We experienced many changes in our life because of our son Michael’s progressive rare disease, Schimke immunoosseous dysplasia or SIOD. As his physical changes started occurring, accommodating them became a full time job. It became clear to us that not only did we need to make changes in our home and in our transportation, but I would have to make changes in my employment as well. These changes were necessary in order to support Michael’s rapidly changing physical and emotional needs.
Quite honestly, there were so many changes that occurred during those years of diagnosis and treatment of his rare disease, it would be impossible to list them all but, one thing I knew for sure. Despite mounting uncertainty, I had to accept constant change as a way of life in order to keep some kind of balanced flow to my family’s life.
One morning, as I was explaining to Michael that I was about to start another new job the following week, one that would allow me to be at home more, he looked up at me and said, “Mom, are you having trouble holding down a job?” You can about imagine what thoughts were running through my head after that statement! All I could do was laugh, and reassure him that was definitely not the case. The real truth; I was changing jobs again to be more readily available to him as his body was progressively failing, requiring the use of a wheelchair, and his day to day life was becoming more difficult.
Many parents are packing up their sons and daughters for college this month, recounting those same types of decisions made with deep parental love. Choices that have required great sacrifice yet were made somewhat effortless, simply because parents love their children and desire to provide an ease to some areas of their life. For parents of children with special needs, I would imagine the process of sending a child to college is a very unique and challenging type of change. I recall a time when we sent Michael to an adapted athletic summer camp for a week. That was for only one week but none the less, it demanded a level of trust and letting go process that was somewhat overwhelming.
These parents of college bound children are now entering into a new season of life, often referred to as “the empty nest”. What appears to be a new season for mom and dad is really just going back to where they began, hoping they remember what it was like. They have the opportunity, maybe for the first time in almost eighteen years, to apply a fresh new focus to their life. Inadvertently, it can lend confidence to the many changes occurring for their children’s, sparking renewal for everyone.
As a mother, it seems as if it was easier to make changes that were centered on a need for one of my children. Now, in this time of my life, I find it is much more difficult to make changes that are centered on me. Walking on the bumpy road of grief I am learning to place a new value in the ways I take care of myself. By it, I am teaching others to do the same. It’s a daily search for that healthy balance between meeting the needs of others and my own, one that is centered in grace. Seeking that balance helps me wear the changes I am experiencing in my own type of empty nest syndrome.
Addressing my needs first allows me to give my best self to those around me, equipping each of us with what is required to keep moving forward, even though, changes have occurred. It’s a balanced order, I admit, that is not easy to change as a mother but is necessary especially as children leave the nest.
I might have had some trouble holding down a job in the past like Michael once said. But, I can honestly say it was worth it, any mother would. My family often says that we don’t like change, but now we say, Be the Change.