A day in the life...

The next time you tell a mama who has a child or children with severe eczema "it's just eczema," remember this post.

Today, I was awoken at 6:15 or 6:30 to my scratchy baby. This was later than normal, so I was pleasantly surprised. Exhausted from being up 7 times with him (and his scratching) overnight, I rolled out of bed groggily and bee-lined to the coffee pot. For a cup of decaf, because I apparently love to torture myself and have decided to give up caffeine.

I spent the next ten or fifteen minutes changing his diaper and outfit, which is no easy task when you have a scratchy baby. One minute with exposed skin is an opportunity he will eagerly take to claw at as many patches of skin as possible. After wrangling through the diaper and outfit change and dabbing at the blood he inevitably drew in that minute, I put his "scratch sleeves" on. Or in other words, I tortured my child by removing his ability to feel with his hands. It kills my soul a little every day, but given that the alternative is ripped open skin and a case of "potentially fatal" skin infection, I will take torture. My heart is not settled or at ease about it, though.

Then it was breakfast for my littlest and my older son (who has, praise Jesus, grown out of his eczema) while my daughter slept in. I have grown to despise meal times, as they are always followed with intense face scratching, blood and sometimes swelling. I spent a good part of breakfast batting at Landon's arms, trying desperately to keep him from actually breaking his skin in this particularly bad fit of scratching.

Adalyn woke up on the wrong side of bed just as we finished breakfast. She usually wakes up pretty poorly, so this isn't anything new, but she refused to have her diaper changed. And when I say refuse, I mean this girl will fight to the death. Her screams got louder and louder, and as eczema is often triggered by stress, we hate these fits because we know that it just means more and more scratching. Within a few minutes, she was violently tearing at her neck and I put her scratch sleeves on. Passers-by must have thought I was killing someone the way she screamed. She began to choke and cough, and I knew within a minute she would be vomiting if I didn't find a way to calm her down. So I held her down. I squeezed her tightly, stroking her hair and holding her arms down as she screamed bloody murder. She kicked and clawed at me, her little heart racing so fast. Just as it always does, my heart broke a little as I restrained my two-year-old daughter while she literally went nuts.

Once I got her calmed down enough to convince her to let me change her diaper, I looked over her body, making sure none of the patches of weeping, crusty, scabbed skin looked like they could be turning into eczema herpeticum. The spots behind her legs, rubbed completely raw on Saturday evening in the worst eczema fit we've had so far (that quite literally soaked her sleeper in blood) hurt me to even look at. She's been hobbling around, having difficulties walking, ever since.

I'd say about 30 minutes after waking, we're finally able to sit her down to breakfast, which is a battle in and of itself because I have her scratch sleeves on. I try to feed her, because feeding yourself when you're wearing these things is no easy feat, but you would have thought I'd asked her if I could chop her pinky toes off. There was no way I was going to feed her breakfast. So I let her feed herself. That meant half of her steel cut oats were on the floor, but you win some, you lose some. About halfway through breakfast she broke down into another fit, though I can't remember now for the life of me what it was about. I tried to stroke her hair and calm her down, but she was having none of it.

She flung herself on the floor, kicking and screaming, and soon thereafter, the scratching began. All over, scratch-scratch-scratch-scratch. Then, because she couldn't really scratch with those sleeves on, she begged me to scratch her wrists and ankles for her.

"Please mommy! Mommy scratch please! Pleeeeeeeaaaaase - sob - mom - sob -mmmmmeeeeeee - sob - scratch my - sob - arm!" She kept jabbing her wrists into my face, desperate for relief. And I had to tell her no. Over and over and over, as she screamed at my feet.

Meanwhile I hear Landon's cry. The one that says, "I'm scratching my face open!" There's a very distinct cry he lets out when he's clawing at himself. So I go running for him, to flip his sleeves over so he can't break skin open, as I'd flipped the sleeves open while he ate breakfast.

Adalyn continues on her tirade for 20 or 30 minutes and I run back and forth between them, batting their hands away from their skin, trying everything I know to keep them from scratching; to distract them from the intense itch. It all fails, and I feel defeated, just as I do pretty much every other minute of the day.

I get a good 35-40 minutes or so in with no one crying, no one scratching to the point of doing any damage. I got some chores done and then put Landon down for his nap.

I turned on the TV for Adalyn because I've now become that mom. I desperately need a respite during the day. When I say need, I truly mean need. Some days I really do worry for my own sanity. She sat pretty contentedly in front of the TV for about an hour while I cleaned up the kitchen from breakfast, started some laundry and finished up an order for the shop.

About that time, she began the scratching again, and the begging me to scratch for her. I sat with her as we finished up a show and just about that time, Landon woke up. We did the normal diaper change thing and I began to get lunch ready.

Adalyn wanted lunch rightnow and told me in screams and Landon cried at my feet to be picked up the entire time. I slipped him little pieces of turkey as I cut them, if only to give myself little thirty second breaks while he chewed. I thought I was being so safe with our lunch of turkey and avocado, because those are both things they've had before without breaking out, but OH MY GOSH was I wrong! Lunch ended rather abruptly with Adalyn's left ear swelling, a splotchy rash spreading across her face and a terrible scratching fit, while Landon managed to rip open more skin on his face while I was dealing with Adalyn. Both kids ended lunch screaming and scratching, and I began to cry. I took some pictures of Adalyn because I'm trying to keep a journal of all their food and how they react to it.

My oldest got home from Vacation Bible School right about this time, and I snapped at him and told him they were all taking a nap. I feel so horrible for him. His behavior has gotten pretty bad lately, and I can't say I blame him. He bears the brunt of my frustrations with my life right now. He gets home just in time to find his mommy run absolutely ragged from an emotionally draining morning and practically the first thing I tell him is, "You're going to take a nap right now!"

I just needed it. Once again, I'd hit my brick wall and I needed a break. Day in, day out, 24/7, it just wears on a person. I need continual breaks or I really think I'll lose it.

I got the three of them down for a nap, although it was a difficult and long process, and I sat down to get work done. Some days, like today, I wonder why I keep doing this. Why do I keep making myself work? I don't have to have this etsy shop. I could quit at any time. We don't truly need the money. I never, ever have down time anymore, because I spend every moment of down time doing housework or working on orders. But I think the truth is that I'm scared to not have something besides motherhood. I need to use my brain and be something other than a mom. It's just another one of those things holding me together right now, even though it is also simultaneously exhausting.

Nap time ended smack dab in the middle of an order (though my oldest didn't nap, he at least read in his room mostly quietly), with nary a free moment of me time, and I was so relieved to see my daughter wake up happy. This doesn't happen very often anymore, so I embrace the heck out of these moments! We had some fun play time!

Then I got walloped with some fatigue and just laid on the couch for a solid 45 minutes or so. I find this happens more and more lately. The sleep deprivation from being up so often at night, going to bed late because I'm working on orders and being awoken between 5:45 and 6:15 most mornings has really gotten to me. My hubby thankfully picked up my slack and ran to the grocery store to pick up a few things we needed and picked up dinner. I try really hard not to eat out often, because healthy food is important to us and because the medical bills have really been piling up, but sometimes you have to do what you have to do.

This afternoon was a smattering of good mixed with bed. Lots of scratching, a lot more bleeding in the last few days in general, but they played together well. Dinner was the easiest meal of the day, with no one reacting too horribly. Ironic, no, that it's the unhealthy meal of the day that no one reacts to?

My FIL was here this evening and he and my husband took the kids out for a bike ride. Landon was pretty aggressively scratching himself the whole time my FIL was holding him before the bike ride, and I felt like I couldn't even pay attention to what everyone was talking about because I had to keep pushing his hands away from his arms (that and his face are the two areas he "attacks" most), as they were also starting to bleed.

After the bike ride, we all hung out for a little bit and excitedly cheered Landon on as he has really started walking this evening. At 12 months and a few days, he is our latest walker by far! It's a fun milestone!

Bedtime followed shortly thereafter and was as disastrous as normal. Landon took about 35 or 40 minutes to settle down.  I thought I'd gotten him down once, but I left the room and he began to cry again. When I went back in the room, he was scratching his face against the pack-n-play netting. This is one of the most frustrating aspects of his scratching! He can do so much damage with that netting. It's high time we bring the crib up instead. He just prefers the PNP so much that we haven't switched up to this point.

I finally got him down and then it was time for the big kids. Bedtime must be a well thought out and executed plan, or my high needs daughter cannot cope. At one, she was roughly diagnosed as having a sensory processing disorder (roughly as in a friend who is an OT gave us a test to fill out and she scored highly). Many days I still do think she has one, and wonder if we did her a disservice in assuming if she did have it, she'd grow out of it. Today was one of those days. We covered one hand and left one exposed (to suck her thumb; if we try to take both hands from her at night, her world would literally implode).

She freaked. Screaming and sobbing. Those screams and sobs were followed by my older son's screams and sobs, because like I said earlier, this poor kiddo has really taken a back seat to the other two children these days. And we've had quite a few traumatic bedtimes lately, where Adalyn ends up soaked in blood and it is a long ordeal to get her cleaned up and patched up. I can't imagine what that all must look like to a four year old.

The screams and sobs went on for awhile before I finally had to go in there and lay down with her, scratch her wrists and rub her belly until she fell asleep.

And then Landon woke up.

And I'm 100% certain I will be up another 6 times with him tonight, minimum.

I'm tired. In my bones; a deep, deep tired. The just eczema has ripped our world apart.