Nisha Morris contributed to this issue’s “Real Moms Share” section of the magazine. We asked her to give us an insight into herself, as well as into her life raising her daughter, Nathasha, who has (CCHS) Congenital Central Hypoventilation Syndrome. We asked her a series of
[1] questions; some serious and some “just for fun”. See what she said….
PARENTING SPECIAL NEEDS: Tell us a little bit about yourself and family.
NISHA MORRIS: The Morris family consists of Randy, Nisha, Nicoletta and Nathasha. We live in beautiful Orange County, CA. Randy is self-employed as a computer programmer for Thermal Web Creations, LLC and Nisha is a public relations professional for a computer software company. Our family is very close – with love, respect, and faith at the core and our children as the focus of our household.
PSN: Tell us a little bit more about Nathasha’s diagnosis and personality.
NM: On October 6, 2008, my husband and I welcomed a beautiful (6.8 lbs, 19 inches) baby girl named Nathasha Saroj Morris. Immediately, we discovered that she had Congenital Central Hypoventilation Syndrome (CCHS), a very rare genetic condition whereby the brain does not send the necessary signal to initiate breathing only while sleeping. So, every night, at bedtime, Nathasha is placed on a life support machine which stimulates artificial breathing (ventilator). This machine, along with several other medical-monitoring pieces of equipment, keeps her alive. The 
[2]moment she awakes, she is removed from the ventilator and is able to breathe on her own… again.
PSN: What has therapy (Early intervention, pre-school or school) been like for Nathasha?
NM: Since Nathasha was limited to the home, and with monitored interaction for the first few years of her life, we found that the lack of peer interaction adversely affected her social skills. Last fall, we enrolled her in preschool and she’s just blossomed! She is much more social, talkative, interactive and is making many friends. We are active participants at her school – we partner and educate parents, teachers and officials at her school. The more they know about Nathasha, her condition and restrictions, the more successful she will be.
PSN: What have been some of your biggest obstacles/challenges raising Nathasha?
NM: The biggest challenge has been to manage several insurance agencies (government and private) to ensure that Nathasha has the very best care possible. There is so much paperwork involved– and it’s a never ending cycle. I have to constantly fight for my daughter’s rights to keep her benefits, justify her need for equipment, and make sure these agencies realize that my daughter is a person – not a number.
PSN: What do you wish people understood about Nathasha and special needs?
NM: I wish people would understand that everyone has limitations. Some are hidden well, while others are more apparent. Regardless of our limitations, we should respect and be kind to one another. It’s just that simple.
PSN: What advice would you give to new parents of children with Congenital Central Hypoventilation Syndrome (CCHS)?
NM: The best advice I can give other special needs parents is to educate others about your child – with LOVE. Sometimes, people will say things that are offensive – whether on purpose, out of pure ignorance or because they just don’t know how else to express themselves. It’s important to always respond with love. It’s an opportunity to educate, explain and enlighten others about your child, their struggles and their victories. I know Nathasha is listening to me as I explain to others about her condition – and I’m hoping that she will be kind, confident and loving when it comes time to explain her condition, herself.
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?
Related: The Birthday Gift [3]
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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 [5] 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.
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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.”
When times get tough, and you feel like things are falling apart around you – say the same thing – but this time -to yourself. Believe me. It works.
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PSN: Nisha, Thank you so much for sharing with us about your the lessons you’ve learned raising Nathasha.
Photos Courtesy Nisha Morris
Helpful Articles
- Empowering Ability [8]
- Early Intervention: First Steps in the Right Direction [9]
- Handling Your Child’s Diagnosis: Six Things Parents Should Do For Themselves [10]
- A Complete Guide on Positive Behavior Support for Children With Special Needs [11]
- 8 Ways to be a Great Advocate For Your Family Member With Special Needs [12]
- How to Get Free From Unrealistic Expectations of Motherhood [13]
- Father’s Perspective: Raising a Child with Special Needs [14]
- I Do Not like Being a Special Needs Parent and That’s OK [15]
- Being United, Pampering, and Taking Care of Ourselves [16]
- Coping with the Life You Never Imagined [17]
- Developing Your Own Network [18]
This post originally appeared on our January/February 2013 Magazine [19]