It has really been on my heart to write about the pain mothers
often carry inside them after giving birth to a child with one or more physical differences. In my personal case, my son's physical differences are of the upper and lower limbs (limb differences). However, in my experience talking with other families, these feelings are true in almost any instance where the baby is born with a difference that can be seen by others.
The number one thing I hear from new (and even some “seasoned”) mothers of children born with a limb difference is “How do I get over the guilt?”…
To be completely honest with you, I don’t know that you ever fully do. I don’t know for sure that you will ever completely get over it BUT, there are things you can do to make it better. I know this myself because I was the definition of mom guilt.
Key word here: WAS.
I spent the first three weeks of my son’s life obsessing over every move I had made during my pregnancy with him. I thought back to each food I had eaten, the walks I’d taken, the time I’d spent in the car, and even critiqued little details down to the potholes and speed bumps I had run over… all the time immersed in the idea that despite doing everything by the books, I’d failed somewhere, somehow. I ate, slept and breathed remorse. It was so odd because the truth was, I had NO reason to believe I’d done ANYthing to cause his differences! In fact, I was told just the opposite by a handful of doctors and specialists. Each one told me “it’s just a spontaneous thing that happens sometimes” and not to stress, not to worry, not to blame myself, not to think about it.. but the more I heard those words, the more I thought, “they are just saying that to try to make me feel better”. And I TRULY believed I had somehow caused this condition for him, even though I'd done everything by the books and even though. I knew my constant feeling of guilt was not healthy. I also knew it wasn't logical for me to obsess over it. I couldn't help it. I was consumed with "what if" syndrome.
My older two boys were not getting the attention they craved and I was stuck in a depressing place that I never wanted to be in. After those first three weeks, I promised myself I was going to be better but I wasn't confident I could figure out how.
I put on a happy face for my friends and family the best I could. That
only made things worse for me. Inside I was hurting more than anyone could know. I'd smile while out and about and then silently cry myself to sleep most nights. Eventually I'd get to a point where I couldn't pretend to be "OK" and I would just lose it. Tears, depression, screaming. It was an awful time that I wish I
could go back to and do over.
I created an awareness page to be able to share things
about my son’s condition. I started telling people about the condition that
caused his differences instead of telling people about my feelings. And I found that the more I educated the world about limb differences, the better I felt about my son's future. In order to tell other moms it was undeniably not anything they did to cause their child's differences, I had to learn to accept that reality for myself as well. For whatever crazy reason I began to accept it the more people I coached. It helped me see I was not alone and the more I heard myself say those words to other mothers, the more I began to understand that it wasn’t my fault just as I knew it wasn’t theirs.
I connected over social media with other families who also had children with limb differences. I will never forget the first time I met another limb difference mom in person. She had a daughter about my son’s age. Her daughter had half of her arm spontaneously amputated before birth by amniotic bands, the same way my son lost his fingers and toes. It was the easiest, most “normal” introduction I‘d been a part of since before my son’s birth. Our conversation didn't include the “Hi, this is Cam, he, um, has a… well, he was just born this way” messiness. It was just, “Hi, this is Cam”. And that was it. No elephant in the room. No weird stares. It was just so easy! We later even talked about our struggles and fears. We could finish each other’s sentences!
BECAUSE… SHE. REALLY. DID. UNDERSTAND.
I started attending every limb difference event I could. I always brought my son along with me. I loved being in a room, park, or camp of people who really did "get it". I STILL do. If I’m not surrounded by people who love someone with a physical difference, I’m out teaching others to love and accept people with physical differences as the amazing individuals that they are.
The number one thing I hear from new mothers, like I said above, is that
they want to know how to get rid of the guilt they struggle with. The number one thing I hear from the moms who have had time to learn how they best cope with guilt is, “I wish I hadn’t wasted all of that time feeling guilty”.
That is me.
I am that mom who wishes I had known. I am the mom who wishes I hadn't wasted the time feeling guilty. The one who wishes I'd reached out sooner to someone (especially in person) who truly understood so I could have had the support early on. And now I am working hard to make sure other moms don't have to learn the hard way.
So... if you are feeling guilty for your child’s differences, please reach out to someone who gets it. I PROMISE it will help just to know you aren’t alone. Find a way to help another new mom because it will mean the world to them and it will also help you to help them. Attend a camp with families who also live in this exciting world of limb differences because they will understand exactly how you are feeling. Write or share your story because the more awareness you bring to your child's condition, the better accepting people will be as your child grows. Most importantly, do not waste your time feeling guilty because guilt is not a band-aid. You need a treatment plan and the very best treatment for mom guilt is a perfect blend of love, awareness, and friendship.
It really works! ...I know it does because I am proof that it does.
You can learn more about my son, Cameron, and Amniotic Band Syndrome at www.facebook.com/CamsStory.
If you’ve found other things that have worked for you, let me know in the comments so that others can see your suggestions as well!
They are a great option for someone who can’t afford a grasping device, someone who wants or needs a cheaper alternative to tradition prosthetics, who wants a customizable 3D printed themed device, or who has partial fingers that make it nearly impossible to fit into a traditional prosthetic.
Chris Craft reached out to his group of supporting Hand Challenge volunteers to help us get enough hand parts printed in time for the event. Colleges, grade schools, businesses, and individuals from all over the USA, and even other countries, worked quickly to print and ship parts to us. One volunteer from Europe even donated enough to build several hands. It takes an average of 15-30 hours to print each part to assemble one full hand. Mr. Hendrix’s wife, Debbe, printed day and night on their family’s personal 3D printer up to the evening before the event. We only had a short time to get the hand parts printed, inspected, thermo-formed, sorted, labeled and shipped to each of the three Microsoft locations. This event could not have happened without the love and commitment of each of the kind Hand Challenge supporters donating their time and materials.
The day of the Build-A-Thon, Mr. Hendrix, Mrs. Hendrix, Tech-savvy Microsoft Employees, Myself (Sarah Haight), and my son Cameron (who uses one of the 3D printed hands himself), all set up for the event and welcomed each Microsoft employee as they came excited for a hands-on learning experience that would give back to the world. After a short speech and demonstration, instructions were provided to each table and the building commenced. We made rounds to help with questions when needed.
People laughed, problem solved, and worked so well together. A few even turned it into a competition amongst themselves or other tables. The response from those who made it were overwhelming positive. Everyone had so much fun that many employees have asked that we return to make it an annual event!
On top of the donations raised by the employees who came to the build events, Microsoft Corporation matched each donation made, dollar for dollar! Several of the hands have already been matched with grateful recipients. We will be donating as many hands as needed to the Spring 2018 Hands to Love camp as well. As always, each hand is free for the recipient thanks to donors like Microsoft.
We are extremely grateful to each individual and organization who participated in the preparation all he way through the completion of this initiative. Here is a huge virtual round of applause to Matt Hendrix for leading this initiative, to each of the Microsoft locations for hosting the events, and to the donors. Different Heroes is honored to have your support.
You are all Different Heroes!
Lets talk about my amazing neighbors, Kelly and Jon Demario...
Earlier this year, Kelly asked me if she could make Different Heroes a beneficiary of the funds she planned to raise at her upcoming fund raising event, Purses with a Purpose.
Only a few months prior, her husband Jon fundraised for Different Heroes at his Charlotte Food Fight event in Matthews, North Carolina. (Super fun event by the way!)
This sweet family has raised $1700 with food and gently used purses!!!
To put that into perspective, they just made it possible for Different Heroes to cover the camp fees for up to THIRTY FOUR campers to attand one of our favorite limb difference camps or for us to make and mail over 30 assistive hand/arm devices for families in need of a free prosthetic style device!!
My neighbors are... DIFFERENT HEROES!!!
Please share your fundraising ideas with us in the comments... we would also love to hear what YOU are doing to help the limb difference community:)
I spent SEVERAL hours on the phone talking with some amazing families who have either recently adopted a child with a limb difference or are in the process of doing so.
I will back up a bit to say that, I've been gathering research on limb differerent adoptions to bettter understand the process, the costs, and the struggles familes sometimes face during the process since we hope to soon be able to help with these situations.
Anyway, I had a few questions to ask each of these familes, who have been through/are going through the process now. During the interviews, each of them had questions for me as well. I got to help four families today just by being able to listen to their fears and providing some information to them. Each of the families thought it was so cool that I actually got to give birth to my ABS (Amniotic Band Syndrome) baby. I've never really thought of it as "cool". In fact, I struggled BAD with that at first and still have days when I am hard on myself for having those feelings (even though I know it wasnt caused by anything I did). These familes had questions about how it felt to feel him move with the bands, if I knew about it, could I feel if he was in pain, did he have to have extra care at birth, what the ultrasounds were like, questions about surgeries and therapies, camps, casts, what causes it, what the bands were like at birth, and all sorts of other things.
I was able to help four families today BECAUSE I have had the privilege of giving birth to an ABS baby. I couldn't have said that 5 years ago.
My goals for Different Heroes, at times, feel unreachable... because, I do have HUGE goals in mind for this nonprofit and I set veey high standards for myself and everything I do. But, the important thing right now that I have to remember is not so much the number of dollars raised or the amount of people we help (although that is important as well)... it's the quality of the help, the love we show, the lives we change for the better. I want to help everyone.
Every. Single. Limb. Different. Family.
But until we, as a nonprofit, can do that... I will cherish these conversations that change lives. To say I have found my passion in helping other families "learn the limb difference ropes" would be an understatement.
#cuphalffull #itsthelittlethings #DifferentHeroes ❤
We have been working full steam building hands for kids and also working hard to partner with organizations to raise money for scholarships! With that being said, we have a some huge announcements!
My son, Cam, and I have been pumping out several hands and have even jumped into making and building the 3D printed arms now!
We are huge fans of the work the Team Unlimited guys are doing way out in the UK!
Thanks to their generosity in sharing these files open source (meaning anyone can download and print the files), we have access to this arm design to now be able to give children who are missing a full hand AND wrist the confidence boosting helper arm ... free of charge!
Cam and I are now working on our second, third, and fourth arms for kids in and outside of the USA.
Plus, we have many hands still going out as well!
You can see more of our work on the Different Heroes Facebook Page:)
We have teamed up with Purses with a Purpose, Microsoft Corporation, and Nubability! If you haven't heard of these great businesses, please take some time to visit their websites. They are doing great things for our communities!
We aren't done yet...
Purses with a purpose is holding a fundraising event THIS SATURDAY, OCT 7th, from 7-11AM in Charlotte NC! Please see flyer for details. Proceeds from this event are going to help fund our initiatives to continue to make and provide 3D printed assistive devices to children absolutely free charge.
Checkout their Facebook page or more details and please, spread the word with friends and family if you feel inclined to help.
Cameron and I will have a booth set up to meet and great, fist bump and thank you in person for coming out to show your support...We hope to see you there!
Check back for more announcements regarding Microsoft, camp scholarships, an upcoming contest, and more!
When my son Cam was born with Amniotic Band Syndrome (ABS), I struggled a lot with things like what caused this condition, why this happened to him, how we would get through this, could we handle it, what did I do wrong, if he would grow up hating me, and a whole flood of other emotions.
I learned pretty quickly that I needed to find a way to channel all of the things I had/have no control over into something I did/do have control over. That's where Cam's facebook page came in. It helped ME to help others going through these emotions. It helped me knowing that by spreading awareness I was giving another parent hope and even possibly saving their baby's life.
Fast forward a little...
Chris Craft and I met through a Facebook friend of ours. Someone who I truly admire as a mother, artist and founder of one of mine, Cam's and Chris' favorite nonprofits called E-Nable, Mrs Jen Owen. At the time Chris was a STEM teacher at a South Carolina middle aged school and founder of an initiative called Hand Challenge. Thanks to a couple sweet girls (the M&M girls as Cam still lovingly calls them!) from his classroom, Cam got his first 3D printed E-nable hand!
Chris was working to make a difference rallying classrooms around the world to build hands for others in need and I was working to raise awareness about Amniotic Band Syndrome. I too wanted to make hands and who better to teach me the ways than the guy who helped Cam get his first hand, right?! I really enjoyed learning and was surprised at how much Cam loved it as well! Cam quickly caught on and with only a few months worth of practice, being only four years old, and despite his limb differences, was culling, scaling, printing and building 3D printed
hands for himself and then other kids with hand differences similar to his own.
While learning how to make the hands, I also learned that Chris' mom has a limb difference due to Amniotic Band Syndrome. Chris and I both had/have been impacted by having someone very close to us have this sporadic condition. We learned that we worked well as a team and both wanted to raise more awareness. We teamed up to create a website to educate the world about Amniotic Band Syndrome. The goal of the ABSAA is to raise awareness about ABS, celebrate those impacted by ABS, and to empower those dealing with ABS by providing help and hope. We worked like crazy. Somewhere in the process, we realized we also wanted to celebrate the people helping to make a difference in the lives of those with limb differences.
Ive always been told/read/overheard things like "you should always leave this world better than you found it", "do what makes you happy", "never be held back by your fear of failure" and all of these things really stood out in my mind while working through all of the trials, errors, fears, long hours, research, etc to make this happen.
We wanted to make something much bigger than either of us... and here we are now launching Different Heroes, a new and exciting non profit dedicated to raising awareness about Amniotic Band Syndrome but just as importantly, dedicated to celebrating limb differences and those making a difference in the life of someone different. We want to help. We want to educate. We want to praise those doing GOOD things for these kids and families.
So, maybe things would have played out similarly anyway had Cam never been born with ABS? Maybe. But, I honestly do believe that this was in every way meant to be.
Did you hear??!
It's officially LAUNCH Day!!! ...What are we launching you may ask?
The Different Heroes Team has been behind the scenes for several months working from the ground up on the foundation of this new and exciting nonprofit. From day one we decided it would be best to keep it "hush hush" so that the surprise, once we launched, would be that much more exciting! As a very outgoing and talkative person, let me just say that keeping my lips sealed about all that we have been doing has been extremely difficult to say the very least. (Seriously, you just have to know me to know how hard this really was!) But today that all changes because... we finally get to share all of our excitement with YOU, our readers!
Speaking on behalf of Chris and I both, I can say without a doubt that this whole experience has been nothing less than heartwarming thus far. And its only beginning.
-Explore this site. Don't forget to grab a t-shirt from our store!
-Visit often as we will post lots of new stuff that you will not want to miss.
-Post comments as you wish. Remember to keep them appropriate and clean for all ages!
-E-mail us with any feedback you may have. Good or bad, we want to hear it!
-Subscribe to our mailing list for updates, future events, new products, etc.
-Follow us on Facebook for more photos, videos and behind the scenes fun.
-Share with friends, family and anyone you think would love to learn about/support Different Heroes.
Thanks so much for stopping by! We hope YOU have a SUPER day (see what I did there?) and that you will be back soon.
Until next time,
Sarah and Chris, founders of DH (Different Heroes)