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.