Many years ago, sometime after Bella’s seizures had begun, I came across a poem called Welcome to Holland by Emily Perl Kingsley. Emily is a writer, and Emily is the parent of a child with Down Syndrome. In her poem, Emily creatively compares being a parent of a child with a disability to planning a trip to Italy, but winding up in Holland instead. She shows how she reluctantly, but positively accepted her destination, metaphorically in Holland, but in reality, as a parent of a child with special needs.
I cannot begin to imagine the number of times I have considered this poem. Of course, I was able to immediately relate to it. Bella’s seizures and medications, and eventually her learning delays all made me realize that she was on a different path than I had dreamed of during my pregnancy. This poem, however, has helped me keep my chin up over the most minor things. The day I planned on making French toast, only to realize I had purchased the thick Texas toast I like to use, but I completely spaced the eggs, for example; I was upset at first, then I remembered the poem. We had oatmeal instead. Then there was the day I walked into the garage to find that a tire on my car had gone completely flat overnight. I had planned on finishing Christmas shopping as soon as I dropped the kids off at school, but instead I had a friend come to take my kids to school, and I stayed home to sort out a closet while I waited for my husband to come fix the flat (I tried, I couldn’t do it). Plans change, and it’s okay. It’s not the end of the world.
But sometimes, ah…, sometimes in our lives there is an event that is very special. There will be a moment in time that cannot be relived. In August of 2016, my parents celebrated their 50th wedding anniversary. They have lived in the southwest for a few decades now, but they were married in a cute little church in upstate New York. After much consideration, they decided they would honor this very special day by renewing their vows in the same church where they were originally spoken.
My family was thrilled. We made plans throughout the year to join them as they walked down memory lane. I still have several aunts and uncles and cousins that live in the area. This event would be a family reunion.
My children were young adults ages 19, 20, 24, and 27. I was looking so forward to introducing my daughters to my extended family that they had only met when they were quite young. My husband and I had just sold our businesses, and were in the process of selling our home. We were temporarily without jobs, so we were able to take extra time, and we decided a road trip with our youngest daughters was a great idea. Our older girls and their spouses would meet us in New York. We would stay in a house we rented for the weekend. The memories would be priceless, and they would last us a lifetime.
Since we had a few weeks to make this drive, we decided we take a scenic route. We considered buying an RV, but ultimately decided hotels was more our (okay, my) style. We chose to drive from our home in Las Vegas through Yellowstone National Park, then drive through South Dakota to see Mt. Rushmore. Our next destination was Grand Rapids, Michigan to have some special time with my sister and her family. We had a general plan, but the only reservations we made were in New York, when we knew for sure what dates we would be there. The rest of the trip was flexible.
Traveling with a child (even if she’s a young adult now) with epilepsy adds some extra challenges. We have been doing this for years, so no added stress, really. When Bella was young, she had an emergency medication that was administered rectally. After a certain age, that becomes very uncomfortable, and she no longer had that as an option. There was a new method for delivering the same type of medication intranasally. I was not planning on her having any breakthrough seizures; she had not had any changes in medication for a year and a half, and she had not had any seizures in that time frame. However, knowing we would be hours away from hospitals while we made our way across the country, I asked her neurologist about this midazolam. He immediately agreed that this would be beneficial to have on hand, just in case. So that was prescribed, and we were set. In the months leading up to the trip, I also made sure I would have plenty of her other daily medications on hand. We were set.
On July 29, our road trip to New York started off without a hitch. Cass was home from college and Bella had graduated high school. We loaded up the truck, and off we went. The first night was spent in the cute town, Idaho Falls. From there we made our way to Yellowstone National Park. We saw geysers and Old Faithful; we had a picnic by Yellowstone Lake. We were driving about 8 hours a day, but making several stops to stretch and eat and keep calm and relaxed – we know anxiety can increase the risk of seizures, but we did not discuss this.
We continued on our travels to Mt. Rushmore, which was so amazing. I am so glad we saw that! Pictures do not do it justice. Then we traveled on, and we saw Crazy Horse, and we learned more about the history of Sioux native Americans, namely the Lakota.
Now this is the part of the trip that begins to get a little fuzzy for me. At a hotel in Rapid City, South Dakota (I believe), Bella had a small seizure. The seizure was only about 30 seconds long, and she did not fall asleep right away like she normally does. We decided to wait to see if this would turn into a cluster of seizures because that is what usually happens with her. She seemed like she was fine. The only person of the four of us that slept that night was Bella. I checked and rechecked to be sure she had taken her regular pills. She had. So why? What caused this little seizure, and would there be more?
It looked like Sioux Falls had a few hospitals, and we knew Rochester, Minnesota has the Mayo Clinic. We decided to not rush, to really give Bella extra time to relax. We decided to head east, and carry on with our plans. We were on some highway with not much of a shoulder. In the back seat of the truck, she had another 30 second seizure, and a few minutes later, one more. At the next rest stop, we pulled off the road, and we gave her the emergency nasal spray. She fell asleep. We made it into Sioux Falls after about five hours of driving. No seizures. We decided not to chance the extra three hours it would take to get to Rochester. Her dad, her sister, and I watched her like a hawk. In a hotel room, after 9 or 9:30 at night, she had another seizure, that quickly turned into a scary seizure. She was partially aware of what was going on, and she was absolutely terrified. It appeared to us that she was hallucinating. She was so scared. We tried to keep her calm, but the convulsing took over. Paramedics came, and we rushed her to the nearby Sanford Medical Center.
Bella’s seizure(s) continued without pause. The ER nurses and doctors were extremely attentive, and obviously very concerned. Her body was not taking a rest. She was in status epilepticus. They administered Dilantin, as that has proven to be a good backup emergency medication in the past. It did not work. After an hour or more in the emergency room, she was admitted into the neuro critical care unit. The lead physician was amazingly attentive. We went over her entire medical history as we tried to come up with the best plan to halt her seizures. Nothing worked. He finally recommended that we intubate her – put her on a breathing machine – so that he could administer higher and/or different medications to stop her seizures without the fear that she might stop breathing.
All this time, while I tried desperately to figure out what medications would stop these breakthrough seizures, I tried to understand why this was happening, and I prayed it would all stop so that we could continue our trip to New York. We still had a week and a half to get there, and it seemed very possible. She has had breakthrough seizures before. We (usually) just make a couple of adjustments on meds, and life is fine again.
As the days wore on, seizure activity continued, even while intubated. We slept on hard hospital chairs, and then took turns going to the hotel next door. We consumed bad coffee and stale chocolate chip cookies, and we watched her breathe. My oldest daughter, Mallorie changed her flight to New York, and met us in Sioux Falls. My parents made a diversion in their drive across the country, and they spent a few days with us. They did not want to leave. They considered canceling the renewal of their vows, but ultimately realized that too much planning had gone on, and that they should go through with their plans. Before they left, Bella’s seizure activity had slowed to almost nothing, and the doctor was able to remove the tubes (thank goodness, because that was a horrible sight to see – which I failed to prepare my parents for before I escorted them in to see her).
After the tubes were removed, she did have a few more typical seizures, but this time they were able to simply add phenobarbital to her medications, and they stopped. Bella was weak. She required a little speech therapy to help her swallow, and she required a few days of work with physical therapists to walk again. Her hospital stay was twelve days long.
A day or two before she was discharged, my second oldest daughter, Angelina, along with Kyle and Martin, changed their flights to come to Sioux Falls instead of our final destination, Fairport, New York. Bella heals much more quickly with her three oldest sisters around.
I was in denial of having to omit the New York part of our trip for probably the first ten days in the hospital. Even when my parents left, I thought, “she’ll be fine! We’ll adjust medication, and we’ll still go!” When she woke up, she was still out of it. She was nowhere near back to her “normal” self. Her doses of her three medications were much higher than they had been, and they had added a fourth. It takes time for the body to adjust to anti-convulsants.
Once released from the hospital, we stayed in Sioux Falls for a few days. We needed to let the dust settle before driving back to Las Vegas – shortest route, no scenic visits this time. So, my family, knowing how important New York was to me, helped make the best of it. We were all focused on Bella. We saw the falls in Sioux Falls, and we saw what a nice town it is. People everywhere we went were just so friendly. We did a little sight-seeing, and we spent time together, and we made sure we had some laughs along the way.
Sioux Falls was not the destination we planned. We missed a very special event, but those that were in New York know we were there in spirit. Sometimes the most well-planned trips can make unexpected turns. We can choose to let these things that are out of our control keep us down, or we can choose to look for the silver linings, and to appreciate all that is good in our lives. I choose to find silver linings. I choose to be thankful for my family. I choose to be thankful Bella has not had any serious seizures for nearly a year. I choose to believe we have this under control. This is part of our trip to Holland.