Sweet Words & Accepting/Sharing My New Reality

This past week has reminded me that I need to take a more active role in keeping this space updated. If not only for own mental health, than for those seeking comfort in the words of someone who is walking the same path they are. Last week was a perfect reminder of this, a reminder I have desperately needed.

I received two beautiful messages, from two different women, both with worries and concerns for the new men in their lives. I was able to meet up for coffee with one of the new mom’s, and while my children made it hard to even form a sentence, it was wonderful to meet her and share stories. I’ve had these conversations over and over, always re-telling the story of Addy’s arrival and the events following, and everything we’ve done to ensure her success and happiness since then. I’ve given advice about seeking out physical and occupational therapy, about how to deal with the stares and questions from onlookers and naturally curious children, always promoting and singing the praises of The Lucky Fin Project as a sort of sanctuary for new parents seeking a community.  And while I always feel a kinship with other parents of children with limb differences and friendships are born instantaneously, this week was different. This week, I met Amy.

Amy’s message left me teary eyed with my heart exploding. I wanted nothing more than to jump in the car and drive to St. Louis to wrap this new mama in my arms and tell her everything would be okay. Amy is where I was almost two and half years ago, still wrestling with and struggling with her new reality. Neither of us were aware that the child we had been carrying and protecting for nine long months was about to be born missing the lower part of their right arm and hand. It was devastating. It still is. Sometimes, daily.

Amy is the first new mom I’ve spoken with who’s story so closely resembles my own it is eerily comforting. To know that I was not the only one in shock, blaming myself for what happed to Addy, being so completely consumed by devastation that I was unable to truly celebrate her arrival. Just like Emily Perl Kingsley’s poem, we were expecting to get off the plane in Italy, and we landed in Holland. It takes some getting used to, and Holland is beautiful…but it’s not Italy, not by a long shot.

Most days, Addy’s limb difference floats to the back of my mind, not even a blip on the radar. Other days, we have an encounter with someone, or she says something, and I find myself dwelling on things I cannot change, and it hurts. It hurts to the core. I have been an open book when it comes to the struggles I have faced with Addy’s limb difference in the hopes that other parents and families that take this journey know they are not alone, and that their feelings are both understandable and completely normal.  It’s a rollercoaster with highs and lows, and sometimes I fall right off the damn rollercoaster and into a hole of deep depression and can’t seem to climb back out no matter how hard I try. Two weeks ago, I almost fell into that hole again…and I can still feel the muscle strain from trying to claw my way back out.

After dealing with mind numbing pain and some rather interesting gastrointestinal pyrotechnics for close to a month, the day finally came to have my gall bladder removed. It was full of gall stones, and making life pretty miserable…and I wanted it out as soon as humanly possible. My husband and I arrived at the hospital and I donned the ever so flattering open backed hospital gown and super sexy knee high socks, complete with calf cuffs to keep me from getting a blood clot. I was looking good, and feeling ready, and slightly nervous. After everything I went through during Addy’s delivery, I am no longer comfortable in a hospital. I didn’t know that being back in a scratchy hospital gown preparing for surgery would rock me as hard as it did. I kept my composure as best I could, chatting with the nurse about books, and cracking jokes with my husband and amazing best friend who showed up to surprise me and show her support. I spoke with my anesthesiologist, the doctor visited, and it was almost time to go. Everything was fine until the surgical team came in to get me, and I began to crack. I was shaking and having a hard time keeping my breathing even. I took deep breaths, and tried to keep the tears from rolling down my cheeks. At this point, the nurse was unaware of everything I had endured the last time I was in a hospital being wheeled into surgery. My husband looked at me with his knowing eyes, knowing all the things I was feeling, and tried to comfort me as best he could. He kissed me and told me he would be waiting when I got out, and they wheeled me down the hall.

We got into the operating room and moved onto the table. They laid me down, strapped my arms down…just like they did during the c-section. They put the oxygen on me, and told me they were going to give me the medicine to put me to sleep, and I welcomed escaping into oblivion, knowing when I woke up, it would all be over and I would be able to go home soon. Boy was I wrong.

Emergence agitation or delirium is “a known phenomenon in the post anesthesia period”, according to the ‘American Association of Nurse Anesthetists’. Patients experience flashbacks to traumatic events, often placing them back in the moment of witnessing a severe injury or even a death. The underlying cause is not definitely understood, but studies within US Army hospitals suggest that patients who suffer from posttraumatic stress disorder (PTSD) are at a higher percentage of patients who suffer with emergence agitation or delirium at a rate of almost 20%. I’m explaining all of this because I woke up from surgery gasping for air, having a full blown panic attack. I was thrown back to July 22, 2013…the day Addy was born. I was in it. I was crying, I was hurting, and I was mourning all over again. 

The nurse that was taking care of me couldn’t figure out what was happening, and I was in no condition to communicate with her. Assuming I was in extreme pain, she administered more pain medication, making it even harder for me to figure out what was going on. Once I finally calmed down enough to try and talk to the nurse, I explained. I told her about Addy. I told her I was given a possible diagnosis of PTSD by a therapist this summer. I told her I was so sorry…over and over and over. Looking back, I don’t think I was apologizing to her at all, although I must have been a giant pain in the ass to deal with. I think I was apologizing to Addy, maybe to myself. Maybe out of shame for the feelings I was having. I was embarrassed. I was falling back into that hole that I had worked so hard to stay out of.

I don’t bring up this PTSD diagnosis lightly, and I haven’t mentioned it before on the blog because I honestly didn’t think it was possible. My husband is in the Military; he has seen war zones and unimaginable atrocities that humans inflict on each other. He’s watched his friends come home changed, or not come home at all. So how is it that I am the one facing a PTSD diagnosis? Not possible. Two weeks ago, gasping for air and clutching my nonexistent pregnant belly, reliving my trauma, being in that moment again unable to separate reality from memory…I very quickly realized that PTSD is now part of my new reality, and I am working towards accepting that. This new terrain is something I will learn to navigate. I think finally accepting it is a huge first step, and sharing within this space is a second huge step.

I am an open book. This space has been therapeutic for me, and knowing that my words are being read by new mothers and comforting them through their journey is amazing. I am honored to be looked at as a source of information and comfort within the limb different community. Messages like the ones I received last week are why I started this blog in the first place. Amy’s words have played through my head all week, I needed them more than she knows. I know we will keep in touch, and hopefully plan a trip to laugh, cry, and drink wine together while we share stories of the arrival of our little Holland tour guides. Addy was given to me for a reason, and I believe this is it…to help new mama’s catch their bearings as they begin their journey.

Welcome to Holland friends, it’s not Italy…but it’s absolutely beautiful, and the greatest adventure you’ll ever have.

Could he be any sweeter? Addy is in love already! 

Welcome to Holland, I'll be your tour guide.

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.

Addy's Big Debut: Sharing Our Story

The day Addy was born, I was filled with anxiety. I felt alone. I felt like I had failed her already. It wasn't until I found the Lucky Fin Project that I truly began to feel a sense of peace about Addy's limb difference. I found families with children just like Addy, accomplishing anything they set their minds to, and I felt peace. I spoke with mothers who's experiences were similar to mine, and I felt relief. We shared our fears and hopes and we felt a sense of community. I swore that I would take my experiences and turn them into a positive, no matter how long it took to make happen...and on Wednesday morning, I accomplished that goal.

A local news channel was contacted by the parent of one of the students working on Addy's 3D hand. They wanted to come to the high school and interview us on the experience, and tell Addy's story. To say I was nervous would be kind, I was freaking out...but I knew that this would be a great opportunity to showcase Addy and the hard working students who created her hand. I planned to wear all of my Lucky Fin gear in the hopes of them getting a little free advertising as well! Three birds with one stone, right? 

We showed up to the high school and Addy led the way to Mr. Daniels' room, knowing her boyfriends weren't far away. I thought I was nervous, but Mr. Daniels was pacing and already turning red...the camera and reporter nowhere in sight! Addy was happy to be amongst the men in her life, so she chased them around as we waited. Ali Hoxie showed up, the one woman show for the day, toting a large camera bag and a smile that lit up the room. Addy was immediately comfortable with her, demanding to be picked up and snuggled. They were fast friends as soon as Ali handed her the microphone! She explained the plans, and began setting up her equipment, and I could see both the students and Mr. Daniels get even more nervous and antsy at the sight of the camera.

I began going over all of the information I wanted to share in my head, trying to figure out the best way to word things without spontaneously bursting into a sobbing mess. Ali positioned the camera, and we were ready to go. I took a deep breath...and we got started. 

After my interview, Ali interviewed both Mr. Daniels and the students. I stood off the side, snapping pictures, chasing Addy, and listening as they spoke about their experience helping my daughter. I was in awe. These are big, burly, high school football players talking about how exciting and touching the experience was for them. It was all I could do to keep it together. 

When it was all said and done, we thanked Ali for taking the time to hear Addy's story and for doing such a great interview. I was pretty sure the story would be shown from a positive perspective, and not a sob story about a girl with one hand...yay! She told us the segment would air at six o'clock that evening, so all that was left to do was to wait and see the final product. 

Just like in Cinderella, the clock struck the magical hour and our story aired. Within minutes of showing, I was flooded with texts, phone calls, and messages from family and friends congratulating us on the story. I showed Keegan, who was both excited to see his mama and sister on television, and a little salty about not being involved. We Facetimed the husband, who from Atlanta, had tears in his eyes as he watched our daughter's story play on television for thousands of people to see. It was an amazing experience, and then it turned into a truly incredible experience. 

My phone buzzed, alerting me that the blog's Facebook page had received a message from a girl named Britney. As I read her message my eyes filled with tears. She had seen Addy's story and reached out to assure me that Addy would do amazing things in her life and shock everyone with all she accomplishes. She told me she knew this  because she is 23 years old, and was born without her right hand. She saw my shirt during the interview, got online, and found The Lucky Fin Project. She found an amazing community of people, just like her, because of the news story. And just like that, almost two years after finding the LFP family, I helped someone else find them as well. 

The segment was posted on the news channel's Facebook page, and I have watched in utter disbelief and as the number of views continue to grow, and the comments flood in. So many people showing support for both our daughter, and the school for taking on such a heart warming project. More messages of people finding the LFP family, and even a family who spotted my shirt and gave the Lucky Fin Project their own shoutout! The last time I checked, the video had over 36,000 views and counting. That's an astounding number of people that Addy's story has reached! 

We cannot thank the people involved enough. To Mr. Daniels and the students at Van Buren, thank you for taking on the project and continuing to create hands for our girl. Thank you for taking the time to get to know us, and for looking out for Addy, and letting her steal your keys and drag you around by the finger. To our friends and family, thank you for your continued love and support. Twenty months ago, I was a mess, hardly able to say "limb difference" without becoming hysterical. I could not have gotten to where I am today without each and every one or you assuring me that Addy would do amazing things. And thank you to everyone who shared the story on social media, you've helped share our message of love, acceptance, and celebrating differences further than I ever imagined would be possible. This is just the beginning for Addy, and I know that she will continue to inspire and amaze people for years to come! 

From the bottom of our hearts, our deepest thanks. 

You can find the story here! https://www.facebook.com/video.php?v=10152667265656481

A Hand for Addy

I am getting horrible about blogging, I blame the husband leaving me for six weeks to deal with the daily chaos that is living with toddlers. Between breaking up fights over transformers, attempting to potty train Miss Independent, and remembering to feed the monsters...I have approximately twenty minutes a day to myself. Which I usually spend white knuckling a cup of coffee and talking myself off the proverbial ledge, but I digress.

We've had some exciting things happening amidst all of the chaos. The first and most exciting thing is the opportunity to get Addy a 3D printed hand! I started this process while we were still in Chicago, where a local high school had volunteered to help us create a special hand for our girl. Obviously when we found out we were heading back to Ohio for the husband's new job opportunity, those plans were put on hold and I was left wondering if we would be able to find someone in the area to continue the process with. 

Here's where the story gets really good. I called my old high school, the one I graduated from almost ten years ago. I was instantly nervous as the office secretary answered the phone, but I managed to string together a few words in the form of a question. She asked if she could put me on hold for a minute while she checked on something. She came back to the line a few minutes later and said she was going to put me through to the shop teacher, Mr. Daniels. I giggled, explaining that he was the shop teacher when I was in school all those years ago. 

Moments later, I was speaking with Mr. Daniels, pouring my heart out to a man I wasn't entirely sure remembered me. "What was your last name again?" When I reminded him of my maiden name...something clicked, and he laughed. Now that he remembered me, he wanted more information. I told him about my girl, her shocking arrival, and the newest technology that could give her an amazing and unique tool to explore her world with two hands. There was a long pause, I could feel him processing everything. And then he said this: "We've been waiting for an opportunity like this to come around. We would love to do this for you...I'm really excited!" With my heart pounding and tears in the verge of exploding, I let him know the timeframe of when we would be moved back, and we made plans for us to go in and have the group of students who would be working on this project meet Addy. 

Last week, that meeting happened. I was giddy, and hoping that we would leave knowing whether or not they were going to take this project on or not. To my surprise, Mr. Daniels had already ordered many of the parts needed to begin the process. He had already began helping Addy. We were doing this, and I was over the moon.

The students trickled into the classroom, settled into their seats. Mr. Daniels introduced Addy and I, explaining that their new project was going to be building Addy a hand with their 3D printer. I could tell there were a few students who were excited, they asked questions, wanting to know more about Addy, her abilities, why we were pursuing a 3D printed hand, and what our connection was to the school. Mr. Daniels made it a point to let them know just how many years ago I was a student there, and that although I seemed domesticated promising the students cookies on our next trip, that back in the day...I was a hellion. Talk about embarrassing. 

It was a great visit. The students took some measurements, we chatted a little bit longer, and then we left them to begin the planning. I was proud of myself. I talked about Addy, everything we've been through, and managed to do it without crying. I'm sure some of the students aren't that interested, and I know that a few of them are excited, but I hope with all my heart that they know how incredible this is for our daughter. I hope they know that they are working on a project that uses cutting edge technology to do amazing things for my limb different daughter. I hope they know that this project could change her life, or at least give her the opportunity to experience life with two hands, something I can't give her. I'll never be able to thank them enough, but hopefully some baked goodies will give them an idea of how much this means to us. 

I want to be very clear. We are not trying to "fix" Addy. She is perfect to us in every way. A prosthetic in any capacity is not a "fix", it's a tool. These tools make it possible for people to walk again, children are able to run the bases and ride a bike, hold a pencil or their child. These 3D printed prosthetics are an amazing way to test drive a prosthetic. Addy has never used one, we made the decision to wait and see how she adapts on her own first before introducing her to any tools that could help her through her life. This is an opportunity for us to see if she enjoys one, will use it, and then determine if we pursue a more technical and expensive prosthetic, or if Addy is happy to continue adapting and navigating the world as she does now, with one hand and a whole lot of determination. People who were never able to afford a prosthetic are able to get one made for them at a minimal cost, and the kindness of volunteers, and that is a truly amazing thing. 

Next month is Limb Loss Awareness month, or Limb Difference Awareness month as many of us in the community prefer to call it. Our journey to get Addy a 3D printed hand is just another way for us to celebrate her her limb difference, a chance to educate people about the limb different community, and to show the world how incredibly amazing our Addy is. I will update our readers about the process, and hopefully I will have some pictures to share soon! 

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.

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.