Wednesday, May 17, 2017

He's Little Big

Hello and thank you for coming by my blog!
Please check out my most recent blog ...
"He's Little Big"
I hope you enjoy it as much as I do!

Wednesday, February 15, 2017

Growing Up & Looking Good

They say "time flies when you're having fun". It's also said that "the days are long, but the years are short". I relate to this sentiment. Yet instead of mourning my loss, I'm looking forward. Ryan is growing up! He's a big boy and new adventures await ... and Ryan is ready now that he's FIVE years old!

Now that he's five, Ryan is a little bit bigger - which is pretty exciting when you're a 5 year old with dwarfism! We have had to update the wardrobe quite a bit this Winter! Good thing that I've been practicing with my sewing machine! I'm getting pretty good at hemming and have visions of attempting a pattern soon! I'm starting to really enjoy the craft!

Here is JuJu helping me hem some pajama pants.

And at 5 years old, Ryan is stronger and more coordinated. After the hot Summer and Fall, we finally dusted off the kids bikes and Ryan jumped on and is pedaling so fast that I have to jog to keep up. His bike is the smallest available and we put two pedal blocks on each pedal to make the pedals accessible. Last year riding his bike was quite a stressful experience, so it's fantastic to see his ear-to-ear smile this time around.

 Here are Ryan and Eleanor cruising the neighborhood.

Ryan has also acquired a large amount of confidence in his "old age". We couldn't be prouder watching him try new things with a brave face. When I signed Ryan up for baseball, he was nervous trying the new sport after having such a hard time with soccer. But he put on the uniform and gave it a shot. And though he admits he likes watching sports best, he has come to love playing baseball! 
I often forget how small Ryan is in our day-to-day lives. But when he's out on the field with his teammates and is just half their size, my heart swells with pride and a touch of sadness. I sit on the sideline and watch him as he tries to keep up with his friends' speed and agility. But his enthusiasm and determination not only get the job done, but he does it with the most contagious smile ever. He instantly became his team and coaches' inspiration. And I couldn't be happier how frequently he reminds me that being small doesn't have to slow him down. 

All ready for our first day on the field!

On the first day, Ryan won the Value Medal for listening!

Ryan's confidence doesn't stay on the baseball field! For Christmas his Auntie and Uncle gave him and his sister a super fun gift! Though he's cautious by nature, Ryan didn't take more than a fraction of a second to get behind the wheel of his new car! Uncle Sean did a lot of research and was sure to find a car that had a "slow" and "fast" speed. After just one day driving slow, Ryan asked to go fast. And he hasn't slowed down since!

Uncle Sean taught Ryan some driving skills too. He's learned to pass safely, back-up, drift, and to drive through a course with technical turns. Looks like this is just the beginning of a race car driving career. And if you ask Ryan, it's exactly the right path for him. When he grows up he wants to be a NASCAR driver. Racing is in his genes ... just like his Grandpa, Uncle and mommy. We hope that one day soon he can meet one of his favorite drivers - Rico Abreu. Rico is a little person just like Ryan. 

All 5 year olds need to know how to swim! And with Ryan's newfound confidence and strength, he had a great swim lesson with Teacher Mommy! The water is a scary place for kids that are cautious and nervous natured like Ryan. It's even more challenging for Ryan since he will not be able to stand in the standard shallow water depth like most of his peers already can. Ryan will have to work extra hard to keep up - and stay safe - in the pool with his friends. 

It's been a great start to being five years old! And though I look back fondly and with some heartache, I can't help but to enjoy what this new stage of life brings. And to think that I dreaded this age! Not only due to the fact that he's growing up, but also since he's gaining full understanding of having dwarfism. And despite some trepidation with being "little big" forever, he's not only accepting it, but he's LOVING it. And he's growing up in these countless ways that stack up to something pretty amazing. ... this is just the beginning, I can only imagine what else is in store. 

... on to the next adventure!

Thursday, September 22, 2016

The Big Little Moment

We are just one week away from Ryan's 5th birthday. How can this be? Turning 5 is a big deal. He's officially a "kid". He's not a baby. He's not a toddler. And he's really out of range to be described as a preschooler. (Although thanks to the district calendar we have the luxury of the "preschooler" label for the rest of the school year).

Turning 5 brings on a world of new experiences, accomplishments and challenges. The expectations climb higher as does the ability to handle them. Chores. Rules. Self care. School work. And so it begins. We've entered the new stage of childhood.

Ryan sent off his final few months of his 4th year with a fun filled Summer. Here are a few things he enjoyed:

4th of July Block Party!
Mid-party FUN!

Who's more excited?
First Day of Pre-K for Ryan!
And Ellie's first day of Preschool!

Ryan's AMAZING teacher made him a stool so that he could reach the sink ALL by himself!
He LOVES it!

Ryan's "Captain A-Bearica"

Road Trip!
Heading to our LPA buddy's cabin!
 Smiles and trees!

 First trip to Costco!
(Yes, they are excited!)

He's ready to turn 5 and for the new way of life it brings. But is he ready for the "Big Little Moment"? I think so. In fact, I'm proud to say that he's had pieces of this moment from infancy to today. What is this "Big Little Moment"? It's the moment every parent of a child with dwarfism both dreads and wishes to come - and go quickly. It's when the child realizes that they are different. And that their difference is for life. It's forever.

Ever since Ryan was diagnosed I dreaded this moment. I feared it. Will he cry? Will he hate himself? Will he be angry? Will he have confidence? Will he still want friends? Will they want him? But the questions and worry faded as we gained understanding of Ryan's condition and as we got to know our sweet adorable son. We lived one day at a time and enjoyed every second. But the "Big Little Moment" lurked. And it has done so for five years. For Ryan, turning five isn't just about getting older. It's not even about growing up. Or starting Kindergarten. It's about self acceptance. At five, he is old enough to understand that he has dwarfism. That he will be little for his entire life. He's tasked to grasp his difference AND stand proud. This is a huge task for a five year old.

The "Big Little Moment" can be a punch in the gut. It can knock the wind out of a kid. Shocking them senseless and ending the world as they know it. I've feared this effect more than anything. Sure, the thought of bullies makes my blood boil. And I'm saddened knowing that he has to endure countless physical, social and emotional challenges. But none of that has to matter. What matters is Ryan. Because as long as he loves himself and has confidence, the bullies and hurdles in life are meaningless.

Before Ryan could even hold his head up, I spoke to him about his size. And I haven't stopped talking since. Just ask Ryan. I'm guilty of talking so much that he's constantly asking me if I'm done so that he can go back to playing. I point out other people's differences and we talk about how that makes them great. I'm discussing the fact that he has a lot in common with his classmates and that being smaller doesn't change that fact. We watch little people tv shows and applaud their achievements. As soon as he was able to grasp a simple concept, Ryan was introduced to our family phrase "Little Big". It's a simple way to remind Ryan that little people can do big things. It's also how he shares his difference with new friends.

Over the years Ryan has gradually gained an understanding and awareness about his dwarfism. Ask him why he's small. Go ahead! He'll tell you that he's four (or soon he'll say five!) and that he's "Little Big". Ryan knows he is little, but he also knows that little people still grow-up and do big things. And I'm proud to say that for the most part, he's content with this. He's happy.

Of course he has moments. And they break my heart. This is a gradual process after all. What a huge concept for a kid to have to learn and grasp. He's not even 5 years old and he's been given the task of understanding a life-long diagnosis! And on top of that, he's given the challenge to like himself with his difference. How many people without a difference can say this? Don't we all struggle at that? And yet, it's what we tell him to do. It's what he needs to do. I can't imagine. But I also couldn't be prouder. Ryan stands tall in every way possible. Well, every way outside of the literal definition. And you know what? He stands taller than most.

Thursday, June 23, 2016

Knowing Is Half The Battle

In a blur of just two weeks Ryan's MRI and follow-up appointment came and went.

It was a long day, but our little boy showed his strength despite the morning of fasting, the sterile hospital room and the fear of what was to come. He asked us if he had to have "pokey medicine" and if we had to stay for a long time. We knew the answer was yes to both. And that he knew it too. When the doctor came to meet him he was shy but so cooperative. I wished to pick him up and run. But he remained calm. And so brave. The nurses and doctors are amazing. We knew Ryan was in good hands. The trust I have for them keeps me (mostly) together. When it was time for him to have the anesthesia, the doctor invited me to stay by Ryan's side until he fell asleep. Somehow I managed to sing him the ABCs despite his pleas to "be done". Despite his big blue eyes looking at me and slowly slipping into a drugged sleep. It's the hardest part of the process and he was so brave. He didn't fight. He held on. And so did I.

Thankfully there is the silver lining. It's done. The anesthesia went well and the scan was completed. The nurses and doctor proved deserving our trust again and again. And again. We stayed longer to get Ryan's blood sugar up. He got an endless supply of popsicles and high-fives. He made the best of it all. And we couldn't be more proud.

... and the results! They're good! All of my fears diminished in seconds when the doctor told us that Ryan's scan showed a healthy brain and spine. Even some typical abnormalities for someone with achondroplasia were not showing. I felt like I exhaled for the first time in months.

The weight of the unknown has lifted and we are grateful that we've checked this hospital visit off of the list. Yet, this new information - though helpful - is also only part of a whole. We don't know why Ryan has headaches at only four years old. We don't fully understand his blood sugar challenges. The questions we have linger and cause confusion and new stress.

For now we "watch and wait". Perhaps as Ryan grows older, the headaches will lessen. Or maybe with our biggest fears put aside, we will catch what triggers his challenges and ultimately a cause.

But knowing what we do know is a start. And we're so grateful. It's been said that it's not happy people who are thankful. But instead that thankful people are happy. This couldn't be more true for us. We're thankful for where we are and what we know. Ryan is okay! The scan eliminated countless of serious complications common with achondroplasia and with headaches. Maybe we have more challenges ahead, but for now we are going to love the present and what it offers. Because it's awesome.

Wednesday, June 1, 2016

Finding The Silver Lining

We are just days away from Ryan's MRI test. I'm dreading it. And at the same time, I'm eager to get it over with. It may sound dramatic to worry over such a non-invasive test. But when a child has the scan, they have to go under general anesthesia. This isn't new territory for us, and the staff at the Children's hospitals are fantastic. I know Ryan is in good hands. But he's only four years old and this is the 4th time he's had to do general anesthesia. And it doesn't get easier.

The fear lurks behind my smiles and consoling words to my nervous son. It threatens to take away sleep, my appetite (and that is a feat!) and to raise my blood pressure. But why let it? I can't control this. I just have to find the silver lining.

It feels a little crazy looking for the good stuff when my little boy has undergone far too many procedures, tests and appointments. But it's there. We are lucky. We are lucky to have a son with dwarfism. And we're even luckier that he is maintaining fantastic health. Some people with achondroplasia have much more severe and stressful complications. Ryan's endured a lot of tests and procedures: MRI's, sleep studies, ear tubes, tonsil/adenoid surgery, hearing tests, scopes, and on and on. It's never easy. And I don't think it ever will be. But he's done it all with a smile.

The silver lining for us is seen in the amazing community we have in the form of family, friends and the LPA community. Because of this, we have a wonderful anesthesiologist lined up. We have a Genetic Doctor and an awesome team of specialists who are only a phone call away. We have friends who watch Ellie while Scott and I stay with Ryan during hospital stays. We have an army of people giving us support and love.

Ryan won't love the day. Oh boy is that an understatement. He'll surely start crying when we enter the hospital. And the cries will escalate to pleads when he sees the hospital gown, the bed and the needles. My heart is already breaking thinking about this. He's too young for this. He's hurting and afraid. And I can't do anything. The fear is rising up. How can I find a silver lining when this moment comes? When the doctors attempt to insert his IV? When it takes more than half a dozen times to get it to work? I have to look beyond this moment. Ryan won't be able to look at the big picture at his age, but I can. I can tell him that he's in good hands. And that having a rough day is how we ensure that he has many many more good days than bad. We're being proactive for his health. And even though it hurts on so many levels this is the silver lining. It's for a good reason.

For Ryan the silver lining is waiting. It's in the form of a new Lightening McQueen car. It's a new "magic pen" coloring book and a new movie. And when he gets home, it's the special treats to eat and juice boxes chilling in the fridge. It's the hugs and cheers he gets for being such a brave boy. The brightest silver lining is definitely Ryan's. It's full of smiles and laughter. And it's when we're done with the MRI. We're home.

But we aren't out of the woods - and like a wise man on my favorite reality show ("Terra's Little Family") said, "we won't ever be out of the woods ... dwarfism is for a lifetime". We have to wait two weeks for the MRI results. Fear lurks yet again. The worst case scenario keeps trying to nest in my head. But I can't let it. I have to take this one day at a time. And handle things as they come. There will always be something to deal with. As Ryan gets older it'll be leg bowing, social drama, hydrocephalus, spinal compression, etc. But since I can't control this, I'm choosing to look for the silver lining. Since there's always good with the bad. Sometimes you just have to look harder for it.

... Or in Ryan's case, you just use your Superpowers to fight off negativity.

Monday, April 18, 2016

Ignorance And Anticipation

It's said that time flies when you're having fun. Life has been a blur - yet at the same time I couldn't explain exactly what has been keeping us so busy. It's that strange phenomenon where you're exhausted yet you have nothing to show for why. Maybe we're just having too much fun. Time sure has flown by ...

I've done a lot of "mommy blogging" with some articles appearing on Scary Mommy. I'm excited to share some of my real-life adventures and humor. And am thrilled to share my story about Ryan. Sharing our positive outlook and adventure is a great way to educate some and also to bring positive attention to little people. I'm tired of dwarfism being the butt of endless jokes. Despite the fact that society has deemed it wrong to poke fun of people with disabilities, little people aren't part of the excused categories and are therefore often ridiculed in countless ways - pointing, pictures, jokes, name-calling, etc. 

For the past four years I've been happily living in my blissful ignorance. Perhaps I'm clueless. Or perhaps I'm successfully not noticing people and behavior that I have zero interest in. Unfortunately the reality still exists. And I'm reminded of this more and more. I'd like to say that my mindset is what keeps me on keel. But regardless of 'the how', I'm content and so is Ryan. We're not letting others affect our outlook on HIS life. Well, we're doing our best. It's a struggle sometimes. There's always the unknown. The anticipation of the future. What and who will it hold? It's there that the fear can creep into our lives. 

Life is what you make it right? And we've made it a great Winter and Spring. It's heating up in AZ so I'm already planning our Summer and bracing for the unrelenting heat. Keeping two kids under the age of five indoors for the majority of the day is incredibly difficult. I'm planning on utilizing friendships, crayons, stickers, books, splash pads, cookies, summer movies and wine to get us through. Not in that order and not all at the same time. :) 

Meanwhile, here's a taste of what we have been up to. 

NASCAR came to visit our local grocery store! Ryan has a new favorite driver ... although he's still a big fan of Rico Abreu and "the m&m car" (of course!)

A little football fun at the NASCAR event ... 

A very cute swim lesson duo!

Happy St. Patrick's Day!

Pizza making party with friends ... 
Ryan had a great time despite the fact that he doesn't care for pizza ... 

All smiles for a special lunch out with daddy!

Easter eggs!

Easter egg hunt and family fun ...

Along with all of this fun, I've also had the task of scheduling Ryan's next follow-up with his Genetic Doctor. In addition to seeing him, we have an MRI scheduled. Achondroplasia requires constant monitoring for various conditions including hydrocephalus and spinal compression. The last MRI Ryan had was when he was 4 months old. And here we go again. At four months old he looked fantastic and that's likely the case again this time. But it's still an unknown with possible complications to be found. In addition to the fears that lurk, an MRI on a child is not trivial. Ryan will have to go under general anesthesia. For anyone there is risk involved and for a little person it's even more so. His appointment is in the Summer. So in the meantime we will aim for ignorance and enjoy what we know today. 

And clearly today Ryan is a happy guy ...

... on to the next adventure.


Wednesday, April 13, 2016

Little Big

© (2015 on Scary Mommy) (Erin Parsons)
Scary Mommy
Four years ago, my unexpectedly awesome adventure began. Our son was only a few days old, and it was our first night home after his birth. It was the longest night of my life. Our precious little bundle of joy screamed for the entire night. Is this normal?! I worried.What had we gotten into? Maybe I didn’t want kids after all!
It turned out that he had double ear infections. My husband and I were shocked and relieved at the same time. There was a reason he screamed for hours on end. But how could our newborn have ear infections so young? Why was he swimming in newborn-sized clothes at 5 weeks old? The ear infections continued. Colic was diagnosed. We were getting concerned, and life is not easy on two hours of broken-up sleep a night. At that point, I was certain that I’d never sleep an entire night again. It was time to talk to the doctor.
Our son was off-the-charts small, but his head was large. He had the biggest brightest blue eyes you’ve ever seen, and a smile that kept me going every day. He was also a little person. Specialists diagnosed him with achondroplasia. It’s a long word that refers to the most common form of dwarfism. With this diagnosis, fears of medical complications and social issues replaced all those beautiful visions that had flooded our minds over the previous 9 months. My ears rang with all the “midget” jokes I had heard over the years. My baby was not a joke. He was a sweet baby boy. My husband and I went through every feeling possible—sadness, anger, self-pity, denial, frustration and loneliness.
We didn’t know anything about dwarfism. It’s not in our family, and I’d never met a little person in my life. But, more than 80 percent of little people are born to average height parents. Achondroplasia only occurs in 1 in 40,000 births. That’s a 0.000025 percent chance. We wondered if we had won the genetic lottery, and it really didn’t take long to realize that was quite true.
The day one of our doctors mentioned that a cure could be in the works was the day I realized that I was not only OK with my son’s condition, but that he is perfect and I wouldn’t change him one bit. The thought of a cure is actually upsetting. Imagine if a doctor told you that you could have your baby’s eye color changed—it’s like that. Our little boy is amazing just the way he is: 6-feet tall or 4-feet tall. What does it matter? As we learn more about achondroplasia, our dreams for him of friends, love, marriage and a career return. He will always be small, but that’s all.

However, as is the case with a lot of conditions, this diagnosis comes with a number of possible complications. Before he was 3 years old, our baby had numerous sleep studies, MRIs, ear-tube surgery, tonsil and adenoid surgery and countless specialist visits (and I thought I would have trouble with the vaccines!). He’s a champ. Take that wellness visit and multiply the stress and fear by 100. I had to toughen up, trust the doctors and ask an insane amount of questions.

Today he’s 4 years old. He doesn’t quite know that he’s different. We talk about it a lot. I tell him that he was born to be little just like some people are born with blond hair. We talk about how people with blond hair can do the same things as people with brown hair. The world would be really boring if we were all the same. He likes to watch the little people shows on television. We talk about how he is “little big”—he’s growing up! He can do big boy things even though he is small in size. And trust me, his size is the only thing that is small about him!
He started preschool when he turned 3. We thought it would be a great opportunity for him to gain confidence. He proved us right! He has so many friends. Some asked about his size. Some don’t even notice. They see him as their classmate and friend. We love how our friends ask questions about his condition and lend us a sympathetic ear during tough times. We also love how they don’t make his size a concern. It’s as if, like me, they forget he is little.
October is Dwarfism Awareness Month. I’m always looking for ways to share information about my son and achondroplasia; there are still so many people who don’t understand this condition. Both kids and adults are guilty of using derogatory terms (“midget” ranks number-one), taking pictures, teasing outwardly in public and even posting things on the Internet. Little people are still the butt of a lot of cruel jokes. It’s often due to the fact that people don’t know anything about the condition, and the unknown is easy to laugh about. It saddens and frustrates me to think how this can go on. My heart breaks at the thought of someone taking my son’s picture just because he is small. Luckily, these people are the minority—perhaps the only way they can feel good about themselves is to make fun of others. But no matter the reason, my son isn’t the issue. He’s not a victim.
I know I can’t expect people to treat my son just like everyone else. The reality is what it is—he’s different. But that’s it. He’s just small. He likes the same things his preschool friends do, and when he grows up he will have hopes and dreams for his future just like his peers.
When I talk to my son about his stature, he simply states that he is “little big.” He’s starting to understand that he is little, but that he can do big boy things. And he’s proud of it. And I am too.