As Unique as Her Name: Alsae's Story

One thing that is so important to me as a member of the special needs community, is to use my voice to not only educate others but to bring them together as well. I know how comforting it was for me to meet families who's children also have limb differences, feeling the love and acceptance from complete strangers who in that moment became friends for a life time. One of those people, Mallory, has a very special daughter who is as unique and beautiful as her name. I'm hoping that by sharing their story, and with your help, we might be able to bring them together with other families who share in their journey, and know the road they are traveling. This is Alsae's story.

Always happy, all the time!

Mallory and I met through the Lucky Fin Project. I was desperate to meet families, and wanted to organize a get together for soon after my husband's return home from Afghanistan. Mallory instantly volunteered to help plan the get together. We exchanged phone numbers, the texts started flying back and forth, and the rest as they say is history. We declared our daughters to be best friends, imagining them growing up and staying in contact just as Mallory and I do; always there to rejoice in their accomplishments, and pick each other up when things get tough. At the get together, we sat and compared stories, marveling at the thought of our special girls bringing us together. Our girls are only 38 days apart in age, and both have limb differences, but Alsae has had a much harder road, one that her and her family have handled with such grace and optimistic outlooks.

The list of Alsae's different diagnoses is long, and the list of surgeries and future surgeries is even longer. The point of me discussing all of her diagnoses is not to elicit pity, or feelings of sadness. Alsae is a happy toddler, she always has a smile on her face, a twinkle in her eyes, and the videos of her shaking her booty to "All About The Bass" would bring you to your knees in fits of laughter. Mallory has fought tooth and nail for every inch of progress they have made. After being accused of having postpartum by one doctor who didn't take her concerns seriously, assuring her that Alsae's neck was fine and that her refusal to eat was most likely reflux...advising her to add cereal to Alsae's feedings, Mallory knew in her heart there was something else going on and continued to fight to find the answers. Even after three months of fighting with that doctor over the list of growing concerns, Mallory was still being viewed as the overly paranoid mom, and was turned away from bringing Alsae into the office, something I cannot even fathom as a mother. Seeking help elsewhere, she found a new doctor that listened to her concerns and took them to heart. Finally after months of living in the dark, a geneticist finally gave Mally and her husband the answers they had been fighting for: limb reduction, and the rare diagnosis of Microgastria, a condition so rare that there are only 60 reported cases in the United States. In Alsae's case, her stomach is shaped like a tube instead of a pouch, making it hard for her to handle much more than an ounce or two of food during a feeding. Mallory would check in with me to find out how many ounces Addy was handling during feedings, and how much weight she was gaining, always concerned that Alsae was underweight and miserable during feedings. A g-tube has helped Alsae gain weight and made it possible for her to handle small feedings all night long.

Alsae's kidneys are smaller, and she has a splenic anomaly, both attributed to her Microgastria diagnosis. Her kidney's function normally, but extra precautions are taken because of her spleen abnormality. She has a small hole in her heart, one that they are watching carefully to ensure it does not become any larger, and hopefully fixes itself.

Right now, Alsae is currently at Helen Devos Children's Hospital in Grand Rapids, Michigan rocking a very bedazzled halo traction device in hopes of helping straighten a fixed rotary subluxation of the neck. Her C1 and C2 vertebrae don't line up properly, something that usually happens with serious infection or trauma, but Alsae's is congenital. This is thought to be the cause of her scoliosis, but that could possibly be attributed to the Microgastria and limb reduction. The fixed rotary subluxation has caused a 50 percent narrowing of her spinal chord, something that needs corrected. I'm happy to report that Miss Alsae has been doing amazing in the halo device, and that hopefully in two weeks time, they will have a set plan of action including a surgery to fuse her neck! This is a huge accomplishment for both Alsae and the medical team, as this line of treatment has never been used to help fix a subluxation! This will hopefully eliminate the need for Alsae to be in a vested halo apparatus for another several months! I couldn't be happier about her progress, it's been truly amazing seeing her take all of the therapy with a smile on her face!

Alsae's limb difference, an ulnar deficiency (an efficiency according to her rock star mama!), means that her ulna and radius are shorter than average. Just like her best friend Addy, Alsae figures out how to do just about everything! It's so fun to watch our girls figure out the world around them, and learn to do things in their own special ways. Mallory has been a pillar of strength through it all, she was the first person that really put Addy's limb difference into perspective for me. Even with so much going on in her life, she always checks in to see how the kiddos are doing, and to update us on Alsae's progress and the happenings in their lives.

Alsae is an amazing little girl, she continues to prove to all of us that she is truly something special. Her amazing smile and sweet personality are infectious, you can't help but smile when she's around! I know that Alsae is the product of her environment, an amazing set of parents that are her number one fans. "I always go with one of my favorite bible quotes and tell her that she is fearfully and wonderfully made, just as God intended!" She's a blessing to everyone in her life, and hopefully sharing her story will bring her together with other families traveling similar journeys! And yes, I will post updates about Alsae as I get them from her mama, any reason to put up more cute pictures, right?

Alsae being admitted for her halo device, look at that smile!

Meeting the cast of "Pirates Code" at Helen Devos Children's Hospital!

The little artist is ready to do some painting! Check out her bedazzled halo...so cute!

Limb Differences Are Not Scary!

My soon to be brother in law did an amazing thing for me the day Addy was born. While I was in the midst of an emotional hurricane, trying to see the sunshine through the dark clouds and torrential downpours, he was scouring the internet for information, support groups, blogs, anything that would help us learn more about our beautifully different baby girl (thanks again Dan!). He sent a lengthy email to my mom, telling her to share the info with me when the time was right. I'm sure he didn't realize it at the time, but what he did for me that day was life changing. It wasn't just information he was giving me, he was introducing me to people that would help me, change me, and become life long friends of our family.

One of the pioneers of the online limb different community is Jen Lee Reeves of Born Just Right. Her  daughter, Jordan, is a celebrity to families around the world, and recognized by the thousands of followers of the BJR blog. I got the opportunity to meet Jen in person, and we are still looking forward to meeting Miss Jordan. Every year, Jen and Jordan raise funds to give people a chance to attend Camp No Limits, a limb difference camp that allows kids of all ages and their families to attend a four day camp. Campers are given a chance to try activities out of their comfort zone, learn life skills, and exercises to keep them strong. They work together with mentors and counselors, and are given a safe environment to explore and discuss what having a limb difference means to them and how it affects their lives. It's an amazing camp, one that I cannot wait to attend with Addy as soon as she is old enough!

With Halloween around the corner, this month is an awesome opportunity to prove how limb differences aren't scary. A limb difference does not make anyone a monster. (Unless they choose to be one!) There's a special lesson kids learn in the limb difference world when they spend time together at Camp No Limits. Campers learn that being different teaches you how everyone is different, that we all have our own challenges and that there are many ways to overcome those challenges. 

Born Just Right has raised more than $10,000 over the years to send kids and family members to Camp No Limits, and I am asking you to help us continue to raise money! It takes $500 for each person to attend camp, so every little bit helps! Jen has put together an amazing collection of raffle items, all it takes is donating $5 to the Camp No Limits Fundraising site which gets you one raffle entry! If you donate more than $25, just add it up and enter the raffle again at another pay level. (For example, if a donor gives $50, they can put their name in under the $25 level twice.) You can view the raffle items here: http://www.bornjustright.com/2014/10/limb-differences-arent-scary-campaign

Thank you so much for helping raise funds for a cause that is near and dear to our hearts. I can't wait to help send some kids to camp, and I can't wait for Addy and I to one day be campers! 

It Was a Ruff Weekend...Goodbye Old Friend

The house has been too quiet since Saturday morning, and my eyes and tear ducts are still recovering. We haven't heard the snorts or coughs, there have been no races from one room to the next, and no one has squeaked when their ear got bit just a little too hard. We lost our Elvis this weekend, and we are all devastated.

Elvis came into my life a few days after a non eventful Spring Break during my freshman year of college. Most of the students were off on cruises in Mexico, or visiting friends at colleges who were on semesters, so the hallways in the dorm were peaceful and quiet. Those of us that were on campus enjoyed the calm before the storm, knowing that with Spring quarter came the festivals and street parties that made our livers quiver with fear and our parents fear for our sobriety. We made plans to grab a bite to eat at our favorite Mexican restaurant, which always led to a quick stop at the pet store to snuggle puppies...a cheap form of therapy. 

After stuffing ourselves with tacos, we made our way to the pet store ready for puppy breath and the inevitable scratches from tiny puppy paws and claws. I walked along the wall of cages, making obnoxious noises and faces at every slobbery, wet nosed, four legged ball of cuteness. And then, there he was. A tiny, and I mean fit in your hands tiny, black and white chihuahua. He had black tiny triangles for ears that folded over, just too cute to stand straight up. His tail was black with a white tip, and both of his cheeks and eyebrows were tan. His little black nose was smaller than a dime, and his brown eyes melted my heart. I flagged down the nearest store employee, asking to hold him immediately, feeling as if my heart might explode if he wasn't in my hands soon. 

My friend and I sanitized our hands and stepped into the little square box, anxiously waiting for the cuteness to arrive. Cupping him to her chest, the employee walked over to us, explaining that the puppy hadn't even been in the store a full day, and that we were the first ones to hold him. She passed him to me, I held him up to me at eye level, and he reached out with his nose and touched mine. I was done. He was mine. 

We would walk all over campus, stopping to make friends with anyone who wanted to pet Elvis, he was practically a celebrity in his own right. Some of the friends I still have today, I met because of Elvis. He became somewhat of a mascot, since he was being housed illegally in campus housing. We even managed to pass an inspection, putting elvis in a tote bag while two people poked around my dorm room, asking if I had any pets other than the beta fish on my desk. Elvis and Tiffany: bucking the system since 2006.

Elvis was there with me through college, also spending a significant amount of time at my parent's house. He was the man in my life until Nolan came along, and I knew that unless Elvis approved of him, Nolan and I wouldn't last long. The two were fast friends, truthfully, I think he liked Nolan more than me from that point on. Together, Nolan and I brought another four legged friend into our family, Bella, who would eventually give us a puppy, Woobie, who we still have today. 

Elvis was with me through Nolan's first deployment, curling up at the foot of the bed until he thought I was asleep, and then standing guard from his bed only a few feet away. He was waiting for us when we brought Keegan home from the hospital, curious about the crying baby taking up all of our time. He laid with me on the couch as I cried, worrying about Addy and her future, somehow knowing that I needed comforting. He grew grumpy in his old age, hiding for most of the day. He put up with the kids chasing him with toys, being stepped on by wobbly toddlers, and even let Addy crawl into the crate with him for a quick snuggle before he would high tail it out of there. 

We are all struggling without him. His absence has left a hole in all of our hearts, Woobie's too. After he passed, we let her in to see him one last time, allowing her the chance to say a goodbye. She went in and laid with him, whining and licking his nose. It was heart wrenching. She avoided their crate, and their bed, even waiting until today to eat again. I know that she probably didn't understand that Elvis was her father, but she was mourning the loss of her friend right along with us. Explaining Elvis' passing to Keegan has been a challenge in and of itself. Lots of questions, and lots of tears. 

It's been a rough weekend. We miss our friend. We miss our Elvis.

Wherever you are, I hope there are snuggly blankets, plenty of veggies, and lots of smelly shoes to stick your head in. You will be forever loved, forever missed, and never forgotten. Long live the King.

The night Elvis came home with me

My handsome man

"Don't worry mama, I'll fix Elvie's heart!"

Doing what he did best, snuggle

Our version of the Superbowl

Woobie misses her sidekick as much as we miss our Batman

Meet Jenn: My Brave New Boss

Pardon my absence from the blog, I've been super busy trying to juggle my newest adventure along with all of the regularly scheduled craziness.

I've picked up a part time job, but I use the word job in the most fun way possible because this does not feel like a job. The hours are super flexible, it's five minutes from home, and I've made a new friend! Jenn has a great sense of humor, she's motivated, super brave, and she happens to be my new boss. We run errands, I cook, she keeps me laughing, and Friday we are having a sushi and shopping date! Oh, and she happens to be in a wheelchair...and I'm her new badass personal assistant.

I had been tossing around the idea of going back to work for months, but the idea of leaving the kids or having to put them in daycare made my skin crawl. Then it hit me: why not try to find a family or someone in the special needs community who needs some extra help? The husband's new schedule made it feasible to be gone a few hours in the morning, and as long as I was home by early afternoon, he would have enough time to sleep and head to work, meaning the kids would be with one of us, eliminating the need for day care!

I've been working with Jenn for a few weeks now, and we've fallen into a good routine. I go over to Jenn's house in the mornings, stay for a few hours, and head home in time for the hubby to catch some z's. Jenn has Fredreich's Ataxia, a disease that causes progressive damage to the nervous system, making everyday activities more challenging for her. I help her with anything she needs help with, but mostly it just feels like I'm hanging out with a friend I've known for years. She recently finished a temporary job, and has been applying for jobs and waiting on opportunities to present themselves. Last week she received an email inviting her to interview for a position with a Chicago based marketing and promotions company. When she asked my advice on whether or not she should attend the interview, I told her, "what's the worst that could happen?" Little did I know...

I showed up at Jenn's last Thursday ready to get her to the interview on time. I think she was a little nervous, but as usual, she was cool as a cucumber. We headed down the road, chit chatting and making plans for lunch that day, expecting the interview to go like any other interview: questions, answers, a handshake, and then waiting for a phone call with an offer. We made it to the business, got got Jenn settled into her wheelchair and headed for the front door of the office building. We weren't inside for a millisecond before my heart fell to the floor with an audible thud. Stairs. I began silently pleading for the office we needed to be on the first floor, but with no signs of anyone around, I knocked on the door of an architectural firm to ask where we could find the offices for the company Jenn was interviewing with (not naming the company for reasons I will explain at a later date). The kind gentleman told me they were located on the second floor, and when I asked about an elevator in the building, he glanced behind me at Jenn and quickly apologized for the lack of
elevator. I thanked him, and filled Jenn in on the situation.

I could tell she was embarrassed, but I wasn't going to let her know that I knew. I came up with a plan to go up to the offices in the hopes that someone would be understanding, accepting, and empathetic to Jenn's situation and conduct the interview on the first floor. "I'll be right back!" I said and cheery and carefree as I could muster, darting up to the second floor with an uneasy feeling in my stomach. I could feel the mama bear instinct prickling the hairs on the back of my neck, something was telling me things were about to get worse.

I knocked on the office door and walked into a waiting area, with magazines scattered on a coffee table. I overheard someone on the phone having a less than professional conversation, unless the term "dude" has become professional and I missed the memo. The man ended the phone call and headed for the door with his hand outstretched, introducing himself to me, clearly assuming I was the person he was supposed to be interviewing. I introduced myself, explaining that Jenn was the candidate who applied for the job, but that she was downstairs waiting because she was unable to get upstairs due to being in a wheelchair. "Well that puts me in an awkward situation. What am I supposed to do?" I saw red. My jaw tensed, and I'm pretty sure my hands balled into fists. He stood there in front of me, waiting for me to say something, probably hoping I would throw my hands up and say, "oh no big deal, don't worry about it!" WRONG. Mama bear was in full effect, and as calmly as I could manage, I simply said, "Why don't you go down and speak with her." He looked at me as if the thought never crossed his mind to actually go down and speak to Jenn, like this was an unimaginable thing for me to request. Red. Bright red.

I followed him down the stairs as he introduced himself to Jenn and then stood there looking down at her in silence. He looked to me, as if wanting me to facilitate the conversation. It was clear to me he had no intention of conducting an actual interview. He asked Jenn what kind of position she was interested in, something he should have known given the fact that she applied for a job with his company, a job that was posted to a job search website. She explained what she was looking for, and he went into a short explanation about the job, highlighting the fact that the team met on the second floor of the office, then travelled to the retail locations for the day. Jenn even asked if there were any office positions, clerical work, or work from home opportunities, and was simply told, no. "Okay, thank you." Jenn, even gracious in a moment when I would have lost my mind and my cool on the guy, verbally obliterating him until he felt like a squashed bug on the floor. I grabbed the back of Jenn's wheelchair and headed for the door as quickly as her wheels and my feet could take us. The only thought in my head? GET OUT! GET OUT! GET OUT!

I was fuming. I wanted to go back and give the guy a piece of my mind, and a high five to the face with a steel chair. Or maybe introduce him to my bumper? I'm kidding of course, but the thought definitely crossed my mind. Jenn cracked jokes, but I could tell she was upset. The reality was, she would have been miserable in the position, and who wants to work for a douchebag? The whole car ride home was painfully silent and awkward, so I did the only thing I knew how to do. I found the nearest Starbucks, and bought us both a deliciously expensive cup of coffee (it was too early for margaritas, trust me...we considered that too).

I got home from Jenn's that day and sat down on the couch with Addy. The longer I thought about what transpired, the angrier I got. Discrimination because of a disability? This is still happening? I've seen stories on Fox News, or in the Huffington Post, or circulating on social media, but I've never stood and watched it unfold right in front of me. It was heartbreaking, infuriating, and eye opening. I thought of Addy, I thought of all the Lucky Fin kids we've met over the past year, some with other medical issues that have put them into the hospital. Would Addy be told one day that she couldn't do something because of her limb difference? Would she know that she is capable of doing anything she set her mind to? Of course she will, because we will raise her to be a strong independent young woman. I hope that she would have the strength and determination that Jenn has, and wouldn't let some asshole in cheap loafers make her think any less of herself. I hope she acts as graceful and composed as Jenn did, and not fly off the handle and verbally accost the man like I wanted to so badly.

When I first started working with Jenn she told me about an organization she supports called 3e Love, who's goal is to change the perception of disability. The company was started by siblings Annie and Stevie Hopkins in 2007 as a social experiment to promote their unique symbol and social model of disability. The company now has a trademarked International Symbol of Acceptance (wheelchair heart logo), I know this because Jenn owns every piece of clothing humanly possible with the symbol on it! You can learn more about the company and all the wonderful things happening with 3e Love on their website, I'll be ordering my t-shirt soon! Organizations like 3e Love, The Lucky Fin Project, Born Just Right and so many more aim to educate the public, embrace diversity, and allow communities of people to form in support of one another. Disability discrimination is something that should be and needs to be erased from society. We are all people, capable of more than we give each other and ourselves credit for. Being different is simply that; being different. Our differences make us who we are, and set us apart from every other human being in the world. Shouldn't we celebrate each other's differences instead of using those differences as a basis to discriminate? I will continue to be an advocate for not only my daughter and Jenn, but for the special needs community as a whole. These are people with so much to give to the world, so much talent, so much hard work and determination, so many stories of love and loss. They should be held in high regard, not looked down upon as a lesser community.

And to the uneducated, misinformed, small minded man at the marketing company...karma. While this may not have been but a blip on your radar, this experience has lit a fire under me and many others. You will have your day, sir...I promise.

Jenn loving life! But maybe not as much as she loves that drink...

Special thanks to Jenn for not only allowing me into her life, but for allowing me to post this story about her braveness in the face of discrimination! You're an amazing lady, I'm lucky to have you as a new friend and boss!