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Caring for a Child with Special Health Care Needs: Meet Mariano

Amy Long Carrera, MS, RD, CNSC, CWCMS
Registered Dietitian Nutritionist
01/13/16  11:51 AM PST

A parent caregiver of a young child works tirelessly to give that child a meaningful and rich life. Often, the strength to keep going is found in the bond between mother and son. AnaLisha R finds her inner hero in her son, Mariano.

I am a caregiver for my child Mariano. He is only 16 months old and has a rare genetic syndrome that is called MECP2 Variance. Due to the type of genetic mutation he has, there is not much history of it to learn from or to help provide a better life. It is a one of a kind. Not only as a care giver but as a mother, I want to provide the best life possible for my son. The technological advances currently available help my son to be able to feed and survive. He has a G-tube due to his condition. He is able to get the nutrition he needs to grow. He is not only thriving through the ability of feeding but also in the aspect of oral motor skills and physical therapy. He is not just present before me but he is living. Living a happy life that maybe someday he will look back on and see how much strength he had at such a young age.

I see my strength and thirst for life in my son. I too have my own medical conditions that prevent me from working a full time job. Being a disabled veteran, the idea to put my health first is not something I have been taught to do. I know to help others first. As soon as my son was stable I was able to get the help I needed. He taught me to be strong. He taught me that I need to be healthy too. Otherwise, who would take care of him to give him the best that life can offer. Although he may need daily assistance, I have learned so much through being his care giver. The greatest feeling is that we are both continuing our journey to live and not just be alive.

There is a huge difference between living and being alive. Being alive means you wake up, continue the routine of work, school or a routine of daily activities. Truly living is making memories, laughing, crying, hurting, overcoming all that life throws at you and smiling in the face of adversity.  My son does that. He is an overcomer and HE LIVES. There are many people who take life for granted and many that may see my son or myself and think that’s not a life worth living. Well it is. Every life is worth living. It is how you choose to live it. To take a young infant like my son and see him fight and yearn for life is something of a miracle.

I am not going to lie; it is very difficult to see your child suffer. It is when he has overcome his adversities that make it all worth it, that make this life we live an amazing one.

He is a miracle and I was so blessed to have him in my life. My husband and I were chosen to be his parents, what more can we ask for? This is a beautiful life! He makes being a caregiver feel like being a super hero, when he alone is my super hero.


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