Dealing with Grief 

Grief Comes in Waves

“My daughter Grace was diagnosed at about 4 months old with a rare form of Epilepsy called Infantile Spasms, and she was later diagnosed with Lennox-Gastaut Syndrome. So even though epilepsy hasn’t been our reality for her full 17 years, it’s been the vast majority. You’d think I’d be used to it by now – but it still catches me off guard.  The grief I experience because of her diagnoses still causes me to catch my breath and brings tears to my eyes with absolutely no warning.

Recently, my husband Kevin was delayed in bringing Grace’s wheelchair home from being repaired. It was getting late, and I needed to pick up my son and our dog from their various activities.  I wrestled Grace into her tennis shoes and coat – she was not happy about going back out into the cold.  I walked her to the van, lifted her in, got her buckled, and headed off.  Inside, part of me was screaming… “She’s 17! I should be able to leave her home alone – heck, she should be driving to go and pick up her brother.  Why is this our reality?”

And yet…Grace’s 17 isn’t so terrible.  She’s a constant in a world that feels hectic.  She still loves to snuggle, hasn’t outgrown Disney princesses, is happy to play with her toys, and loves what she loves – lights, sparkles, dance, music.  For the most part, she goes where we ask without complaint.  It’s not bad, just different.  She’ll never grow up, and although we talk with her about hard things and try to expose her to ideas and opportunities, it’s impossible to know how much she understands and how much she just tolerates our efforts.  Yet there is, at times, wisdom and caring in her eyes that’s difficult to put words to.  I can see her take the world in at those moments, and I don’t want to look away.

Over time, I’ve seen how grief comes in waves. Big milestones and “rights of passage” that just aren’t the same for Grace often bring up grief for me – things like starting high school, or turning 16 but not being able to drive. It doesn’t even have to be a big milestone – sometimes it’s just seeing a mom with her daughter laughing at something together or seeing pictures of kids her age dressed up for a school dance Grace can’t go to. These big and small moments of grief never fully go away, but I’ve learned to kind of go with the waves.

For people who have put in many hours of work on themselves alone or in therapy to process the unexpected journey they’ve been put on, being surprised by grief can be extremely frustrating.

It’s okay that grief hits you even after you thought you have moved past it. It’s easy to feel like: “I thought I was healing from this, yet here I am grieving again.” I want other families to know that this cycle of grief is normal.  Most importantly, this doesn’t mean you have failed at your healing or accepting. Know that it’s normal – have someone remind you if you forget – and work through it as it comes. It won’t last forever.”

At ChildServe our mission is to help children live a great life – which looks different for every child. A great life encompasses the full spectrum of life and emotion. Grief, joy, love, challenges, rest, work, delight, crying, laughing, and everything in between. As an organization, we want to help families move forward, one step at a time, and we know that a great life cannot be built any faster by glossing over hard things.

If today is a hard day, we invite you to read these encouraging words from more of our Family Advisory Council members.

“If I could go back and give myself advice on the day I learned my child had special needs, I would tell myself…”

• “This will be your biggest challenge, but also your biggest reward.” – Brandi Wright
• “Take it in, absorb, ask for sources who can help that are local to where you live and then do everything you can to get your child the resources they need. It will make you and your family so much more appreciative and supportive of those with challenges. You are not alone, and the sun will come out tomorrow.” – Becky Banzaf
• “There will be SO much joy! Aedyn wouldn’t be Aedyn without Emanuel Syndrome. We can’t imagine life without him and the many moments of joy he brings! – Cindy Pommrehn