, laughed with her and never let her out of their sight, I walked away, took my seat, gripped a cup of ice water and swallowed my tears. My face was hot. My body felt cold.

#aisforadelaide #firstdance #lparegional #2014

My daughter already has an amazing life.

I watched what her Spring and Fall would bring each year, as our District regionals pass by. I saw middle school dances and girlie laughter about things that us parents would just never understand. As I sipped my water, surrounded by women I’ve grown to love in our brief, but powerful 21 months as LPA members, we laughed at my verge of crying.

#aisforadelaide #ladiesnight #LPAspringregional2014

I have an amazing life.

These moments are not forever. We have our struggles. We have some of the happiest moments of our lives without the LPA, or anything related to dwarfism. Being little, or big, or average does not define us. Having such fabulous friends, regardless of distance, giving my child the opportunity to live her life and being guided by those around me. That defines me. There is nothing like knowing that your life changes shape when you let go of the reigns and just live.

With $100 in our pocket and a cooler full of fruit, bread, peanut butter and tuna, we went to Cape Cod. It was our first regional with our LPA district. We got to ask questions. We got to answer a few. I shared a conversation with men and women. Some were my height, some were not. But the conversations were the same. Our kids were being crazy, they all needed to sleep, we all enjoyed the sunset at the banquet, our clothes seemed to be getting tighter as the New England winter ceases to end. I joked with my ladies about this and that. We all ragged on each other, shared hugs, high-fived the  kids.

Being members of the LPA has allowed us to NOT define our family by dwarfism, but to learn in a safe, well educated environment for ourselves, our daughter (and future baby!) and those who will learn from us. To balance our lives between doctors and normalcy, because at the end of each day, I am doing the same as any parent… reading 102 books before bed, watching my child guzzle more water than they consumed the entire day and praying they don’t spring a leak in the night, kissing her cheeks and watching the monitor (sure, I’m also listening for snores and leg movements, but that’s neither here nor there). Addie? She’s just like your child. And me? I’m just like you. Tired, stressed and loving every minute of this crazy, fast-paced thing they call Parenting.

#aisforadelaide #swimming #capecop #seacresthotel #lpaspringregional2014

And my random  of the week? If you missed it before, don’t forget to check out this awesome video below <3 <3 <3 (Yes… I’m a bit excited to share after holding it in for 13 weeks!!!!!)

Happy Monday, Reader!!!

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Marvelous Monday

I’ve reflected time and time again about how beautiful the weeks are as they pass. Even when they really aren’t anything most would write home about- they are what make the big things seem SO spectacular. The mornings you get 5 extra minutes of sleep, a sip of hot coffee and some of the sweetest unintelligible love babble spoken from the lips of a small human you created. Those are just weekend mornings… but they are so much more when they’re too old to climb into bed with you. Too cool. Too grown up. Too on with their own lives.

What a beautiful opportunity we have as parents- no matter how we got here- to raise these people, shape their minds and change our whole perspective on the world with just the blink of two small eyes and the squeeze of one small hand firmly wrapped around our finger. Our children change the whole game of life.

Because of becoming a parent. Because I’m a parent to a child with dwarfism. Because I am a parent to a child with dwarfism who started a blog.

People come to me.
They ask questions.
They seek answers.

But, most of all, they want to hear the words so many doctors just won’t tell them: it’s going to be OK.

A young woman named Hannah, is such a parent. She asked me lots of questions on Facebook, through email and messenger, and then I gave her my personal number. We texted about achondroplasia, her son Jude, due in April, doctors, and being parents- before anything, we are just your average parents wanting the best for our babes. We talked about her upcoming shower and how excited she was.

Then an email. An emergency. A request for prayer.
At just 32 weeks, Jude was in distress and the doctors were making calls that scared Hannah and her husband Sullivan. An emergency c-section? So early?

We prayed.
Every night.
Sometimes it was to God, other times to my Dad to ask for his protection and sometimes just letting out tears to the Universe to be fair.

And then days passed, and his heartbeat was strong.

Brave Little Warrior

As Hannah passes 33 weeks, she begs her body for more time. To hold her sweet warrior, Jude, safely inside her and help him develop stronger each day. And we, The Martinka Family, are pulling right along with her.

This week, Reader, I ask you to send your love, messages and prayers to the Peters Family. You can read more on Hannah’s blog HERE, or join their Facebook page HERE to get updates.

Thank you for sharing all your Marvelous Monday with me. Have a beautiful week!

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Filed under Achondroplasia, Community, Marvelous Monday

10 Items for YOU When Your Child is Admitted {Guest Post}

Taking Care of YOU When Your Child is Admitted By Claire Evans

I learned the hard way that I was forgetting myself when I was stuck in a hospital for 2 weeks with my sick special needs child. It is easy to do. Put your children first, yourself last. I lived by this. So our first long hospital stay I packed everything to make her comfortable and nothing for me. 3 days in, I was longing for an ounce of comfort. Since I am a single mom and my parents were so graciously watching my other 2 daughters while I was at the hospital with my middle child, I had no one to bring me these things that I realized I needed while we were there. And here I am, getting ready for yet another hospital stay, our 4th I was sure that other moms were as well. And sometimes we need to be reminded that in order to take care of our most precious blessings, we must take care of ourselves.

Here is my list of the top 10 must bring things for you for when your child is admitted to the hospital.

We all know that you are going to make sure that your child has every damn thing he or she needs but what about what you need? This is a simple list but you would be surprised at how important these items are when you are in the middle of it all.

1.) Tennis shoes – You will do so much walking at the hospital. More then you realize. The first time, a 2 week stay, I wore flip flops. Worst. Decision. Ever. And I had no way of getting comfortable shoes. Invest in a good pair of tennis shoes. Between walking with your child for testing and procedures, walking to the cafeteria or taking a moment for yourself to take a walk, you will do a ton of walking so be kind to your feet! There was one night that I was so overwhelmed, I asked a nurse to come sit with my sleeping child and went on an hour long walk around the hospital. Sometimes you have to just walk away to compose yourself or to just get a break. And it is ok to do so. (Let me repeat that, IT IS OK FOR YOU TO NEED AND TO TAKE A BREAK) You will be glad you have those tennis shoes when the time comes and not flip flops like I did.

2.) Pajamas that cover you, Slippers and/or socks – Let’s answer why this is on my list with a story… We were moved to extended care room the second week and I FINALLY had a bed of my own to sleep in. I was sleeping in a nightgown, got hot, and kicked off the covers in my sleep. The nurse came in and I was sleeping on my tummy, pink and white polka dot underwear for the world to see covering my big huge butt! She woke me up because there was a problem with my daughter and while we were both standing by the side of the bed, she complemented me on my underwear choice! OH THE HORROR! MY CUTE MOM PANTIES HAD BEEN SEEN BY ANOTHER HUMAN BEING! Thus the “bring pajamas that cover you” rule was born. Think shorts and a tee shirt, pants and sleep shirt. Make sure the girls stay tucked in on top and the underwear stays hidden on the bottom. Sports bras are also my best hospital friend because they keep the floppy mom boobs from falling out of a tank top sleep set! Slippers and Socks should be a no brainer, you would think. But the first time your bare feet hit the hospital floor and you have to run down the hallway looking for a nurse in the middle of the night because the call button won’t in a matter of a few months. And it led me to write this. Because if I was forgetting myself, work, you will be wishing you packed socks or slippers.

3.) Extra, Extra, Extra changes of clothes for you – There will be body fluids. There will be blood. There will be spills. I can’t tell you how many times a day I had to change my shirt. And I stunk. I spilt food on myself, my daughter spilt food on me, my daughter puked on me, and her IV squirted blood on me when they were placing it. Remember, you will be super close to your child during this time and it gets messy sometimes. Pack more than you ever think you will need and you will be happy for that fresh clean shirt and pants when you need them. And don’t pack anything you wouldn’t want to get ruined. Because it can and will happen.

4.) Towels – The towels in every hospital I have been at have been so small; they could barely cover my 2 year old. And they are itchy and don’t absorb anything. Pack 2 towels for you and 2 for your child. They can be easily hung to dry and reused after a quick shower and some hospitals offer free use of a washer and drier for parents who are literally living in the hospital with their children. This is a small comfort that you will be grateful for.

5.) Snacks and drinks – Sometimes, you don’t have time to eat. Sometimes you can’t get down to the cafeteria to get yourself dinner. Sometimes the hospital does not provide food for the parents. Or you are like me and forget to eat anything at all until your body is shaking with hunger and is screaming at you for food RIGHT NOW! Pack healthy, protein packed snacks that you can quickly grab in a hurry. You need to keep your strength up and remember to eat, even if it is just a granola bar. And when you see a mom pacing the hallways with her sick child, offer her a snack. Because when you are living in the hospital with a small child, it is the little things that mean the most. Even a small snack. One of my favorite quick hospital tricks is Carnation Instant Breakfast and a carton of milk. The nurses ALWAYS have access to milk. Ask for a carton and dump a packet in, close and shake and you have a quick and easy breakfast option! And don’t forget to bring water. Bottled or by the jug. Keep hydrated without paying $5 for a small bottle from the cafeteria or the vending machine.

6.) Quarters – Quarters are GOLD in the hospital. The vending machines don’t always take dollar bills and some are equipped to take credit cards and I have been accidently charged $10 for a candy bar before. Bring quarters! Even though I suggested that you bring snacks, you may have a craving for something you didn’t bring or you may want to treat your child for being a brave little girl or boy! And that candy bar you want to devour in the dark hospital room at 3 am…. It’s normal, I’ve done that too.

7.) Movies and magazines – Sometimes, your child sleeps for hours, especially after surgery, and there you are in a tiny hospital room with nothing to do but worry and pace. During these times I could never nap because I was too nervous. So I packed some movies. It kept me busy while I held my sleeping child. No dramas, nothing heavy. Light comedies are best. Another piece of gold in the hospital, magazines. Quicker to read then a book and no worries if it gets destroyed. Also, trading magazines or bringing magazines to other mom’s is a good icebreaker to make some new friends. And we could always use more friends; especially mom’s who understand exactly what we are going through.

8.) Travel Coffee Mug – There is always coffee at the hospital. It may be nasty, but it’s caffeine!!! Unfortunately, those tiny dainty little cups don’t do anything but cause an annoyance. And when I want coffee I don’t want a sip, I want a mug full! Bring your own spill proof coffee mug and fill it up whenever you see a fresh pot! It will also keep your coffee hotter for longer! If you don’t drink coffee and prefer tea, bring the tea bags with you and when you find an empty pot, brew a pot of hot water for your tea. You deserve it!

9.) Sugar packets, Salt Packets and Creamer – These are always in short supply. Stock up and keep a stash with you in your purse or overnight bag. The hospital food is bland. The tea never comes sweet and the creamer containers are always empty. THIS WILL SAVE YOUR PALET!

10.)Laptop, Chargers, Chargers and more Chargers – Laptop for researching and understanding medical terminology. Finding out more information on a new diagnoses or procedure. Or just connecting with Friends on Facebook. It is a good thing to have with you and will be used a lot. You can also watch movies on a laptop!!! Your phone is your life line outside of the hospital while you are there. Bring at least 3 chargers with you and carry one with you at all times. My cell phone died in the middle of my daughter’s surgery and I could not contact anyone hours away to tell them what was going on or check on my other 2 daughters. Leave one in your hospital room and charge that phone whenever you are in the room and keep a back up for emergencies.

I hope these 10 little suggestions help you take care of yourself while you are taking care of your children at the hospital. And if you ever see me and my daughter at the hospital, stop on in and say hi! We love meeting new people!!!

This article was written by Claire Evans, mom to three, savior to many. More about Claire? Check out her SITE and on  Twitter and Facebook!

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Filed under Achondroplasia, Community, Educate/Adovocate/Make Change, In Other's Words

Marvelous Monday 2014!!!!

HAPPY NEW YEAR!

Now that’s out of the way, onto our usual MM post (thankful, dwarfism, random)… Hold onto your hats. It’s gonna be a long one!

This week I am thankful for the 2 weeks Addie and I have had with Dave. Yes. TWO weeks. We left for Philadelphia on the Saturday before Christmas and we got back to RI the following one. Dave headed into work for Monday and half of Tuesday, had New Year’s Day off, then Hercules dropped some snow on us and Dave was home Thursday and Friday. As he heads into work today, I hope he feels the relief of being back to a schedule.

#aisforadelaide #hercules #newengland #snowstorm2014 #blog #asnowday in the Martinka house

Since his time off I have not gotten out of bed before 9am. Most days, not before 10… and there were a few 11′s in there. True story. I ate a hot breakfast almost everyday. I showered more than twice a week. I dried my hair, by myself. I did my nails, put on a face mask or two, deep conditioned my hair, read half a book, caught up on reading some of my favorite blogs and resumed some semblance of a daily workout. This refreshing end/start to the year(s) was so important to getting my head on straight… and brings me to other things to be thankful for- like the way Dave has changed and his awesome boss.

Spending time alone with Addie when she was an infant was hard for anyone but me- her sole provider of food and the one who understood each cry and sound. Now that she’s (incredibly) vocal, understands requests and direction and eats pretty much anything that’s not nailed down, I find myself alone when Dave is home. Off on some adventure, Dave steals Addie while I sleep to make food, run errands, or read stories in her bedroom. We both give each other the eye in some strange competition of Who Will Be The One She Wants to Put Her to Sleep Tonight. When she’s hurting, Daddy can heal her pain and when she needs snuggles at night, she often begs for Daddy to rescue her from the crib. While it is nice to not have to get up at 4am, I’ve found myself pushed to the edge of the bed, sad. I miss the days she needed me so much.

#aisforadelaide What happens when Dave doesn't work #blog

Then there is the look. The look of peace and warmth. It’s what Dave’s face looks like, even at 6:30am when hungah spews over and over from the mouth of a half-awake toddler into the open space of our room. When she cries waahwaah hungah nanaaah and he hops up and asks, “you’re ready for breakfast, Bug?” There is the look of total contentment. Whatever happens to a woman to feel the love she does for her young happens to a man, too. I’ve seen it first-hand.

#aisforadelaide #blog #weekend

I’m also incredibly blessed that Dave’s boss recognized that his employees come in by train from Boston and from 50 miles away by car, and decided to cancel work before the snow hit. With a few calls and some research, Dave stayed on top of the tail-end of his work week from the safety and warmth (and yet, drafts?) of home. For a job he stumbled upon with a start-up just 3 years ago, his career is blossoming in ways we never could have foreseen.

*  *  *

And so she grows. No really. I just wrote about this on a post of the same name: AND SO SHE GROWS, AND SO SHE GROWS. If you know Billy Joel, you will see my play on words from And So it Goes, and you may recognize the true heartache that comes with watching your child grow up mature. When Addie was diagnosed, we were warned about all the things she would never do and we were told of all the milestones we would miss. We were given predictions about her height and told she had to be on a hard surface always and most toys were a no-go and her balance would be bad… and so on. And after all that, I was overwhelmed and sad. We got rid of bouncers and carriers and sleepers. I found toys that were good for her, but not always mature enough. And I didn’t know where to go. As a new mom to a special needs child, I wish I’d known all of THIS.

But I didn’t, and I wasn’t prepared for a doctor to be wrong. But she was. Not because all babies with dwarfism do walk before 36 months, although many do, or because she’s not as small as I once believed she would be, or that she has decent balance. No. I wasn’t prepared because I got lost in a negative world. I don’t always see Addie as growing up… she doesn’t always gain an up, but she does grow in her intelligence, in her beauty, in her love and understanding and in her compassion. Initially I was worried I would hinder her into a sheltered life- one where I would hide all the bad. And becoming CPL didn’t help that fear. But then I saw. I saw her say “HI!” to everyone she meets, and wave with an exuberant “BYE PEOPLE”, as we exit any given location. I have witnessed her love, as I cook dinner and she reaches around my leg with a hug and a pat and whispers love you, mama so gently into the back of my knee. She loves me, without prompting or pressure, without even seeing my face, she buries her own into my leg and expresses her own emotion.

Do I protect her? Yes. Just as I will put a helmet, and knee and elbow pads on her to ride a bike. Just as many parents do. I didn’t wear knee or elbow pads and my helmet surely did not fit as well as they do now… does that mean my parents didn’t care? Am I just over-protective? Should she never ride a bike?

I could wrack my brain forever. I could worry about all the things you might think of how I parent, or how your neighbor might feel about me, or that dude who anonymously comments on my posts in the most negative of lights. But then, I wouldn’t be parenting, I would be absorbed in my thoughts about everyone else’s thoughts. So, let’s call it a truce. Let’s make a pact.

This blog was started with the intention to education about dwarfism, but if I focus on dwarfism alone, I will alienate myself and you. I will become obsessed, immersed in so many details that I will come to define Adelaide as a person with dwarfism, and not just see her difference as a part of her. I will come to define all people with dwarfism as just that, and if I do that, I will only see myself as a white woman. That will be who I am.  But it’s not. And so, this blog will continue to educate, advocate, spread awareness and push buttons. I will share stories of change and some of adversity. And here’s the best part: I don’t care what you think. While I would love your support and hope you stay to read more posts, what I crave is equality. For my child, for your child. I seek name calling, bullying and fear of the unknown to become a thing of the past. Ask questions- all of them. I want to answer. I want to know your fears so that I may assuage them. I want you to know what terms are accepted to call a person with dwarfism, and I want you to know that you do not have the right to dictate what others feel. Neither do I. On this blog, the m-word will not be tolerated, whether you’re speaking of pickles or humans or anything in between. The word? Midget. And that’s the end. Those are my feelings, on my blog that I write.

So, I won’t judge you, on your blog, should you choose to write one, and you will not judge me.

x_______________________________________________
      emotionally sign here

*  *  *

You’re still with me? I hope so!

I wanted to recap last year’s resolutions (only 3), which I found when I named my resolution post this year: THIS YEAR, I RESOLVE. Somehow I picked the same name, two years in a row, without trying. I guess it’s a series, now!

From last year’s POST:

1. Be nice (to me): Yeah. That. Well… I am better, and I don’t bash myself in front of Addie, ever, but recently I’ve noticed my sweet girl pointing to the scale and saying, “mama.” So, clearly, I still need to work on that. I wish I could take the scale away, but I truly believe it is useful- especially for long runs. I weigh myself before and after to make sure I am not dehydrated. I also check my weight more often than I should, but now I need to be aware of not doing this while Addie is awake. I think this is something many women need to work on, and clearly I am still trying to justify my need for a scale. Regardless, though I am nice-r to myself, in no way am I nice.

2. Know when to hold ‘em: So I still like to fight, but Dave and I are good about holding our tongues and I try to not speak to him in sarcastic tones because I truly do not want Addie to pick that nasty habit up! This is something I am still working on, but I think I will always have to be conscious of my words and actions as I’m a bit of a sailor-mouth with a temper.

3. Earn it to own it: Nailed it! I took time for myself each day to write and came up with 269 posts last year. This year I aim to write posts with just as much heart as ever… and add some time to take care of my fitness goals, too!

So there it is… Monday! I hope you have a beautiful week, Reader!!

xo

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