I’ve spent a good part of this past week getting my life organized. The coupons have been cut & filed, the expired ones thrown away. The laundry is done & the school supply lists are printed out and ready to go. But my most significant mission was to put together the “Master Calendar” for the school year. On this giant calendar, I have entered important work days & school days. I marked the half days & the days off, the open houses & the school sneak-a-peeks. Amidst all of these dates and times, I noticed that next week I’ll be taking my 8-year-old daughter to the pediatric cardiologist the day after I take my husband for his MRI.
Let’s start with my husband’s appointment. It’s been almost 1 year since Fred was diagnosed with Multiple Sclerosis. It started with his vision becoming clouded & dark in one eye. Each day got progressively worse and he went from the internist, to the ophthalmologist & on to the neuro opthalmologist . An MRI revealed 5 lesions on his brain and the diagnosis was given. I remember that moment so clearly. The doctor, lacking any real warmth or bedside manner, delivered the news and sent us home with thick packets of information that we could use to choose a medical course of action. First came the massive doses of IV steroids to stop the swelling of the optic nerve. I would liken Fred’s experience with that to Prednisone on steroids. It was a week of IV drips, sitting 45 minutes at the dining room table, hooked up to a line and being tended to by me, nurse Deborah. The effects on his body from such massive doses of steroids lasted for weeks and seemed to leave him feeling worse & not better. It was hard to watch my husband struggling, to feel so powerless to make things better. But every day he got up, put his brave face on and went to work. He wore a patch over his left eye and was lovingly referred to as “The Pirate Rabbi.” He eloquently & thoughtfully shared his diagnosis with the congregation and his honesty was met with overwhelming love and support. In time, his eye healed and the symptoms of the steroids subsided. MS became yet another diagnosis that our family learned to live with, and in time, even laugh at. But there were many tears shed, and a good amount of them were mine. I felt as if life had once again kicked my family in the ass. “It’s enough!” I remember saying over & over as I cried on the phone with my friends. After all, we had lived with Yael’s diagnosis of autism and all of the challenges that come with that. That alone would cause most families to cry “uncle” to the universe. But our challenges hadn’t ended there.
When our youngest daughter Noa was only 3 1/2 weeks old, she endured a 7 hour open heart surgery at Yale University Hospital in Connecticut. This had not been an easy pregnancy. The doctors noticed at 18 weeks that she wasn’t growing properly. I endured ultrasounds every other week and non-stress tests on the weeks in between. Every week I went in to the doctor’s office knowing that if Noa wasn’t growing, they would have to deliver her prematurely. And every week that I left with her still safely tucked away in my tummy, I would cry tears of relief. When she was delivered at full term, it was by cesarean section. She was a “Frank Breech” which is basically when the baby’s tush is down toward the birth canal and the legs stick straight up in front of the body, with the feet near the head. She was what they call a low birth weight baby at only 4 lbs. 15 oz. My relief at having delivered her safely, was soon replaced with worry. She slept all of the time and it was incredibly difficult to rouse her for bottles. I was told not to worry, that it was common for such small babies to sleep more in the beginning & as long as she was eating something, there was no need to be alarmed. But that voice inside of my head just kept getting louder and telling me something wasn’t right. On the day of discharge, the pediatrician on call came in to examine Noa and told us he heard a murmur. Though on the surface he didn’t appear alarmed, that voice inside of my head got even louder. The next day our own pediatrician confirmed the murmur and sent us to a pediatric cardiologist. He said that 90% of the time these murmurs are benign, but I knew in my gut that we would fall into that other 10%, and so we did. At 3 1/2 weeks Noa was in full-blown congestive heart failure. Our efforts to fatten her up and get her stronger for the surgery were not working. She was down to 4 lbs 11 oz. and it was time to act. That moment when I handed my daughter over to the anesthesiologist is forever seared into my mind. I was, quite literally, putting her life into the doctor’s hands. I walked out of the door and fell to my knees sobbing. For 7 hours my baby was on that table and when we finally got to see her in the PICU, her feet were the only part of her that didn’t have bandages, tubes or blood. She was on a ventilator, laying in an adult size bed, hooked up to wires and that image too is indelibly scratched into my brain. She came home a week later and through the winter months we nursed her back to strength. By the spring she was a chubby little baby, off of the meds and growing each & every day. The scar on her chest a permanent reminder of what she and we had endured.
So next week I’ll take my husband for his MRI and I’ll be saying many silent prayers as I sit in there with him, holding his hand. I’ll pray that the nightly shots he endures are working. I’ll pray that there are no new lesions and that, at least for now, we have kept MS at bay. And the next day, I’ll take Noa to the cardiologist and pray for a “routine” examination. Twice now she has given us real scares, the doctors finding cause for concern. Twice now we have faced the possibility of another open heart surgery for her, agonizing over the mere thought of it and, thank goodness, twice now there have been reprieves.
Still, I never walk into these appointments nonchalantly. Three times now, our life has turned on a dime. When that happens, you learn never to take things for granted. First Yael’s diagnosis of Autism, than Noa’s Congenital Heart Defects & I pray that last, though certainly not least, Fred’s MS. People tell me all of the time how strong I am. They look at what our family has endured and they marvel at how we do it. They tell me I’m strong~but I don’t feel strong. They tell me I’m brave~but I don’t feel brave. If I am being honest, I do feel at times like the universe should pick on somebody else for a while. But then I find myself reflecting on a saying I once heard. ”Don’t compare your life to others’. You have no idea what their journey is all about.” In other words, “If we all threw our problems in a pile and saw everyone else’s, we’d grab ours back.” (Regina Brett) So, my family’s challenges are our own. Some days they suck and at times they are overwhelming. Some days they cast a shadow of fear & anxiety and some days still, many tears are shed. But most days our challenges exist in the background of our most ordinary days. They are woven into the fabric of our family quilt, but they are not what is most prominent. There are physical scars and emotional ones too. But they are overshadowed by the healing that has taken place over the last months & years. We make jokes about our circumstances because laughter really is good medicine. We focus on our blessings and we are grateful to live in a time when Autism, Congenital Heart Defects & Multiple Sclerosis can be helped through the advances in medicine & education. We’ve searched for a lot of rainbows on the darkest of days, just to offer a glimmer of hope; and we’ve found it in the love & support of those we hold dear. We have found it in the prayers of strangers, the hands of physicians & the unwavering commitment & care of friends and family. But most of all, the five of us, me, Fred & our girls… have found it in each other.
So, the “Master Calendar” holds the reminders for next week. Two appointments. Two of the challenges we have faced. Two reasons to reflect on the fragility of life & the resilience of the body and the human spirit. And two reasons to be grateful that Leora, our middle daughter, only needs a new set of glasses
”Life isn’t about how you survived the storm … it’s about how you danced in the rain.” (Regina Brett)