Yesterday I sat on a panel of parents who have children with mental illnesses. One of the mom's, whose son is 30, said something very profound. She said, "Sometimes I get tired of grieving."
I started to think about grief and how it is a cycle that supposedly has a beginning an an end. You pass through the stages of grief: Denial, Anger, Bargaining, Depression, Acceptance. It may take several years, but you get there.
Unless you have a child with special needs or mental health issues. Then you just start again every so often. A new loss presents itself weekly or monthly and it causes us to go through the cycle. It might be the loss of a dream that your child could learn to talk as a toddler, or attend kindergarten with kids his age. Maybe it was the loss of a child you cannot make friends in grade school, or who can't make it through the first semester of band in 5th grade even though he really, really wants to play. it could be watching your daughter sit at home the night of her first middle school dance, or seeing your son sit along the sidelines at youth group at church.
And then once childhood for everyone else is over and kids are going off to college a whole new set of grieving for "what might have been" come pouring over us. Young adults in jail, or failing classes, not graduating, getting pregnant, abusing alcohol or drugs plague us as we watch our friends' children having success-- graduating, going on to college, having a healthy relationship, getting married to a successful spouse, providing them with grandchildren. And we grieve all over again.
Sure, over time we learn how to accept the pain and it may be less intense at times, but loving and parenting the mentally ill is a very difficult road.
So maybe if you come across one of us sometime and we just don't seem as bouncy or as resilient as we are other days, it may just be that we are grieving about something that may not have anything to do with that particular day or hour of our lives. It just may be that for some reason we have tuned into that slow sad melody that plays in the background of our minds like elevator music, reminding us that it will never be the way we dreamed.
So true. I grieve over and over again for my daughter. You are so right in that with every phase in life, another mourning process follows. Right now, we are going through puberty. Not just her, but the whole family gets to go along for the ride with the bras and the periods because a child who is mentally ill and developmentally disabled keeps no secrets and does not understand fully what is private information. Next year, I have to start bracing myself for when her classmates get their driver's licenses because she will never be able to but will not be able to grasp that someone who is developmentally six but age 15 cannot go to driver's ed. How can she drive when she can't even be left alone...? I guess I am pretty good at advanced grieving as well ;)
ReplyDeleteVery good post, Claudia. Even while parenting our first bios, all healthy, "normal" kids, I struggled and hurt for my kids when they didn't measure up with the top students/early achievers. Our oldest was a "late bloomer", and being a first time parent, it was hard not to compare her with others in her class. So if it's true for kids without mental illness or other exceptionalities
ReplyDelete(#3 college daughter majoring in special ed prefers this term to special needs), how hard must it be when you know it's not just a matter of time, but that things will never quite be the same for your child. I grieve and I worry for how hard it is for our last daughter to learn academics in her new language, how far behind she is. But I believe for her, it's just a matter of time...lots of time.
One of my best friends has a daughter 22, the same age as our
#3. They discovered when she was about 4yrs old, she has a genetic condition that prevents her body from processing protein, so amonia builds up in her body. This caused seizures, and she suffered some brain injury around that time, before they discovered how to manage her diet. I've struggled myself, knowing that as our daughter achieved success in school, sports, went to college on sports scholarships, ect...their daughter was never going to reach those milestones. She is the sweetest young lady, now graduated and living in a group home and working. She seems about the age of our youngest daughter (13yrs)in some ways, and in some ways not quite. My friend and her husband are fantastic people, accepted things as they were, parented her so well, seem to handle it all in stride. But I can only imagine the times they have grieved, as they watched her classmates and good friend's daughter reach milestones.
Good reminder to be watchful for people we can help or encourage along life's way.
Nancy No-Blog
I think the whole "stages of grieving" thing only applies after something is over, e.g. a marriage breaking up. It's not relevant to an ongoing stressor such as disability.
ReplyDeleteI wondered why I couldnt seem to get over the loss. Why when my younger daughter hit milestones "on time", I grieved again and again that Gideon missed those marks. Even though he did get to some of them later. I grieve again as I see him grow taller than older siblings(he has overgrowth). Thanks Claudia for writing it so well.
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