This morning I walked out of my bathroom and saw him laying there. Tears welled in my eyes. My son. My baby. Laying in my bed because I had him sleep with me after a rough night. And when I say rough I mean we thought Adler was gonna die in our shower. Flat out. There’s no sugar coating it. There’s no other way to describe the fear that is felt when your son who’s battling inoperable metastasized brain cancer, has hydrocephalus and adrenal insufficiency says he’s feels weird and basically loses consciousness in the shower chair. Let me set the scene here. Adler woke with a headache. I was with my mother looking at a house with my dear friend who’s a realtor. We’ve contemplated moving for awhile. New scenery, more space, whatever. Anyway, I get home and he’s in a dark room laying down. I immediately begin the headache rituals. Oil on the forehead, check his temp just to be sure, get all his favorite stuffed animals and do the comfort checks. He’d only been up for about 20 minutes and Daddy gave him Motrin and his chemo. So. I made sure I ate something because that’s necessary and in case the scenario worsened and we had to go to Chicago, I at least ate. Because yes, that’s the first thought “how bad will this be?”. Is it just a headache or is it more. He has hydrocephalus and a shunt, that’s issue #1, he has brain tumors along with spinal tumors that’s issue #2. So a headache ain’t just a headache here! He decides to take a nap. I put on the easy listening music and he sleeps for over and hour. He wakes. Feels better. Headache isn’t gone but better. He has some crackers and chocolate milk. Good. All good signs. He wants pizza for dinner. We order it and Aaron goes to pick it up. He’s in and out of the family room being silly and chatting and seems ok. Still no blinds up in the other room. Just likes to be in the dark when his head hurts. Which I completely understand!!!! We eat dinner. Totally fine. Pizza goes down good. We all laugh and talk Disney!! Classic dinner conversation here. He’s good. That was about 7pm. At about 9pm I say let’s get your shower done and he’s all for it. Still sitting in the dark. I get the shower ready and he comes in. Aaron’s laying on the bed because he says just in case. Right. Remember that!!! Adler gets in the shower. Sits down in his shower chair and I say I’m going to wash his hair for him since he’s not been feeling good. He tips his head back and I get that shampoo going and within seconds he looks at me and then around and says “Mom, I feel really weird”. I proceed to rinse his hair quickly and ask “like how?” and as I do I see the color leave his face and he turns grey. I tell him to take deep breaths and stay with me. He leans to one side and his eyes begin the close. I kind of shake him as I say stay with me and ask him to look at me. I call for Aaron too. He opens his eyes some and he’s still leaning. I felt his weight get heavier in my hands. He’s basically out. I say louder look at me and he does. I touch his face and tell him to keep breathing and I shut the shower off and wrap a towel around him. He says “I just feel so weird Mom” and he pukes everywhere. Just all over. And he grabs for his head and says it hurts. He says his back hurts too and he starts to slip forward as he says he’s not ok. I hold him and keep talking to him. Over and over we say keep taking deep breaths. I tell Aaron I think we should call 911 and he says not yet. Adler says he has to used the toilet so we get him to it. He goes and I am standing in front of him with a bowl and my hand on his chest holding him up. Aaron’s cleaning up the vomit and the shower chair. Finally he looks up at me and says “I think I’m better, my head hurts more but I’m better”. I think I finally took a breath myself. Still not much color in his face though. He finishes up and we get him to the couch. Heating pad on his back and I put more oil on his forehead. I get the diffuser going and the lights are off and YouTube is on. A terrifying 20 minutes or so. What. In. The. FUCK. I take a 3 minute shower myself as I needed one and get back to his side. I was pretty sure I had vomit on me. Aaron takes his turn and then he’s off to bed for work in the morning. Adler and I stay up and he agrees to sleep with me so I can keep and eye on him. We watch some TV in bed and when we do he says “Mom, I’m struggling”. That broke my heart. Because he is. He’s fighting every day against a disease that lives inside him. My son is battling cancer. Fucking hell. For the second time. Quality of life is something used at the end of someone’s journey. It shouldn’t be a way of life. And this morning after he woke and said he was feeling better, “my body just feels like it’s on edge”. And that too hit me. This is all so so heavy. And hard. And painful. He gave us quite a scare last night. Not the first. Won’t be the last I’m sure. But I hate it. I do. It’s not fair. He just wants to be a kid goddamn it. Cancer has stolen so much from him. So much. So today. Today I am trying my hardest to see the beauty. To see and feel it through the darkness. Through my anger and sadness. Through anguish and fear. It’s there. It is. Because he’s here. Still.

from Life with our little Super Hero Adler Bear https://ift.tt/30L2Rnq

Adler