This time last year I was 7 weeks pregnant with my son Everett and dealing with both the joy and nausea that can come with new life.
In March, Nora’s health began to decline. She had her first case of pneumonia just following her second birthday. From March through April she dealt with ongoing and relentless seizures. At the beginning of May she was hospitalized for major seizure care and another case of pneumonia. These changes kept seizures at bay for only a week and led to us adding a fourth seizure medication, something we were desperately trying to avoid. Unfortunately, Nora’s constant seizure activity and recurring pneumonia continued through May & June resulting in two more hospitalizations. Her skills and physical strength declined. She was unable to sit up and eat from a spoon and she struggled to maintain an appetite. We began having discussions regarding Nora’s quality of life, our goals for her health and ways to minimize her lengthy hospital stays. Neurologists began to identify the constant seizure activity as her “new baseline”, but continued to strive for Nora’s best wellness. In July, Nora was hospitalized for guess what… pneumonia! Her stay was extended for G tube surgery, something her entire care team identified as a positive change to benefit Nora’s overall quality of life.
At the end of July, my mom and aunt attended a conference for children with Nora’s syndrome. Nora falls into the classification for Aicardi syndrome, a rare and completely random clinical diagnosis impacting 4,000 girls in the world (yes, only girls). We were overwhelmed and inspired by the lives these girls and families lead. In August, Nora began receiving palliative care services in an effort to minimize her hospital stays.
When I was 38 weeks pregnant with Everett, Nora was hospitalized for respiratory distress. Two nights into her week long stay, at 1:00 in the morning, my water broke at her bedside. Everett was born 12 hours later. Nora and Tyler joined me at home when Nora was discharged a few days later. Nora slowly recovered from this stay and was strong enough to start preschool at the end of the month. She started having some better days and regaining some strength as we approached fall. Her seizures gradually started to dwindle or to be not as intense and invasive. Then she started having some great days (alert and attentive) but still wasn’t quite herself. Nora was again hospitalized for 4 days, for respiratory distress, when Everett was a month old. When Nora came home from this stay she recovered well, her seizures decreased and seemed nonexistent on some days. We felt relief, so much relief from the constant seizure activity, but she still wasn’t quite herself. We hadn’t seen her smile in a few months, which made us sad and a little worried.
In October, we decided it was time to move from a two-story home to a one-story home to make our space more accessible and safe for Nora. Tyler and I spent time staging and showing our house, staying at my parents’ home to reduce the mess in our house that comes with life and children. We looked at several homes, made offers on a few, and things eventually came together in early December for our one-story house. We moved the weekend before Christmas.
As far as Nora’s current health, she has not been in the hospital since September and she started to smile again at the start of December as we began to decrease one of her four medications. We still have a ways to go on this medicine reduction, but it has been such a blessing to see our girl smiling again and feeling a little more herself.
When I look back over this last year there are big bright ugly beautiful moments seared into my heart and mind. The gorgeous day we had with Nora at the aquarium for her 2nd birthday. How I cried looking at photos of that day for months because I was broken hearted and longing for the smiles, healthy cheeks and brightness in her eyes. I felt anger this year, so much anger. I was a frustrated that every getaway or family vacation we planned from April through August turned into a lengthy hospital stay. I was mad that Nora saw more of the hospital and ER then she ever has of playgrounds or the beach. I was angry that I could literally recognize the footsteps of various doctors and nurses before they entered the room allowing me just enough time to lift my pregnant body off my hospital floor bed. I was so angry when medical moments didn’t go right; the botched IV’s, deep suctioning, and missing pieces of Nora’s pain management plan after surgery. But more than anything I am so mad at God for allowing Nora to have what the doctors call “a hard life”.
2016 was a front row seat to the physical, social and emotional realities of Nora’s diagnosis and situation. In 2016, I felt helpless and defeated more often than I admitted to anyone, besides my mom, who told me, “Jesse I have a lot of hope for Nora, I have so much hope that she will get past this”. Those words brought me courage and comfort on some of my darkest days. This year was tough, it was rocky, it was far from ideal. Many parts of me are still tired, angry and broken, but let me tell you the beautiful part about it all: we endured…. We endured.
When we thought we had absolutely nothing left to offer, we found ourselves in situation after situation where we had to have faith, be hopeful, and love one another selflessly. My friends, there is absolutely nothing more gorgeous in this life then what we produce when we are called to simply and faithfully endure. I want so badly to be whimsical, to paint you a picture of all these 2016 “gorgeous moments”, but the truth is, it is completely and utterly unglamorous. It is Tyler picking me up a Snickers bar from the hospital cafeteria after a long night. It’s going the extra mile to lighten the mood by doing a silly impersonation of the new medical resident, it’s taking the team of doctors into the hallway to talk because the other person just can’t “go there” in that moment.
When Nora was first diagnosed with epilepsy and an abnormal brain structure (as a 3 month old in the PICU) I couldn’t have known how hard the road would be, how the hard days might sometimes outweigh the good, and how God and my circumstances would require every ounce of mental, emotional, physical and spiritual strength I could manage. But I could never have predicted how much we would grow in love, faith and hope — and I never could have known how strong, beautiful and selfless my husband and family could be.
As I look to 2017, I am thinking about how much has changed for our little family. As we think about “resolutions” and “goals” and the things a new year brings, I know I would be lying if I said I wasn’t still angry and hurting. As I look to this year, my focus is my soul. It is capturing, bottling and recreating anything and everything that brings my soul to a place of healing, even if just for a moment. After the year of soul wrenching turmoil that was 2016, I am ready for stillness, ready to feel grounded, ready to feel connected and centered.
Over the last few weeks this has meant a glass of wine, Everett’s laugh, finger painting with Nora, holding Tyler tight, a spontaneous trip to the beach, Tahoe’s nose kisses, the rain on the skylight, hot toddies and tea, prepping vegetables for dinner, visiting family, writing by candlelight, Nora cuddles and waking up with Everett snuggled beside me, deep meditative breaths, bedtime stories with Nora, and Bible reads. The pain is great and deep, but there will be many moments of healing this year, I believe it, for your hurting heart and mine. Cheers to healing and soul battles. May God give you the vision to see his hand at work and the strength to carry on…to endure.
Photo credit: Jessica Rice Photography