This week our little Eleanora turns two. TWO. She is busy with a capital B. She is determined to do everything herself: “Me do it.” She loves Curious George and puppies with a passion. She is social and greets everyone she sees with a wave and a “Hi!”. Her obsessions with makeup, shoes, and accessories are still strong. But don’t let those interests fool you, she is tough and adventurous and always trying to keep up with the bigger kids.
Two years go so quickly. Six months does as well.
Many have asked how Eleanora is doing since Gwendolyn passed away. The short answer is she is doing just fine. At just 18-months-old when Gwendolyn died, she could not fully comprehend her loss. There are still days when she thinks she will come back. On one hand, her young age is gutting because I know there will come a day when she no longer really remembers her sister. On the other hand, though, as parents we are not having to help our child navigate through her own deep grief. She is grieving too, we know that, but at such a young age she is more easily distracted and more easily comforted by maintaining a routine and showering her with attention and cuddles. At two, whatever is right in front of you is all you really understand. And what has always been in front of her is love.
I will always be grateful that Gwendolyn chose to leave us so early in the morning. It was quiet and peaceful as our life with our firstborn ended. Though the hours ticked forward into an unknown new world, Bill and I were able to allow time to stand still and focus only on our precious Gwendolyn, take our time to hold and caress her body, and be fully present with our sorrow. There were no sirens or alarms blaring. Eleanora did not ever have to be afraid. And Bill and I did not have to choose which child we could shower our love on. Eleanora slept peacefully in the other room, totally unaware of what was happening.
When she woke and for the first several weeks after losing Gwendolyn, Eleanora was confused. She would run into Gwendolyn’s room excitedly squealing, “Sissy,” expecting to see her like she had every day of her life. She kept asking for Sissy, shrugging her shoulders and furrowing her brow, wanting to know where did Gwendolyn go? At Gwendolyn’s funeral, she got very excited when she first saw Hayden, certain she had found her sister until she ran up to her and got a closer look. I will never forget watching them hug that day, Eleanora lingering in Hayden’s arms as if she fully understood the weight of that embrace. They seemed to comfort each other about the loss of their unspeakable bond with the same person.
Now, instead of kissing her sister goodnight, Eleanora lovingly hugs Gwendolyn’s bed and kisses Gwendolyn’s picture every night before bed. Now, we watch the sunset and blow kisses up to the sky for Sissy to catch. Now, when she sees flowers she asks if we can get them for Sissy. Now, when we drive into the cemetery she shouts “Sissy” with glee and knows she gets to read stories and look for animals and dance. These things may seem bitter to others, but for us they are natural and a healthy beginning to explaining such a profound loss to a child.
We’ve been making our way through how we talk about Gwendolyn’s death, choosing our words carefully, not wanting to create unnecessary fear for a child so young. We never say she “fell asleep” or “was sick” for example or other things that could make Eleanora feel that she or we may die imminently. We also never want her to think of her sister or others with disabilities as “suffering” – that isn’t what we believe. So we are also careful with language around why Gwendolyn went to heaven. But we don’t shy away from allowing her to see us cry. Sometimes people think they must be strong for children, but Bill and I have always wanted our children to see us as human, not super heroes. Sadness is part of life and sorrow around death is perfectly natural, so we talk honestly with her about it. When she says,“Mommy cry?” I say, “Yes, it’s okay to be sad sometimes. Everyone feels sad sometimes. I feel sad right now because I miss Gwendolyn.” We know these conversations will continue to evolve as she grows and matures. And they are ones we will continue having, probably for the rest of our lives.
The reality is we are sad, profoundly so. But our sadness has never taken away from our ability to see the glory of our budding two-year-old. The very opposite in fact.
Our life with Gwendolyn, who always possessed such light, was always comingled with SMA, which takes and takes and takes so much. We learned grief and gratitude can live side by side. I think sometimes people believe sadness overrides gratitude. But that simply isn’t true – at least not for us.
There isn’t a moment that Bill and I are not fully conscious of all in our life that is a blessing.
Our hearts are broken but we see with full clarity how beautiful the world is through a child’s eyes.
We now feel the miracle of what it is to have little arms wrapped around our necks, her muscles tightening their grip, all on their own. We now hear with awe as she shouts “Mommy, Daddy!” at the top of her lungs. And these are miracles.
It is because we had to watch our child’s body and abilities degenerate that the little things will always be big things in our world: movement, independence, speech, milestones…
It is because of loss that we value life and health for the gifts that they are.
It is because of our experiences that a toddler tantrum does not even register on the stress-o-meter. In fact, it is a marvel.
It is because of Gwendolyn and her joy for life that we know Eleanora possesses that same childhood wonder, which is a privilege to get to explore together. And what we savor.
Eleanora is our rainbow baby. She always was. In all her tininess, Eleanora has always given us a lightness and a levity to our heaviness. And now, more than ever, she gives us a purpose and a place to pour all of our love. It seems bigger now that Gwendolyn was the one who chose rainbows for Eleanora’s nursery. Perhaps she already understood that Eleanora would possess a counterbalance of color, energy, and hope.