Beads of courage
Having a big, healthy boy has been a huge blessing, but seeing Enzo thrive makes me realize how much Isla struggled with the simplest things.
Eating was a considerable chore for her--she was unable to metabolize breast milk because it made her swell up, so she had to eat this foul-smelling formula. Taking a few ounces of formula from a bottle was a lot of work for her, and she'd be panting and short of breath after a few minutes. Because the doctors were so concerned over her weight gain, we could only let her bottle feed for 10 minutes at a time, after which we would give her the rest of the meal through her NG tube to save calories. This was during her good days--most times she was on strict NG feeds all the time. I would say bottle feeds were less than 20% of all her meals.
Being held was an uphill battle. We had to wait through surgeries, weeks of no-holding because of cardiac lines, and conflicts with hospital protocol about when and where and how she could be held. I remember one night, I went into the CICU planning to sleep on the fold-out chair and hold her on my chest, and the nurse (whom I had never met) wouldn't let me. She said it was dangerous and against hospital protocol, despite the fact that I had done it many times before. Isla was attached to monitors, was immobile and it would have been impossible for her to fall from the high-sided chair—but I was told no.
Isla also developed a conditioned response as she watched people move towards her, since attention so often was coupled with unwrapping, being poked with cold instruments, and getting IV's inserted. Many times we witnessed her being assessed by nurses, watching her heart rate and respiration rate go up on the monitor, and hearing her cry or shriek in protest. It took a lot of love and attention and patience for her to finally enjoy being held, even by her parents.
Now that I have Enzo, I realize that one of a baby's greatest needs is just to be held, and loved on. While the caring nurses met her physical needs, they couldn’t bridge the gap for her emotional needs that she could only get from me and Dan. It feels natural and normal to bring Enzo into bed, feed him, and fall asleep together. As a first time parent with a very sick baby and people always telling me what to do, I felt I didn't have a say as her mother. Now I would tell that nurse to fuck right off, excuse the language, but hell no, and I'd hold my daughter for as long as I wanted.
The few days we were in the hospital with Enzo were completely different. I slept in a twin bed with him and he rarely left our arms. Assessments were done with us holding him. We changed all of his diapers and fed him all of his meals. We never left him alone with a nurse or a volunteer and we kept him wearing his own clothes, wrapped in his own blankets. Those things made a world of difference. Of course the treatment was entirely different, but doing those simple things abated the terror of being in a hospital for all of us.
I look back, and I see that Isla had to work so diligently to enjoy and achieve the things that come so naturally to her little brother. It pains me to think of how hard she fought sometimes, and how uncertain I was in with putting my foot down about certain things as her parent. I have to be aware of not letting myself fall into the thinking pattern that her life was hard, and Enzo's life is easy. That'd be a terrible message for him, and an unhappy shadow for him to grow up in.
At Children's, they had a program called Beads of Courage that essentially awarded a bead to Isla each time she was bothered--a bead for an overnight stay, a bead for a visit from a care team member, a bead for an IV or a dressing change. She got bigger beads for surgeries and procedures. Most have a designated color that tell what it was for, some glow in the dark, and some were picked out especially for her by her nurses (like her "diva" bead). The biggest and most stunning bead was a glass butterfly that her nurse Alicia handed to me before we left the hospital for the last time on June 10, 2013. I asked what it was for, and she told me it was the most important bead of all, to honor the children who died in the hospital. Carol made a beautiful shadowbox of Isla's beads for her funeral, and it sits by my bed and is the first thing I see every morning upon waking.
The beads are a great reminder of how bravely Isla dealt with things that challenged her and made her uncomfortable, and as we watch Enzo zip past all the milestones she never reached - pushing his head up, reaching and grabbing, cooing and verbalizing - we're in awe of the ease with which it is happening. As Dan put it after we took Enzo home from the hospital, our son has like, three beads. Isla's beads are a visual reminder of the uphill battle of her life, and every time I see them I tell myself that her life was not lived in vain, but had more purpose than I can even put into words right now.
What would our lives be like if we lived with that level of courage every day?
