A Day in the Life of Silas

I go into Silas’s room to wake him up.  I sit on his bed and gently talk to him and rub his back to wake him up.  I also discreetly check his neck and behind his ears to see they’re oozing and/or bloody.  Silas, in a state of being half awake/half asleep, immediately starts scratching his eyes.  I gently move his hands, holding them so he cannot scratch.  He buries his head in his sheets rubbing vigorously back and forth.  Controlling the hands does little to stop the itching.

Eventually he gets out of bed.  I check his bed.  It is covered with dead skin cells or whatever it is that got scratched off during the night.  There are blood stains on the sheets from rubbing his eyes.  I try to evaluate how bad the damage is.  Do I need to change the sheets, or can I just vacuum up the worst of it today?  I see Silas coming out of the bathroom.  He can’t really walk properly because he can’t bend his knees.  His pajamas are sticking to him around the legs and arms, which means the skin is totally raw underneath, oozing and bleeding.  He comes to me for a hug, which I gladly give him and I notice that he smells.  He just a bath last night, but he has a certain smell.  The only way I can describe it is the smell of rotting skin. 

Breakfast time.  No dairy, no grains.  I’m debating hashbrowns, but wondering if nightshades might be irritating him.  I guess it’s eggs again.  In the back of my mind I wonder if eggs might somehow be irritating him even though they didn’t show up on any of the multiple allergy tests we’ve had.  Silas takes three vitamins/supplements each morning, thankfully without any complaining.  But looking at his skin, I’m wondering if these are just a waste of money.

Now it’s get dressed time.  Along with getting dressed is always ‘lotion time’.  Clarence and I discreetly fight about who gets stuck doing his lotions today.  Multiple creams and bottles are pulled out.  A mental battle: do I use the strong, steroid creams and risk long term effects; or one of the many more natural options we’ve tried.  Nothing really seems to help anyway.  Silas cries as I apply some of the lotions because it stings his raw skin.

We head out the door for kindergarten.  Usually at some point there is a temper tantrum or crying from Silas.  I wonder how much of his emotional and behavioral issues are related to his physical well-being.  I know MY emotions are strongly connected to his physical well-being.  I constantly remind Silas to please stop scratching.  If he seems to be exceptionally itchy I give him some antihistamines before we leave the house.

A few hours later, I go to pick him up from kindergarten, wondering what awaits me.  Sometimes Silas is playing and enjoying time with friends.  Other times he is sitting off to the side by himself, scratching away.  Lately it’s been mostly the latter option.  I feel discouraged and helpless as I see more blood stains on his jacket from rubbing his eyes and neck.

We go home for lunch.  What am I going to feed this boy?  No grilled cheese sandwiches around here.  Thankfully I find some leftover meat and veggies in the fridge.  At lunch he also has kefir water for some good probiotics.  After several helpings of food Silas is complaining that’s still hungry.  I pull out some fruits and nuts and eventually tell him that’s done eating.

Silas and I enjoy a quiet afternoon at home.  We read and play games and I continually remind him not to scratch.  Eventually Clarence and Austin come home from school and he enjoys times playing with them.  Meanwhile, the battle to get Silas to stop scratching continues during all of this.

After dinner comes the bedtime routine.  Usually Silas has a bath 3 times a week.  He hates bathtime because the water stings his skin.  We try adding various things to the bathwater to help soothe the skin, but nothing ever seems to really help.  After bath comes lotion time again.  A dreaded and painful process for all family members.  Silas often starts crying even before we start because he knows it will sting and burn.  I feel so discouraged and frustrated looking at his skin.  I often end up losing my temper and yelling at Austin who is just an innocent bystander to the whole thing. 

Before bed we pray together.  We thank God for His amazing love and goodness to us.  And we pray for healing.  My heart hurts as I struggle to keep trusting.  Some days I feel so overwhelmed and discouraged that I cry as we put the boys to bed.  I give Silas a hug and tell him I love him.  He usually responds with either, “I love you, too” or “I know”.  J  I remind him to do his best to try not to scratch during the night. 

[Disclaimer:  I, Anna, wrote this in a first person context, usually mostly ‘I’, but I should state Clarence is also super involved, and extremely helpful in each of these steps every single day.  His support is amazing.]

I’m not really sure why I felt drawn to write this blog entry.  I don’t want to be one of those people who constantly complain about her life, trying to win some kind of prize for the ‘biggest problems’.  I KNOW that many, many people have a yoke MUCH heavier than mine.  And often when I’m talking with friends, Silas’s skin/diet/health is the last thing I want to talk about!  But I guess I still need some way to wade through my thoughts and emotions.  Thank you for your prayers and support and we continue this journey.