This is a complicated issue, not only to write about but to think about. It is certainly complicated to figure out what to do about it. It is both a practical and emotional matter. In fact, it is so complicated that I am not sure how to title the actual subject matter. Please stay with me while I try to explain.
When a person becomes a parent, their child's needs trumps theirs. Mom or dad may be sick, but their toddler needs to eat, their preschooler needs attention, their grade school child needs help with homework. Mom or dad does what needs to be done to care for their child. As that child gets older, their independence grows. Mom or dad is sick and they can take a nap because their child is capable of knowing when to wake them if they are needed. Time goes on, that child ages, and now that child is able to stay home by themselves. Mom and dad want to dash out to the grocery store or the bank and they can. Their child is fine to stay home for a short period of time, gaining confidence in being able to be self sufficient. Eventually, that child is able to stay home alone for longer periods of time, overnights, and eventually are able to move from their parents' home into their own place.
So. What happens when a child needs constant supervision? The child get chronologically older, however the ability to stay alone, even for a short period of time is not a possibility. There are children who do not go through those same phases leading up to independence because that day is not going to arrive. The parents may have assumed that certainly once their child was 16-18 (if not younger) they could come and go as they please. Want to have dinner out? Let's go. Want to take a walk in the park? Let's go. Want to visit the next door neighbor? C'mon. Want to spend a romantic, private weekend together? We've off! These same parents have dreams of retirement. They may have put away money just for the purpose of being able to quit working and spend time together doing what they dreamt about and talked about during their marriage. Perhaps they considered moving to a different area of the country, traveling the world, downsizing and decluttering. Maybe they thought they'd have the time to spend reading, talking, and just being together. Their main focus would be each other, while of course remaining available to their adult children when they were needed and being a useful member of their community.
What if there was a situation that came about, where that very couple, with those very dreams, had to change course. We are one of those couples. For us, those things are not going to happen. We are both in our mid 50s and we cannot just decide to zip out for dinner, to take a walk in the park, etc. We are pretty used to these sorts of things, so it's not actually that big of a deal. We've adjusted to scheduling around our gal and making sure she has proper care on a day to day basis. It's often tricky but we get through it. Our weekends are pretty much scheduled around her (and usually by her) and that's fine. Even if RJC wasn't living with us, we would want to be close by to keep an eye on her safety and happiness. We would always want to be in control of her finances and make medical decision for her. She is ours, regardless of where she lives. At this point, she does live with us and we do not foresee that ending any time soon.
The issues surrounding our aging and our potential retirement has been on my mind lately. It's really not all that far off (relatively, anyway) and I am tired at the end of a day. I need a plan for our future. Not just my husband and mine, but my daughter's as well because her future directly impacts ours.
We have lived in this same town for RJC's entire life. People know her and recognize her, and she knows and recognizes people in many places we go on a daily basis. She has favorite places to visit, activities she is involved in, peers she is comfortable with, and most importantly, she currently has a budget for her Adult Day Program. We cannot move out of state because this is where she is comfortable, and this is where she has services.
If we were to move, and she were to come with us, we would be taking away her entire support system. She's been involved with the same Special Olympics team for 15 years. She has friends at Friendship Circle who she is comfortable with and has known for 8 years. She has the farm which has a become a huge source of both fun and where she learns important life skills. She knows how to get places, where she likes to eat, where she prefers to shop, what movie theater(s) she prefers, and even where she likes to sit in various friends' houses. This type of comfort is what keeps her high anxiety in check. She has even been know to feel relaxed. She receives services from the state that allows her some time out of the house to spend with peers. This is truly something we are grateful for and she has come to count on this as part of her routine.
My husband and I have talked endlessly about the future. Our dreams we had for moving, traveling, privacy, and spur of the moment decisions are not ones we have given up on, but we feel them fading away. We chose to have our children and we have one child who is stuck in perpetual childhood. Though we are chronologically aging, we parent our older daughter the way we did when she was a young child. It is necessary in order to keep her safe. It is difficult to not feel a huge sense of loss. Yet when I let myself even consider feeling bad about the loss of our dreams and the need to figure out some other way to find a way to be happy in our older years, it feels like I've betrayed my commitment to our daughter. I have never regretted our life as a family. We've gone through rough times to be sure, and I've wished we didn't. But never, for one moment, did I wish we did not have our girl in our lives. And I still feel the same way. She is a gift, just like our other daughter, and we need to figure this out.
We need to figure out how to grow old together as a married couple. We need to figure out how we are going to find the right living situation for our daughter so that we have some privacy - BUT that situation must also meet with my very strong personal need to be nearby. That, in turn, means giving up the dream of living in a warm climate or near family. And that, in turn, means finding a way to be completely at peace with the life we will have, which is not the life we once envisioned. And I suppose that can be much like going through a grieving process.
Perhaps I am at the beginning of that process. Just the fact that I've been thinking about it, talking with a close friend or two about it, and of course, talking about it with the person closest to me in the world who is walking the same path. I'm not sure when the whole acceptance thing will be reached. Maybe once there is a plan? Maybe once the plan has been implemented? What I've noticed is that not many people talk about this openly. It's a difficult topic and my thoughts on it literally change on a daily basis. I can go from hopeful to feeling complete despair in a matter of minutes.
Whatever options I have thought of, it always comes back to sacrificing our own desires to do what we believe is best - not for us, but for our child. Because though the world may think of her as an adult chronologically, we know and live with the reality that she is developmentally a child. It is with this knowledge that we talk and plan and rethink and talk some more. Hopefully in time we will find new dreams for our future that fit perfectly with the dreams we have for our daughter's future. Then we can grieve and heal and move on.
All of us.
