Our son Joey was almost 3, our daughter Kristina was a newborn, and my post-partum hormones were out of kilter. My husband, Joe, and I had just learned the extent of Joey's diagnosis and were feeling alone; I remember spending the better part of two weeks crying. I was saddened that he might never walk, talk, or be able to learn and longed for someone to listen, give hope and not give the "pat" answer that was easy to say but hard to hear.
Caring for our special needs son required a lot of time and effort, and I had to deal with Joey's illnesses, allergies (requiring hospital visits), seizures (that we didn't yet recognize as such), multiple therapies, trips downtown, never-ending questions and life with a toddler who couldn't walk or make his needs known.
Much of the time my husband and I felt alone. We were physically worn out, emotionally isolated and spiritually depleted. We had great help from Joey's grandparents, who loved him deeply and accepted him fully, but in other circles we often felt people didn't know what to do or say. Occasionally, people asked, "How's Joey?" but they seldom, if ever, asked what life was like for him or us.
We were rarely asked to others' homes. Joey was never asked to come to someone's home to play. He didn't fit in with others his age, and we sensed that kept us from being included in some social gatherings. We wondered whether others thought they'd have to "get involved" if they got too close to us. In fact, we remember only one time we were all invited to someone's house for visiting and dinner. We were so excited!
Joey could not tolerate noise and commotion. Very sensitive to sudden noises and movement, he would start screaming, hanging all over us and generally making going out not worth our effort, much less worth someone else's effort to invite us! We didn't blame others, and no one ever said we were excluded; but for whatever reason, we often felt left out. Joey's needs diminished our desire to go into those social settings, and when we did, we were often embarrassed about the way he acted, thinking others would consider us bad parents, unable to control our child. He couldn't help the behavior caused by brain malfunction, but we had difficulty separating his behavior from how we felt about it.
When Joey was young, we lacked the freedom to do some of the things our friends and their families did. Now that he is an adult, we still cannot simply pick up with our "empty nester" friends for dinner together or accept other impromptu invitations. We've never been able to go out unless we had someone we trusted to come and care for Joey. His care is different from what our girls ever needed. Sometimes we felt trapped. We didn't feel the freedom to talk about it either because we didn't want to hurt others' feelings. We didn't want others to feel obligated to invite us over or to include us, knowing we would likely have Joey with us.
If we could change one thing about how we handled the challenges with our son and our parents, we would have been more vocal. We would have expressed to others exactly what was happening to our loved ones and to us as we cared for them. As our friends had grandchildren with special needs and cared for their aging parents, we discovered that they were shocked to know we had gone through the same things they were going through. Some friends were good listeners, but in looking back, we can see that we tried not to overdo it and perhaps "underdid" it.
Others will not understand what we are going through unless we tell them. Even close friends are shocked that we still shower and shave Joey as a grown man, that he can't stay home alone, that he continues to have severe behavioral issues from time to time and that we still experience times of great frustration in trying to deal with him in a positive and Christ-honoring way. As a result, we realize we should express ourselves more clearly and thoroughly, and probably should reach out to ask for help and even continue to do so. And when others offer to help, we need to be honest and practical in allowing them the privilege.
Here are some of the ways we have reached out to develop relationships:
We want others to sense from us that we are willing to work together, not just have things our way. We want our participation in a relationship to be "life-giving," not "life-draining." In our desire to balance those fragile areas of relationships, we want to love like Jesus and not be indifferent to others. Sometimes that means protecting ourselves and our family, and other times it means giving above and beyond what we think we are able. In both instances we seek the Lord and depend upon Him for guidance and direction.