Lately, and around the holidays especially, our family has felt isolated and alone. As a family living with disabilities, we are already part of a segregated group, yet as Nick’s health continues to deteriorate we feel like we are moving
further and further away from people, even other families like us. That is what stings the most. There are many support groups out there—autism groups, Down syndrome groups and many more—but we do not fit into any of them. We need a “cluster of random issues” support group.
We used to go meet friends out of the house. We would plan for events and actually get to attend them. But as the years have progressed, and we’ve gone from having one child with a disability to having a second, and now the excessive hospital stays and medical support, time spent with friends and acquaintances has dwindled significantly. There are fewer invitations to go out with friends, and our lives are consumed with the care of the boys and just making life work.
This isn’t what we imagined, is it?
For families like ours, everything we do must work around the care of our fragile children. If the planning doesn’t align with all their needs, then we are
stuck. We are stuck on the inside looking out.
Every time we are back in the hospital, the calls and visits diminish, and the lonelier it becomes. Why do the calls and visits stop? Are people uncomfortable with the situation? Do they not know what to say? Are they fearful that they will get stuck in another conversation about medical equipment, nursing and procedures? (Believe me, we do want to talk about our children, but we also want to have adult conversations.) Times like these are when we need friends and families the most. Yes, friends can and have said the wrong thing at times, but it’s not their fault, and they have not even realized they said something that hurt. Just their presence and the bond of friendship helps the soul.
Nick still has a few friends that visit him weekly. They’ve graduated college now, but they love Nick so much that they continue to visit, and we pay them out of pocket to spend time with him. They love Nick for sure and would do
anything for him. Sometimes, I feel a part of it is for me as well. I have known them for a while, and when they come over, it’s also my time to visit with the guys and just talk about life. But as they grow up and attain steady jobs, their visits become less. I don’t fault them. Who would want to spend their little free time at our house helping with daily living skills and social skills? I cherish the few days we have together, because afterward, it is just us again,
alone in the house with nurses, equipment and procedures.
My inclination has always been to stay strong, act confidently and not show any weaknesses. It is how I am made and how I feel I can best support my
family. But I have learned that every now and then it is OK to show your vulnerability and ask for help. After all, if you do not take care of yourself, then you are no good to the people who require your help as well.
Nick has been given a shortened timeline here on this earth. Being able to spend each day with him is a blessing. There are times, however, that my wife and I want to plan a family vacation, but it is just not possible for us. So for now, we wait. We wait and plan vacations for when Nick is no longer with us because it is not a matter of if, but of when.
Sure, it is lonely, but we are thankful for the abundance of blessings we do have. It is a unique life, one we were not prepared for, but our family is strong. And at the end of the day, we have each other to fall back on. The loneliness spikes at times, but we work through it each day it sneaks in.
