I Solved the Mystery...Sort Of

Several weeks ago, I sent an email to a company that specializes in finding people. I sent the email not really expecting to get anything in return, knowing that I would probably have to cough up some cash before I could get any real answers. Only armed with a name, an age, and a state in which the person was born, I was sure I didn't have enough information to even attempt to begin a lucrative search. I guess I should back up a little bit further.

I am adopted. I am adopted by two of the greatest people on the planet, two people that happen to be my biological aunt and uncle, but they have been mom and dad to me for 25 years. My parents have always been extremely transparent when it came to my adoption, as much as they could be with what little information they had to give me. The decision they made to adopt me becomes more and more profound to me the older I get, even more so now that I have children of my own. My mother knew that adopting me meant severing forever a relationship with her sister, and my father opened his heart and made me his daughter. They were patient with me as I struggled with an internal fight, always wondering what my life would be like if I hadn't been abandoned by my biological mother (let's  be clear: I hate using that term for her. The woman doesn't deserve to be called a "mother" in any capacity). All I had was snippets. Snippets of the past, snippets of my story, usually brought up at my great grandmother's house while pouring over old photos that showed my mom sitting next to a girl with buck teeth, horrible glasses, and hand sewn flannel pajamas. Any questions I ever had were met with conflicting answers, small pieces of the puzzle that never quite fit together. I was always met with the same answer in the end, "she's the only one who knows, we will never know".

My sophomore year of college, I suddenly felt the need for answers. I needed to know my past, so that I could more clearly see my future. I needed more than snippets. I told my parents I was ready, that I was preparing to make contact and make plans to meet her face to face, to finally hear my story. "Are you sure you're ready to hear what she has to say? You may not like what she has to say..." I could tell my mom was concerned, but I hid my nerves and with a brave face assured her I was ready to face the woman that left me all those years ago.

With the support of my family, the help of my best friend, grandparents, and a few stiff drinks in the lounge at the airport, I made my way down to Georgia. The plan was to stay at my grandparent's house and to have the woman I had never met meet me there, on neutral territory, where I would have a shoulder to lean on should things go horribly awry. I had lists of questions, pictures that I wanted explanations for, a need for the stories of my past, and a knot in my stomach the size of a Volkswagen. I settled into my grandparent's house, knowing that the next two days would fly by and I would soon be face to face with the woman that walked out of my life so many years ago. The anticipation continued to grow as my grandmother rehashed memories of my mother leaving, the months that followed, and the events that led up to my adoption. There were so many holes, so many loose ends to tie up, all of which I would hopefully have answers to in the coming days.

The day arrived. It was a total disaster. Without going into too much detail, let's just say that my lists of questions are still lists of questions, the loose ends are still loose, and my past is still a mystery to me. My questions were never answered, all I received was a web of lies strung together to look like a Nicholas Sparks romance novel, all total and utter bullshit. While the meeting didn't go as planned, some good things did come from it.

The tumultuous relationship with my real parents became clear to me. The grass was no longer greener on the other side, I knew that I was where I belonged. I spent several tearful conversations apologizing profusely to my mom, telling her how much I appreciated everything they had ever done for me. I realized for the first time in my life just how lucky I was, and how different my life would have been had they not adopted me. I was able to meet my half siblings, two people I shared DNA with, one of which I'm still in contact with. Perhaps the most profound thing I received from the meeting was a sense of peace. While I still had no real information about my past, I wasn't stuck wondering. I would just simply never know. I had faced the reality of the situation, I would never truly know what happened, why it happened, or how it happened, and for the first time in my life, that was okay. To be honest, I felt sorry for the woman. She couldn't be truthful to the one person who deserved the honest truth.

Fast forward. I now have children of my own. That feeling of sympathy for the woman that walked out of my life has changed. The sympathy is gone, and a more sinister feeling has taken it's place. I cannot fathom any circumstance in the world that would cause a woman to voluntarily walk away from her children. (Adoption is different, I understand that. This was a choice the woman who gave birth to me made knowing she was not returning, and did not let anyone know about the decision. This was abandonment.) What happened to me has shaped the way I raise my children. It has caused me to be afraid, fearful, and panicked. It has made me a helicopter mom in every sense of the word, and I believe that I have every right to be. I have worked hard to try to overcome some of those tendencies, especially with Addy, knowing she needs to be strong and independent. But I still feel extreme guilt every time I leave them, even if only for a few hours. I still panic when I leave them overnight, something that RARELY happens, and when it does, I'm obnoxiously checking my phone and calling to make sure that everything is alright. This has nothing to do with the people watching my children, it is whole heartedly my own anxiety. I never want my children to feel abandoned, unloved, or left behind.

So after all of that happened, I stopped wondering. Until Addy was born, I never felt the need to search out the other half of my DNA, my biological father. I know that Addy's limb difference is not genetic, but it got me wondering about my own genetics and what health risks are present on my father's side. So I started looking. I had a name, a state of birth, and an approximate birth date. I sent an email to a company, not expecting to have any luck. They sent me a few websites to try, a shot in the dark. A few clicks, and there he was. His name, date of birth, and date of death.

No more wondering. No more searching. It's all over with. The only other source of information about my past died four years ago, taking any information he had with him. That's assuming he even knew I existed, yet another question I'll never have the answer to. There was no flood of emotions, no gut wrenching pain, just an "it is what it is" kind of feeling. I'll never know. And that's okay. Because here is what I do know...

I have two beautiful children, a loving husband, a supportive family, an incredible life. I may not know my past, but I can clearly see my future. It's full of love, it's full of craziness, it's full of blessings. I am loved, I am full of love to give, and I am trying to make the best life possible for my children. I have everything I need right in front of me. And that's more than enough. 

Does She Know She's Missing Something?

Since Addy came into our lives almost eighteen months ago, there have been so many questions and only a few answers. Most of our questions, Addy has answered for us. She's shown us that she is able to figure things out, adapt, and improvise. There's one question that I find myself asking daily, more so lately. Does she know there's something missing?

We have watched Addy study her lucky fin so intensely that we wonder if she's putting two and two together. She will stare and pick at her little nubbins, she often points to her lucky fin and gives us a "what the heck?" look. She will reach into the trash can, using her left hand to hold open the lid, and reach in with her right arm, only to realize she can't grab the coffee filter full of coffee grinds laying on top to throw all over the kitchen. She will try to carry her juice cup and hold a toy, and struggles to figure out how to handle it all, but she always finds a way. Lately, there have been gloves. 

It's Winter, and it's freezing here. Keegan recently started preschool which means we venture out into the cold every day to take him and pick him up from school. He also gets to play outside if the weather permits, so Nana got him some really cool Batman gear to keep him warm. His Batman gloves have become one of Addy's new favorite things. As soon as we get in the door, Keegan begins stripping off layers, and no sooner does he pull off the first glove, Addy scoops it up and puts it on her lucky fin. Only on her fin. And then it happens: the look. The look that makes me wonder if she understands that she's missing a hand. That glove goes on and she starts clapping, and giggling, and showing it to us (read that as shoving it in our faces). She will wear it all afternoon if we let her. Is she excited to have more fingers? Obviously they don't work, she can't grab anything, or carry things easier, but does she enjoy the aesthetic look of them? I know that asking her these questions will only lead to one of her go to responses: nana, papa, turtle, bite, dog. She just can't express herself yet, and to be honest, I'm not sure I'm ready to try and answer her questions just yet. Yes, we have armed ourselves with as much information as we can over the past year, and I will of course be honest with her and try to explain her limb difference to her the best way I can. But I still fear hearing her ask me why she's different. 

I know that the community of friends we have built through different organizations will help Addy realize that being different is amazing. I know this because these parents have helped me. They have stayed in touch after only meeting one time, they have shared their stories of happiness and of heartbreak. They have explained to us the ebb and flow of this journey, one that we are only beginning to understand. My Addy is a force to be reckoned with. She will take the world by storm just like our other limb different friends who have been all over the media lately! Between Ezra Frech  and Tommy Morrissey sharing their stories on The Ellen Show, to Noah Galloway winning the "Ultimate Men's Health Guy" title and scoring the cover and the countless others spreading the word that anything is possible, our limb different friends are paving the way for our daughter and so many others like her, and I can't thank them enough. When Addy realizes she's different, and begins asking questions, I will be able to point to role models and our friends and show her that she is not alone. I guess I'm more ready than I thought, but that doesn't make it any less scary. Fingers crossed I have one more year of my blissfully unaware crazy girl before the questions start flying! 

Things I Want to Teach My One-Handed Daughter

The minute we found out baby number two was a girl, I squealed with excitement. Our dream had come true. We were blessed with a son first, and now a daughter would complete our family. We would have been just as happy with another baby boy. A second baby was a miracle in and of itself after two miscarriages, and a baby girl was just the icing on the cake. My mind raced as I began to picture tiny pink socks, a beautiful pink nursery, and a curly haired, blue eyed baby girl in my arms. A list began forming, a list of all the things I wanted to teach her, to pass on to her, to experience with her.

Addy's arrival initially sent all of those thoughts spinning, and left me wondering if I would be able to share those girlie things with my daughter. The fear of missing out on those things gutted me and shook me to my core. Now that Addy has shown us that conquering the world around her is not only going to happen, but happen in amazing ways... I keep adding to the list. Some of them will be tricky for her, some will be easy, and some have nothing to do with her only having one hand.

Teach Her How to Crochet
I learned how to crochet when I was ten years old, being taught by not just one of my grandmothers, but both of them. Each time I saw my grandma, she would teach me a new stitch, help me start a new project, and oversee my progress during our visit. I can still feel her moving my hands through the motions, and smelling her perfume as she leaned over the back of my chair to help me count stitches and fix my mistakes. Now that I have honed my skills, I find it relaxing to feel the yarn slide between my fingers and watch a project come to life. I want to sit in the floor with Addy and a ball of yarn and watch her figure out how to hold the yarn and needle. I want to watch her try, and try, and try, and get frustrated with it, and then try again. I want to share this hobby with her more than I can put into words, but I also believe that crocheting will teach her patience. Hopefully I can pass this along to her, and one day she will be able to make a blanket for her own child just like I did for her.

Teach Her How to Play Softball
I'm not sure I'm going to have to "teach" Addy how to play softball, maybe just help her play. There's no doubt in my mind Addy will figure out how to throw and catch a ball with only one hand, so I'll just offer to help her perfect her craft. Softball was a big part of my life for many years, both playing and coaching. I cherish the memories I have playing on a team, and cherish even more the memories I have from coaching. I want to spend our weekends at the ballfields watching double headers, and cheering on our girl as she proves to everyone that having ten fingers is overrated. I hope that even if Addy doesn't choose softball, another sport will give her the opportunity to prove to others that her limb difference is not a DISability, but an ABILITY.

Teach Her to Love Her Body
I inherited my big ass and big thighs thanks to my mother's side of the family, and only accepted them as being with me forever after meeting my husband...he loves my big ass. I spent years comparing myself to my stick thin and perfectly built younger sister. I have made peace with my body, knowing that unless I commit to starving myself and spending hours in the gym, I will never be a size 6. Yes, I have weight to lose, and I will lose it eventually. But even then, I will never come close to resembling a Victoria's Secret model, I'm just not built that way. I have grown two beautiful babies, I housed them in my belly for nine long months, and earned every stretch mark and both of my cesarean section scars. While I won't be showing them off in a bikini anytime soon, I am proud of them. I want Addy to grow up knowing that she is beautiful, regardless of what society deems as beautiful. She will be beautiful if she is a size 2, and she will be beautiful if she is a size 22. She will be beautiful with one hand. I know that she will at some point have feelings about her limb difference, but she will have her family, and an entire community of truly amazing people who will love her and help her through those feelings. I hope that she will love and accept herself, the way we all love and accept her.

Teach Her to Paint Her Nails & Braid Her Hair
This will be tricky, but it's a right of passage as a girl that you paint your nails obnoxious colors and braid each other's hair at sleepovers. I can't wait for Addy to have girls spend the night, pop them popcorn, line up the nail polish, and then listen to them giggle and squeal as they gossip about boys and sing songs as the top of their lungs. With the help of so many of our friends in the limb different community, there are plenty of YouTube videos and resources for us to pour over to help Addy figure out how to do these girlie things, but I'm sure she will have her own unique way of doing them. If all else fails, I can always take my girl for a mini spa day!

Teach Her How to Cook & Bake
When I was in the first or second grade, my mom tried a new recipe. She spent hours shopping for the exotic ingredients, and hours preparing the meal. Her intentions were in the right place, but as the smell started wafting from the kitchen, my sister and I quickly made up our minds that we were not eating whatever was about to be set in front of us. My dad, ever the supportive husband, told us that since our mother had spent ours preparing it, that we were going to eat it...no matter how awful it was. All of that changed after he took his first bite. A pizza was ordered, and the meal was ran down the garbage disposal. The lesson learned? Learn to cook, and learn to cook well. That old saying the way to a man's heart is through his stomach is true. Ask my husband. I want to pass down to Addy the family recipes that have been at every Thanksgiving and every Christmas dinner. I want her to have my grandmother's sugar cookie recipe, the one that people beg me for and that I refuse to give away. Selfishly, I hope that she will want some of my recipes, and carry on our traditions with her own family someday. I hope that she enjoys being in the kitchen, and that the cooking set I have hidden in my closet for her for Christmas gets put to good use.

Teach Her to Accept Others & Ask Questions
This is something I want for both of my children. Keegan has already shown us how big his heart is, and how amazing his soul is. You never know how a three year old will react to someone being physically different, it took him months before he ever mentioned anything about Addy's arm. When I took him over to Jenn's house for the first time, I wasn't sure what he would say about her being in a wheelchair. I had explained to him that she was in a wheelchair, but still...he's an unpredictable three year old (he thinks she has super powers...it's the cutest thing ever). We've been to several LFP get togethers where Keegan interacts with the kids and doesn't pay any attention to their limb differences. At a park this summer, he befriended a little boy with Down Syndrome, and they spent the afternoon being the "good guys" chasing away the "bad guys". I want them to be brave and ask questions instead of stare, because staring leads to hurt feelings...we've been on the tail end of it, it's not fun for anyone. I want to teach both of my kids that being different is a wonderful thing, something to celebrate, and a chance to educate. I hope that Addy will take notice of her brother's big heart, and follow in his footsteps of being a loving and accepting soul. Nothing would make me more proud.

These are just a few of the things I hope to teach my girl. The list will continue to grow as the years pass by. I know my husband has his own list of things he wants to pass down to the kids, probably more manly things like how to change a tire or tie the perfect knot. I would venture a guess that Addy will continue to teach us just as many things as we teach her. She has already opened our eyes to so many new things, and truly made us all better people just by being around her. She's my sassy little lady, and I know that she will do amazing things and shock us all with what she accomplishes in her life. I can't wait to watch my little girl become an incredible woman. Just not too fast...

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! 

The Chik-Fil-A Meltdown: A Lesson in Judgement & Kindness

Beers. Today, I need beers. Beers, football with my feet up, and maybe some crocheting, because yesterday I had the most horrifying parenting experience I've had since becoming a parent almost 4 years ago.

I've read blogs, and articles about how awful parents can be to each other, always judging the way others choose to parent their child, or not parent their child. There are some things I will never be able to understand or agree with, like the decision to not vaccinate your children. Other topics, I am more than willing to hear other points of view, however quirky and insane, and accept the fact that other people make different decisions for their children. Yesterday, I experienced first hand the judgement and disdain from other parents. The worst part? I know whole heartedly, that every single person in that restaurant, if they have children of their own, had been in my position, and not one of them showed any sympathy or understanding.

The day started with good enough intentions, running some errands with a friend and her daughter, and getting out of the house while the husband had drill on on anniversary weekend. The sun was shining, the snacks were packed, and the carseats were rearranged to accommodate everyone into one car. As usual, it took us longer than planned to get out the door, but soon we were on our way and the little girls were snoozing quietly as Keegan played on the iPad in the very cool and very far away third row of seating.

Our first stop of finding a new carseat was a success, with only a slight meltdown. We headed back to the car only to realize we needed to play Jenga in order to get the new carseat into the car. With all three rows of seats being utilized, and two strollers in the car, finding a spot for the new carseat was interesting, but we managed. With our nerves slightly frayed, we decided lunch would make everyone feel better and hopefully stave off any further meltdowns.

We pulled into the parking lot of Chik-Fil-A, and I knew immediately I would have a fight on my hands. While Addy will eat anything and everything placed in front of her, Keegan's eating habits are beyond picky. Picky would be an improvement from where we are. We have tried bribery, sending him to bed without dinner, forcing him to eat what we eat for dinner, and even making him something different. It's always a fight, no matter what. It's stressful as a mom to know your kid isn't eating, even thought everyone tells you "they'll eat when they're hungry", that doesn't make you feel any better about watching your child actively avoid eating meals.

We found a table in the corner with a window into the play place, the perfect spot to be able to watch Keegan play...if he ate his lunch. My friend went up and got her lunch, and a kids meal for the girls to split, then I went up and ordered my lunch and something for Keegan. I came back to the table, and already, Keegan was showing signs of meltdown. "I don't want to eat that", said as he pointed to a catering menu with a picture of chicken nuggets on it. I knew the best way to get him to eat was to promise play time in the kiddie area if he ate his lunch, this has been proven to be successful multiple times, and I figured it was my best chance.

He started nibbling on his fruit cup and waffle fries, and quickly decided he had eaten enough to go play. Wrong. The fussing began as soon as I told him he had to eat more, and I knew the battle was about to ensue. I stayed with my battle cry, "eat more, and you can go play. If you don't eat, you don't play". More fussing. I tried to stay as calm as I could, knowing if I started raising my voice and getting angry, it would only exacerbate the problem. Keegan is a sensitive child to the nth degree. Something as minor as a sticker ripping in half can send him into orbit in a matter of seconds. I really have to watch my tone of voice, the volume of my voice, and my facial expressions when I talk to him, because he is overly sensitive to all of the above. One hint of me getting frustrated would escalate the situation to an all out war. That being said, it's hard to repeat yourself five million times in a matter of minutes and be met with fussing and refusal to eat. I believe the definition of insanity is repeating the same actions and expecting a different outcome? Yep, insanity is my life.

I got frustrated, and I got angry, and I swore up and down with every four letter word I knew under my breath. I promised him that if he ate his lunch, he could play. But I also promised that if he did NOT eat, he would NOT play. The fussing turned into crying, loud obnoxious crying. The teenager sitting at the next table turned around a number of times to make sure I wasn't beating my child, to which I wanted to smack her in the face. What did she know about a child melting down in public? She hadn't given birth to something you love fiercely, put all of your time and effort into, only to be publicly embarrassed by. Her turning around only fueled my anger. By now I was ready to throw my hands up and leave, but I knew that wouldn't teach him a lesson. I stuck to my motto, only now there was the added threat of a trip to the bathroom for a time out. I might as well have thrown five gallons of gasoline onto an open flame.

I took Keegan's hand and led him to the bathroom. I went into the handicap stall, got down on his level, and spoke in a calm voice. I wiped his mouth, which by now was hanging open with drool falling freely as he screamed bloody murder and basically hyperventilated. All because he had to eat his lunch. "You need to calm down. Deep breaths. Happy hands. No hitting. Take a deep breath. Calm down buddy..." Once he settled down to a level I felt he was ready to head back to the table, he went potty, washed his hands, and we headed back to our seats. He asked one question, got the answer he didn't want, and all hell broke loose.

My friend and I looked at each other, she had already packed up most of our things during Keegan and I's trip to the bathroom, and with one look she knew I was ready to go. I cleared Keegan's lunch, completely ignoring his screams of "NO MOMMY! I WANNA EAT! I WANNA PLAY!" I had officially had enough, I had officially hit my breaking point, I was officially ready to scream. At that point, one of the happy Chik-Fil-A staff decided to come by and ask if we needed anything, after already visiting our table at least a dozen times, he felt like this was the exact moment we might need some extra sauce or a refill on our drinks. Really? As politely as I could, I assured him that we were fine, and grabbed Addy ready to make my escape from the hell that was motherhood in public.

I grabbed Keegan's hand and the rest of our crap, and started making my way through the maze of tables, with every set of eyes in our path searing into me. You would think that with all of the staring that happens when we are out in public with Addy, I would be used to the eyes. It wasn't even the staring that got me, it was the judgement. The looks of "control your damn kid", the "Jesus Christ...get out of here". I snapped. I saw red. I found myself staring right back at them, both in an attempt to keep from crying, and to show them that their stares didn't scare me. They hurt, but I wouldn't let them know that. One table in particular really got to me, two parents and two teenagers, all four sets of eyes staring right at me...the mother shaking her head in disgust. I locked eyes with her and said, "Yeah, I'm sure you've never had a kid meltdown in public..." and walked fast for the door with my head held high.

What were they trying to accomplish? Did they really think that they could make me feel worse than I already did? Why were they judging me when I would bet large sums of money they had once upon a time been in my shoes? Not one single person offered to help. Not one single look of sympathy or empathy or anything resembling understanding.

I can whole heartedly admit that before having my two monsters, I'm sure I gave parents who's children were in full blown screaming fits judging eyes. I'm sure I shook my head and thought to myself, "teach your kids some manners". What I can't figure out is why parents feel the need to judge each other, instead of support each other. I can't count the number of times that I've jumped up and offered to help another parent who was clearly struggling. Whether it's offering a snack, or grabbing ice for a kid that was stung by a bee at the zoo, or just holding a door for someone with a double stroller, why not help? What do the looks of judgement do, other than make the parent feel like they can't do their job? Shouldn't we be trying to support each other, help each other, and teach our children that when someone needs help, the right thing to do is to offer? I've been on both sides. I've needed help, and I've offered it, and both instances it felt amazing. I walked away feeling like  someone else understood my plight.

Once we got home, the longer I sat and mulled over the situation in my head, the angrier I became. Those parents with their judging eyes, are the parents of the children who stare and make fun of Addy and other children with physical differences. I know this because I've seen the same stares pointed at my sweet girl. I've read other articles and blogs of parents begging parents of the staring children to have a conversation with them about kindness, acceptance, and how asking questions and approaching someone with a difference is better than the pointing, whispering and staring. The past month alone, I have read about a mother's experience with her child in a new school, and the less than warm reception they received, and another mother battling rude children telling her daughter that she's fat. How can we expect our children to act kind when parents are just as guilty of pointing, whispering, staring and judging other parents?

We have to break the cycle. We have to make a conscious decision to both teach and act in kindness. There's that old adage, "actions speak louder than words", we as parents need to live by this. So here I am, another parent, begging parents to take action. It's not only your responsibility to teach your children about accepting differences, but to show them how to accept the differences by offering help, asking questions, walking up and introducing yourself. It's easy to say we accept differences, but it's harder to show that you accept differences. I'm challenging anyone that reads this to act. If you see someone who needs help, who looks different than you: show them acceptance. Show them kindness, show them that you've broken the cycle. Wouldn't the world be better place if we could break the cycle and live in kindness?

Happy to have Daddy home from drill!

Finally Ready to "Bloom"

I started reading Kelle Hampton's blog, Enjoying The Small Things, when it popped up in the "Noteworthy" section of my blog's dashboard while I was looking for new blogs to follow (I had attempted to blog about my adventures in being a military family with a deployed husband, but with not much to report, the blog quickly fizzled).

I was newly pregnant, still holding my breath on whether or not the pregnancy would be viable, so when I came across Kelle's beautiful family, I began clicking through her life, one blog entry at a time. I immediately noticed that her second daughter, Nella, had Down syndrome and my initial reaction was "oh no". I read Nella's birth story with tears streaming down my face, clutching my heart, wondering how in the world Kelle managed to get through writing the beautiful story and reliving the day in such exquisite detail. I surrendered to the fact that there was no way in hell I could have ever gone through such an experience and come out the other side with Kelle's optimistic and unique view of the world. My initial "oh no" reaction quickly turned into a "go Nella".

I continued to read Kelle's blog as I grew larger and larger in pregnancy, always looking forward to the updates about her and her beautiful family's adventures in their everyday life. She was also pregnant at the time, awaiting the arrival of her third child, so we were basically friends already. Then Addy was born, and much like Kelle, my world was turned upside down. I ached, I mourned the child I had been expecting, and fell in love all over again with the child in my arms. A new world was introduced to us through Addy. We reached out for support from other families in the limb different world, needing to know we were not alone. We became part of a community, the special needs community, where we celebrated differences and hoped to educate others on how beautiful and life changing these differences are, something Kelle had been doing since the arrival of Nella. I felt like Kelle and I were now even better friends. We've never met, never spoken, never even exchanged emails, but our children made us friends.

Before Addy was born I purchased Kelle's book, Bloom, if for no other reason than to support a fellow mom. I had big plans of reading it, ambitiously thinking I would have time to read between breast feeding and entertaining a toddler. In all of the chaos, heartache, and moving, the book was packed away. I think subconsciously I knew I wasn't prepared to read the book, Addy's birth giving a whole new meaning to the story painstakingly written inside. Now that Addy has turned one, and we have not only come to terms with her difference but celebrate it whole heartedly, I've dusted off Bloom and I'm ready to read and fall in love with the Hampton family all over again. I'll let you know how it goes, but I'm going to go ahead and guess: lots of tears, lots of laughs, and lots of tugs on the heart strings.

Thank you Kelle, for not only being brave enough to share your story in the blog world, but to go through the labor of love of writing Bloom to share with families all around the world. You are an inspiration to so many special needs families, and I'm still keeping my fingers crossed that one day we will be real life friends.

Cool Weather, New Clothes, & A Ball Pit!

The weather has changed here in Chicago, sending everyone into a frenzy of Pumpkin Spice Latte's, leather boots, and most importantly, football! The cool weather meant one thing for Miss Addy...new clothes!

Giving the boys some time to themselves, Addy and I headed out for a girl's shopping trip. On the list: new pants, new shirts/onesies, new shoes, and anything adorable we could find. I was also on the look out for a new winter coat for Addy, especially since they are predicting this winter to be much worse than last year's polar vortex. Yikes. 

I went crazy shopping for Addy when we found out she was a "she". I was beyond bored with the dinosaurs and fire trucks, all things blue, and all things boy. The tiny pink onesies and itty bitty socks with bows made my heart melt, and I admit, I went completely overboard. I'm pretty sure Addy had the entire Carter's baby girl collection upon her arrival home from the hospital. 

We spent the first months of Addy's life in short sleeves, enjoying the sunshine and not having to deal with rolling sleeves. Then winter hit, and we rolled sleeves all day everyday, her constant wiggling unrolling all of our efforts. This year, she is on the move and into everything! She uses her lucky fin so much on a daily basis, that finding clothes that work for her was very important to me this year. I went back and forth on whether or not to alter them, making one sleeve shorter than the other, and so far, we haven't chosen to do that. I did however, find myself scouring the aisles in stores rolling and unrolling sleeves, trying to figure out what would work best for our little go getter. I found myself drawn to three quarter length sleeves, knowing that they would keep her warm but allow her freedom from my constant rolling of her sleeves. Her newest trick is pulling on the sleeve of her right arm and pulling her arm completely out of the shirt, something she thinks is hilarious, especially when we are out in public. Such a ham. I ended up buying a good mix of three quarter length and long sleeve shirts, knowing that she will be taking both of them off daily anyways, so what difference does it make?

The one thing I am still searching for is a good winter coat for her. I am worried because the circulation in her little arm isn't as good as her other arm, which means it gets cold much easier and much quicker. She's been waking up in the mornings with her little nubbins purple and freezing, and it makes me nervous for this winter. I've bought mittens to put on her this winter, but I haven't found a coat I can alter easily, or one that I can roll easy enough to give her the freedom she craves. We took a trip to a play place this weekend, and the pouring rain forced her into a coat, one that wouldn't stay rolled up on her lucky fin side, and we had to hear about it all the way to the play place...in very shrill screams. My search will continue until I find just the right coat, one that will keep her warm and give her freedom to use both her arms! Am I the only one who spends a little extra time shopping to find just the right fit for my lucky fin girl? Do you alter your kiddos clothes to give them freedom from rolling sleeves? Any tips or tricks you can share? 

We also had a birthday party to attend this weekend, Addy's friend Brooklyn turned one, and we celebrated with a bouncy house and ball pit! Addy had a blast, showing off all of her hard work in therapy working on her balance! She was able to climb up the inflatable steps and pull herself into the ball pit with no problem! Therapy has truly been a blessing for us. Her occupational therapist did a Peabody evaluation today during her session to get a feel for where Addy was falling in terms of milestones in fine motor and gross motor skills. Addy blew her away, showing off all of her new tricks! She tested in the 15 month range, a whole month ahead of schedule! I'm so proud of our hard worker, she has such a good disposition and such great problem solving skills already! We are continuing to work on her trunk strength, extension in her right arm (she keeps it bent and tucked when she walks or is sitting, so we want to ensure she works on full range of motion), and continue to work on her left hand strength. As she hits milestones, new challenges will arise, and we will tackle them one at a time! For now, she's right on track, and we couldn't be more proud! 

Going down the slide like a big girl

Squeals of happiness

Hoarding all the blue balls

She looks more like her brother everyday

Where is The Magical Line?

We all seem to know our limits when it comes to things in our every day life. That extra scoop of ice cream, while tempting, is labeled as being "too much". Buying an inordinate amount of laundry detergent (enough to fill a bookshelf) because it's on sale and you've recently taken an interest in extreme couponing, definitely too much. When it comes to social media, some people just can't seem to figure out where the line is drawn and how to adhere to the limits.

The over sharing of information seems to have skyrocketed in direct correlation to the skyrocketing of Faceook, Twitter, and other social media outlets. Things you would otherwise NEVER have said in public are now being splashed all over social media, all in the hopes of someone clicking the "like" button, retweeting it, or leaving you a comment. We all have those friends on Facebook that make us cringe with their over sharing and general abuse of Facebook, and if you're anything like me, you do monthly clean outs of your friend list to ensure you don't have to hear every detail about someone's day...57 times a day.

My dear friend Jen, over at Born Just Right wrote an amazing post about how she chooses not to post pictures of other limb different children on the blog, focusing only on her daughter Jordan. She gave insight about what brought her to the decision, and how even though her family has chosen to put themselves into the public eye through her blog, she fiercely protects both her daughter and other limb different children by not sharing their images without permission from parents. At the end of the post, Jen asked for people's opinions, and the responses she received made me think about our own devisions about Addy and social media.

From the moment Addy was born, and all of the chaos ensued, a primal need to protect my daughter from harm's way started surging through my blood. The first few images we shared of Addy on social media hid her limb difference, NOT because we were ashamed of it, but because we were still trying to wrap our minds around it, learn more about it, and inform our closest family and friends. Once we had our questions answered and knew that Addy was healthy, my husband and I drafted a brief statement to properly introduce Addy to our friends who were unaware of what was going on. We chose to use Facebook, as it was the easiest way to inform all of our friends without having to repeat the same information over and over (there was a lot of that the first few days after Addy was born).

Once we posted our statement, I was nervous to see what kind of a reaction people would have. I knew that our friends would love and adore Addy just as we did, but I also knew that this was going to shock many of them in the same way it did us. We received nothing but love and support from our friends and family. It was amazing! I read through the comments, one by one, tears streaming down my face. They all loved Addy just as much as we did, and they were all going to love her and watch her grow up and conquer the world right along with us.

With Addy's growing cuteness,  so to did the amount of pictures I posted of her. Again, Facebook was an easy way for our friends and family who lived far away to keep up with Addy's progress and get their daily dose of cuteness. Never in my wildest dreams did I ever think someone I knew would make a heartbreaking comment on a picture I posted of Addy, but it happened. And it hurt. And it made the protective mama bear come out in full freakin' force. With so many people coming to visit and meet Addy, and knowing the amount of pictures that would be taken, I made phone calls asking that no photos of Addy be posted to social media in order to give my husband and I full control of the content online about Addy, allowing us to monitor the comments made on pictures. 

I went through my Facebook friend list and went on a deleting spree, only keeping people I knew well. I made sure that my privacy settings were strict, not allowing anyone access to my page without me friending them. I made sure family members and friends were aware of our wishes, and how much it meant to us to have their support. This does't mean that this was easy for all parties involved. We received a lot of kick back from some family members, not understanding why they weren't allowed to post pictures and show off Addy like we did, and the answer was simple: she's our daughter, end of story. We make the decisions, and this one was non-negotiable. 

We extend the same protection to our son, making sure that his time on the iPad is monitored, and that the apps he uses are safe and educational.  When they are old enough to have their own social media accounts, I will continue to monitor them. I think it's our job as parents to not only protect our children in the physical world, but to protect them in the world of technology as well. It's hard to turn on the television without hearing a story about cyber bullying, some so severe that it takes a young life far too soon. After reading Jen's post, I felt a sense of relief. I am not the crazy, over protective parent that takes extreme measures to protect my daughter from the prying eyes of strangers. I am doing my job. 

I realize that having a blog detailing Addy's life seems hypocritical, but again, it was a choice I made with my husband. This blog has been like therapy to me, and has helped me deal with some truly crappy situations. It has given me a voice in the limb different community, something I have desperately wanted since the day Addy was born. I know that I cannot prevent another child from being born with a limb difference, I'm not sure I would want to if I had that power. What I do want is to create a place where parents of these amazing kids can come and feel a sense of community, a sense of belonging, a sense of comfort. A place where they too have a voice. If I can accomplish that for just one single family...it's all worth it. 

Cooties "R" Us

Sick. Both kids are sick. Which means I am spending all of my time stripping sheets, spraying Lysol, administering medicine, and pleading with the higher power to not let me catch whatever cooties they are sharing between the two of them. If mama goes down with the bug, the plates I am constantly spinning will plummet to the floor and smash into a million pieces. The husband attempts to keep them spinning, bless his heart...but there's just no substitute for mama.

Please pardon my absence for the next few days while I try to eradicate the cooties! 

Poor guy didn't even make it through his whole stack of books!

No room for mama in the bed...

I Am Her Voice

I am not a medical professional, although my husband swears I would have made a great surgeon (all things medicine and slicing and dicing appeal to me). Since being hurled into the special needs community when Addy was born, I have researched, sought answers, spoken with other parents, read anything and everything I could get my hands on concerning symbrachydactyly and it's treatment. My husband and I have taken all of that information and sorted through it all, mulling it over in our minds every time we have made a decision when it comes to Addy. Luckily, we haven't had to make any decisions about surgery, but we have chosen to pursue physical therapy and occupational therapy.

Perhaps the biggest decision we have made since Addy's arrival is to not fit her for a prosthetic. Again, this decision was not made lightly. Addy's limb difference is lower on her forearm, giving her full range of motion in her elbow and the ability to hold things, reach for things, and adapt to her surroundings pretty easily so far. We want Addy to be able to use her arm as much as possible, and feel that trying to strap a cumbersome prosthetic to her would hinder the use of her arm versus help her. We know that there may come a time when Addy wants a prosthetic, and if that time comes we will move heaven and earth to get her the best prosthetic on the market. Until then, she is working hard to strengthen her fine motor skills, strengthen her core muscles to help her with balance, and continue to utilize her little arm.

I have to explain the decisions we have made on Addy's behalf, what we believe to be in her best interests, so that you understand why I was so frustrated with today's visit to a new pediatric orthopedic specialist here in Chicago.

I was very nervous to find a new specialist here in Chicago after having such an amazing experience at Cincinnati Children's during Addy's first visit at three months old. The purpose of the visit was not to obtain any new information about Addy's limb difference, but it was recommended that we do a check up once a year to make sure her muscles were developing properly and to ensure she is meeting all age appropriate milestones. I knew that it was going to be a stressful visit since big brother Keegan would be with us, but was hoping for a good meeting with the doctor. The visit was off to a rough (and annoying) start when we weren't even called back until 2:45, forty-five minutes past our original appointment time. I can overlook it, I totally understand that doctors get busy and behind schedule, fine. Once called back, Addy was weighed, her height was measured, and we were ushered into a room where a nurse took a less than thorough history. More waiting. Then, a social worker came in on behalf of the doctor to ask more questions, all the while, the minutes ticking by along with my patience. More questions answered, more waiting. An orthopedic fellow, working with the specialist (the one we had been waiting over an hour to see) came in to ask the exact same questions again, and take a quick look at Addy's arm. We were then sent down to radiology where I had to leave Keegan sitting in the next room and physically restrain Addy in order for the tech to get a decent picture. Then another trip back to the exam room where the fellow returned to show us Addy's X-ray. "Yep, no wrist bones. She will never have any motion there." I knew this, I wasn't expecting any new developments, but some bed side manner would have been nice.

Finally, we were ushered into another room where an older gentleman sat on a computer clicking away as we walked into the room. Without introducing himself he asked which child was there to see him. Really? You haven't even read the name on the chart? My blood was reaching the boiling point. As if waiting two hours to see this man wasn't infuriating enough, now he didn't know which kid was there to see him. Maybe the one missing her forearm and hand...maybe? UGH. I faked a smile and introduced Addy who was about as fed up as I was. He then began explaining to me that Addy's limb difference was not an amputation but was symbrachydactyly (still considered a congenital amputation, but because she has tiny nubbins, it's not typical of an amputation). I'm guessing the explanation was more for the benefit of the fellow working with him than me, but still. He asked me to sit Addy on my lap so he could examine her arm, which he did in about two seconds. Then this happened.

Doctor: "Have you seen a prosthetic specialist?"

Me: "No, my husband and I have chosen not to pursue any prosthetics as of right now."

Doctor: "You really need to see a prosthetic specialist to see if there's anything she would benefit from."

Me: "Like I said, we aren't really interested in pursuing a prosthetic. We feel that because the amputation is below the elbow and she has such good range of motion and is able to use her arm, we don't want to hinder her progress.

Doctor: "Doctor ______ is the prosthetic specialist here, he has a lab here on campus and is available for appointments on Fridays. We will get you on the schedule."

I then received a ten minute long explanation of the different types of prosthetics, the different ends of prosthetics, the benefits of a grabber versus a hand, and the different ways in which a prosthetic would be worn.

At this point, it was all I could do to keep it together. I was on the verge of tears and didn't want to make a complete ass out of myself in front of these men, who clearly didn't give a flying rat's ass whether or not they were upsetting me. I took the piece of paper I was handed and headed to the reception area clinging to the shreds of sanity I had left. At the reception area, I handed the woman the paper, expecting her to tell me that my insurance didn't need a co-pay and that we were all set to go. Instead:

"Okay, so you need an appointment with Doctor ________ in prosthetics. He's here on Fridays, I have September 19th or 26th available, what works best for you?"

As politely as I could muster, I repeated myself  yet again, explaining that we were not interested in pursuing a prosthetic at this time and that if we were, I would call and schedule an appointment. I grabbed the card she handed me, picked up Keegan, and pushed the stroller as fast as I could out the front doors of the hospital. By the time I hit the parking lot and made it to the car, I had tears streaming down my face and was gasping for air trying to catch my breath.

Let me clarify for anyone who thinks I am being ridiculous: I am not upset at the thought of Addy needing a prosthetic. I know in my heart of hearts that she could live her entire life without ever using one, and again, if ever she voices the need or want for one...she will have the best prosthetic available. What cut me to my core was feeling like I had somehow made a wrong decision in NOT pursuing a prosthetic for Addy. I felt like I had done something wrong. No, the doctor or staff didn't come out and say that I had chosen the wrong path for my daughter, but that's what it felt like. That our decision was wrong, that we weren't acting in the best interests of our daughter. Maybe the doctor simply wanted us to have more information, maybe I wasn't clear in the fact that I had done my research. Maybe it was the same speech he gave to every parent he saw that had a child with a limb difference, and maybe I took it too personally. But in that room, feeling as if my voice wasn't being heard, it felt horrifically personal.

My voice is all that Addy has. I am her voice. I am her advocate, and I am doing the best that I can with the information that I have. My husband and I weigh our options before making any decision, and none have been made lightly or easily. We are just now into our second year with Addy's limb difference, and every family dealing with a limb different child takes their own journey. We have met families that have been through countless surgeries, others that haven't had any. Some families don't choose to do therapy, while others do. I was lucky enough to sit down with Jen Lee Reeves of Born Just Right and discuss her daughter Jordan's journey with her helper arms and the preventative therapy she does to keep her strong enough to operate her helper arm. I am by no means discounting the use of prosthetics, I know the benefits they hold for many children and adults, I have seen them first hand (no pun intended). I am simply saying that our choice has been not to take that path yet, and feeling as though our decision to not travel that path was the wrong one, was hurtful.

I know that we are doing everything in our power to make sure that Addy is a strong, capable, amazing little girl. We are her biggest fans, her cheerleaders, and her advocate until she is able to be her own. I will continue to stand up for what we believe to be in the best interests of Addy. I will continue to research, pour over articles, and discuss different options for her. I will never stop. I will never allow anyone to make me feel as though I am not acting in the best interests of my daughter ever again. Today was a challenge, and I learned a lot from the experience. Hopefully I'll never be put in that situation again...but I think that's wishful thinking.