Pssst…I Don’t Know What to Say Either

I am the mother of a Special. She moved to heaven 2 years ago. Diagnosed with trisomy 18/Edward’s Syndrome, Carly was bestowed  a sort of death expectancy instead of a life expectancy. Although she had an amazingly beautiful and joy filled 7 1/2 years on the earth, the OBGYN that delivered her said, “She’s just gonna die. You will only have time to bond and say goodbye.” With that pregnancy I was instantaneously  initiated into a special club of families that have the true grit necessary to allow these youngsters  to live just as long as they wish, and accomplish their destinies on earth!  As such, I have probably attended more funerals for children under the age of ten that the general population. But to be completely honest, I don’t know what to say to a grieving parent anymore than you do. On Face Book, I say I’m sorry, and then leave kisses and hugs (xxoo). Sometimes I will talk about heaven.

One of Carly’s friends, Eva,  moved to heaven recently. She was sweet and cuddly and beautiful from the top of her head all the way down to her toes.  I walked into her celebration of life, there was laughter and life emanating out of the reception hall. Hey, our kids are extraordinary even in our letting them go. I talked briefly with Eva’s dad, “How are you doing? Is there anything I can do here,  right now? For your family?” I walked  away feeling inadequate and rather clumsy. I had a little self talk,  “Deborah, you have been here! You know what this is like! Couldn’t you have been more eloquent? More with it?”

I intently focused on the video prepared for the occasion and lost myself in 15-20 minutes of reviewing Eva’s life. I watched her grow, I noticed the inclusion of the O2 tube and the photos where her eyes were shut, near the end. I studied the faces of her siblings and watched as before my very eyes they grew up. A nine-year span condensed into less than 30 min. I cherished the two photos of Carly, when we celebrated Eva’s 5th birthday. I choked back a tear and refocused on the Brooks story line.  Kathryn’s beautiful smile,  I choked  back additional tears.

I spoke with Daziah, Eva’s older sister and said one or two things, including how clumsy I felt. She talked about Eva’s extended hospital stay and how everyone offers to be there for her. I connected more with her concerning  the death of my dad, who died of cancer and did not eat for two months. He looked like he had been in a prison camp and I was relieved at his passing. I told her to take care of herself and and rest when needed, and the self talk continued, “Deborah, you were the MOM,  Daziah is the sibling, your advice might not be appropriate. Don’t talk about Carly unless the Holy Spirit prompts. Listen, don’t say much. This is not about Carly.”

I took pictures with Caleb one of  Eva’s trisomy 13 peers, and his mom Kimberly. She talked about his cochlear implants and how she is trying to get the right level of assistance,  since Caleb is both deaf and blind. I know a lot about being Carly’s mom, but  little about the challenges Caleb faces. I know about children who walk with walkers and feeding tubes, from her first few months of life. I know about daily “potty” concerns and how illnesses can become trips to the ER, but I know Carly’s story and not Eva’s, not Caleb’s. I feel for their siblings and parents. I care, I do, but I am only the expert on my life, my journey. People are as unique as fingerprints.

Grief will be personal for Daisy, Eva’s mom. I don’t pretend to assume how it will go for  her, her husband, her children, and friends. I have as little to say that will actually ease her pain,  as another parent with healthy children. My experiences grant me invitations, to  special places, places  where joy and sorrow coexist in the exact same place, at precisely the same time.  My scars are a type of entrance and secret code. I’m familiar with places that the average Joe only goes once. I’ve been there several times.   Understand this, if you are uncomfortable and are a loss for words, so am I.  You can stumble, bumble, and even stay silent. That is Ok. You are there and for all its worth that is the most important thing! The loss your friend, mom, co-worker, neighbor is experiencing is permanent. What does that mean? In practical terms, don’t sweat the funeral so much. Reach out when you can, a month later, six months later. Ask about stories about their loved one, or just go have some fun! Don’t be embarrassed or feel inadequate, just be yourself and be KIND. Hey, a gift card a year after a loss is still a thoughtful gesture. Awkward is  a legitimate emotion. Don’t let it stop you in times of grief.