In the Bible, they talk about people in mourning wearing sackcloth and putting ashes on themselves. For me, the current day equivalent is not wearing mascara. Before now, I would be sure to put mascara on my invisible, blond eyelashes. Mascara was more important than wearing shoes. It was the one thing I had to put on. But now, it’s pointless, because I will probably cry it all off, and then it will get in my eyes and make my contacts irritated for the rest of the day. So, if I start crying at 9 a.m., that makes for very uncomfortable eyes all day long.
I think that is how I’m feeling all over now. Not made-up. Constantly undone. I feel exposed and as raw as my face looks without makeup. But it seems silly to get all primped up on the outside when you’re falling apart on the inside.
The worst moment of undone was just Sunday night. Tage has become a poor sleeper and really only seems to get comfortable in someone’s arms. So, when he woke up at 1:00 am on Monday morning, I went in to check his diaper, give him a small feeding, etc. But every time I would crawl back to bed, he would stir. Months ago, we would let him stir and cry himself back to sleep, but now it’s a matter of breathing. He wakes up wide-eyed and panicked because he can’t breathe through his secretions. I wake up at any peep he makes, and when I do, I must go get him.
I took him to the rocker in his room and we rocked; we tried to get ourselves comfy in the recliner in Josh’s office; I tried propping him up on his side in his crib. Still, he was restless and growing more agitated as the night went on and as he was losing precious sleep.
At 4:00, I was out of ideas, out of energy, and out of the ability to keep myself calm. Tage was arching his back in discomfort and crying. He felt hot, too. The thermometer showed a low fever, which was one of the reasons we should be concerned, they told us. So, I woke Josh up who called the Riley doctor on call. She recommended that we bring him down. She offered an ambulance if we didn’t think we could make it without help. But then he settled enough that we thought we could make it.
We drove down to the hospital with our puffy eyes, messy hair, and sloppy clothes, wondering if we were going to be admitted, wondering if we would ever get sleep again in our lives, but mostly wondering what a fever would mean for our little boy.
And then, just like kids and cars do, when he got to the ER, he was calm, asleep on Josh’s chest. And his temperature had gone back down.
A chest x-ray confirmed that there was not fluid in his lungs. He probably just has a virus, they said. We were thankful. “Just try to keep him comfortable and keep using the suction machine,” they said.
Keep using. I hadn’t started using it yet. I can’t imagine that loud, violent machine sucking saliva out of my baby’s mouth. It’s another one of those things I don’t want to do, but I realize it’s what’s best for Tage.
So, today I pulled the monster out of the bag where it has been hiding in a corner of my office, under some clutter, so I wouldn’t have to look at it. I was going to wait for someone to be here with me, but I could tell Tage really needed some help with his secretions.
I plugged it into the wall and put all the attachments together. Tears spilled out of my eyes. I just don’t want to have to do this. “Jesus, I need you.” I begged as I flipped on the switch. It roared awake and startled Tage, but soon he was used to the noise. There was noise, but there was no suction. I looked at the directions, I used my common sense. I texted a friend who is a nurse, and she tried her best to give tips on what to do.
I tried again, cursing the machine and cursing the fact that I’m doing this and cursing the fact that I don’t do well being home alone right now and that I should probably call the doctor and ask about an anti-depressant.
Then the doorbell rang.
There stood my mother-in-law, who also happens to be a nurse. I had completely forgotten that she had asked to come visit earlier this morning. I felt the relief of a sailor who had been washed ashore after days adrift at sea. I immediately burst into tears. “Oh, I’m so glad you’re here. I can’t get the suction machine to work,” I said as I cried on her shoulder.
This is why the Church is called the Body of Christ. I told Jesus I needed Him, and He sent His Body. Oh, if I could go into all the ways The Church (The Body of Christ) has helped us recently. What a gift it is to receive Love the way He intended.
So, we got the suction machine working. We did it. The first time is done. Just like the g-tube, I’m sure it will become more and more normal as the days pass.
But my tears still wouldn’t stop. It’s been getting harder and harder to control them, and today I felt a sense of apathy toward caring for Tage, and I knew it was time. I need help.
I was on my way to get a manicure when a nurse returned my call. I was standing on the sidewalk outside of a Starbucks in the spitting rain when she asked me, “And what makes you feel that you need an antidepressant?”
Immediately, I felt a knot in my throat. I’m going to have to say this out loud.
I bent over and clutched my heart, “Because our son is dying.”
As I drove to the nail salon, I reminded God, “We’re running out of time, Lord. If you’re going to fix this, You need to start working now! I know you can do it. I just don’t know if it’s part of Your plan. But I need You to know I can’t do this much longer. I can’t bear to watch him suffer anymore….but I trust You. We trust you.”
The three hardest words I have ever said in my entire life. They are not easy to say, and it’s not getting any easier. We are choosing to say them, because we know He is trustworthy. And quite frankly, Tage would be a lot more comfortable if he were with the Lord. But that doesn’t make our hearts ache any less. He’s our boy, and we want him here. We want him healthy.
But we know God has a plan for Tage, for us, for you as you read this. And despite what our culture teaches us, we are not the center of. The world does not revolve around us, around me. God’s picture is huuuuge. We are one piece of it. I keep wondering if He will answer the question of “why” on this side of Heaven, or if we will have to wait until we get there. Until He allows us to see the top of the tapestry He’s sewing right now — it sure looks like a bunch of messy strings from here, but from the top side, His view, I know He’s weaving a beautiful design. A perfect story. I know we will be blown away when He reveals how this terror is part of a grand, beautiful picture. He does always use everything for His purposes, and we know He’s using this.
I know all of this. And yet, I still had to call my doctor and ask her for a little pill to help me make it right now. I need to care for Tage, and I can’t do that if I’m having trouble getting out of bed. I’m feeling like the bottom of that tapestry looks right now.
I sat in the parking lot at the nail salon, rain dripping on my windshield, and I bawled.
I cried so hard that I had to call Monika, who was staying with Tage at the time, and ask her to call the salon and tell them I wasn’t going to make it.
I trust His plan, but sometimes I already miss Tage. It’s hard to enjoy him in the moment every moment of every day.
I don’t know what bravery and courage look like exactly in this season, but I think it might look something like one step at a time. Putting our feet one in front of the other. Getting out of bed. Trekking to the ER when you aren’t sure. Asking The Body when you need help. Crying. Getting medication. And wearing no mascara.
Especially wearing no mascara.
Here’s what I’m thankful for today: I’m thankful for people who come be with Tage so I can sleep, for people who clean our house, for the meals being brought, for snail mail that encourages us, for my sweet dog, Marty, who does not leave my side all day long, for the Lord’s presence, for our friends who are willing to get dirty in this with us, for people who allow us to say what we’re feeling even when it doesn’t sound “nice”.
Please continue to pray for us, as I know you are doing. We are physically tired, emotionally drained, trying to not think too much about the future but just enough that we know how to be in the moment. Please pray that we continue to feel God’s presence, because it is very, very tough some days. Please pray that our faith remains strong. Please pray for a miracle. We haven’t given up yet.