Holding On, Letting Go continued…
- Glorian talks about the anger disappointment and sympathy following Jeff’s birth but how those got put on the back burner due to having two other boys and meeting Jeff’s needs.
- Glorian tells of how their family at first was determined to fulfill their obligation to raise this child to not a “burden to others”.
- She talks about how their hearts got heavy thinking about “what could have been” with their plan to have their children close in age so they could do all those fun things together that they knew people did as a family.
- Friend of their sons became well acquainted with Jeff as they spent time in the home, but again, there was a wishfulness that he could interact with them.
Well, they did do them…a little more slowly and sometimes with modifications.
- Glorian tells how they as parents did “too good a job” of anticipating Jeff’s needs when he lived at home. She admits how it may have prevented him from becoming more independent.
- Glorian talking about people’s reaction of how “lovable” children with Down syndrome are and her own experience of Jeff being physically aggressive to his grandmother and cousins.
- Glorian talks about how the need for respite care started, at first occasionally, then more regular when it appeared that it was a solution that worked for everyone. How Jeff was eventually invited to become a permanent member of the LBSA family.
- As a result of Jeff being at LBSA his life has improved. Now, instead of “Why does Uncle Jeff make those noises?” We have graduated to all of us sitting in a circle in the living room with those nieces and nephews dancing to lively children’s music and Jeff sitting in the circle of noise smiling and rocking in place.
- Thankfully, the programming for Jeff at LBSA introduced a treatment plan which has reduced physical aggression and continues to keep identifying the underlying reasons.
- I can still find myself wishing for more for Jeff, but it helps a lot to get reports that he has had an enjoyable and/or worthwhile experience in his day, that he is well, and that has had some personal touch or company for a few moments in his day, and that he knows us when he is with us.
- At church, I still cannot sing ”Children of the Heavenly Father”, because I get too emotional—not because I am sad, but because, in my faith’s journey, I know Jeff, as a child of God, will be whole some day. Ron and I are forever grateful for the help that other give in making Jeff’s life the best it can be for him.
This scenario can and does happen to families every day: the dilemma of how to care for a child with developmental disabilities. Parents have to pit their instinct to nurture and protect against the realization that outside help will always be necessary. They will forever be in the debt of strangers to help their child who will eventually become a vulnerable adult. Their lifelong challenge becomes how to achieve the balance between holding on and letting go. At Laura Baker, we are here to help families achieve a balance that works for everyone.
