#10 The reality of suffering


A wise friend told me several weeks ago, suffering has an expiration date. That statement made me angry for weeks. I didn’t understand it at all. Who could turn a blind eye to suffering? How could deep pain turn a person off from someone they loved? After being home for a month, I understand the statement. There are a select few who remain faithful to helping us. We are in the in between. Where life has no purpose other than constant vigilance for the next problem. This is an exausting state. What should one do? We live in expectation that today’s crisis could signify something greater. Is it the beginning of the end? Or is it a bump in the road? We as parents live this reality moment by moment. Most observers find it redundant and irritating. Most people at this point are observers with compassion removed. Who but us, could live in this very real limbo for long? There is an expiration date on suffering…very real truth today….

Today, there is a new crisis. Headaches not relieved by medication. Twice in two days. What on God’s green earth does this mean? This is a sign that the doctors warned us was a problem. *sigh* just like balance being off. That happened last week. We saw the neuro oncologist who was unphased by what she saw, even though we were warned to look for it. To be a parent and not know what the next crisis looks like is utterly exausting. I can not begin to tell you. Every day is torture and filled with such attention to detail that all generalities leave the focus quickly.

My house is a disaster. Laundry goes undone, cleaning dosent happen, cooking happens once a week, clutter accumulates, the main bathroom is inoperable and we don’t care, memories are very important, and we feel as though each week must contain nuggets of beauty. Each week is measured carefully, necessity versus play and fun. Along, of course, with mitigating crisis.

Crisis comes in many forms right now. Mostly in the form of a list from the doctor of what to watch for. We must put on good faces when we see worrisome problems arise. What of this headache not relieved by medication? Is it simply exaustion? What of his weight loss? Is it a finicky 4 year old? Is he losing his appetite from the cancer? What of this stumbling and falling? Is it brain dammage? Is it a bad day? Is the tumor growing again causing pressure on his brain? What of this screaming that occurs 10 hours a day? Is it pain unchecked? Is is brain dammage? The emotional volitility is exausting. My daughter is worn and needy. What do i do about that? I can not contain this child with cancer and brain dammage. He is often simply in need of occupying my lap for hours at a time. I am happy doing that, as my house is a shambles. He is happy when we go out. Everyone thinks he looks great. And he does, for measured amounts of time. I prepare for every outing with plenty of rest, placating needs, and pain medication. That this child should continue to be happy when he engages with the world. I prepare to take the brunt of his neediness and trouble, that he can have a good time. I weigh every need he has with the pressure of my functioning home and family. Needless to say everything but him has come last. We are a mess….

And the few loving people that keep helping us are a bit worn from baring our burden along side of us. God bless them.

We are in the in between. Where everything matters and it is very lonely. We continue to have faith that God’s will be done. We struggle with our individual fears and shortcomings. Things have become very individual at this point. Every ideal we have has gone out the window to a small suffering child’s desires. We have real scary crisises every day. Some become real problems, some are not issues in the end. But, we are called to watch for everything and expect nothing.

Yes, suffering has an expiration.

Forgive the spelling mistakes….

With God at the Helm, Faith

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