Evana Sandusky shares about 10 years of motherhood
[1]Evana is mother to a child with Down syndrome [2], AV canal defect, Wolff- Parkinson White syndrome, sleep apnea, and asthma. She is also a pediatric, speech-language pathologist and has agreed to share some of her feelings with us. Learn what she has to say…
In a few weeks, 10 candles will be placed on a birthday cake. A little girl wearing glasses will smile as her adoring family sings the birthday song to her. She will likely need more than one breath to extinguish the candles and will laugh in delight when they are out. Her little brother will be right beside her telling her she’s done a good job. Then, she will grab a plate to be the first one in line to eat her favorite dessert.
And I will stand near her taking in the scene celebrating my own milestone. Ten years. Has it been that long?
It’s hard to remember my life before Jaycee and Elijah were born. Before toys were scattered all over the house and before I knew so many Barney lyrics, I was a young, twenty-something wife dreaming about having a family. I didn’t know what life had in store for me, but I was sure I was ready for the challenge of motherhood.
I had the standard difficulties of motherhood from the beginning. Breastfeeding is easy and natural I was told.Not for me. I ended up using formula for both my children. It brought so much guilt at the time, but at this stage in my motherhood journey I realize it didn’t matter.
Potty training [3], now that was a challenge! I am so glad I’m through with that stage of motherhood. I read books and articles and sought wisdom from others, but it was a long process. After some trial-and-error, I thankfully stumbled upon two very different techniques that helped my children learn what to do.
[4]I also endured the challenging state of Elijah’s obsession with Thomas the Train. I stalked the Thomas website to see when the train was coming to a town near me. I filled my DVR with episodes to make Elijah happy. I had to learn the names of so many trains only for poor Thomas and his friends to vacate our premises a few years later.
[5]Elijah, Jaycee and I from Jaycee’s Make-A- Wish Trip at Disney from 2015
The first day of pre-school and the first day of kindergarten for my children presented a bittersweet challenge. It was a marker that my children were growing up. My role as a mother was changing as their life was too. My days off work would no longer be spent taking them shopping or watching them play. I would be alone. The thing I had wished for -more time for myself- was now here, and I really didn’t want it after all.
[6]Jaycee with her cat Anna
Beyond the traditional challenges, motherhood has shown me a world that I didn’t want to know existed. It is the part of being a mother that is scary, sad, unjust, and torture. It’s a world revolved around doctor’s appointments, medicines, medical equipment, emergency rooms, surgeries, and illness. Jaycee has a variety of diagnoses that require daily medications and interventions to control and treat. As much as I have tried and prayed, there are things that even a mother cannot fix.
Every time I have been in a hospital waiting room, I have been challenged to think positively. Sometimes, this involves pacing the floor while saying silent prayers and glancing at the clock every 15 minutes. Other times, I lean on my husband’s arm looking for assurance when I ask him, “Do you think this procedure is taking too long?”
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I have been challenged to look at my daughter’s body in ways a mother never should. I have reluctantly given post-surgical care on 
[8]her chest that was twice opened to mend a heart defect. I have seen central line wires protrude from her neck as she lay in the intensive care unit. I have gingerly kissed a cheek that was barely visible due to tape holding a ventilator tube in place. I have seen her body bruised from a string of unsuccessful blood draws that made me wish things could just be different for her. When I see her body on the brink of a disaster, I am reminded that each day is a gift as I whisper in her ear, “Keep fighting Jaycee.”
Soon, I will take my place near the smiling birthday girl celebrating her 10 years of life. I will kiss her face, hold her hand, and take way too many pictures since that’s what moms do. I will be grateful that I have had a chance to be her mother through all the happy, easy times and the more challenging ones.
[9] [9]Family Snapshot:. I have been married for almost 13 years. Jaycee and her little brother, Elijah, complete our family. Jaycee has had a lot of challenges over the years with her health, some related to Down syndrome and many issues unrelated. It’s a joy to be a mom to both kids!
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Evana thank you so much for taking the time to share with us and for letting us get to know a little about you and your family.
[11]Jaycee and Me
Images Courtesy Evana Sandusky
Read More: Real Moms Share [12]
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- What is Down syndrome [2]
- What is an Intellectual Disability? [13]
- Dad’s Emotional Video Defending Down Syndrome [14]
- Early Intervention: First Steps in the Right Direction [15]
- I Do Not like Being a Special Needs Parent and That’s OK [16]
- Coping with the Life You Never Imagined [17]
- Handling Your Child’s Diagnosis: Six Things Parents Should Do For Themselves [18]
- A Complete Guide on Positive Behavior Support for Children With Special Needs [19]
- Family Chat: Improving Lives with Positive Behavior Support (PBS) [20]
- 8 Ways to be a Great Advocate For Your Family Member With Special Needs [21]
- How to Get Free From Unrealistic Expectations of Motherhood [22]
- Father’s Perspective: Raising a Child with Special Needs [23]
- Daddy Loves You: A Reminder for Daddies of Children with Special Needs [24]
- Being United, Pampering, and Taking Care of Ourselves [25]
- Avoiding the Power Struggles with Your Child [26]
This post originally appeared on our January/February 2016 Magazine [27]