In this post, guest blogger Dianne Chand shares reflections of her experience as a grandparent to Marlie, who has complex medical needs including epilepsy, and how it has impacted her daughter, Amy, and son-in-law, Richard.

1/8/18 was the day I became “Nana” for the first time to my 4-year-old granddaughter, Marlie.  She stole my heart from the first time I met her,  and she has been a tremendous joy ever since.  I love when Marlie giggles and squeals when she is tickled or how she runs toward me at full speed and wants me to pick her up.  We have a great time playing chase, going for stroller rides, playing in water, or listening to 80’s and 90’s music. I thoroughly enjoy when I get a Facetime  call with Marlie.  Sometimes during these calls my screen goes dark because Marlie has either placed her face too close to the camera or she is coming in to give me a kiss.

Marlie is my one and only grandchild and I am so proud of how far she has come in her development considering the initial prognosis.  She has worked so hard in her therapy sessions to be able to walk and eventually run despite all of the challenges that present with the seizure disorder.  I admire Marlie’s determination and will (maybe her German ancestry?), and I witness how these traits have been crucial for her development.

Sometimes it is tough as a mom to see my daughter, Amy, get emotional.  These moments typically occur when Amy is in the presence of children who are Marlie’s age or younger and Amy sees how these kids are talking or reading and doing so many things Marlie isn’t doing.  It is natural to compare your child to others.

I have so much respect for any parent of a child with special needs, and I have met many parents when I worked as a case manager for the Dept. of Mental Health.  The respect and love I have for Amy and my son-in-law, Richard, is deep, and I am in awe of them as partners and parents.  They each contribute to the raising and care of Marlie by sharing the duties.  They also delight in getting snuggles and “wallowed” on by Marlie.  I have seen what it takes to be Marlie’s parent, oftentimes losing sleep because she isn’t feeling well or isn’t sleeping enough. It can be a constant guessing game with Marlie being nonverbal and unable to tell her mom or dad what’s wrong or what it is she wants.  They have a great attitude and the tenacity it takes to be a parent of a child with special needs.  They are keenly aware of when they need a night out, a mini vacation or time with their friends.  Marlie is so fortunate to have such “solid” parents that love her unconditionally and beyond measure.