LIVING IN A BLACK BALLOON

Joy’s speech wasn’t improving, and the doctors mentioned there were general delays. I felt overwhelmed with grief and struggled to sleep at night. My energy was low, and my muscles felt sore. Despite trying everything I could to help Joy, she continued to fall behind her peers. I felt exhausted—so very, very tired.

I had no idea what was wrong with me physically, so I made an appointment to see my doctor. He ran a series of tests and diagnosed me with chronic fatigue. I had never heard of it before, and the doctor didn’t offer much explanation. I read some magazine articles about chronic fatigue and knew that wasn’t my issue. This was in the “olden days” before we had the internet.

While I was not aware of it at the time, I had fallen into a deep, debilitating depression. If only the doctor had asked about my personal life and what was going on in it. But he didn’t, and I didn’t know enough about depression to tell him.

I would lie in bed at night and think about going to the car shed…if I were to stuff the exhaust hose with something…I would wake up in heaven, and I would be at peace.

I wondered if God would forgive me if I took my life. At the time, I never shared what I was thinking with anyone. What would people think of me if they knew I had such thoughts?

I knew these types of thoughts were a red flag and that I needed to seek professional help. And that is exactly what I did.

I remember the night I made the decision to go for counseling. I said to Don, “I need to talk to you about something”. Standing in the middle of the bedroom, I said, “I can’t go on like this. I need help. I am going for counseling.”

Don’s response was, “I won’t forbid you from doing that, but I want you to know you don’t have my blessing.”

He KNEW how important his blessing was to me, so he used it to persuade me not to get help.

I said, “I don’t care what you think. I am going for counseling. I need help. I can’t go on like this.”

It was one of the first times I ever did anything my husband didn’t approve of.

Having a disabled child changes the dynamics of a family.

I remember the day I read that 80% of marriages crumble when they have a family member with a severe disability and 80% of the children in those homes end up with drug/alcohol problems.

After reading that I laid on the floor in the fetal position crying out to God saying, “Please don’t let my family be a statistic.”

Finding a well-trained counselor was really important. It was also quite challenging. Just like in any profession there are counselors who are fantastic and others who do more harm than good. I was fortunate to find the best of the best through a former pastor friend who trusted one particular counselor so much that he told me he wouldn't recommend anyone else. It didn’t take long for me to see why he held this person in such high regard.

Through counseling I learned that I was grieving. Up until now, I believed grief only came when someone died. But the truth is, something had died—my dreams for Joy were shattered. She wouldn’t be invited to birthday parties and sleepovers like her brother and sister had been. She would never drive a car or participate in scholastic sports. There wouldn’t be a wedding or children for Joy. And what would happen to her when Don and I passed away? The fear nearly paralyzed me. It’s fortunate I didn’t know what was ahead because each rejection broke my heart. What do we do when we feel a pain so sharp in our hearts that we believe it will break us? How do we keep going?

HOW DO WE KEEP GOING?

Maybe you’ve been there and know exactly what I’m talking about.

If so, I am so very sorry.

If you can’t identify with me then be glad…very glad you haven’t been there.

Every aspect of my life seemed to be affected by the grieving process.

I grieved the diagnosis.

I grieved for Joy and the fact that her life would always be struggle for her.

I grieved for my other children and what this would mean for them.

I grieved every time I gave up a church ministry.

I grieved the loss of friendships.

I grieved the loss of independence.

I grieved the loss of spontaneity

I grieved the isolation.

I grieved for Don and my future. There would be no time just for us.

I grieved for our parents. This changed their life as well because without their help I truly don’t know what I would have done.

People respond to grief in many different ways. Don did not experience what I did. We vividly showed how unique each person's grief is. I felt as if I might bleed to death, while Don focused even more on his work. He seemed to accept the situation, which increased my guilt.

It took my husband ten long years to understand why I needed counseling. He truly did not grasp the depth of my grief until he lost his father to cancer and a stroke in 1999. At that moment, for the first time in his life, he experienced grief and finally understood what I had been through.

I called a counselor to help him. It was the right decision. I understood the process—though not necessarily his feelings, since I hadn’t lost a parent—but I knew how debilitating grief can be.

During that phase of his life, part of Don’s grieving process was feeling sorrow for how badly he had let me down. He had no idea how devastating grief can be until he lost his father. I don’t know how many times he told me he was sorry, that he just never understood what I was going through.

In my next blog I’ll share an article I found on the internet written by Dr. Ken Moses explaining the struggle of a parent who has a child with a disability. This article is so accurate in its portrayal of the grief process I would think that Dr. Moses actually was writing about my life.

But, until then, if you are struggling with major life changes; if you are grieving the loss of dreams or the love of your life please know THERE IS HOPE… We will get there but it will take time…lots of time.