The Birthday Blues: Addy Turns Two

She's turning two tomorrow. And this mama is struggling.

Addy is doing amazing. She is a firecracker with crazy blonde curls, sparkling blue eyes, and perfectly pedicured little toes. The princess obsession is in full swing, and it's hard to pry her out of her dress up gear at bath time...but she's still a tough little cookie who has mastered the art of the choke hold.

This year we have been fortunate enough to share Addy's story several times in the media, and have made more friends in the limb different community. In two weeks, we are finally attending our first Helping Hands Picnic to connect with even more amazing families on this journey with us. She is thriving, right on track developmentally, and chatting up a storm.

With all of these wonderful things happening, it's really hard to admit that I am struggling. Addy's birthday brings memories flooding back, and the tightness in my chest settles in and won't let go. I'm not sleeping, I'm dreaming about Addy's birth, and the panic attacks take hold at night and don't stop until the sun comes up. I've refilled a prescription that I never intended to, I'm taking my deep breaths, and I'm trying to hide the tears when they start rolling out of no where.

We celebrated Addy's birthday up at the lake house this weekend, and I made it through with minimal tears, trying to stay present in the happy moment and snap pictures to remember Addy's sweet face every time she ripped the presents open to find yet another Frozen themed gift. Tomorrow is her official birthday, and we will celebrate again on a smaller scale just the four of us.

Once the frosting is wiped away, and I've bribed Addy out of her tiara and princess shoes, I will lay her down in bed, and allow myself to fall apart. I'll remember every moment of her arrival, the painful days that followed, and all of the tough moments we've had over the last two years. Then I will look to the future, knowing that Addy will continue to prove to us that having ten fingers is overrated. A sweet friend reminded me that the first two years of her son's life were the hardest for her as well, and knowing that I'm not alone in my feelings softens the edges of my fear and doubts. Hopefully Addy's third birthday won't hit me as hard, but I know that these feelings will always bubble to the surface around her birthday each year. This is our journey with Addy, and I'm still trying to manage the ride as best I can.

Happy Birthday sweet girl. You've changed my life in so many ways. 

You are more loved than you will ever know, my amazing Addy Grace.

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! 

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. 

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.

It's Here...And It's AWESOME: Under Armour MagZip

While this doesn't directly pertain to Addy now, it's a task that many children and adults with upper limb differences struggle with on a daily basis, one I know Addy will struggle with and conquer in her own unique way.

When I heard that Under Armour was going to be producing MagZip clothing in the Fall of 2014, I was still in the early stages of accepting Addy's limb difference. Knowing that there was going to be a product available that would help make things easier for my daughter, and all the new friends we had made with limb differences was inspiring.

Our friends over at Born Just Right got their hands on one, and Jordan was able to navigate it with flying colors! Jordan gave the MagZip jackets a raving review, and the video her mom Jen posted was noticed by UA's marketing team and offered to send her some jackets in some snazzy colors! I am so excited for Jordan, Addy, and all of our limb different friends! Hopefully more clothing companies will pick up on the MagZip technology and manufacture their own.

Like I said, I know that this doesn't apply to Addy now...they don't even make them small enough for her right now! But you better believe I will be tracking one down to play with THIS WEEKEND!

The Eve of the Big 1

The cake is baked, frosted and sprinkled. The dress is picked out, and the pasta salad is made. Just a small get together with our close friends tomorrow to celebrate our big girl turning one whole year old. I've been flooded with memories and emotions all day long, and I'm sure tomorrow will be more of the same. A year ago today I was pregnant, swollen, miserable, and anxiously counting down the hours until I had to head to the hospital for the big c-section. I knew that I would be holding a beautiful baby girl in a matter of hours, but I had no idea that our eyes would be opened to an entirely new world.

I could go on and on and on about the details of that day. The emotions, the crying, the contrasting heartache and immense joy. But for now, I will soak up every last second I can with my baby girl before she officially turns one whole year old.

Big Strong Girl

Two weeks ago on a Wednesday morning, I woke up with a nervous pit in my stomach. I scurried around picking up the clutter, shuffling the piles of crap from room to room, and chugging more coffee than I needed. It was the day of Addy's first physical therapy session and I was a wreck. I didn't know what to expect. After the evaluation and receiving the reports that had wrong information, and seemed a little short sided, I was amping myself up for a fight with whoever walked through the door. 

At exactly noon, our buzzer buzzed alerting us to the arrival of the therapist. Keegan was shuffled into his room with a picnic and the promise of a park trip if he was a good boy, and I stared at the door nervously awaiting the arrival of what I was sure was going to be a woman I would want to punch in the face. I was completely wrong. 

Liz showed up with two boxes of toys, and a giant bouncy ball. She had a warm smile on her face, and comfy clothes on, ready to work with Addy. She put down all of her gear and introduced herself, and instead of putting her hand out, embraced me in a reassuring hug. She slipped off her sandals and pulled on a pair of socks and got down in the floor with Addy. She got into her box of tricks and started pulling out toys, fake food and buckets and trains and bouncy balls. She was soft, she was gentle, she waited for Addy to accept her. About 10 minutes into the session, Addy crawled over and offered Liz a bite of a Cheerio, and I knew that we were going to be just fine. 

Liz was impressed with how much Addy was capable of, saying the reports she was given didn't give her enough credit for where she was at developmentally. She asked me questions about different stages and when Addy reached them, all while working with Addy in ways Addy didn't even realize she was working. It looked like playing, just with a little more structure to it. Liz told me that working Addy's trunk muscles would help her stabilize and be able to balance more easily. I had questions for her about Addy's ability to walk, and whether or not it would be difficult and Liz reassured me that she would be walking in no time. She also agreed with us that preventative PT was a great option for Addy, which was great to hear. She gave us some homework to work on, and some stretches for Addy's neck (her muscles on the right side of her neck are tight from trying to crawl and look up, something I never thought a limb difference would have an affect on), and told us that she would see us the next week. With the first session over, and meeting our wonderful therapist Liz, I knew that Addy was in good hands, and that having her in physical therapy was not only the right decision, but the best decision. I am so thankful to have Liz in our lives, and to know that we are doing what is best for our big strong girl.

Working on standing from a raised-seated position

That was two weeks ago. Since then, Addy has had another session, and Liz was amazed with how much progress Addy made in just a week's time. She is pulling herself up on everything, lowering herself to the floor without falling over, and even standing unassisted for 10 seconds or more at a time! She is learning to use her little arm to stabilize herself and pull herself up on things so that she is able to utilize her left hand for hold or grabbing, something she hadn't quite figured out before therapy started. 

Seeing her growth in just a weeks time has made me realize how lucky we are to have Addy in our lives. Not only has she amazed us on a daily basis as she has figured things out and shown us how capable she is, but she has inspired us in so many ways. A year ago, I had so many worries and questions, and so far Addy has answered them all in ways I couldn't have imagined. With her first birthday only days away, her arrival into this world has been on my mind quite a bit. I am in such a different place now than I was, and I have Addy to thank for that. Yes, I still get frustrated with people's reactions to Addy's limb difference, and I am sure I will continue to. And yes, I will continue to worry and have more questions as Addy conquers milestones and meets new challenges, but she has proven to us that she can figure it out. We can figure it out, all of us, as a family. With all the love and support this little girl has in her life, there won't be anything she can't accomplish. 

Working hard for those Cheerios

Thomas the Train exercises while standing with her back to the couch to improve her core muscles

Different is Beautiful

I am struggling. I've been trying to decide whether or not to put this into writing, but after my doctor's appointment today, I felt like I should be honest not only for myself, but for anyone else struggling.

After Addy's less than zen arrival, I began to struggle with anxiety and panic attacks. The first few times I took Addy to the grocery store or even to her well baby check ups, I was flooded with feelings of anxiety. Even the day before the appointment or errand running, my stomach would knot up knowing we would be in public. With people. People who would be able to see Addy's limb difference. When our son was born, I found any reason I could to get him all gussied up and take him out to show him off. I loved people complimenting us on what a cute little red head we had created, and the only anxiety I had was whether or not I packed enough diapers and formula in the suitcase of a diaper bag I carried around. When it was time to head to Addy's well baby visits or the grocery store, I found myself grabbing a muslin blanket and covering her up, making sure that her limb difference was hidden. I am so ashamed to admit that I hid her limb difference, but I did. I hadn't come to terms with it yet, and hiding it was easier than addressing it with people that I didn't know. Any time I had to pull her out of her carseat to feed her or change her diaper, or if she woke up and her arms were flailing, I was looking over my shoulder and all around to see if people were staring. They were. Even if they were just looking at my beautiful new baby, in my mind, they were staring at her limb difference and judging me. Judging her.

A year later, I have accepted Addy's limb difference. She is making amazing progress on her own, and with the start of physical therapy. In Michigan, people would not openly stare. We had a few run ins that were uncomfortable, but for the most part people were polite. We're in Chicago now, which is looking more and more like a whole new planet. I had an infuriating encounter with an older woman who was offended by my "Ten Fingers Are Overrated" tshirt, which I handled with an immense amount of restraint. An accomplishment that a year ago would have not been possible. Yesterday, a little girl pointed out Addy's limb difference to her father seated on the bench next to us at a splash pad. My husband quickly stepped in and used the "Finding Nemo" to explain Addy's lucky fin and assure the little girl that Addy was perfectly healthy. Addy helped by waving and squealing at her just to drive home the point that she's a happy little miss. At the swimming pool, we've had countless stares, open stares. Unapologetic stares. Whispers. Pointing. All of which I have noticed. I know that people are genuinely curious about Addy's limb difference, and I am more than happy to answer questions or discuss it. Hell, I even carry Lucky Fin Project pamphlets and brochures for some such occasion! But the open staring, whispering, and pointing that they aren't even trying to hide??? I'm pretty fed up.

I am whole heartedly aware that this isn't going to go away any time soon, Addy will always have a limb difference, and I have accepted that. For now, she's completely unaware of the staring, pointing, and whispering...and she will be for a few more years. What happens when she hears it and sees it? I know that she will take her cues from us, and that we will teach her how to respond when she's in the situation...but what happened to parents teaching their children the right way to deal with their curiosity? And the adults? Why do they feel it's okay to stare and whisper? Are they above the rules we expect our children to follow?

Maybe it's the big city, maybe I'm just an emotional wreck because our baby is turning one in a matter of days...but I've had all I can take. I will continue to deal with the situations the best way I can. I will try to educate people on ability versus disability. I will continue to love and support our daughter in every aspect of her development and growth. Most importantly, I will teach my children that being different is beautiful, and to celebrate the differences in others.