(This draft has been sitting around for close to a year. I finally decided to go ahead and publish it. These are reflections on the things I learned after living in the hospital for six months with my critically ill child. Forgive me that they’re a little gloomy.)
1.I’ve glimpsed hell. And I’ve learned that it’s possible to walk through it and come out alive.
Before you do it, it seems impossible. But you can survive it.
I didn’t have to walk into the darkest depths of the inferno — actually losing my child — but I did come very close, and I’ve seen other families do it.
And somehow, despite what it felt like at the time, we survived.
2. Hospitals are truly horrible places to spend any amount of time. But they are full to the brim with wonderful people.
I have never met so many smart, interesting, kind, devoted people in one place as I met in the hospital.
I want to give a special shout-out to nurses, who are some of the most superhumanly kind and selfless people on the planet. Turns out, you simply don’t go into nursing if you’re a crappy person. And we all benefit from that.
3. I can do things that I previously believed unfathomable.
I never could have guessed I could hold down my precious, innocent baby and allow people to hurt him.
Not only that, I can hold him down and hurt him myself.
Not only did I have to ignore his cries, I made him cry.
(Inserting Felix’s feeding tube, over and over and over again while he screamed in anguish, was and is the worst thing I have ever had to do in my life. I had to do it so many times. It goes against my every instinct, belief, and philosophy. My entire being is bent on protecting him from harm; and here I was, invading his body, working against his thrashing and screaming. Over and over again.)
If I can do these things, who knows what else I’m capable of — for good or for evil.
Could I sacrifice my own life for someone else? Could I kill a person? Maybe. Nothing seems impossible anymore, under the right circumstances. I now know that I’m capable of anything.
4. Six months in the hospital is not that long a time.
Before I lived it, I would have balked at the idea of staying in the hospital for one month. A whole month of my life spent in a sterile hospital room?
Then we did five. Then we got to go home for a few months; and after that, when we knew we were going in for one more month, we considered that a very short stay. Practically nothing. Just a couple of weeks.
In the long run, those six combined months were a short time in my life.
I know families who have been stuck in the hospital for a year or longer.
My whole perspective on time has changed: really, no amount of time on this finite earth is that long. Nothing we experience here is eternal.
A lifetime isn’t really even all that long.
5. All feelings have a beginning, a middle, and an end.
ALL feelings.
That current emotion that feels like it’s going to swallow you whole? It won’t. It will end. It will eventually be replaced by another one.
An emotion is an event. It will pass.
Any time I feel like my emotions are going to end me, I remind myself that I can practically put that feeling on a timer: the seconds are ticking away, and that emotion will come to an end. In the end, I will still be standing, but that feeling won’t be.
I’m glad you published this. My thoughts are jumbled and my journal a tragic wandering trying to make sense of the world. But, #1. I keep telling myself this is worse case scenario. And I am alive and breathing. One day at a time. Today we are still standing.
I can relate to all of this. My baby has more snot and mucous than any of the amazing nurses or doctors have ever seen…… she is suctioned twice a day for what feels like a very long time, screaming her head off, while I pin her down. We’re now looking at the prospect of transplant no.2 which is heartbreaking after 5 months in hospital – to start again!!!!!!
I was devastated when my baby had a cold & then impetigo and then eye infection, & then the ear infection………….
I no longer know who I really am and what I could do either………..
Great write.
Helen & my hero Harriett xxx
My son was in the hospital just a month, but I had similar lessons. You articulated this exceedingly well.
I have learned #5 the hard way over the past few years as well. The only problem is that telling myself that in the middle of the emotion makes me really, really angry. But the anger, too, eventually passes, which I guess only proves the point. It goes along with #4, too, I think–nothing really lasts for that long, so long as there is Time.
#2 is true for, I think, every hellish thing on earth. In the midst of darkness and tragedy and suffering, there are always good people somewhere, some spark of light and God-on-earth. It’s not like that somehow justifies any of that suffering, or makes it better, really–I would never tell someone in the hospital with their critically ill child, “Oh, but look at all the great people here! Doesn’t that make you feel better!” or the abused children we work with, “Hey, look at all these really nice people working hard to help you! Doesn’t that make you feel better about the fact that your mom beats you?” But it is still a good thing, to see there is Good in the midst of the worst, even if you can only see it looking back.
#3 and #1 are scary and empowering and true. Good things can make you feel that way, too, I think–childbirth, for instance. But it’s all the scarier and more empowering when it’s bad things that show you your strength. And gives you empathy, too–under the right circumstances, any of us could do anything. Stops you from saying, “I would never…” which is probably a good thing, on balance.
Thank you for sharing these thoughts, Kathleen. And I’m so, so glad Felix is doing better. Not as glad as you are, of course. :-)
“That current emotion that feels like it’s going to swallow you whole? It won’t. It will end. It will eventually be replaced by another one.”
So powerful, and so true. Thank you for reminding us of this!
<3
You are such a strong and smart individual. I think that you are really quite remarkable and your kids are extremely fortunate to have such a wonderful Mother who would do and give up anything for them. I am so happy that things are going so much better for your family now. :) I love your insight in this post. Thanks Kathleen! :)
Really interesting and wise post. Thanks for sharing.
Hello. My baby had severe colic and acid reflux for the first 5 months of her life. She screamed in severe pain almost constantly, she was always exhausted, didn’t want to eat because it hurt her. She also had anal stenosis and we had to have her bottom dilated (painful, terrible thing to witness). We ended up on Neocate too, although it didn’t help much. We were very lucky to avoid a feeding tube. It’s NO WHERE NEAR what you all went through, but it was very hard. And I thought to myself while we were going through it “we are standing in the fires of hell.” Watching your child suffer is the worst thing I think I’ve ever experienced in my life. And I empathize so much now with parents of children with disabilities and chronic illnesses. I don’t know how some people do it. We are lucky that eventually the colic and reflux did go away and it doesn’t seem to have left any permanent damage. I wish the best for you and your family. I just wanted to let you know that I’ve kind of been there, at least enough to understand a little bit of what you said in this article.