When I was younger I wanted to save the world and do amazing, wonderful things. One of my plans was to provide sanctuary for companion animals that no one wanted. After spending one day working in a veterinary clinic I surmised I didn't have the coping skills to be intimate with illness, physical and emotional challenges, and death on a daily basis.
That changed when my first Dane, my very best friend, was diagnosed with a disease that slowly destroyed his liver. He had chronic active hepatitis. Watching him move through his last months, weeks, days, and hours was both excruciating and beautiful.
I learned how to cope.
Many medically challenged Danes later, my husband and I learned I was pregnant. I was terrified of becoming a mother because I worried I wouldn't like my child. That he wouldn't like me. Or the worst case - he would be . . . different. I knew I couldn't cope.
At 23 weeks our son was diagnosed with an omphalocele. The perinatologist bluntly shared the news with us and in the same breath advised us that she would shuffle us down the hall to the genetic counselor, which would give us all the time we needed to consider termination. Right. She had a window of time in the afternoon that was just enough for termination and needed to know right away if we wanted to pursue that option.
We didn't. We learned how to cope together.
This diagnosis came after two threatened miscarriages, one of which required a blood transfusion. I had been released from bed rest five weeks prior to this appointment. Nine weeks later I was back on bed rest for unrelated complications.
I learned how to cope.
Our son arrived at 37 weeks and was in prepped for surgery three hours later. We were fortunate to have an amazing medical team and scores of people surrounding our family with prayers and healing energy. When he was 12 months old, his surgeon released him from further monitoring.
In some ways it's like nothing ever happened and he had a perfectly normal beginning. In other ways our lives are completely different. As much as I wonder what a normal pregnancy, delivery, and infancy are like, I wouldn't change our experience for anything.
I grieved during and after the first threatened miscarriage. And the second. I was completely unprepared for my feelings and the tidal wave of hormones did not help the situation. I grieved the diagnosis. I did everything I could to prepare myself for whatever might happen, including not coming home at all. I was terrified and strangely at peace simultaneously. I learned from my grief and am a much stronger and wiser person because of it.
Our son is two. When I return to a NICU, especially our NICU, to photograph a family I relive those early days. I continue to face my grief (and I think in some ways it never really goes away) so I can process it and be healthy.
I've always seen that the greatest opportunities come from our greatest challenges.
Grief can be absolutely crushing if we allow it to be. When a child is involved the feelings become even more overwhelming. We all move through things in different ways on different timelines. We surprise ourselves with our strength and resolve.
We learn how to cope. We ride the waves, because anything else means going under.
The thought of not having - of losing - someone must be one of the most powerful, influential, and motivating experiences on Earth. It's in these moments we quickly replay the pieces of our past that failed to fully honor who may disappear.
Did I love him enough?
Does he know how much I love him?
Did she know how proud I was of her?
I wish I would have apologized sooner.
I wish i would have been more patient with him.
I wish I would have taken more time to understand how he felt.
All things I have heard from others, and some I have said or thought myself. The moments of clarity before loss are beautiful gifts.
Yesterday I had the unexpected opportunity to enjoy one of those moments.
My son, The Boy, dozed lightly in my arms. He suddenly screamed in terror and pain, and although I had not heard that scream before I knew something was terribly wrong. His body stiffened and his back arched. His little arms and legs, which were normally so productively exploring new frontiers, twitched and jerked close to his sides. He was rigid. His head turned to the right and pulled up so oddly that it looked like an invisible force was acting on him. His jaw clenched and his lips pursed so tightly they began to blue. Most of this was silent, but the few noises he uttered I can't describe - whether he was aware at the time, he was in distress and there was nothing I could do to help him.
A powerless parent is a desperate parent. I felt myself become raw and exposed.
I continued to hold him without restraining him, hoping for a short seizure and no injuries. His body gave a mighty and rigid arch before falling limp. He was unresponsive and breathing. Thank goodness he was breathing. I called my husband, The Man, using my free hand and uttered, "He had a seizure." I don't remember the rest of the conversation. I don't think there was one. What do you say to that?
I ran a tepid bath for him to bring down his temperature, which we soon after discovered was 104.8F. He lay motionless on the slate floor in the bathroom while I sang to him. I sang because I thought somewhere in his mind he would hear that and know that I was with him. Maybe that would help. I also sang because it forced me to breathe in a measured way. I placed him in the bath, to which he responded by shivering uncontrollably and crying. The chinks on my SuperMom armor kept on coming. I wanted to collapse and fold him into me; I knew I had to cool him and quickly. The moment I lifted him out of the water and held him closely to me he settled. I was terrified that he would settle too much. Settle forever.
The good news is that we brought his temperature down to a manageable 103F within 20 minutes and just below 100F within an hour. After consultation with the doctor's office and Dr. Grandma (who really is a pediatrician), we journeyed to the emergency room. We had the privilege of working with an amazing physician who patiently explained the circumstance and prognosis. The Boy will almost certainly have more seizures. They may or may not become more severe. He may or may not grow out of them. They shouldn't have any permanent negative impacts on his development and he shouldn't require medication. The trick is to keep an eye on him, especially in critical areas like swimming pools and bathtubs, to make sure he has a safe place if he does have a seizure.
As we left the hospital, The Boy gregariously flirted with the lady medical professionals who giggled, smiled, and waved. He pointed at the numbers on the rooms and shouted them out when we walked by. He proudly exclaimed the names of each animal he saw in the photographs on the walls. Since then he's had both good and bad moments. He's still a little out of sorts and quite tired.
I'm not the kind of mom to lose myself in parenting. There are pieces of my pre-mom identity that are important to me and I work to keep those. I find ways to fit those things into my life because I believe that being a role model and a parent means that I stand up for myself and pursue my own interests in addition to being my son's champion. He regularly challenges me to see things from a different perspective and for that I am tremendously grateful. I take care of his basic needs and in return he pushes me to be better every day.
Today I'm wondering if I love him enough and if he knows how much I love him. If I am doing right by him. I do the best I know how to do with what I have. I hope he'll understand that.
I think that’s what we are all trying to do. We want our lives to be full. We want to have positive impact. We want to leave a legacy, however small it may be, that proves we we here and we mattered.
Here’s to life without regret.
I see a lot of incredible moments of the human experience while being with families in love and grief. From each family I learn, and those lessons and points to ponder are what I wish to share with you here.