The D Word
Today has been a rough day. Patrick has been crying and retching most of this morning. His bowel sounds are almost non-existent, and he's retching even when there's nothing in his stomach. We're reducing his feeds down to 10 mls/hour, and he got an extra dose of lasix to try to reduce his fluid retention. His skin is more mottled, he's cooler, and his oxygen was 82--down from 88 yesterday. We've increased his oxygen from 4L to 5L, but my guess is we will have to increase it further. The hospice nurse called the palliative care doctor and we all reached the same conclusion--the oxygen flow to his stomach and bowels is likely reduced from the compromised heart function. If the retching doesn't stop with the reduced milk, we'll switch him to pedialyte for some nutrients. The nurse is also stopping any meds that aren't essential that might aggravate his stomach for 24 hours to see if that helps. I think we've officially started the descent. The question is: how long do we have left?
In the midst of all of this, I discovered that I haven't been coping with Patrick's situation as well as I had thought. Yesterday, it was brought to my attention that I will still somewhat in denial. Not consciously, of course; maybe I was just protecting myself. Whatever it was, it's gone now. I have come face to face with the truth. See, yesterday, my friend and I were talking and I told her how much I hated seeing Patrick in pain. She said, "No one should have to have teething pain when they are dying." The word hit me like a grenade in my chest. I wanted to deny it, but I couldn't. Sure, we had begun planning his funeral. Yes, I purchased a black dress for when the time comes. But that word--dying--I had never allowed myself to use it. But now it's out there, and I have spent the last 24 hours trying to digest it. The gnawing, painful black hole at the pit of my stomach tells me I am still wrestling with it. My heart feels like it is breaking open. My ability to cope is waning. I want to drop all my responsibilities and opt out. I want to hide under the covers and sleep all day. I want to self-medicate with red creme soda, skittles, and donuts.
No one should have to watch their 10-month-old child die. My mind rages, and I want to scream, "It's not fair!" Others have voiced this lament aloud on my behalf. But the still small voice inside me knows better. I was never promised fair, or even good. I get the same thing everyone else does--the opportunity to make the best choices I can under the circumstances in which I find myself. It sucks. It hurts. I am angry and sad in a way that I have never been before. My son, my baby boy, is dying, and I am helpless to stop it. I am grateful for the time together, but frustrated that it is almost at an end. I feel the insanity that is grief about to capsize me, but I struggle to stay afloat, my daughter's face reminding me that I am her life preserver in this ocean of sadness. I know that I am not the first, nor will I be the last, to lose a child, of whatever age. I have read and heard and seen the grief of those whose children were gone too soon. I have wept with them. Now, I am them. And I have learned what no one ever wants to know--that it's even worse than you could ever imagine. So, if you see me, be gentle with me. Because regardless of how I look, I am fragile and broken on the inside, and it is only going to get worse before it gets better. Thank you for propping me up until it does.
