Tag: journey

When my youngest was a baby, in her first year of life, she was dealing with severe eczema. No big deal, you might say, if you know nothing about eczema–– before this trial, I knew nothing of eczema. I heard eczema and I thought dry skin on your knees and elbows, maybe a little itchy, whatever.

I learned that there are different types of eczema, that had varying symptoms of varying degrees caused by many different things. G had weeping eczema with an insatiable itch. This meant that she could scratch herself till she bled and still, scratching the itch would be the only thing that would satisfy it, even if she was cutting through her skin and bleeding, which she did.

I rarely slept as all of my waking hours were spent caring for her, being attentive, carrying her almost non-stop and watching her like a hawk when I couldn’t so she wouldn’t start scratching, because I knew she couldn’t stop once she started. I could barely sleep even when she slept because I was listening for any little stirring that would indicate she had woken up and would start scratching. I swaddled her, tightly, for longer than you would swaddle most babies, in attempts to keep her from scratching in the night. I kept her little nails trimmed at all times. I would put little mittens on her but she quickly learned how to remove them. More than once I would awake to find her sheets bloodied and her cheeks scratched raw. Her siblings all had to be more patient and settle for less attention. Our marriage required a lot of patience. Diets and activities were restricted. Everything revolved around trying to keep her safe and give her some sort of relief. Needless to say it was a trying time for all of us.

The 3:00 am feedings were spent researching everything I possibly could. One night I came across mitten sleeves! I couldn’t seem to find any stores that carried them in my city, but thankfully that week my dad happened to be in Chicago. I found a store there that carried them and asked him to bring me some. They were exactly what they sound like, a sleeve with mittens, made of silky satin, on either end. Because it was a sleeve, she couldn’t get them off; they did have openings that could be folded back during the day for play time or eating when I could be right there with her. Hallelujah!! I could finally take a shower that lasted longer than two seconds or put her down to cook dinner without worrying if her face would survive. My dad had brought me two pairs of mitten sleeves; it was what he could find, and they got non-stop use. It didn’t take long before they began to form holes from the constant use––she would still rub her face, which would give her some relief but also save her cheeks; they had to be washed and kept clean all the time. Thankfully, one of our wonderful neighbors made her two more pairs and a friend of mine was able to repair the originals. I can still remember how it felt, the relief of getting back some semblance of “normal” life when those sleeves came on the scene. I had already forgotten what it felt like to not live on edge, concerned all the time.

It hadn’t always been like that. Her first three months were amazing. She was the happiest little smiliest baby I’d ever seen. Always laughing and giggling. A very good sleeper, at about 8 weeks or so I could get a good 5-6 hours of sleep each night, but that didn’t last long. Right around her third month she began to develop eczema––I’ll talk about the whys and hows of this in another post; including why I believe those first 2-3 months were so great. From there, it was about 9 months before we would finally be able to start unravelling our tightly wound nerves from being on constant edge and alert.

I spent so much time with her, but I feel like I missed a lot of it––measuring progress on her recovery rather than growth milestones. (Thank goodness for the first-year baby calendar I kept for her, as well as a little journal; at least we can go back and read about the life we were living as opposed to the disease we were experiencing.)

One of the things that added to the difficulty of the whole situation, was that it was so visible, you could see it all over her face. All kinds of well-meaning people would approach me telling me the things they tried when their kid or grandkid had eczema. Others, would stare, some of them probably judging me with whatever reason they needed to tell themselves for why a parent would dare to leave the house with their kid suffering like that, wondering what I was doing wrong . Others I could see the pity in their eyes, and I just felt even more pitiful, because I felt there was nothing I could do and that I had already tried a million and one things.

I remember one time, while making supper, after having obtained the mitten sleeves, looking over at G in the Exersaucer where I had placed her, and my once jolly, smiley baby looked forlorn and depressed. I had never before seen a “depressed” baby. She just looked so sad and hopeless. It broke my heart. It was such a contrast from the happy, smiley baby she was in her first three months. Now, a few years later, G has beautiful skin. And, as the baby of the family is always goofing off and doing stuff to get a laugh out of us. She is a very happy, healthy little girl. (I will talk about the natural healing side of that journey in another post.) But I wondered at that moment, if I would ever see her smile again.

That’s how it is, isn’t it? When you’re in the eye of the storm, it can be very hard to see anything beyond. While I would never, ever wish to repeat this experience, nor wish it on anybody, I am grateful for the lessons I learned. Coming through this trial, and many others, has taught me to have faith in the gift on the other side.