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.

  

Little Big

© (2015 on Scary Mommy) (Erin Parsons)

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.