A Miracle in her Living Room
I have always believed that moms are specially handpicked by God, to help their children live the lives they are destined for. But some moms are given extra special assignments. Amazing mom Evelyn Mann, is one of those moms and has spent the last 12 years, rising to the challenge. Evelyn is a wife, writer and special needs mother. Her son has survived a lethal form of dwarfism and is a living miracle.
Born in Tampa, her little boy was not expected to live past birth but God had other plans. And though Evelyn encountered many storms, her faith helped her to overcome unthinkable circumstances.
Her son has been featured on the Catholic News Network, the Christian Television Network and on radio and local news. Soon, her story will go nationwide and internationally when her son will be featured on a major cable network later this year.
With over 2 million hits on her blog and over 2 million views of her son’s interview on Special Books by Special Kids, her story is beyond inspirational! I’m honored to feature her on ispeakmom.com.
On her motherhood journey:
Miracle In My Living Room: The Story Of A Little Mann tells the true story of my son overcoming all odds to become a miracle. Born with a lethal form of dwarfism called Thanatophoric Dwarfism, my husband and I were given little hope for his survival. This is when my motherhood journey began. I am the mother of a miracle which comes with extreme joys and heart stopping moments of fear. In my memoir, I share many of these ups and downs showing how we ultimately received a miracle. The continuation of our journey is found in the words of my blog found at www.miraclemann.com/blog. I pour my momma heart out to give others a peek into the life of my little man. And to share how we are all mothers on a similar journey of raising our precious ones. You can see pictures of my sweet boy on the Facebook page found at www.facebook.com/amiraclemann. You'll find Samuel's Smiles Campaign pictures there sure to make you smile.
After my son was born, I tried to explain the experience of being a mother to a single friend. I told her it was like having a part of you living outside your body. Wiping his nose was no big deal because it was like wiping my own. Having him slobber all over my shoulder didn't gross me out, I just washed my shirt. In caring for my son, I found I was caring for myself.
As I continue raising my miracle, I still have this attitude in mind. Many tell me they could never handle being a special needs mother, but many mothers do. What makes this life manageable is love, perseverance, and faith. I love my son. He is part of me shining brightly in this world. His smile melts hearts in seconds. His joy is contagious. His innocence is precious. I often say, "He is easy to love."
In raising a forever child, I persevere by daily doing what needs to get done (as do many mothers), one foot in front of the other. From changing his diaper to making sure his trach is properly in place, my days are full. At night, I attach a probe to his toe which monitors heart rate and oxygen levels. If either goes too low an alarm sounds and I switch into medical mommy mode. Will he need to be suctioned, get a saline treatment or medication? Or does he just need me to stroke his forehead until he falls asleep again? These are the tools in my mommy tool kit.
Through it all, faith and prayers keep me going. Faith to know God is with me. And lots of prayer. From colds which cause uncommon havoc in a special needs child to allergies or even a runny nose. In the midst of all these trials, I bathe my son in prayer.
On her greatest motherhood challenge so far:
In the beginning, entering the medical world of the NICU/PICU was overwhelming. The learning curve was great. Everyone told me I needed to advocate for my little one, but I didn’t know how. The medical jargon sounded like another language to me. As time went by, I learned what my son needed and was able to be his voice. It didn’t help that my son’s condition was extremely rare with a very low expectation of survival. But God had other plans for my son, and he survived. I did too.
On her most difficult parenting decision:
When we were told my son would need a tracheostomy, we didn’t hesitate. We wanted our son to survive so having surgery, even though I was very concerned, was the right decision. It was the first step in bringing him home from the hospital. We didn’t know what life would be like with my son breathing on a ventilator, but we knew we wanted him home. The first miracle was my son, against all odds, surviving his diagnosis. But the second miracle was when he came off of the ventilator at age 9.
On her greatest mommy moment:
Hearing my son say “Mama” for the first time. When he said it, I heard, “I love you.” I know he loves me, but when I never heard the words, I wondered. He still does not say it often, so I have learned Samuel shows his love through his brilliant smile and the sparkle in his eyes when he sees me. When he reaches up his sweet little hand for a kiss. He expresses his love through these actions. And that makes this momma heart melt every time.
On advice for new moms
My advice to new moms is to trust your instinct. It might take time to develop but when it does, trust it. Many doctors and nurses tell us we know our son better than anyone. They ask us if something is normal for Samuel. Since his condition is so rare, they rely on us to know if something is off.
Also, I would suggest giving yourself grace as you raise your little one. Knowing there is value in doing laundry, cleaning the dishes, wiping runny noses, and changing diapers. At the end of the day, you can think, “I didn’t get anything done.” But you did. Your child is sweetly sleeping in bed. That is an accomplishment.
October is National Dwarfism Awareness Month
Samuel is now 12 years old.
He is 25 inches tall, 25 pounds.
Thanatophoric Dwarfism (TD) is a random genetic mutation and not hereditary.
There are twelve survivors worldwide.
TD occurs in 1 to 20,000 to 50,000 births.
Miracle In My Living Room: The Story Of A Little Mann is available on Amazon and Barnes & Nobles. For signed, color copies, go to www.miraclemann.com/book-store.
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