It’s the experiences in life that truly identifies what is beneath the surface. Some of these experiences have made me stronger. Just when I think I am not capable to handle the next circumstance, I am somehow led through it to the other side. That’s when I discover capabilities that I never imagined I had. For the most part I have found that the harder I am thrown on my backside, the harder I bounce back up.
I am the mother of a pediatric stroke survivor. In 2009, she came into this world via emergency c-section and immediately endured multiple seizures and asphyxiations per hour. The doctors immediately placed her in the Neo-natal Intensive Care Unit (NICU) to save her life. When my daughter was born she was attached to more tubes and monitoring wires than I could count. A short time later, the doctors sat at the end of my hospital bed to advise my husband and I about the extent of her brain trauma. As they provided us with dire options, one of which was to take her off life support, we immediately told them “hell no.” The news had hit me like a brick and I felt my brain shatter like glass. I was officially in the numb stage of grief.
If you are reading this and you are new to the special needs world, your backside may still feel a bit bruised—okay, a lot bruised. Trust me when I say that it will get easier. It will get easier not because the diagnosis will miraculously disappear but because a new outlook will appear. The visions you had for the future have been taken away and grief is not limited to saying good-bye to a person. Grief can also include saying good-bye to the dreams you had before the crush of a setback. However, let me vouch for the fact that there always will be new options. You must give yourself permission to create new dreams that are based on personal growth and not the worldly standards.
If the news is regarding yourself or a loved one, it is now a race of a different method and track. There are new goals at the end of that daily finish line. For me, as I went through the ebbs and flows of grief, I was intensely steadfast to not give up on my child. I was not striving to deny what had happened but striving for her to simply survive. That was the first step up my mountain. I was just putting one foot in front of the other. However, don’t picture me as a woman who is all that courageous. Don’t assume I am a role model of toughness, because there are still times that I am quite the opposite. If there is already a comparison chart in your head, erase it right now. No one is without the frustrations and despair that periodically need to get flushed out with some tears (or a sturdy punching bag at the gym). The point is to allow oneself that moment and then immediately get back into the circle of solutions. Stay with the flock that will help you stay in the healing journey and not in the downtrodden clouds.
No one knows exactly what their future has in store. That sharp turn can be very bumpy as we have moments where we think we see the light at the end of a tunnel, only to allow fears consume us. Fears for someone we love very deeply can be even more intense. Each bump is a new chapter. Remember that perfection is the enemy and your story, or your loved one’s story, is not done being written. You have been introduced to a new world, a new community of people that will be a cushion for when you feel pushed beyond your limits. You will bounce back and face the new day with more wisdom than what you had yesterday. I promise.
Stefanie Boggs-Johnson is the author of I See You, Little Naomi and soon to be released I See You, Little Andrew, published by ALIVE Book Publishing. Her educational children’s books promote special needs awareness and compassion. She is also a licensed cosmetologist and the owner of For Every Season, a mobile beauty service for the special needs community.
For more information, you may visit her website ForEverySeasonServices.com or her Facebook page @ItTakesASpecialVillage.