Empty. Vast expanses of emptiness. That is how we feel without Gwendolyn.

It’s the obvious, of course. The missing her, always missing her. The aching for her skin, her sounds, her joy, her love. All of her.

But it is also the complete change of life, the full throttle busyness to a much more simple day. We carved out a life so unique for our child that it is hard to find our footing again. Normal life is no longer our normal. We must now relearn how to live.

And it feels empty.

Every day was filled with people. People in our home to check on Gwendolyn or help us with her care. People coming by to deliver medications or medical supplies. People who needed monthly updates for their records or an interview to prove she still needed services. People. There were always lots of people.

Every day was filled with phone calls and emails. Talking to someone about getting Gwendolyn what she needed, ordering new equipment, planning the custom adaptions, fighting insurance, speaking with services, renewing applications, planning appointments, checking in with doctors and nurses. All just to keep Gwendolyn’s life stable. It feels so quiet now.

And it is the lack of stress.

Every day was filled with fear and worry that we may lose her. Some days we nearly did. Most days we had to save her life in some capacity and, as crazy as it sounds, most of those experiences became just our typical day. Every day we were assessing her constantly: how is her energy level, how is her coloring, how many secretions does she have and what do they look like, how are her bowel movements… We were always eyeing her machines, checking power, planning ten steps ahead to make sure everything was fully charged and functioning and, if not, we were scrambling to get a replacement before things got dangerous. We learned to live with this intense level of stress all.the.time. that it just became our life.

The stress level of parenting a medically complex child has been equated to the stress of those held in captivity. I don’t know if that is true or not but what I do know is we felt helpless, utterly helpless, all the time. And desperate. And petrified. We wanted to weep and stay in bed but we didn’t because our child needed us. And so we carried all that stress while simultaneously dancing a jig, or putting on a puppet show, or reading books with full animation. Because children don’t carry all that stress, at least not when they are little, they just want to be children. And seeing her joy was about the only thing that got us through each day, healed us, helped us cope, and in turn made us fight harder for her.

And it is the change in the rhythm of our daily routine and the missing intimacy of caring for all of her special needs.

Caring for Gwendolyn was our life, 24/7. We were sleep-deprived and over-stressed, but it was a gift to get to take care of her, help her, serve her. I felt resentful of SMA and wished she didn’t have so many struggles, but I never begrudged taking care of Gwendolyn and neither did Bill. It was a way to express our love and devotion. Her regular breathing treatments were our special time together, our one on one time when we had our best talks. Wiping her mouth or adjusting her body throughout the day was our way of nurturing her and protecting her in the only way we could. When I felt stressed I often fussed over her even more, not because she necessarily needed it but because it gave me a tangible when I felt so helpless.

Caring for a medically complex child creates intimacy and interdependence. When a child relies on you for everything, for every single thing, there is an intensity to the relationship and their soul becomes entwined in your own. Gwendolyn never said a word, but I could look into her eyes and understand her, anticipate her wants, and intuit her thoughts. Our bond was fierce and strong, and, I hope, always will be. But we no longer have a tangible place to put our love: the sweet chubby fingers to kiss, the silky locks to twirl, the long limbs to curl up next to and wrap myself around. I often felt like a crazed animal and couldn’t get enough of loving on her; she’d giggle and pretend to protest as I ate her up and told her I just needed more snuggles. My fierce love no longer has a home.

Without her, life feels foreign.

Honoring her gives me purpose. Doing things for her and because of her is really the only way I know how to live. I don’t remember how else to be.

So we honor her as much as we know how. We did some sacred things on our trip to Kauai and we wrote her name in the sand. We visit the cemetery and bring her fresh flowers, tidy up the old ones, fuss with the arrangement. We designed her grave marker, selected the specific stone and font and wording. We have given gifts in her memory and plan to do that more. We started donating her equipment to help make things easier for other families. We attended two fundraisers this weekend and are planning for others. We run for her and because of her. I drape my body in Gwendolyn jewelry or butterflies or NEVER GIVE UP. I paint my nails with purple or sparkle polish. We read Eleanora her favorite books and we help her say goodnight to her sister each night. Sometimes we blow bubbles up to her and send sissy kisses in the sky. We watch the sunset each night and feel her in the pink and purple hues. We search for butterflies. We talk about her. We talk to her. And for moments these things make us feel whole again.

It is when I am just going through daily life that I just can’t find my footing. It’s like I’m moving but not really forward, a perpetual escalator, climbing and climbing. I know this ride is necessary and I have to journey through, no one can do it for me. But it’s lonely and new and I want to go back to life before. Back to the people and the phone calls and the stress and the exhaustion. Back to the chin tickles and the wheelchair races and the living room dance parties and the hours of snuggled up book reading. I want to go back to Gwendolyn.

It just feels so empty without Gwendolyn.