Ok, here I go being brave and courageous.
Here’s something I’ve wanted everyone to know, but just haven’t known how to sugar coat it enough until now. The truth is that I don’t know a sugar sweet enough to cover up this bitter.
I hate being a Debbie Downer like a Dentist hates telling a patient she’s out of Novocain.
It’s just not me. I’m an eternal optimist. I see the glass half full. I see the world through rose-colored lenses. I’m happy-go-lucky. I have the joy of the Lord.
However, here’s the deal…Miles is not doing well. I know. Shocker right? The thing is that when I say he’s not doing well; I mean that he actually may not live much longer. Maybe he will live for years and years. Of course that’s a possibility. It just doesn’t look like that will be the outcome.
Wait! There’s more.
A couple of weeks after we came back from Ft. Worth I began the process of enrolling Miles in Hospice. I’ve been dreading everyone knowing that, yet I’ve also longed for everyone to know. I’ve felt very lonely in this decision. It’s not really something you post on Facebook. Brandi Wilson has just enrolled her 6 year old son in Hospice. It’s also not something I would tell someone when they ask me, “How’s Miles?” I’ve told a couple of people, but they had to hear the whole explanation behind it. I guess I’ve been fearful of what people would think about the situation if they didn’t hear our heart behind our decision.
The truth is that it’s been a heart wrenching month and a half for us, but for me especially. It’s different being the mama. Call me naive or faithful, but up until very recently I still held fast to the thought that God would heal Miles. I thought he would be restored. I thought God would give him a new brain or heal the one he has. I thought I would walk into Miles’s room one day to find him running around and messing with all the stuff in his room. I’ve longed for it, prayed for it, fasted for it, begged for it, sobbed for it, threw a fit for it, and nothing has worked. He’s just gotten sicker. He’s just gotten weaker. He’s lost more and more of his limited functions.
In December the things I saw him go through were horrifying. I still have flashes of different scenes that continue to flash through my mind. Projectile bleeding, panic in his eyes, intubation, blood transfusions, flying to the children’s hospital, blood clots, the meeting where Randy and I signed the Do Not Resuscitate form, watching the nurses take out Miles’s breathing tube and waiting to see if he would live or die, Rachel and I watching Miles turn terrible shades of purple as he fought to breathe. Believe me…the list goes on.
Most of the things I’ve dealt with and have seen I wouldn’t even want you to be able to understand how I feel. They’re too sad. They’re too consuming. Even more than that though, I don’t want Miles to have to go through anything like that again. He’s tired. There’s nothing else I can ask him to do. There’s not another hospital I want him to have to go to. I don’t want him to have to endure any longer. For a long time Miles had more good days than bad days. That’s not the case any more.
In the last month I’ve seen Miles almost die 3 times. One of those times was at home the day after I enrolled him in Hospice Care. He was having carbon monoxide poisoning from too much oxygen. Crazy.
Today a Hospice nurse had to come and check on him because he’s so sick. His lungs are filled with liquid, he’s having so much trouble breathing, he’s coughing up crazy junk, and when he opens his eyes they’re full of panic because he can’t get enough air. The nurse said he has pneumonia again. When she left she planned on calling the pediatrician to see what pain meds he should be on so he will be more comfortable. He could go into the hospital, but we’ve decided to keep him home and make sure he’s as comfortable as he can be.
I’m a wreck. I didn’t know if my son was going to be alive this morning when I laid him down to bed last night. I got up to check his stats at 2:00 in the morning. I’m holding him while I can in case he’s not around to hold much longer. I’m typing this in his room while I watch him breathe hard and while listening to the oxygen machine make it’s noise and the monitors make their beeping noise, and there’s nothing I can do to make all this stop. There’s not a pause button I can push while I home school Spencer or make jello treats for when the other kids come home from school or when I have to do laundry or when Randy wants time with his wife or when…
That’s probably why my hair is falling out in clumps and why I continue to cram stuff in my mouth that is covered with sugar, cheese or fermented grapes. That’s probably why I’m thinking about getting some iron on letters and putting “Don’t Ask Don’t Tell” on my shirt. If my husband asks me one more time “How are you doing?” I’m not sure what I will do, but it won’t be pretty.
If you’re still reading this I actually feel really bad for you at this point because if the tables were turned and I was you then I would have no idea what to say to me. The only thing that I could think of saying to bring comfort would be, “I’m so sorry you’re going through this. It’s so sad, and I want to be here for you if I can.” Then I would probably try to think of something funny to say and follow it up with, “I love you.” I would hope that I would take the time to say something to you. Maybe it wouldn’t be the right thing to say, but it would be something.