8:25 AM
Home from work. I've been up since 5PM the day before. I give my children hugs and kisses. Tyler leaves for school minutes later. Lydia goes with her Grandma. I start Carrie's morning IV. I mix phenergan with saline in a syringe. Push 10 ml of saline solution through her PICC. Now the phenergan for the next 5 minutes. I go slow. Careful. It's over. Time for 10 ml more of saline. Then the IV. I make her food. I eat. I wait.
10:00 AM
I check her IV. Half has drained into her body. She's cold. I cover her with more blankets and kiss her softly. She closes her eyes. I wait.
10:30 AM
I check her IV. Is it finished? Almost. I wait and watch. She is sleeping now. She's not in pain. She's not nauseous. She's peaceful. It will come back when she wakes up. The IV is finished. I clamp her PICC and unscrew the IV tubing. I wipe down the end of the PICC with alcohol. I push more saline and heparin now. I try not to wake her, to let her sleep, to let her be peaceful. I fail. She sits up. She throws up. She doesn't want me near. She doesn't want me to hold her hair. She doesn't want me to be grossed out. I leave the room. I try not to think about all the things I can't do. I distract myself. Food? Cleaning up the IV and medicine? Reading through material "try this if you have morning sickness". She's finished. I return to help her sleep. I try to get her food. I know she needs her energy. I make plates, syran wrap them so they keep and save. I ask if she needs anything. She lays down. I tuck her in. I leave her alone so I can sleep.
10:45 AM
I lay down. A couch, Tyler's bed, the floor. It doesn't matter. I sleep.
1:00 PM
I'm awake. Carrie's still sleeping. I get ready. The kids are coming. Tyler from school, Lydia from grandma's house.
2:00 PM
The kids are home. I give Carrie medicine. I push more saline. I push more phenergan. Again I go slow, careful. Push, 1.. 2... 3.. 4.. 5.. 6.. 7.. 8.. 9.. 10... push. Just a little at a time. More saline and more heparin, more questions of "can I get you anything?" The medicine makes her loopy. The medicine makes her drowsy. She sleeps.
3:00 PM
I take the kids to the park. They are happy to run around. They are happy to get out. I take my camera. Carrie will want to see this. Lydia runs. She falls down. She calls for me and I scoop her up. I kiss it better. She smiles. She wants a drink. Tyler runs straight for the merry-go-round. He hops on. It goes fast. He lifts his legs up and starts to fly. Lydia wants to swing. "Higher Dada." Tyler runs around. His arms are out. I know he is an airplane. He runs so fast. He goes back to the merry-go-round. "Faster," he calls. Lydia is done with the swing. "Help me Dada". I lift her up so she can go down the slide. Again. Again. Two more times. She explores. Tyler spins in circles. I capture what I can with my camera. Carrie will want to see this.
4:30 PM
It's time to go. I chase the kids. I warn the kids. I hug the kids. They come. Lydia holds my hand. Tyler asks questions about everything. I answer. He asks more things. We see a quinceanera party. Lydia asks, "Dada, is she a princess?" Yes. I ask he if she knows who my princess is. "Lydia is and mama is." I smile and she squeezes me tight. "You are a prince Dada!" She says it with such excitement. Tyler has a stick. He swings it. "It sounds like a whip Dada." He's right. "Do you know I like sticks Dada?" I do but we have to leave the stick at the park so other kids can play with it. I take them to Pace's and order them small slushes. They both order Tiger's Blood. Tyler because he likes it and Lydia because Tyler ordered it.
5:00 PM
We're home. Carrie is still asleep. I make the kids PBJ's. It's what they wanted. I make them eat their sandwiches before they can drink their slushes. We chat. I learn about school. I learn about recess. "And Dada did you know I can run SO FAST?" Wow Lydia. They finish.
6:00 PM
They're tired. I bathe them. I dry them off. I brush Lydia's hair. I help them brush their teeth. I trim their fingernails. I pray with them. I read them stories. They snuggle on my lap. They love me. I scoop up Lydia. I rock her. I sing to her. I lay her down. "Dada, did you know I love you SO much!" I love you so much Lydia. I turn on Dada's songs for her, close the door and leave. "Wait Dada, blow me a kiss." I do. She catches it and rubs it in. She blows me a kiss. "Catch it." "Rub it in." I smile and obey. I close the door. I talk with Tyler. He has a lot more to say. I give him a hug. I kiss his forehead. I tuck him in. I turn on "Tyler The Wizard Boy Stories". I open the door just right. I turn on the correct lights. I tell him I love him. He loves me too.
6:30 PM
I check on Carrie. She needs something to eat. "What would you like?" She makes a face. I bring her food. A creamie, yogurt, my mom's homemade mac'n'cheese. She eats.
7:00 PM
Both kids are asleep. They were tired. I leave to go shopping. Milk. Eggs. Juice. Where is the Unisom? Carrie texts. She wants a jamba juice. Mango a go go. I'm relieved. She wants food. I rent a redbox. An action movie.
8:30 PM
I'm home with her jamba juice. I get her evening IV read. Open the needled syringe, draw out the first mutli-vitamin. Draw out the second multi-vitamin. Push it into the IV bag. Draw out the phenergan. Shake. Push saline. Push phenergan. Again I go slow. Again I count. Five minutes. More saline. I connect the IV bag. I fold laundry. I wait.
11:00 PM
The IV is finished. I push more saline and more heparin into her PICC. She sleeps. I cook a frozen meal a neighbor brought over. I eat. I sit to watch my movie. I blink. I missed much of the movie. I'll finish it some other time. I blink again and fall asleep.
12:30 AM
I wake up. I crawl into bed. Tyler's bed. He is sleeping on the "little matress". We're having a "sleep over". He's still asleep. I turn my phone up so I can hear if Carrie calls. She calls if she needs me. She doesn't call.
Sometime in the night
Tyler wakes me up. He needs to go to the bathroom. He goes to the bathroom. I tuck him in. I kiss his forehead. We go back to sleep.
I Try.
I often fail. I'm not perfect.
"If you are the one afflicted or a caregiver to such, try not to be overwhelmed with the size of your task. Don’t assume you can fix everything, but fix what you can. If those are only small victories, be grateful for them and be patient. Dozens of times in the scriptures, the Lord commands someone to “stand still” or “be still”—and wait.6 Patiently enduring some things is part of our mortal education."
"For caregivers, in your devoted effort to assist with another’s health, do not destroy your own. In all these things be wise. Do not run faster than you have strength.7 Whatever else you may or may not be able to provide, you can offer your prayers and you can give “love unfeigned.”8 “Charity suffereth long, and is kind; … [it] beareth all things, … hopeth all things, endureth all things. Charity never faileth.”9
I Pray. I Plead. I Drink It Up.
"Hope is never lost. If those miracles do not come soon or fully or seemingly at all, remember the Savior’s own anguished example: if the bitter cup does not pass, drink it and be strong, trusting in happier days ahead." - Elder Jeffrey R. Holland
I pray for your little family constantly. I wish I could do something for you to make things better. Love you all very, very much! ---Great Grandma West
ReplyDeleteIf Carrie gets cold like my wife does i found out that a low voltage electric mattress pad is her new best friend. It keeps her warm when I can and without turning the heat up to 80.
ReplyDeleteIt makes me so sad to see Carrie in so much pain!! I wish there was something more we could do for her :((
ReplyDelete