Today’s word is heartache.
Have you ever had that experience?
The experience in which, in the midst of your version of normalcy, you have a moment. And in that moment you find yourself capable through some metaphysical means, of lifting yourself out of the moment, and looking down on it from above. It is just a glimpse, a glimmering of an instant, and then you are back to being fully present in the moment. But for that split second, you see your situation from a different angle.
I have those experiences every so often. The most powerful one I can remember happened on the day the doctor came into my hospital room, sat down in the chair in front of me, and told me that they were testing my precious first-born son for Trisomy 21, or Down syndrome (you can read the whole story HERE).
As it happens, I also had one of those moments last night.
It all comes back to the CPAP machine. When we first got it, Jake took to it really well. Most likely that was because his breathing was so bad that the CPAP was literally working a miracle in his tiny, 3 year old body. Then his tonsils and adenoids came out, and hallelujah!…Jake could breathe at night! The number of times he stopped breathing every hour dropped from 94 (a crazy high number) to 11, which in itself is a small miracle.
The problem we are having now, however, is that He Will. Not. Keep. It. On. Anymore.
My best guess as to why is that while he still needs it, he does not feel like he still needs it, because he has improved so drastically on his own. And now it is becoming a battle. Every night we put it on after he falls asleep, and every night, about two hours in, he starts trying to rip it off his face. We have been going into his room to put it back on a few times every night, and every night as he is fighting me, he looks at me with these big doe eyes, as if to say “why are you doing this to me?”.
To us, this is our version of normal. This is our reality, this is what we do every day of our lives. But last night, lying in my child’s tiny toddler bed, curled up next to him, stroking his hair and trying to get him to relax and breathe with the CPAP instead of fighting against it, I had the experience. I lifted myself out of the moment. And what I saw was heartbreaking.
This is not normal. It shouldn’t be this hard. Breathing should come naturally. Just breathe in, and breathe out. No machines, no coaxing, no help. It should just happen. For Jake, it doesn’t. And that, my friends, breaks my mother’s heart.