Nisha Morris Shares About “empowering her child”
PSN: Please share about one thing you’ve learned that has made a big difference in your life and that you would like to share with other parents?
NM: Since Nathasha started school last September, she’s missed a total of 4 weeks, including school parties and festivities. Every June, for the past 2 years, she gets so sick that we aren’t able to manage her care at home and end up in the hospital. There has been countless cancellation to family parties, getaways, missed birthdays and play dates. So, the biggest lesson I’ve learned and can share with others is to “just go with the flow.” Embrace the difficult times. Accept it. Get through it and try again. Make new rules and celebrate new traditions. Who said Santa only delivers presents on December 25?
PSN: Please share any lessons/tips you’ve learned from being a mother to Nathasha?
NM: The greatest lesson Nathasha has taught us is to listen to her needs. In her own way, she has expressed to us when she is not feeling well, and “needs to be on the vent”, when she decides “I’m ready to go underwater with my trach,” or “I need an irrigation because my tummy hurts”. By listening to her needs, we empower her, even at age 4 to make decisions for herself, making her more independent and ultimately, responsible for her own care.
PSN: Do you have a proud moment you would like to share about?
NM: We have so many proud moments… like when she first walked at 12 months, ate by mouth at 16 months, read her first book at 3.5 years old… But my favorite proud moment was when we were waiting in line at the store, a lady turned to her friend and said “look at that girl; she has a leash on her neck.” Before I could correct her, Nathasha said “no, it’s my trach. It helps me to breathe.” The lady then looked at me and said “I am so sorry” and before I could accept her apology, Nathasha said (with her finger pointed directly at her) “I forgive you, don’t do it again, OK?”
Nathasha was not hateful or shamed. Instead, she was confident and able to handle it herself. Such a PROUD moment for me.
PSN: Are there any special resources you have found that have helped you on your journey? (local or web)
NM: Since CCHS is such a rare condition (approximately 500 in the entire world), primarily, I rely on cchsnetwork.org for my information. This is a great resource enabling CCHS families to come together and share stories and offer advice – securely. I also have a mentor –Jan Harrison. Jan has a twenty-four year old son who has CCHS. She has been through it all, and is my sounding board and “go-to” person for additional help and insight. Finally, our doctors are always a great resource –sharing the latest reports and learning’s about CCHS and guiding us through the decision making process.
PSN: In conclusion, is there anything else that you would like to share with our reader’s that was not covered in this list of questions?
NM: Every night I whisper in Nathasha’s ear, “You can be anything you want to be in this world, because you are so smart, beautiful, wonderful, funny and so very loved, by so many. No matter what happens or what people say – believe in yourself and in God and anything can be yours.”
PSN: Nisha, Thank you so much for sharing with us about your the lessons you’ve learned raising Nathasha.
Photos Courtesy Nisha Morris