There is not a day that goes by anymore that I do not think about how we got to this place. I mean, this place of uncertainty, fear and feeling a bit hopeless. I am always judging myself, and always trying to be "better". Years and years ago when I knew something wasn't right, but no one was listening to me, and they all believed that I was reading too much into things, I judged myself. I thought I was fatalistic and a bad parent. I did press on, though, and the part of me that would not let "it" go, kept me reading and reading. I probably read 150 books over the course of two years, trying to figure out what was wrong.
As a homeschooler, I got to be around my son all the time. This, of course, had good and bad parts to it. As I read about kids with mood disorders (whatever the kind) that grow up in a family of "high expressed" emotion, it isn't positive for them. Yet, knowing my son as well as I do, helped me to really look in depth and find what might be wrong. I have learned that "gut instinct", "intuition", "discernment", whatever you want to call it, is the key to success in any endeavour. Even amidst the conflicting advice, I persevered in the way that I knew how, and I feel that I did not let my son down in this way. If he had not had a neuropsychological evaluation at age 10, we would have nothing to compare to now, to see how far he has deteriorated, and it might have taken longer to get on the right track. I say this, not to be boastful (certainly nothing to boast about), but to remind everyone that it is possible that a mother, who spends all of her time with her child, might know better than doctors, friends, peers, specialists and therapists.
When one thing doesn't work, try another, and another, and another. There are times when answers are not forthcoming. Keep trying. Don't give up. We are the only advocates our children have at these ages. It is difficult. Heartbreaking. Chaotic. I would encourage every parent who has other children along with a mentally ill child, to create boundaries. Do so for yourself, your other children, and for the ill child. It will save a lot of grief and your sanity.
One thing a therapist friend of mine mentioned to me, differently than I had thought of it, was that my son has now been in the hospital for 37 days. He is also on a "last resort" medication in Clozaril. I have been dealing with all of this, at home, previously. Now you know why I say to create boundaries. You probably can't, unless you have experience with having a mentally ill family member, imagine the devastation left behind.
I labeled this post: Looking Up. I am doing a lot of that these days. I am looking up toward God to guide me in my decision making and to help me to persevere in the midst of this crisis. It's funny (not really) that therapists keep calling this a "crisis". One thing that gets really skewed is tolerance and expectations. I was, what Dr. Henry Cloud calls, "Acclimated to the misery." Yes, I expected every day to be difficult, and it was. I wasn't taking responsibility in the way I should have, to say, "This is more than I can handle." I have always feared being seen as a parent who is lacking. I wanted my kids to know that I was there and always available to them. I made a mistake. By not setting necessary boundaries in our household because of being overwhelmed, exhausted, and hopeless, I created a very unsafe and miserable environment. I relied on my own desire to "do it all," and now, the other children are paying the price for that decision. I'm not feeling sorry for myself, I'm just taking responsibility. I am also committed to not letting it happen again.
It's hard to know the right things to do. There are indications that my son's type of illness, and the way he presents may suggest a very poor outcome. What I have to do now, is face the reality that things might not get any better than they are now. I have to be realistic, and take in the evidence and what is being said. But I can also pray. I can pray that whatever happens, my son will be held through all of this, and we will be too. I also have something else that I am striving for. No matter how bad the circumstances, I need to keep looking up.
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