Saturday, June 24, 2017

Just a Day

I can feel the pain in my back and legs as I hear the alarm clock waking me up. I turn the alarm off and cringe as I sit up from the pain. I look over and see that Adam is not in the bed, which for us right now, is not a good sign. I leave the bedroom and immediately find Adam curled up on the floor outside of the bathroom with a bowl. Our sweet golden retriever, Rusty is laying by him with her soft brown eyes open, as if she hasn't slept either but has stayed awake with him all night watching over him. I look at this scene and a bit of my heart cracks for the millionth time. I fall on my knees with a sigh, and give Rusty some grateful pats on the head. I gently put my hand on Adam's shoulder to wake up. He awakes with a start, and I tell him to let me help him back to the bed. I help Adam to his feet and feel a sharp pain in my back and hands, but I ignore it. As I help him back to bed, with Rusty at our heels, Adam tells me that he knows he is dehydrated. I go to get his feeding tube supplies and as he sits, we gently use his feeding tube to give him water. I then remember that we are out of Pedialyte, which helps restore electrolytes when the dehydration becomes this bad from throwing up so much. As I help Adam settle back into the bed, I quickly put on some shoes to run to the pharmacy. As I drive, I try to take calming breaths. No matter how many times I wake up to find Adam in this position, or stay up with him late into the night to help him through the illness, it never becomes easier. As I step out of the car into the pharmacy, the pain increases in my legs, but again I ignore it. I know right where the Pedialyte is, but of course they are out. I ask for help and 10 minutes later I am checking out. The cashier tells me that I have enough points saved up to get a discount. The points add up as I am constantly refilling Adam's prescriptions, or picking up new ones.

When I get home, Adam has fallen asleep and I take a sigh of relief that he is able to sleep for awhile. There are still many things to do when someone is chronically ill, and today I need to clean the bathroom, wash the sheets, dust, make sure Adam has enough medications for the next couple of weeks and finish some things from work and school. As I go to work, I can feel the pain in my back creep up into my shoulders and neck, and eventually I have to sit down and take a break. I look at my hands and see that they are swollen, which happens often when they are in pain. I think to myself that after 12 years of being in pain I would get used to it, but I don't. I get back to work, and then I hear Adam throwing up. I go into the bathroom and Rusty is sitting by Adam. I sit on the edge of the bathtub and place my hand on his back as he throws up. When he finishes, I give him some tissues to wipe his face and nose and he places his head on my lap. We sit there for a time, and I tell him that everything is going to be alright. It's going to get better. Adam brushes his teeth and then I help him back to bed again. I then go get a cool rag to place on his forehead as this helps with the nausea sometimes. Adam isn't able to eat much, but he does some formula through his feeding tube and I make a simple dinner and pray so hard that he can keep at least some of it down. We watch an episode of Psych, because we firmly believe that a Psych a day keeps the grumps away. :) Even though Adam throws up halfway through, we are still able to finish it and laugh together for a little bit.

As I help him back to bed again, I realize that my pain is at its worse for the day. Adam and I then say a prayer together. Adam prays and is so grateful to God for our blessings. Our safe, comfortable apartment, for his angel aunt and uncle that are so generous to let us live here, for Rusty and the comfort and happiness she brings to us, for the love and support of our families and loved ones, and how we feel their love and prayers. He thanks God for our car that by some miracle keeps running. He thanks God for our marriage and the support we are to one another, he thanks God for helping him through the day and for giving him the strength he needed. He then prays for each of our parents and siblings and dear friends and family members by name and for their specific needs. As he ends the prayer, I truly feel God's love for us. I feel that God is aware of us and of our suffering, individually and together. That feeling reminds me as it has almost everyday for the last 12 years that even though things are hard and painful, it does not make me forgotten. Even though I don't have the answers to why Adam is so sick, or why I am still in pain after all these years after doing absolutely everything I can to make it go away, I still can feel peace even while I ache.

Later that night, Adam is unable to sleep because of the nausea and can't fall back asleep after throwing up. I start him a warm bath, and after helping him back to bed after the bath, I rub his shoulders and neck because he pulled a muscle from throwing up. The weight of it all hits me, the crack in my heart deepens and I start to cry. Adam pulls me into his arms and talks me through my anxiety. As I calm down, I remember the feeling of peace I had earlier and reach out to it again. With Adam's incredible understanding and with God's love and watchful care I am reminded that everything will be ok. Everything will work out. As Adam helps me, my tears slow down and we are eventually able to fall asleep again.

We don't have answers yet. We don't have relief yet. But, we do have peace. We have peace because God's love is real and one day everything will be made right. And that is enough for today.

1 comment:

  1. Caitie, I feel a little nuts suggesting this (like I know anything), but might it be appropriate to look into medical marijuana? It has already proven efficacious for a variety of ailments; glaucoma, PAIN, NAUSEA, MUSCLE SPASMS,loss of appetite, epilepsy, AND AUTOIMMUNE DISEASES. Would it be worth looking into? My understanding is that prescription cannabidiol (CBD) is available, by prescription (duh!), in pill form or oil form. The extracts contained in this medicine do not include the chemical (THC) that can produce a "high" in people. Please keep in mind I only know reports I've seen on TV, or read online. But just might it be worth taking a look-see into?????? Love you guys, and am always so inspired by the remarkable journey you're both making. --Sister Anita Holmes