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! 

A Blissful Moment With My Boy

I had a moment in the wee hours of the morning today, a moment I need to document so that as it fades in my mind...I can come back to this space and breathe new life into it. I need to keep this moment forever. I have to. 

I found myself half asleep, having just been kissed by my husband who was leaving our hotel room to catch the shuttle for the airport, to fly to Georgia for six weeks of training for his new job. I laid in bed with Addy, keeping enough distance between us in the hopes of avoiding the next flying appendage that would inevitably make contact with my face. I was fading back into sleep, calculating a few more hours of rest before we headed home, when Keegan burst into tears in the bed next to me. 

I slipped from under the covers, moving my pillow to create a barrier for my flailing daughter and moved to the next bed to comfort my little man. He was half awake, tears rolling down his cheek, perhaps knowing daddy just left, and in need of some snuggles. I rubbed his back and smoothed his hair, and then, the moment happened. He rolled to his side, laid his head on my arm, and snuggled into my chest with his back. 

We were a perfect fit. Like the puzzle piece you find under the table, after hours of working a puzzle only to find you're missing that one last piece. His cries stopped, his breathing slowed, and all at once he slipped back into slumber. I was left with teary eyes, and a warmth in my heart. It was as if time stopped. I took it all in. I felt his little body breathing, I smelled his hair, and tried to memorize how his long eye lashes glowed red in the early morning light. 

He still passes out kisses freely without embarrassment, and still professes his love to us multiple times a day. He still laughs at my funny faces, tells me I'm beautiful, and thinks I'm the bee's knees. He still needs hugs before bed, his daddy to play boy things, and mommy when he's sick or has a new ouchie. 

Those moments will fade, he will become a strong and independent young man, one who couldn't possibly kiss his mother goodbye in front of his friends. I know this, and I will be incredibly proud of him. But today, just in that moment, he needed me. My little boy needed his mommy, and in that moment I gave him all of me, and it was blissfully perfect. 

Perhaps that moment was so special because they don't happen nearly enough. With all of the craziness in our busy life as a family, I feel stretched to my limits, that I'm not really taking stock in the moments that matter. I need more of these moments, and I'm vowing here and now to slow down and really see them. Feel them. And hold them in my heart and mind forever. 

An Update in Photos

Miss Addy had her evaluation for PT and OT and we are happy to report that she is right where she needs to be! They are not recommending treatment right now, just check ins every 3 months to assess her progress and determine if she needs more services! So proud of our tough cookie! 

The husband left and returned to us after two weeks away and we all survived without him...barely. 

Our big boy has made amazing progress in Preschool, and was even awarded the Super Friend award for helping a friend feel better when she was sad! When we asked him how he made her feel better, he said, "I gave her three smooches!"

Addy continues to be our monster child, most recently figuring out how to escape from her bed. I'll be blaming all of my grey hairs on this one.

Everyone came down with a cold, so we've spent the last week doing anything and everything to make the kids feel better. Even resorting to lollipops in the bath tub. Desperate times call for desperate measures. 

And finally, we are relocating. Packing it all up, loading it into a truck, and making our way back to Ohio where the hubby accepted a new job. The weird part? We are moving to the town I went to high school in. The feelings are mixed, but I'm excited to be closer to friends and my family! Just hoping this move is more beneficial than problematic...time will tell. 

Addy's New Best Friend: A Doll Like Me

When I first came across her page, she had 72 "likes". After a blog post by our friends over at Born Just Right, I knew Amy was going to have her hands full trying to fill orders of the adorable dolls she was making, who look just like their new owners. Suddenly, Amy was running a small business, and A Doll Like Me was born. Her page now has over 1,600 "likes", and shows no signs of slowing down anytime soon.

"I think the first doll I made was a zucchini wrapped in a towel on my grandma's farm...I'd like to think I've come a long way since then!" She definitely has. Amy creates each doll special for each child, giving so much love and attention to detail that the doll come out with just as much sparkle and personality as it's owner. She had been making dolls with vintage pillow cases when a friend of a friend, Macey, requested a special doll. One that looked like her-with an amputated leg. "That was my first experience with a limb difference of any type, and word traveled pretty quick on Facebook! I tried to stay ahead of it and contacted Jenn from Born Just Right to see what she thought about the idea. After Jordan got her doll, I realized how important it is for kids to have a doll that looks like them!" And it all snowballed from there.

Amy worked as a social worker in a pediatric oncology unit, where she saw first hand how body adjustment takes a toll. She watched as kids going through chemotherapy lost their hair, and always thought it would be neat to sew dolls without hair to comfort patients in their journey. It wasn't until Macey requested a doll that looked like her with a limb difference that Amy realized there wasn't already someone making limb different dolls. "More than any other toy, kids need to see themselves represented in dolls...whether it's skin color, hair color, no hair, or any other difference! I believe that it is validating because it just becomes a reflection of the recipient!"

Though she never intended it to become a business, things have definitely escalated to the point of her becoming a celebrity within the limb different community! Orders are flooding in, and the best part for Amy is that it's not just little kids who are receiving the dolls. From little ones like Addy, to an 11 year old girl overwhelmed with emotion when seeing her doll, to a 70 year old woman receiving a doll, the demographic is huge. "My hope is that little ones, like Addy, will never have to say "I wish I had a doll that looks like me"! Amy has even had people donate dolls to kids who otherwise couldn't afford to receive a doll of their likeness. One donor said it perfectly when he told Amy, "we all have it in us to be someone's guardian angel". What's even MORE amazing, is that $5 of each doll's price is donated to Camp No Limits. These dolls are making a difference in more ways than one.

Amy is doing something that no other mass production company can do. She is bringing dolls to children that look just like them. I remember thinking about dolls when Addy was born, and how one day she would notice that they had two hands, while she had only one. I even thought about trying to find a doll with soft arms to try and create one that looked like Addy, and I am so thankful I found Amy. When I ordered Addy's doll, I knew that while she may not understand how important and special her doll is now, there will come a time where she will have questions about her missing hand, and I will be able to use her doll to show her that she is perfectly made. She will see herself in the doll, and hopefully find comfort in her snuggly friend! We have affectionately named Addy's new friend "Sassy", and she has definitely made our little girl very happy already!

To order a doll of your own, visit Amy's Facebook page, A Doll Like Me, and send Amy a message along with a photo of the recipient so that Amy can work her magic! I'm sure she has a wait list going by now, but trust me...it's well worth the wait to see the happiness these dolls bring!