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.

PT? OT? DT? Holy Moly...

At Addy's 9 month check up, we saw a different pediatrician because our usual doctor had a family emergency and wasn't available. We had only seen our "usual" pediatrician one time, so seeing a different practitioner within the practice wasn't that big of a deal. She was friendly, interested in Addy's limb difference, and turned out to be a wealth of knowledge.

Unlike the pediatrician that saw Addy when she was born, this doctor had actually seen several cases of symbrachydactyly, and even went to medical school with a woman that was missing her left hand and had just recently opened her own dermatology clinic. She went on to let me know that through the state of Illinois, there was a program called Child and Family Connections. This program offers free evaluations to any child from birth to age 3, that presents with any physical or mental delays. Depending on what the evaluations find, the program offers a range of therapies ranging form physical therapy, developmental, sensory, and occupational. The pediatrician gave us the paperwork, gave me the name of a book to read about picky eating toddlers, came back and poked Addy a few times, and we went on our merry way.

I went home with the paperwork burning a proverbial hole in my pocket. Once the kids were in bed, I got online and researched the program. It all checked out, and after speaking with my husband, we agreed that a free evaluation would be a good way for us to gauge where Addy is compared to other kids her age who aren't missing a hand. I called and scheduled the appointment, and a friendly case worker was assigned to us to help us navigate the journey as well as facilitate the evaluation process. After meeting with her to fill out the appropriate paperwork and take Addy's history (yes, I had to relive her arrival in vivid details AGAIN...), she suggested that a physical therapist, occupational therapist, and a developmental therapist all evaluate Addy to see if she would benefit from any therapy.

At 9:00, all three therapists arrived eager to get started. They wanted to review Addy's history, elaborate on a few things, and then they started their evaluation. They tested Addy in several ways, and I was assured that they were taking into account her missing forearm and hand in the scoring of the tests. They explained to me that the tests don't take into consideration the loss of a limb, so if they had scored her as failing the tests simply because her missing hand wasn't doing anything, she would have scored as having a 100% delay, which is obviously not the case. The physical therapist especially scored her evaluation different. She noted that while Addy's hand is missing, she still brings both arms to midline when holding things, she still uses her little arm to hold things on it's own, and uses it to crawl. She is not disabled, she is differently abled. 

After two hours of evaluations and people poking at her, Addy was fading quickly. I grabbed her blanket and laid her down for her morning nap, took a breath, and headed back into the living room to hear what the therapists recommended. They each explained how they scored her, what they found to be her problem areas, and what they suggested. Developmentally, Addy is right where she should be which was a relief to me. The physical therapist and occupational therapist both agreed that Addy would benefit greatly from weekly therapy. The physical therapist told us that Addy has low muscle tone, which is contributing to her stability issues. She also said that it could be part of the reason she took so long to crawl, and still wasn't pulling herself up to stand on her own (and I had been blaming it all on her missing hand). She said that once Addy built up some strength and muscle tone, that we could back the therapy down to two times a month instead of weekly. I told her I wanted to be as proactive as we could be, because I know that her missing forearm and hand will cause other body parts to compensate, which in turn could cause other issues like scoliosis or pain in her left shoulder. We agreed that preventative physical therapy would be important to continue. The occupational therapist had similar views, but had a great way of putting everything into perspective (I'm pretty sure I wasn't able to hide how I was feeling and that the worry and heartache was written all over my face). She told me that Addy was showing some delay on her left side, probably due to the low muscle tone, but that she was right on the bubble. Then she said this: "Addy doesn't have a right hand, so we need to make sure that her left hand is the best it can be because it's the only one she's got!"

No one wants to hear that their child is delayed in any aspect of development. I knew that when we started this process, and even before we started, that therapy would probably be recommended. After speaking with so many other families who's children have limb differences, I know that each family has their own journey, all very different even though our children are all so similar. We want to ensure that Addy has the best life she can possibly have, that she is strong, confident, able, and above all else, loved. We know that putting her through therapy will be hard on her physically, and I'm sure at some point even psychologically and emotionally, but it's what is best for her and her future. We want to give Addy all the tools she needs to be successful, and the best she can be. This isn't to say that it still didn't hurt my heart hearing that she needed therapy, because it did. I broke down after the therapists left, and buried my face in my husband's chest and cried, but I only cried for a few minutes. Then I pushed my feelings aside and looked at our beautiful little girl crawling around chasing the dogs. She's happy, she's healthy, she's able. We will do anything and everything in our power to make sure she stays that way for the rest of her life!

The Cuteness Runs Over

The cuteness in this picture.

I can't take it. 

She get's cuter and crazier every single day. 

She may look just like her big brother and daddy...

But she's got her mama's sassy attitude.

Oh lord. 

A Whole New World

It's been an interesting few days around our house. Between Nolan being gone for his annual two week Army training, the frequent meetings with our realtor searching for a new house while wrangling the kids, and Addy's newfound mobility...things have been uber crazy. Yes, I said uber. We have been busy with park play dates, meeting up with new Lucky Fin friends, planning all of our summer trips, all while allowing Addy to explore her surroundings and making sure she doesn't eat copious amounts of crumbs and dog hair off the carpet.

Not only has Addy's new ability to scoot and crawl made it interesting for our dogs, (their daily naps have shrunk considerably...) but Keegan seems to have realized that Addy is in fact a human, and fun to play with. She even enjoys playing with his dinosaurs, a bonus for all parties involved. While her new found moving and shaking is fun for her, it adds new levels of stress and worry to my daily plate. My days of jumping in the shower while she plays in the floor are over. All showers will now be taken when said party is asleep. Living in a third floor apartment with two kids, and two dogs has also been challenging. Running the dogs down for their daily constitutional used to be a quick 5 minute break, a break to recharge my batteries and take a few deep breaths before returning to the craziness. Now, the dogs will have to cross their legs until Addy is napping or contained in her high chair before they will be able to empty their bladders. Sacrifices will be made all the way around, including Keegan having to clean up his room more thoroughly. Life is rough with a mobile little sister!

All jokes aside, it's been emotional watching Addy learning to crawl. I have spent the last 10 months of her life researching, talking to other parents with limb different children, and worrying about how and if she would learn to crawl. Would it hurt? Would she be strong enough? Would she skip crawling all together and just go straight to walking? All my questions were answered when she began her hybrid crawl/scoot across the floor this week. Tears were shed, we clapped and squealed in celebration. Even big brother proclaimed how proud he was of her (proud mama moment!).

It's been a crazy week, and I'll be spending this week doing more of the same, and counting down the days until husband's return to us.

The Glue...But What's Next?

I was never good at the school thing, I struggled with my grades through high school, keeping my grades just above eligible to be able to play softball. When I was accepted to my dream college I was elated, but I was freaking out. What in the hell was I going to major in and do with my life? Nothing really stuck out. I knew I had to choose a major where math and science were at a minimum, and writing was at a maximum. Communications seemed to be a good fit for me, so I followed in my mother's footsteps and graduated with a degree in Organizational Communications.

I was lucky enough to be one of the few to accept a job before I had even received my diploma. I packed up what little worldly possessions I had, loaded up a U-haul, and with my father's help, drove the 1000 miles and countless hours and potty breaks from Athens, Ohio to Longview, Texas for my first big girl job. It was hard, not the job, but being in Texas. Nolan had found out a mere month after we started dating that he would be deploying. In true military fashion, we were engaged within months of knowing each other. I spent my days in Texas working 90 hour weeks at a job I hated, knowing I had made a huge mistake in accepting. I spent what little free time I had Skyping with the love of my life who was in a war zone halfway around the world. 

Nolan came to Texas for his R&R in September, and we spent every waking moment with each other. There were some little white lies told to my boss in order to take time off, time I hadn't accrued yet, but you do what you can for love, right? We talked about our hopes, our dreams, and our life together in the future. We planned where we would live, what our dream house looked like. We talked about how we would raise our imaginary children, and how our weekends would be spent at baseball field in the summer, and on the bleachers in the fall. "I want a mini Nolan...an exact replica of you!" I said, hoping I would have a boy first, and a girl second. On a Friday afternoon, after having all of our wedding planning dreams dashed by each side of the family, we ran to the Greg County courthouse and were married at 2 o'clock in the afternoon. 

Our honeymoon was spent at an airport saying heartfelt and tearful goodbyes. Onlookers held their hands over their hearts with sympathy across their faces as they watched us snuggle in airport seats at the terminal. We made the most of what little time we had left, trying to console each other, telling each other that the months would fly by and we would be together again starting our lives before we knew it. 

The months did fly by, and he came home to me safe and sound. We spent several getting to know each other again, I think we were both so excited about his return that it came out as nervous energy. I had spent months planning for his return, I had all the ingredients to make his favorite dinners, I had raided the local Victoria's Secret, and had even laid in enough booze that we never needed to leave the apartment. Once we were back to being us, there was talk of starting a family, and before we knew it, I had my head in the toilet every time I smelled food. Nine glorious months, our son, Keegan was born. 

From that moment on, my life has been solely dedicated to my family in every aspect of the word dedicated. I am the cook, the cleaning lady, the chauffeur. I am the nurse when they are up sick with a fever, and the exterminator when a spider is spotted. I wipe noses and butts, play Batman and dinosaurs. I am the glue in our family, I keep the watchamacallit moving. I am a homemaker, and I love my job, and I truly believe that this is what I was meant to do. With the addition of Addy into our lives, it's only made the job crazier and more rewarding.

There has been talk of adding another munchkin to the craziness, but after Addy's less than zen entrance into the world and a bet I have with my mother, I think our family might be complete. I am both okay with that, and heartbroken. I complained my way through two very different pregnancies, but overall, I love being pregnant. I love the idea of growing a human, a tiny sea monkey that totally controls your body for nine long, heartburn ridden months. I love the moment you meet your baby for the first time, the moment they imprint themselves on your soul. The moment your world is shaken tot he core, your heart grows bigger than you ever thought possible, and you welcome your little one into the world. It's hard to believe that I will never have that experience again, which is why I hold my own birth story moments so close to my heart, running through every detail in my mind over and over as to not forget a single moment. I want to be able to look back on their births with them someday, telling them of the emotional moments they came into my world and changed it forever.

So while I am heartbroken, I am happy. I have two beautiful kids that fill my life with just as much love as frustration. They are healthy, they are happy. They are crazy, they are ornery, but they are mine. They are the best thing I have ever done with my life, and I couldn't be prouder.

With Keegan getting older and closer to entering into school, and Addy growing up faster than I ever imagined possible, I'm beginning to wonder what the next phase of my life holds. Obviously, I will continue my everyday duties of mommy hood. The butt wiping and bug squashing will continue for a few more years before they ignore me completely and demand I drop them off around the corner as to not embarrass them in front of their friends. So what's next for me?

I've been tossing around the idea of opening up a shop on Etsy, the problem...I haven't a clue how to start my own business. With all of the crafty things I've been making for friends and family and how much I enjoy not only the process but the reaction my creations receive, I know I would love it. The issue? Finding both the space and time to research how to begin, and create enough of a stock to actually open the shop! I recently finished a quilt for my best friend's daughter, and it was one of my favorites I've ever made! I'm working on a friend's wedding flowers, made completely from fabric and ribbon, and while tedious, they are turning out beautiful and insanely unique! I'm not sure which direction I would go with the shop, but the whole idea is intriguing! I would be able to continue to pursue my passion of creating things, while helping to provide for my family with flexible hours and being able to still be the mommy I am to my crazy babies.

I guess I need to get my butt in gear and start researching what to do...

My work space...also known as my dining room

Quilt for my best friend's daughter and her new big girl tree house bed

Soaking up the Virginia sunshine on our road trip