Caregivers Community

What I Learned From My Daughter: A Dedicated Mom of a Child with Special Needs Shares Her Story

Brooke Phillips, CWCMS
Editor | Shield HealthCare
08/19/13  7:23 PM PST

Caregiver Story Spotlight | Shield HealthCare “What Makes Caregiving Rewarding?” Story Contest

Story by Marianne S., 2009 Contest Runner-up

“My daughter, now 3 years old, is the most beautiful, inspiring gift I’ve ever received. Born into a family with various mental health issues, Bi-Polar, Autism Spectrum, and Schizophrenia disorders are few of the many daily concerns our family faces. After a long, labor-induced delivery, there I was at 41 years old holding my newborn baby girl. I laughed and cried at the sight of her with an overflow of emotion; she is beautiful and perfect as can be, I thought. She spent her first week of life in the hospital for observation of possible pulmonary bleeding, and was treated for an unknown infection and jaundice. After that first, scary week of life, she was sent home with a clean bill of health. She cried and screamed all the time as if she were being tortured, ate very little, and hardly slept for about a year and a half. I was exhausted and frustrated since she always checked out “healthy” at her doctor’s check-ups. All I wanted to do was to love and nurture her cries. I had no prior experience with infants and did what I thought was my job as her mother. My days and nights blended together as if it was always the same day. I pushed my friends and family away, gave up my job and our home to a one room apartment to be there for her the only way I knew how by giving her my unconditional love and time. She now attends Special Education pre-school 5 days per week, receives disability benefits, attends feeding therapy, and eats a gluten/casein free diet after spending the last year working with 7 different therapists and a nutritionist trying to discover the causes of her behaviors. She suffers from extreme sensory sensitivities and has behaviors that place her on the Autism Spectrum that cause her great difficulty with speech, coordination, concentration and eating, to name a few.”

“What I have learned from my daughter is that the most important things to any person, big or small, are dignity and respect. She has taught me much patience, the true meaning of unconditional love, and how important family and friends are through the sleepless nights and the horror-filled cries, to the ever-frustrating continual tantrums throughout our days. We’ve learned to organize our lives in order to help her cope with her difficulties through much sacrifice and by trial and error. I am grateful every day I wake up to have her there beside me and to hold her in my arms and smile at her knowing she feels safe. She inspires me to be a better person by appreciating the simple things like walks in the park and following her lead. She has shown me the beauty of the grass and trees, and puddles after the rain. Every time I look at her whether she is smiling or crying, I am thankful for the sacrifices that are made in order to help her cope. It humbles me to see her blossoming in her talents. She is an amazing singer, dances and plays the piano, and has lots of fun with her toys. She has quite a sense of humor, despite her difficulties, and is finding helpful strategies through the many positive influences we’ve learned from and created, to get through our day. She IS the most BEAUTIFUL gift in my life. I have no regrets and would regret if I hadn’t been there to help her realize her true potential despite her challenges. Thank you for this opportunity to tell our story and hope it will inspire others, as well.”

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