A Saddened Heart

As a parent, it is heartbreaking to watch your children be sick or go through something difficult.  We have been dealing with Olivia's eczema since she was about 12 weeks old.  It appeared one random day out of nowhere and she literally turned red from head to toe.  This correlated with a time when the weather was just turning from winter into spring and I had opened the windows and let a fresh wave of pollen come into our home and coat all of the surfaces.  Needless to say, since that time I've since become a watchdog for pollen alerts and we sadly keep our windows closed during most of the spring season.  But that was just the start of our issues.  Olivia's eczema wasn't caused by pollen. And despite her myriad of food allergies it wasn't caused by food either.  The fact of the matter is that we don't really know why she has it or what genetic predisposition caused this to occur but it saddens us on a daily basis that we have to watch her go through life feeling so uncomfortable.

Since she was three months, we've had good days and bad with her skin.  She's nearly 27 months old and right now her skin looks about as bad as I've ever seen it.  I thought that once she got a little older it would be easier to handle looking at the rough, red patches which are often scabbed over from her scratching them.  It hasn't.  Since I know that she hasn't eaten anything new or different, I can chalk this recent flare-up to the changing season, a new allergy treatment we're doing and possibly that her system is detoxing as it heals.   I can try to make myself feel better in 100 different ways but the bottom line is, her life and our family's life is affected by this daily.

We never signed Olivia up for swim lessons, despite that being something I had really wanted my kids to participate in.  The chlorine just rips her skin apart and when you have a child with broken, dry skin, just about the worst thing you can do is thrust them into a warm pool of chemicals.

Since the eczema surfaced, we've never had what I would consider an "enjoyable bath moment" in our house.  Olivia hates bath. HATES it.  She does not like water touching her skin (I imagine it itches and burns her) and despite water filters and a myriad of soaps, creams and oils we've tried, baths are short and quick and often full of tears in our house.

We have to severely limit our time outside during the "transitional" seasons (ie: winter to spring, and fall to winter) because the allergens in the air wreak havoc on her system.  In addition to her skin issues, last fall, she had a cough that spanned from August to October.  It kept her from sleeping well at naps and nighttime and disrupted life for a good three months.

Going to restaurants as a family is almost impossible, not just because she can't eat any of the food but because now she's at an age where she touches everything and subsequently reacts to it.

Despite multiple blood tests indicating higher than normal levels of allergy to nuts, we still do not have a solid answer as to whether or not she is anaphylactic to peanut.  So we just carry around the epi-pen and pray that we never have to use it.  That's quite an uneasy way to live and yet the only way to truly test for a peanut allergy is to give her a peanut and "see what happens."  No thank you.

I want her to be able to hug family members, friends and babysitters who are wearing perfume or whose clothes have been washed in a fragranced detergent and not have her skin turn bright red on contact.

I want to enter into other people's homes and not stress out about their carpets or smells that may be in the air that will likely cause her skin to break out more and her to be more uncomfortable.

I want to shop for clothes for her and not constantly look at the tag label to see what the fabric is made out of and put it back as soon as I see "polyester" or "lycra blend."

I want her to be able to sit in the grass. With bare feet.

I want her to be able to cuddle her beloved stuffed animals and NOT feel guilty that I'm allowing her to have them in the first place because they make her skin so much worse.

I want her to be able to squeal with delight when a dog licks her face instead of Matt or I rushing over immediately to wipe her off to prevent her from breaking out in hives from the saliva.

I want her to be able to wear sandals in the summertime without her telling me that they hurt her feet because there's no buffer between the sandal straps and her raw, dry skin.

I want her not to be looked at in the grocery store like she's some sort of leper because her skin is red, and rashy all over and I know people are secretly wondering if she's "contagious."

I want to buy her cute shorts and sundresses in the summertime instead of feeling like I should always resort to pants since less of her skin is exposed to the elements.

We want to take her on vacation.  So many factors would have to be considered for us to do that right now that it just seems impossible to even think about.

My heart breaks for this child.  She has the sweetest spirit and soul and is empathetic beyond her years. When she sees another child in distress (crying, throwing a tantrum, etc.) or when she sees me feeling sad she immediately offers a hug and her eyes well up with tears.  All she wants to know is that the other person is going to "be okay."  And despite her telling me all day long, every single day that her feet (which are by far the worst part on her body with eczema) hurt and itch, it never seems to affect her happy heart.

I have prayed a lot lately out of sadness and frustration with God to just take this all away from her.  She doesn't deserve it.  Then I feel guilty because I know that people deal with much, much worse than this and this is the hand we were dealt and despite all these issues, she is a healthy, joyful, thriving child.  But sometimes I just need that moment of despair where I feel helpless and sad and confused as to why all these obstacles exist for our poor girl.

Despite all of the emotional ups and downs, in general I am grateful that she is not worse.  I'm hoping we can continue to find answers and help her in every way we can.   I wish I could take it all away, but I can't so I'll continue to pray and research and drag her to every doctor I can find who is finding new ways to help her.