Grief and Hope

It is my experience as the parent of a child with developmental disabilities that my husband and I have experienced grief and hope in a repeating cycle. I don't think our experience is unique.

When we adopted Alan, we were idealistic and believed that through sheer force of will and unfailing love, we could help Alan overcome some of the challenges he faced. Many times we would hear of a person who was able to lead a very independent life with the support of caring parents/family. We believed God had entrusted us with this beautiful child because He was going to show us what to do for Alan, and that this would lead to wonderful things. Of course, it DID lead to wonderful things, but not what we had envisioned. As Alan grew older, his disability was an increasing challenge for him and for those around him. School was a nightmare more or less. My husband and I shed many tears over the frustration of trying to fit Alan into the limited resources the public schools had to offer. We mourned the ideal Alan - that little boy that would be able to communicate with others and be mainstreamed into regular classes - and held on to hope that the real Alan, with all his challenges, could find a setting that would be best for him. I don't think we ever found the ideal place, but we came as close as we could. However, it was a struggle his entire school career.

As a young adult, Alan became difficult to handle at home with violent outbursts, putting his fist through walls, cursing at us, and at anyone who tried to direct him. We placed him in a three week psychiatric program, which gave us a breather, and also helped doctors find a medication combination that was of the most help to our son. We came to the realization that we had many more challenges ahead of us, and that Alan was not adjusting to life as an adult easily. We grieved The "grown up" Alan we had envisioned, and embraced hope of an independent life in a group home.

He seemed to thrive for the first few years in a group home, but gradually his behavior and attitude became problematic for him and the people with whom he lived. Alan began having seizures about 8 years ago. We believe the altered brain chemistry that led up to the seizures was the cause of his behavior and attitude problems, but of course do not have any hard proof of that conclusion.

When Alan entered his late 20's and early 30's, there was a new kind of grief. We began to see friends watch their children graduate from college, begin working, marry and start families. And even though it seems a little petty, we mourned the man Alan would never become. Sometimes we still do.

Nevertheless, hope is the state in which we live for one reason: We are confident that the God we love and trust, who placed Alan in our lives, has His hand on us and on our son. God led us to Alan, and has put the hope in our hearts that Alan will have the most independent, fulfilling life that is possible for him. We trust that if something happens to us, Alan will be in God's hands, which is the safest place for him.

Our son is the light of our lives, and time spent with him is a joy that we look forward to every week. He is happy, and knows he is loved. I am sure we will continue to experience times of grief, but hope always wins out.


  1. Very moving post.
    Favorite line: "We mourned the ideal Alan."
    I can relate!

  2. Life has turned out to be a lot harder than we thought it would be.


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