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.

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

Alone at Last!

We are finally getting back to our usual routine and schedule after a whole week of visitors. You know how it is, having visitors starts off as a good idea and slowly turns into a circus act of spinning plates and trying to keep them all going. You have to keep the visitors happy, while trying to keep some semblance of order and a glimpse of your normal routine intact. It's fun and frustrating all wrapped up in a big box with a bow of exhaustion on top! To say we are happy to have things wind down and have our place to ourselves again would be an understatement.

Addy had another awesome week of therapy with both PT and OT. She has met all of the twelve month milestones, which means she is officially caught up...I'm a proud mama! We are going to continue PT once a week for a few more weeks, and then back it down to twice a month. That means we will have a little bit more freedom during the week, which is also awesome! OT is still going well, but it has taken Addy a lot longer to adjust to the environment of the therapy room and all of the equipment. Renee, the occupational therapist, has been so patient with Addy, and swears up and down that she is a joy to work with! She only gets about 45 good minutes out of her before she starts to lose focus and starts grabbing the keys and heading for the door. Totally cute, and slightly embarrassing at the same time.

To show our appreciation for our therapists and all the hard work they've been putting in with Addy, and will continue to put in with her, I ordered them bracelets from The Lucky Fin Project! (I also ordered two more shirts for me and Nolan, a "Lucky Fins Rock" shirt for big brother, and a new messenger bag that I am obsessed with!) At the end of the session today, I handed Addy the little bracelet and told her to give it to Renee. She wobbled across the mat and handed it to Renee. As I explained what it was and where it came from, Renee's eyes welled up with tears. She was so touched that we thought of her, and was so excited to learn about the LFP! She hugged us both, thanking us over and over, and vowed to wear it always. Spreading LFP love always makes me happy!

I'm getting a much needed night off of mommy duty tonight, which I am both excited about and nervous at the same time! I know that the kiddos will be fine with Daddy, Keegan probably won't even notice I'm gone. It's hard finding a balance between being the 24-7 mom and taking time for myself without feeling guilty, something I am really trying to work on for myself and for the kids. I know they need time away from me just as much as I need time away from them. So bring on the cocktails! If it takes me a while to update again, it's probably because I'll still be recovering from the cocktails...it takes this mama a lot longer to recover than it did when I was in my prime!

Until then, if you'd like to order your very own Lucky Fin Project bracelets or other goodies, head over to The Lucky Fin Project and donate to a wonderful cause!