So, Monday… you’re back. Thankfully, my Friday this past week was pretty awesome as I spent it with my bestie and her baby girl, and NOT getting rear ended on 95 (BONUS!). I hope everyone had a beautiful weekend, car accident free, as well!
This week I am thankful for finishing. I guess this really means I’m thankful for trying, but really… getting to the end was triumphant! Last week, I ran a 5k the day after we were in an accident. It was a bad choice. I cried. My ankle hurt and I had a headache that didn’t go away until Wednesday of this week. But I did it. It was a terrible time (nettime of 34:12) on a course I’d trained for weeks… my hopes of a sub-28 minute 5k were dashed with one “just for a second” glance away from the road.
But, I finished. And I am thankful for that. I am thankful I have “it” in me to keep going.
As someone recently pointed out to me after commenting on Addie being small, well she doesn’t look that different. Maybe they made a mistake. I’m not quite sure who they are, but the blood work from Johns Hopkins was conclusive- Addie has Achondroplasia. This week, my dwarfism fact is that Addie isn’t that different! It seems like I preach weekly about my baby girl being able to do anything she wants and that she is just like everyone else… and finally someone agrees- no matter how inappropriate they make their agreement sound. There are people with forms of dwarfism that just make them short, yet proportionate. Others, like Achondroplasia are disproportionate with short limbs and a larger head, others have short torsos and average limbs, some are still being discovered!
When Addie is next to her peers, sitting on the floor, they are almost the same height. Addie’s torso is [almost] average to her age- she wears a 6 month top. However, when she stands next to most kids in the 11-14 month rage, she is a few inches shorter. There are other differences people have noticed- and seem totally unabashed about telling me about: her neck is short, she has lots of rolls in her skin, her sunglasses don’t stay on (the bridge of her nose is flat), she’s still crawling like that (yep!), she looks like Buddha, her head is huge (so is your mouth!)… it goes on, but please know, these are just features of the type of dwarfism that Addie has.
Truthfully, she might never grow out of some of these things, and others she may. The best part of the whole parenting game? Growing and learning [with your child] everyday! Most things people say, they mean with the same innocuous connotation as “the sky is blue”, so I try to just laugh it off. Most of the time, it’s not worth explaining more to people who misspeak. Addie is beautiful, smart, funny hysterical, loving and, like her mama, flirtatious. Sure, some things are different about her… then again, some things are different about all of us. Thank you to the people who look past everything else, into those blue eyes and see what we, as her parents see: Adelaide.
And my random of the week… sometimes you just have to let go! A friend of mine came up from DC- which she does so rarely- and I was all too excited to meet her out for lunch. Dave, thankfully, was able to come, too. We never get out and I was super happy he came!
We were seated outside at Harbourside Lobstermania, and enjoyed the afternoon on the water. The service was great, the weather was perfect and the food was pretty reasonable- although I totally should have gotten some seafood and not the South Western Salad (it was good… but I totally drooled over Dave’s fish & chips!). We didn’t sit and talk about the piled up paper in envelopes (they go by the name Billzzzz), or the unrelenting issues in Rhode Island… we talked about Dave’s upcoming business trip to Taiwan (WHAT?!?!), the LPA conference in DC where we will go out to eat at a college friend’s new place (Beuchert’s Saloon), and love, babies, vacations.
For one afternoon… we just let it all go. And man, did we need to!
Sure, Dave came home and worked all night in the basement to make up for the fact that we went out, but he was happy to. He was happy to treat his ladies to a nice afternoon and to hang out and enjoy a beer. Thank you to Alex for her awesome photo skills:
Good morning everyone! I write to you from my office at 6am. I usually don’t write this early, but my husband is finally home from his business trip and that means the dog and cat are going berserk! So, I’m awake, and he is asleep with Addie in bed. Must be nice.
Anyhow, let’s begin our Monday!
I read this piece on Katie Couric’s website regarding the book Far From the Tree: Parenting a Child That is Different Than You (I can’t wait to read the book), and watched the video of the mother whose daughter is an LP. It was nice to see another parent’s view on their different family, and watching forced me to reflect on a few things I had not thought about.
Kiki has a different type of dwarfism than Addie. She will, most likely, always need a chair to go long distances and she has different medical needs and issues than Addie. If I have not mentioned this before: dwarfism is not dwarfism is not dwarfism. By that I mean in the same way your broken bone is not my broken bone, my parenting skills are not your parenting skills, my Ford is not your Range Rover. There are over 200+ types of diagnosed types of dwarfism and countless others that are still baffling doctors around the world. Undiagnosed forms, children with little to no symptoms and others who are symptomatic without knowing why. I tell you this because my concerns differ from any other parent, as expected, but also from this Kiki’s mother, in particular, because our children do not have the same diagnosed condition.
That being said, I think this video is wonderful and truly made me think. The three things that stick in my mind are:
1. Kiki’s house is not adapted for her at all. This is something I want to do for Addie for the exact reason Kiki’s mother doesn’t. I want Addie to have one space in this world for her. Nothing in the outside world will be built to suit her height. She will reach, climb and ask for many things throughout her life, and I would like to offer her the opportunity to have one comfortable place, where she won’t need to do anything to reach what she wants. Where she can stand on her own two feet. Where it is safe.
I have thought about this since June 22, 2012, when she was diagnosed. I remember one of my first thoughts: the rise on our stairs is too high. I know you’re thinking she can use railings, she can do it. Many LP adults and children live in homes with stairs… but you’ve never seen ours. My husband, standing at 5’9, falls up them all the time. We have owned this house for almost 5 years and he still doesn’t have the ability to walk up the stairs. My mother, who ran a half marathon with me a few years back, gets winded and feels like she’s gone through a workout every time she visits. And my best friend is actually afraid to carry her baby down the stairs when she’s over- she grips the railing like there’s fire down below.
8 1/4″ from the top of one stair to the top of the next. Average rise is 6-7″. Do we replace the staircase in our 1928 home? Nope. We plan on selling if the market ever allows us. I would never feel comfortable leaving Addie at home (in her teens) in a home that simply isn’t safe. I haven’t left her with anyone, in part, because I’m afraid someone will fall down the stairs with her. I love my home… my husband and I rebuilt much of the inside, but Addie’s safety (and some more room for whenever baby #2 comes along) are priority.
Keeping to this theme, I’d rather have a bathroom just for Addie (with a tub she doesn’t have to climb to get into), as well as a counter in the kitchen with her own sink and some space for cutting. I want her to know how to use the kitchen and enjoy our love for cooking in a safe manner. When she is an adult, she can choose to have a stool or a custom home, and she will always need a one to reach the stove and oven, but wouldn’t it be nice to have a space of her own? Our kitchen is not big enough to offer us the renovation option. Another reason, our beautiful little home will not serve us forever.
2. Kiki’s mother wonders what will happen to her daughter when she is gone. She worries about how she will get around, if she will be ok and who will take care of her. Quite simply, I didn’t have to think about this. Not only does Addie have a wonderful support system in family and friends, she has a wonderful extended family in the LPA. She will always have someone to lean on. Besides… when I’m gone, she will keep rockin’. Just like she does now!
3. Parenting crisis. Kiki’s parents (from what I gathered) are not together anymore. There was much stress on their relationship, I’m assuming, from what was briefly touched upon at the end of the video. I have thought long and hard about this, and though it’s not easy, I am very blessed to have such a hard working hubby. He understands that her appointments don’t allow me to work full-time, especially with him having a 1+ hour commute everyday. In an emergency, Dave could not leave work to get to Addie, or pick her up from places before 8pm during the week, and he works weekends, too (7 days a week… I miss him all the time). Without full-time, it isn’t financially worth it to work. We did a breakdown, and because Dave can never help with general appointments, sleep studies, surgeries, follow-up appointments, or sick days, I would need 30 days a year (give or take). It took 2 weeks and 13 phone calls to get the audiology department to send information to the ENT. It took 4 phone calls to get the referral for Addie’s sleep study to the right office. It took 45 minutes just to be seen by the ENT, 70 minutes to be taken into the sleep study evaluation and we always wait at least 20 minutes at the audiology office. Addie’s surgery includes going to the hospital to speak with the anesthesiology department about Addie’s needs and supplying information to them ahead of time so they can schedule the proper person to put her under, the actual surgery and a follow up. Let it be said. I am stressed. I smile. I love all over my beautiful baby. But, it takes a lot of work to get a geneticist (and his PA), orthopedist, ophthalmologist, pediatric otolaryngologist, audiologist, Early Intervention nurse, speech therapist, pediatric sleep specialist (neurology), and, of course, pediatrician on the same page.
Sometimes my marriage is stressed because of money. Sometimes because I work a lot during the day, but I never get out. And sometimes, because I want someone to rub my back, darn it! But I know that I would rather do this crazy thing called life with Dave, than ever attempt it without.
That being said (and A LOT was said), let me tell you what I’m thankful for this week:
DAVE BEING HOME!
Or… at least being back on US soil. That is (dot. period. end) what I am thankful for. Hands down!
Dave left Wednesday for London on business. Let me tell you about my week:
Wednesday I was up at 3am with Dave. I couldn’t fall asleep again after he left, so I stayed up. Later that day Addie had two appointments. We went to the ophthalmologist where they checked to make sure her vision was OK and was not in any way affected by any extra fluid in the head. Dr. Donahue is so NICE and was great with Addie. In the waiting room, she talked to an old man (she yelled at him) and amused countless people with her pterodactyl impressions and smiles:
Telling the old man what was up! (Hair clip by Sweet ‘lil You) (Bib by Type A Style)
This is Adelaide. She is part pterodactyl.
They also dilated her pupils. This was 10:30am. Yikes. She looked a bit scary, but still beautiful!
Who else falls asleep when their pupils are dilated? This doctor was clearly boring!
Then we went to the ENT (Dr. G is amazing, and there will be a longer post about this)… time to schedule surgery for my baby girl. It was a sad time for me and with the 45 minute wait to be seen with dilated pupils under florescent light… Addie was a peach (note: sarcasm). So, three more appointments we scheduled for various ear-related things, and we were back in the car and headed home. Addie seemed upset, but she took a short nap while I wrote and recomposed and then she was her jovial self again. I still had not slept, and seeing as 5pm was coming quick, I decided I would just pass out after Addie went to bed.
She didn’t look happy, and so it was.
Doesn’t feel so good.
Wednesday night Addie was awake every two hours. This had never happened. Ever. Even when she came home from the hospital, she slept 3-4 hours at a time during the night. What was happening?! Thursday at 6am I took her PJ’s off to find her body hot and diaper dry. 101°. Doctor. Ear infection. Unreal. Day spent in bed trying to break the fever, administer the pink stuff (Amoxicillin), hydrate her with as much milk as she wanted and snuggling the heck out of her pain. She slept, I kept watch. Plans to get out and see a friend were cancelled and staying home alone with Addie was in store. We did play, however. What better way to use our medicine dispenser than as a toy?
Thursday night was better, but she didn’t sleep as soundly as usual, so I stayed up watching the monitor, jumping up to console her when she got too stuffy. She wakes with a few screams during the night as it is (apnea), but usually falls right back to sleep. This discomfort was different. This broke my heart. No suctioning, medicine, milk, humidifier or steam was helping.
I brought her into bed with me where she “tree-frogged” all night, but was much happier. We sent this video to Daddy:
Friday morning, still sleepless, Addie was in better spirits. We played and had a great time. She was feeling better, and I was hoping the reign of being cooped up in the house could end. And it did. While playing, Morgan (the cat) snuck through the toys. Carter (the dog) gave chase. Practically running his 70 pound body through her, he lifted Addie up and over, into the wall. Carter immediately felt bad, but Addie, I’m sure felt worse. And me? I was in tears. I gave her some milk to calm down, and called the doctor to tell them we were on our way.
I tried to email Dave to get him to call (the WiFi in London is terrible), but still, he could not get through. All I could do was send him this picture. He was horrified.
The doctor laughed when he saw us again (second day in a row), but cringed when he saw Addie’s head. He felt the bump and skull, checking for bulging fontanelle and a fracture, but she was smiling up at him, happy as could be. By the time we got home, the head was already looking better (and her hat helped hide her trauma). By the next morning, just a bruise and small cut.
Saturday was amazing. We didn’t go to the doctor once. I caught up on some sleep and snuggles, and got all of the laundry done, the house cleaned top to bottom, the trash taken out, the dog got a bath, the litter box got changed, everything was put away in its place. All that was missing was Dave.
So of course, on Sunday, Dave’s original flight was cancelled and replaced by another. Eight. Hours. Later. We spent the afternoon with cousins to take our minds off the delay of Dave’s arrival, and that gave Addie some much needed rest:
Finally, it was almost time! Addie was excited to see him, all she could say was “da,da,da,da,da” every time I told her “dada’s coming home!
As I watch them curled up, still writing over an hour later, I am filled with peace and serenity once again.
My whole world
And, to be brief… my one random of the week.
I found out what I’m made of this week. I beg all you ladies out there who are at the end of their rope to climb one rung higher than they thought they could. Take one more step. Do it because I know you can. Thankfully, it was just a run-around week. Addie is OK. While Dave was away, there was terrible WiFi connection and so we spoke for less than 10 minutes total (in 5 days).
When we got Addie to bed, Dave showed me the video he tried to send me a bunch of times, but the file was too big for London’s bad connection and all I got were a handful of blank emails. This sums up my man. I love him and his quasi-romantic, goofy, nerd-boy self.
Thank you for joining me on another Marvelous Monday journey!
It’s another Marvelous Monday! Happy MLK Day. There are so many lessons I could touch upon on this important day, but what I hope to convey in every post in some way is equality. So, it’s Monday; let’s jump right in, shall we?!
What’s up with dwarfism this week in the Martinka house? Let me tell you! After family swim at the YMCA this week, a woman kept telling me how sweet Addie was and how small and tiny she is. She was a sweet, older woman, by no means old, but in her late 60′s. When she asked what size clothes Addie was wearing, I was so confused and sort-of annoyed I spouted, “Newborn pants, and 3 month onesies. She has achondroplasia, so she’ll always be small.” The woman looked confused. “Dwarfism,” I said. The woman smiled and grabbed Addie’s little fingers in her own. “With the right shots, she’ll be normal, right?” She asked.
For some reason, I remember learning about the pituitary gland in science class, and that height issues relating to it can be treated with growth hormone injections. “No,” I said calmly, “dwarfism cannot be treated, you’re thinking of injections for the pituitary glad. Addie will just be little.” Again, the woman smiled, seemingly surprised at my knowledge, continued talking about herself and how she doesn’t understand why her daughter-in-law expects her to care for her grandson… “Why did they have a child they had no daycare for?” she laughed. We briefly discussed how Story Time at the Warwick library is always too packed and I told her about the one on Fridays in Providence.
I put on my backpack (Dave makes me use the backpack to even the weight on my shoulders… it’s hideous) and picked Addie up in my arms. The woman, a solid 4 inches shorter than myself, patted my shoulder and said, “she is beautiful.” And that was it.
So this week I learned that when you explain things to some people, they don’t care. And that’s a good thing! This woman learned something new because deep inside the inner-workings of my brain, I’d remembered something I’d learned long ago. I wasn’t particularly pleased with the word normal, but to someone who doesn’t have a family member with dwarfism, that’s just what it is. People who are tall are normal, and people who are small are different. I am learning that people don’t think Addie is abnormal; there isn’t always a black to the white. Sometimes, words are just words and they’re not meant to hurt or offend. Just as the opposite of “love” is not “hate”, but “apathy”, the opposite of “normal” is not necessarily “abnormal”. Plus, Addie is normal… except she’s not. She sleeps through the night at 9 months old (the transition to her crib happened seamlessly), loves all food, hardly cries and she’s a little person. She’s not abnormal, just different. Heck… so am I!
9 months old!
This week I am thankful for Netflix. I know it sounds strange… who is actually going to say they’re thankful for that? ME!
I watch one episode of some health-conscious show, like Workout, or a documentary like America the Beautiful, and I’m on the floor doing pushups. I don’t need motivation to workout, but when I turn Netflix on, I get sucked in and veg out, except when I watch something like these shows, then I get moving! Since beginning to watch more shows like this (10 days), I’ve worked out 4 times a week, and gone from 147 to 144.5 pounds. I’m really proud of myself… and I love Netflix for the inspiration to watch and move at the same time! Next time you’re in a slump… turn on a show about people who let themselves go, and it will get you up off your rear-end, too!
Finally… my random things of the week:
One… if you didn’t know, it’s National HuggingDay, so get on it…
Also, my hubby is leaving for London on business Wednesday-Sunday. I am super nervous about it… but I plan on being productive. My list of things to do after Addie goes to bed at 9pm include:
Blogging!!!
Giving myself a pedicure
Putting on a face mask
READING
Taking at least one long, hot bath
Running on the treadmill
and… blogging!
I am so excited to have what little “free time” I do have all to myself. I love my hubs, but we don’t see each other enough to take time apart. In truth, an extra hour in the day would mean time for me and time together, but alas, this business trip will serve as enough time apart for a lifetime! I’m so proud of him for creating this opportunity for himself- a business trip to London with the bosses… WHAT?! And I [already] can’t wait for him to get home!
While home for Thanksgiving, we celebrated my nephew’s first birthday.
My car isn’t this awesome!
It was an amazing party, with the theme of ducks! I know my sister was stressed about it all, but she pulled the event off seamlessly. Going home to see family, as I’ve written, is hard because we don’t see each other often, but knowing the good stock I come from always makes the hard days a little easier.
I get the joy of staying home with Addie. Being a stay-at-home-mom is not something I thought I wanted in life, but the second I saw her, I knew that 8 weeks wouldn’t be enough time for me to part with her for hours at a time. My big sister is VP of a huge advertising firm, has the handsomest little boy, and the perfect (for her) hubby. Her life is full of elegant events, important meetings and weekends poolside. She dedicates herself to her family, and all the work she put into throwing a party in Pennsylvania, and one in Florida (where she lives)- all while traveling for work and maintaining her home- leaves me in total awe.
My favorite of the family pics
My days are spent like my nights- I’m usually hooked up to a pump, or a baby, or running a vacuum, or cleaning up dog puke, using dry shampoo to feel better, or sewing something together and writing about life. I am proud of all that I do. I am glad that I know how to use a sewing machine now (and I have the scars to prove it). I’m glad I stuck with pumping, when Addie decided that nursing was only for sleeping. I am proud of myself for having such a clean home, with a fridge laden with crafts my infant has produced (hand turkey, anyone?) and polished silver on the buffet. I get dinner on the table and most days I remember to eat lunch. I haven’t put on my running shoes in weeks, but I know I will again. When I’m ready. I’d love to have the glamor and the means with which to be a bit more fancy, but being so diverse makes us family.
Mark was so gentle with his little cousin
There are families who remain as such because they are all the same, and families who part ways because they are so different. We are family because we choose to be. We are all different- even the identical twins. I am proud of us, and I am [especially] proud of my three siblings for all they’ve accomplished in the past 6 years. From starting a new life and creating one, to getting good grades and falling in love, to finding a career and living on their on. We are family, and Addie is blessed to be a part of such a tribe as we.
A boy and his dad
HAPPY FIRST BIRTHDAY, MARK and Happy anniversary to my big sister. I am so proud of you- your strength, your beauty and your tenacity to keep hurdling over, and never cowering under, what life throws at you. Life doesn’t just happen… we make it so. Thank you for that lesson.
I think so.
It brought me to the research of if others thought so, too.
In August I posted on Carter’s wall on Facebook:
Dear Carter’s,
My name is Adelaide (A is for Adelaide). I am an achondroplastic dwarf. My mom has been struggling to find me clothes that fit and trying to sell the clothes that are too big for me so she can get me new Fall clothes. My dad works really hard, so mom spends sparingly, but says I can’t wear summer clothes in November!
This is my favorite outfit: from your store, INCLUDING my hair clip (except my shoes).
I am 4 1/2 months and I wear newborn clothes. I wasn’t diagnosed until I was 9 1/2 weeks and my mom and dad are average height adults, so my mom had taken all of the tags off my stuff and washed most of it: she never thought I would be a dwarf- but she and dad love me no matter what!
The employees (especially Deb) at your Cranston, RI store have been wonderful to me, and mom can’t wait to go back and buy me my Christmas dress! Thank you for offering newborn separates in the same styles that big kids can wear. I am growing smart and strong, but not so big, yet. It’s great that you have such awesome styles and great prices to help my mom outfit me (and save dad a few hours at the office).
Your biggest fan,
Adelaide (Chelley Martinka and David Martinka, too)
When it comes to being different, I know things aren’t easy, but I wanted to know if there was opportunity and I came across this wonderful article about people with Down Syndrome in the media. In it, Model Club Inc. is mentioned. I dug further into Model Club and came across an open call in our area. I brought Addie, explained that Addie is a little person, but no one cared. She’s really cute, said the woman checking us in.
And so, Addie is being represented. We have no jobs yet, but I know that Addie is beautiful, and I’m hoping that she can help promote awareness in the media about dwarfism. There are opportunities that have presented themselves to LPs in the past, and I hope that they do so for Addie, too (not just for her college fund); like this: Oz The Great and Powerful! In Trailer 2, we know Mikey… he is at 1:50, back left stack, in the middle in the blue vest! Addie gives a special shout out to him (and his lovely girlfriend, Jess)!
Onto her career? Maybe… maybe this will just be some fun she and I have taking silly pictures. Either way, she’s my top model. Her first Baby Book Card:
4 months means:
A baby girl that has filled me with a joy, love and passion I’d never known existed. Compassion and empathy. Strength and courage.
These past four months of my life have been an amazing roller coaster. Sometimes I throw my hands up at the highs and sometimes my stomach plummets into turmoil at the lows. I don’t know where the next 4 months will bring us, not to mention the next 4 days… what day of the week is it anyway?
Having a child who is different can leave a parent feeling isolated, sometimes because it is isolating, and other times because a parent makes themselves feel that way. I don’t expect many people to understand. I didn’t understand until I was there. Achondroplasia is so rare, that there are not a million other people out there who know what Addie is going through, or Dave and myself as parents. As a friend, teacher, or therapist of someone who has a child with a difference, you are not living with your flesh and blood and all the questions that make us unsure. I’m scared everyday- I want to know she’ll be OK, but there are tests to be done and results to be read. It can be an isolating world out there.
I hugged her last night and asked her to promise me she will wake up. Is that sick? Probably. I have a whole blog for you about that. I teared up and Dave promised me she would. Sometimes hearing what doctors test for make you more scared than not knowing at all. And in 4 months, this is a lesson I’ve learned.
I’ve also learned to love completely. Forgive wholly. It’s OK to let go sometimes. Other times, hold tight. I’ve learned that other people won’t get it, and what they say might hurt me. There will be days when what people say and do will hurt Addie. I’ve learned that when I’m upset, it’s because I’m upset, not because someone made me or someone meant to hurt me, and that’s OK. It’s OK to feel our own emotions, and express them how we need to. I’m not here to make you happy. I was put on this Earth for Addie and Dave. For my parents and family.
I look at Addie’s dimples, her infectious smile, a head full of unruly hair and I cannot help but be filled with joy. She coos and half laughs, conversing in her own way, making everyone who meets her melt with the love and happiness only she can bring.
As I celebrate my beautiful baby girl, I want to also celebrate all the parents out there who remember to cherish each day. It’s not easy to be a parent, especially when you feel alone. There are days ahead filled with sleep studies, x-rays, MRIs and miles of driving for doctors to poke and study our baby girl, but when I’m old and gray and Addie is there to take care of us, I know she will understand that’s just what we do for those we love.
Happy 4 months to Addie and to all the other April 17, 2012 babies! May your next 4 months be full of more wonder and awe. More community love and support and a little more understanding for the things that you may not ever be able to understand.
And so I present to you, Adelaide Eileen Martinka:
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!
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.
