Far from perfect: our lives and eczema.

It's 4pm, and it's been a rather trying afternoon with Avery. She chose to spend her nap time going in between crying for me and calling sweetly for me to come. The "nap" (which never happened) ended with me coming in her room for the 100th time that afternoon and seeing that she had managed to escape out of her buttoned mitten shirt and scratch her arms till there were little bloody scratch marks all over. That did it for me-- nap over. Time to move on for the afternoon to something else.

I have been getting emails from several mothers who run into my blog posts about our daughter's eczema. I hear the stress in their emails, and their hopeless feelings I can empathize with tremendously. I have felt just like that. I've had mothers tell me that they want to have more children, but because of the daily physical and mental stress eczema places on them, they do not want anymore kids...they don't know if they could handle caring for any others. Caring for a child with eczema takes an enormous amount of extra time and energy, depending on how severe the case of eczema.

I have written before about Avery's skin being so much better. And it IS so much better than last year at this time. But we still walk daily through the in's and out's of eczema and the "maintenance" that goes into helping keep her from a severe flare-up.

Some mothers have asked me to explain how our daughter's eczema affects life. I'm going to attempt a list here, so bear with me.

1) We spend about 1.5 hours a day putting lotions on Avery's skin. That's once in the morning, before nap time, and before bed (or after bath, if it's a bath day). Pete seems a little more efficient at this than me, so it may take him 20 minutes, where it usually takes me 30 minutes.
1st is a layer of California Baby Calendula Cream on the really red spots. Next is some Burt's Bees Diaper Rash Cream on the spots that "hurt" her. Now that Avery's old enough she tells us where she wants "butt" cream, she calls it. Then a layer of watery Aveeno Intense Relief Cream all over. We seal it all in with 100% Organic Unrefined Shea Butter. We do this 3x a day. We've tried doing less creams, but this is what keeps Avery's skin less itchy overall and less dry. Whatever it takes, right? The 1.5 hours does not include any other point in the day if she starts itching and wants her "butter" as she calls the Shea Butter. If that happens, we try to encourage her to apply it herself, and she does a slow, but good job and she knows the best where she needs it.

2) We spend about $40 per month on lotions and creams.

3) The hardest part I think for both Pete and I is that there is almost no mental break. When Avery is not in the same room that we are in, I am constantly wondering in the back of my head, "I wonder if Avery is scratching?". Because she could be perfectly happy one moment, occupied and not scratching or she could get slightly upset or stressed at something and that triggers her to scratch. Or sometime she simply scratches out of bordom. There is often no rhyme or reason. She does WONDERFUL outside our home. She rarely scratches when visiting other friends. This is very nice for us, but at the same time, it makes a liar out of us! (Not that our friends think we lie about her eczema, but they do not see what we see at home.) Distraction and active playtimes are the best "remedy" for her scratching. If she's distracted enough, her skin doesn't bother her.

4) Discpline is hard. It used to be harder, but now that she's getting older I can differentiate better between a temper tantrum or bad attitude AND Avery not feeling well because of her skin. The hard part is stress triggers itchy eczema skin. So she wants to scratch it. This means, if she wants to do something, and we tell her "no", then she will often start to scratch. It's much harder to teach a child that they cannot have everything they want when eczema is involved. Yes, it's doable, but harder. I question myself and pray almost daily on how to parent her.

5) We are very thankful for the allergy elimination technique called NAET (www.naet.com for more info.) We travel twice a week to Dilworth in uptown Charlotte for acupressure treatments for Avery. Avery's skin is getting better and better due to these treatments. Her particular case of eczema is very much directly related to her food and environmental allergies.

6) Meals and snacks are not so easy. No eggs. No nuts. Very limited dairy. (it used to be no dairy too, but thanks to her allergy treatments, we are slowly giving her small amounts and always wait to see how it affects her itching.) We also found out she has a sensitivity to wheat which can be contributing to her eczema. Hopefully this one will soon be eliminated too. I do a lot of egg-less baking around here and quick and easy casseroles (a used to be FAVORITE of mine) are not on our menu anymore. As a dietitian, I try to make her snacks and meals very healthy, full of protein and fresh fruits and veggies (as much as possible). We use a lot of goat yogurt and goat milk too. I know what goes in her body will be reflected in her skin. Plus with her dietary restrictions she needs alternatives to get whatever she might be missing from other foods.

7) Living with eczema makes me sometimes want to be gone ALL day with the kids in order to avoid scratching episodes. Other days, I don't feel like leaving the house. She's 2.5 now and a very strong-willed girl. She has a lot of tantrums when things don't go her way. When you add that with eczema getting out of the house to do something very simple can be very difficult. I know other moms tell me that it's hard to get the kids ready to get out of the house to be somewhere on time. While I might be packing lunches or snacks, getting shoes on, or telling someone to get dressed, I can turn around and Avery is scratching. So, I stop what I'm doing, put a little lotion on her and then stick her mitten shirt on her. At least with that shirt I have a temporary peace of mind that she will not damage her skin. Then, I finish what I'm doing. It takes much longer to leave the house.

8) Baths are more time consuming for obvious reasons. She will usually scratch in the bath tub at some point (usually when we get ready to shampoo her hair) and we need to quickly get her out and lotion her up. If her skin is broken from scratching at all she screams. I don't think the water must feel that good on cut skin.

9) Avery and Kyla's favorite thing to do is change their outfits about 15 times a day. Kyla started to do this at the young age of 2 and hasn't stopped since. Avery loves to do the same. Both of my girls have very strong opinions about what clothes they want to wear and these strong opinions will change about every 15 minutes depending on the day!
So, something that should be fun and normal is not fun at all for mom and dad. When Avery changes her clothes it somehow sparks in her the idea to scratch her skin. So, every time she goes upstairs I wonder if she is changing her clothes and getting ready to scratch. Thankfully with this, the older she gets the more interested she is in the outfit and less in her skin. Whew! I'm really looking to her being 3, 4, and 5 years old! 2.5 is already soooooo much better than a 1.5 year old when it comes to eczema!

So, this is still all a part of our everyday life. I want to recognize it again on this blog and hope this helps other moms know you're not the only one dealing with a child with eczema. I'm trying to focus on the positive. She's doing so much better than a year ago. The chances are she will outgrow this in another year or less. I have more sane days than insane days. But I still have those days. I pray every day for her healing or at least wisdom on how to handle it while we walk through it. I don't know why we are walking through this and have been for a year and a half. We both feel rather broken down and definitely humbled. I feel so far from perfect. There are days when I just cry because I have yelled at Avery for scratching her skin. Then I feel so bad for yelling at her. She can't help it. But I yell out of frustration in dealing with it day in and day out and the exhaustion of it all.

So, we will continue to walk through this as we PRAY to walk OUT of this trying time. We will try to focus on the good in the days. In watercoloring and playdough, in riding bikes and taking trips to the library. When we go to the grocery store, we will slip that mitten shirt on top of her clothes while we ride in the car to the store.

I needed to take this moment today to recognize what we go through because it IS hard. And every parent that ever goes through a severe bought with eczema can understand all of this. So, this post is for you.