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.

Winter Magic

Christmas came and went too fast! We had such a great time! The holidays are even more magical with kids. Instead of just stressing on schedules, gifts, obligations and money, I’m able to enjoy the real magic of Christmas again. The lights. The baking. The tree. The books. It’s so much fun to count the days with the kids. Since the kids are getting older, this year I was even more determined to make Christmas about more than presents. I think it went pretty well! 

Here are some of the fun ways we enjoyed the magic of Christmas ... 

Decorations! Here we are decorating our odd-yet-perfect shaped tree! 

Baking is my favorite part of the season. The kids loved cookie decorating ... and tasting ...

Mail is another favorite of mine. The kids enjoyed making Christmas cards for their special friends.

We've heard that making snowmen is another part of the season ... We had to improvise since it doesn't snow in AZ!

 Christmas lights are magical and such a beautiful site ... especially by boat!

A first for me ... Gingerbread house decorating! ... and tasting ...

 Special outings are a must over Winter Break! We had a great time at the zoo!

Another "holiday must" that is tricky in AZ ... But we made do! Snow angels in  the desert ...

And of course the most exciting tradition of them all ... Cookies for Santa and reindeer food!

... and Santa likes beer here. :)

And before we knew it, the BIG day came! What a special day we had. Santa treated the kids to some big surprises! And he even took notice that they needed some new socks and undies too! What a smart guy.

We are a lucky bunch. The holidays were a blur of fun and special time with family and friends. We even got visits from the grandparents! The kids were thrilled to spend time with them and to share in their emerging holiday traditions.

And before we knew it, 2016 had arrived! We started the New Year getting Ryan set up at our local Children’s Hospital. We love our doctors in CA but we have decided that we need to have our team near by. Before we were a week into 2016 we met Ryan’s new Genetic Team. And what a great team they are! The doctor spent over an hour with us and he’s eager to assist us with achondroplasia issues and also his hypoglycemia. He assisted in getting us lined up with the other specialists Ryan needs to see: ENT, Pulmonary, Audiology and Orthopedics.

This is going to be a busy year. But for us, it works best to be proactive and to manage the complications that Ryan currently has and also to be in touch for those that may surface. It's a lot for us - and especially hard on Ryan at times. Our little man sure is tough. As usual we couldn't be more proud. 

On to the next adventure … 

Look How Far He's Come

As usual the summer was a blur of heat, swimming and as many indoor activities I could think of. The kids had a great time getting settled in our new home and I was glad that we had more space to play and have friends over too.

Summer is busy with mommy teaching swim lessons and the kids’ activities. We are lucky to have friends helping us think of creative – and cool – play date ideas!

Here we are making the best of what Arizona has to offer us in the summer!

Pool day at our community pool! 

Ice cream treats!
... Ryan wasn't so sure about the cone and he didn't like the nuts ..

Ellie enjoyed the entire thing ...

 Ellie loves messy fun!

 When it's 115 degrees outside ... mommy gets creative with the games ... Here's the first round of "Foil Ball" ...

Ryan started swim lessons!

We practiced at home in our "pool" ...

Baking day!

School starts at the end of July on our year round schedule. Ryan was ready and excited to start his second year of preschool. He loves to learn and play with his friends. This year has been a better year for Ryan. He’s more confident and most of the kids know that he’s a little person so there aren’t as many questions and/or social challenges as last year. His teachers tell me that there are still some incidents where kids aren’t nice. I’m working on letting it go (angry mama bear instinct!) and he’s working on communicating in these situations. The confidence gets better daily. I’m really glad that he’s in school at a young age so that he can have practice in these situations. It’s also good for me … since I also need practice … I know that if I can get over it, Ryan can too.

Here’s Ryan on his first day of school!

The end of September is a very special day for our little man! Ryan turned FOUR years old! Time goes too fast, I can’t believe that he’s already four years old. Ryan celebrated his birthday with some very special fun. We had lunch with daddy at Ryan’s favorite restaurant – Red Robin of course. And a few days later we celebrated with a Disney Planes party with some special friends!

Special lunch ... 

Birthday Boy

Special birthday gifts!

Yummy!

Ellie likes cake too ...

Party time!

At the end of October we made a trip to CA for Ryan’s annual doctor appointments. We have kept him with the same specialists he has had since birth. ALL of his doctors said that he’s doing really well! We’ve been lucky to avoid a lot of complications that achondroplasia can have. We are still watching his ears since the ear tube holes never closed. For now, it’s nice since it’s like “built in” ear tubes. But in a few years we will have to have them closed. As of now they aren’t affecting his hearing – so Ryan’s caught in a lie … he CAN hear me when I tell him to clean up his toys. Nice try Ryan! Ha ha. Ryan’s Genetic doctor doesn’t require an annual visit but I like to check in with her since she oversees new needs and ongoing things. She and I decided that he has slight bowing in one leg that should be looked at by an orthopedic doctor just in case we can manage it. I am proactive when it comes to Ryan’s medical care and I don’t want to miss anything!

The trip was fun for the kids – we had a nice visit with family and friends over the weekend. And then Ryan – a trooper as usual – had doctor appointments Monday, Tuesday and Wednesday. These aren’t all easy and they are time consuming. He is a champion. We are glad to have good news overall. He’s come so far, I am stronger and so is Ryan.

Here are the kids enjoying their visit in CA.

Only a few weeks after getting back home and it’s the holidays! What a blur this year has been. We kicked off the holidays with a fantastic Halloween! It was the first time we got to know a lot of our neighbors. What a great bunch we have! 

Our "My Little Pony Ballerina Princess"! 

(she made that up all by herself)

And our Garbage Man!

 "Trick or Treat!"

After a fun Halloween we ended November with a wonderful Thanksgiving weekend! Being out of state from our family is a bummer on some accounts but we also love being able to spend time with our new friends and each other. The kids had a whirlwind of a weekend with daddy home from work and their new friends.

Already we are getting ready for Christmas! Ryan's counting down until the day Santa comes ... and in the meantime I'm looking forward to getting the kids involved in as many holiday activities that we can. There's so much more to Christmas than Santa!

Already the end of 2015. It’s been a great year for our family and for our adventures with Ryan. We look forward to continuing our success from 2015 and finding new adventures in the new year too.

… on to the next adventure!