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.