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!