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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.  Here you can see my son's Right and Left Hands, both affected by Amniotic Banding which caused fusion of parts of the finger bones, webbing of the skin, indentations on one wrist and fingers, and amputations, which all happened BEFORE his birth.  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.  When I took this photo I remember thinking long and hard about whether or not I should share it on social media... I don't even think twice about things like that now. I share every chance I get! 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.  His little hand prints forever changed my heart in the very best way possible. 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!
1/12/2018
microsoft is making a difference...
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.  Two Microsoft employees each working on a build kit. All smiles as they push to the finish. 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!
 Microsoft volunteers concentrating hard to each complete their hand.
 Microsoft employees pose mid build for a progress photo.  Matt Hendrix and colleagues cut up with each other as they compare notes, each revealing their struggles and successes. 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! |
AuthorsSarah Haight and Dawn Civitello Archives
April 2023
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