The Journey of Life Without Sheila Continues
In a few weeks our family will be thrust into another first. The first year deathiversary. It is an anniversary of sorts. Not one I look forward to, but one I am forced to acknowledge. Why mention it now? The death dreams have started all over again.
Between February and August 2023, I had four ‘Sheila death dreams.’ The first and the last were the most shattering, but none of them were comfortable or welcome. The impact of the most recent ones, the ones that are after she died are, well… meh. Some of the recent dreams also included Sheila getting lost, I can’t find her anywhere; or Sheila running away; Sheila being very ill, and I am driving her to the hospital, and she dies in the car before I arrive at the hospital. But none of them have had the impact they had before she died. This time around I knew, even as I was dreaming, that Sheila was already dead for nearly a year.
The journey over the past eleven months has been like nothing I’ve experienced at any other point in my life. It is not a journey for the faint hearted. There have been times when I have felt like this was the worst year of my life and then I remember other rough patches in my life… Is it really the worst, or was maybe that depression while in nursing school the worst time of my life? No, maybe the depression I suffered in my late thirties. No, definitely this past year. But I have laughed and smiled and felt joy, too, this time around. The other low periods were a time of darkness that eventually lifted. This time around I have missed Sheila… every single day and in the first months I was sad a great deal of the time, but I haven’t existed in the darkness of depression.
I have come to realize that there is no reason to compare one time of loss and grief with another as collectively they are all part of the life-long journey. This past year’s Sheila induced journey is just one small part in a journey that started the day I was born.
When I look at the total Sheila portion of my journey, that started the day she was born, there were many more days of laughter and joy, than sorrow and grief. I have indeed been blessed by our shared journey.
The journey that started 37 years ago was not always smooth. There were some mountains to climb, rivers to cross and rocky roads to travel. Sheila did not talk in sentences until she was 11 years old. She signed, she made up gestures that had clear meanings that we all recognized, but sometimes she would get frustrated and angry because some of our guesses didn’t come close to what she was trying to communicate.
She was mischievous and could get into trouble without even trying. She was an eloper, an escape artist, a runner. We had to put a gate at the top of stairs to keep her from going downstairs in the middle of the night when she was little. She, like any young child, learned by exploring. She had no fear and no sense of time. What do you mean, I have to sleep when it’s dark out, was her mantra.
We had to put locking mechanisms near the top of doors, high enough to be out of reach so she couldn’t escape outdoors. We learned this the hard way when the girls were about 9, 7 and 3. Forrest had gone outside to do some yard work. Andrea, Colleen and Sheila were inside playing. I was working on a Down syndrome support group newsletter. Sheila eloped. As soon as Andrea realized she wasn’t with me, we sprang into action. I asked Andrea to look around in the house keeping Colleen in her sight.
I went outside, called to Forrest to see if he had seen her outside. Since he was working in the front yard, I figured if she had gone that way he would have spotted her. He stopped what he was doing, and he went in one direction through the woods behind our house, while I went in the other direction. Fortunately, he spotted her about half-way between our place and the neighbors. We live in the country with a fair bit of woods between us and anyone else. If we lived in the city, it would be the distance of half a city block.
Once the locking mechanisms were in place on the screen doors, we had to make sure we communicated that we were leaving, would someone set the lock. We also had to put a fastener on our bifold pantry doors. These worked well until the day Sheila realized that if she dragged a chair to the door and climbed up, she could just barely reach our locks. We had to disabuse her of that notion right quick. I would pick her off the chair and sit with her on my lap. Then I would tell her that the lock was to keep her safe. It was a reminder that she cannot just leave the house without letting us know she wants to go outside. It took quite a few reminders, but she eventually learned that we would let her go outside to play, but she had to remain in the yard and not go into the woods where we could not see her.
Even before this, when Sheila was 6 and Colleen was 2, they were play buddies. Balancing carving out time and attention to work on the aforementioned newsletter and still supervise Colleen and Sheila was another learning curve. I wanted to give them space without hovering over them constantly, but man, could those two get up to trouble in a hurry. I learned to pay attention to their noise level. As long as I could hear them, all was good, but if they got quiet… run. It took one incident of hair trimming and another incident of using permanent markers on their dolls for me to figure out that one.
Then there was the day the school superintendent came to call. Our school district was trying to raise money for an addition to the junior/senior high school building in order to move the sixth grade up to the jr/sr high. They wanted to create a middle school with 6-8th graders in the newer part of the building and leave the older part of the building to 9-12. There would still be some shared facilities such as the lunchroom and the gymnasium, but they were hoping to create a little more separation of the younger and older students.
I had put the superintendent on the Down syndrome newsletter mailing list as I wanted him to understand why inclusion was so important to many parents of children with disabilities. This benefited Sheila in so many ways, but he also knew I had some skills in creating newsletters that draw the reader in. He asked me if I would be willing to help him put together a newsletter that focused on the building project. Our basement was set up for a place where the girls could roller skate and do other gross motor activities in a contained space. Andrea was going to keep the girls entertained down there while Mr. D and I worked on the newsletter in our living room.
Forrest had drained old motor oil from something and unknown to me, it was right where Sheila would find it. She had climbed up onto the chest freeze and gotten the container opened and poured it all over herself just has Mr. D arrived. I had Andrea calling up the stairs, “Mom, I need help. Sheila is covered in motor oil,” right as I was greeting Mr. D. He laughed; I laughed despite wanting to curl into myself. I pointed him in the direction of where my computer and desk resided and told him I would be right with him.
I wrapped Sheila up in a large swim towel that happened to be handy and got her up into the bathtub. The girls ended up having an impromptu bathtub/playtime. First getting the worst of the oil off Sheila, then she and Colleen playing in the tub while Andrea supervised. I came downstairs and assisted Mr. D with the building project newsletter layout. We talked about the day-in-the-life glimpse he got of raising Sheila. He was wonderfully supportive of why we wanted her in district for her schooling and he was a champion to all three of the girls while he remained the superintendent.
Sheila was still a non-verbal child at this time. He witnessed the extra layer of challenge that created for us, along with her inquisitiveness. Since keeping a child with a disability in district can be one of the stumbling blocks, or rocks in the rocky path, he just moved that rock out of our path.
No, life was not all light and happy every moment with Sheila, but love was a constant.