Making the Best of It

"That is a very positive attitude" said the home care pharmacist almost congratulating me. Had this woman been in front of me, she would have seen me holding back the tears.

"We'll have to make the best of it" had been my reply to her question about whether adding two more hours of TPN a day would create a problem for us. She knew that at 18 hours a day we would have to disconnect Caleb's central line sometime in the middle of the night. We will indeed have to make the best of it.

There is a story about Piglet inviting his friends for a snack of haycorn muffins. With so much work ahead of him, he opens his cookbook, flips through the pages, and carefully reads the list of ingredients. But, alas, when he checks his cupboard there is "No flour, no honey, and worst of all, no haycorns!"

With a basket over his arm, Piglet sets out to gather what he needs. As he finishes filling his basket with haycorns, along comes Tigger and bounces all the haycorns out of the basket. "Oh dear," Piglet says with a sigh, realizing there is nothing to do but to gather the haycorns all over again. "I'll just have to make the best of it." The story goes on to tell about other challenges Piglet faces, and it has a happy, though not perfect, ending---Piglet and his friends end up having "Make-the-Best-of-It" cake instead of muffins.

Ever since reading this children's story I have been pondering Piglet's wisdom. Making the best of things does not come naturally to me. I am a perfectionist. I am a controller. I get stuck and brood over things. I want things to go smoothly—no wrinkles, no detours.

For a while, it seemed that life was running smoothly for my son Caleb. Although his health has never been great, his long list of health problems seemed manageable. I could live with them. We had found a rhythm.

Things have changed. I know there has been a progression, yet it feels like change has happened overnight. From being tube-fed, he went to being TPN-dependent. From not needing many interventions for years, now we are constantly having to make decisions about procedures, tests, and seeing new specialists. The specter of death—even if it is years from now— is once again lurking in my house. And it fills me with anxiety and sadness.

So how do I make the best of our new reality?  How do I make the best of it when I know that the TPN which is sustaining my son's life will eventually damage his liver? How do I make the best of it when his cares have multiplied, and I am forced to act more like a skilled care nurse than a mother?

My tendency will be to look for perfection. How do I perfectly make the best of it? Sometimes I have mistakenly believed that making the best of it must mean that I should be able to get up every morning and declare, "I will make the best of it today" and have the effect of this proclamation last the entire 24 hours. Sometimes I have wishfully thought that making the best of it must mean that I will feel no anxiety, no worry, and no stress. I have misunderstood it to mean that I should achieve a level of spirituality that will make me invincible, capable of withstanding every blow without giving in, without doubting my faith, without getting angry, without feeling bitter. But, no, that is not what making the best of it means.

Making the best of it means slowing down, remembering that ---first and foremost--- I am a mother, and Caleb is my son.

Making the best of it means that even though, ideally, I should start his TPN as soon as I get up at 6:00 a.m., I instead change his diaper, pick him up, and cuddle with him in the couch for as long as Caleb himself and time will allow.

Making the best of it means that when my son is up at 2 a.m., and then at 4, and then at 5, and I am running out of options to comfort him, I still choose to sing to him.

Making the best of it means accepting the ups and downs of his condition. He is OK one day; he is not OK the next.

Making the best of it means accepting that my spare moments are few and short, and savoring them.

Making the best of it means looking at the positives, like the fact that my son has regained strength.

Making the best of it means learning to be grateful for what I have, but also for what others have, lest I become envious.

Making the best of it means that at every frustrating moment, I choose not to get stuck on what went wrong.

Making the best of it means forgiving myself because I am going to fail at making the best of it.

But, perhaps, the best definition of making the best of it is learning to let go... to let go of the dreams as I dreamed them, to let go of self-imposed expectations.

All this is easier said than done. The truth is I would prefer not to have to make the best of it.