We are honored to have Evelyn Mann from Miracle Mann guest post. She is a wonderful mother to a special needs child. There truly is a Million Ways to Mother in this life. She and her son have me in awe and want to keep reading what a journey she is on. To continue reading about her way to mother head to her blog at www.miraclemann.com/blog.
I was on the phone with customer service and the agent could hear my son jabbering away in the background. We started talking about things children do like playing with pots and pans. She laughed aloud remembering her children doing the same thing when they were young.
Though, my son should be past the pot and pan symphony of clangs and bangs, he is not. He is, in fact, a very unique little boy. Born with a rare form of dwarfism called Thanatophoric Dwarfism, he was not expected to live past birth. Could the doctors have known my son would flash me many brilliant smiles in his ten years?
In 2005, not only did I become a mother, but I entered the world of being a special needs mother. This adventure comes with its own unique challenges. I did not get to take my precious bundle home after he was born. Instead, I visited him daily in the hospital for six months. Then came 24-hour at home nursing providing assistance to our medically fragile child.
For years, we never left town fearful of what may happen on the road. Not to mention being overwhelmed by all the medical equipment we’d need to bring. An all-expenses paid trip to Orlando provided by the Make-A-Wish foundation, turned my knee knocking fear of travelling into an “I can do this” attitude. We have made many trips since.
As I journey this special needs road, I see my sisters in motherhood peering in. Often, another mom will tell me she can’t imagine what it is like for me raising my son. Other times, no words are exchanged. Just a quick look. How can I connect with these moms?
Two words provide the answer. Common ground. My son recently discovered where the pots are in my kitchen. I heard the clang of aluminum connecting with the travertine tiles and came running. There was my son, laying on the floor banging away. He saw me and offered me a huge grin. I laughed.
This scene is one almost all moms can relate to. And this is where we connect.
Here are a few more:
- We all have diaper rash stories and remedies to pass on to other young mothers. I have more experience as we are still in diapers. Did I mention my son is 10 years old?
- We all lament the need for a good babysitter for a much needed mommy break. My babysitter happens to be a ventilator certified nurse. But, as will all moms, I am grateful for the down time.
- We all have the experience of our children being complete angels for family and friends, but the moment we are alone, the halo comes off. Or, am I the only one?
- We all want our children to perform well in school. My son’s milestones are much more delayed but I rejoice in the tiniest of successes.
- We all want our children to be healthy. And though my tool kit has more tools, like albuterol/saline treatments, suction equipment and a silent ventilator ready to go if need be, we still call the pediatrician in cases of need.
These threads of similarities connect us offering an opportunity to bridge the gap between non-special needs and special needs. The next time you see a special needs mom, use these points of common ground to relate to her. Hopefully, it will help her to feel less isolated from her motherhood sisters. And perhaps bring you lifelong friendships which foster openness and understanding.
Evelyn Mann is a stay at home mom who lives in Tampa, Florida raising her special needs son. Her son was born with a rare form of dwarfism called Thanatophoric Dwarfism and is only one of a handful of survivors. She is currently writing a memoir called A Miracle In My Living Room: Overcoming A Not Compatible With Life Diagnosis. Her blog is found at www.miraclemann.com/blog. She receives inquiries from around the world asking about her son’s miraculous survival.
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