Not Just Another Movie

Not Just Another Movie

It had been a very long time since The Boy and I went to a movie without drawing stares from old and young.  You see my son is the kind of kid that holds the door open for as many people as he can.  I used to rush him, but I've learned to just let him be and sit someplace to wait for him.  He will stand at the door saying "you're welcome" to every person that says "thank you".  Yet it isn't his maturity or his chivalry that elicits the stares.  It is the eczema, his constant shedding of skin and the ever present red rash all over his body.  Imagine having dandruff all over your body. Oh, and I mustn't forget the constant head to toe itch that drives both he and I crazy. That is what my son, all of nine years old, lives with...and he lives well.  If you were to spend five minutes with him you would quickly see that Orion has what we commonly call an "old soul." He is very connected to life...so much so that he can almost understand and even excuse people for staring at him.  We decided that if he ever had enough of it he would simply walk up to the person and say, "Excuse me, would you like to know what is going on with my skin?  I don't mind telling you."  Or a variation of it like, "I know you stare because you feel bad for me, but it would be better to just ask me and then you'll see that it's not so bad afterall..."  He would be perfectly able to deliver such sentiments, because he has learned the very adult lesson of "perspective." That it's not the circumstance but how you view the situation..perspective. While perspective helps you cope, it unfortunately does not eradicate the problem..and it doesn't stop life from happening.
The Boy developed eczema when he was three months old.  Now, I know that the word "eczema" is perceived to be another word for a "rash".  If it were only that simple.  This eczema, as a fellow fighter in the war explains it, is not just a disease of the skin, it's a disease of the soul. He has been pulled out of school when the rash got so itchy that he was no longer learning. He has been given oral steroids when he's come too close to infection, which has affected his adrenal glands. He has endured the most strict diets, eating whatever I told him he could eat, which sometimes felt like an uphill battle.  Now: throughout the years he has had times of relief.  He drinks Kangen water, which was (I firmly believe) the first step toward changing his health.  Thanks to the water the chronic asthma disappeared from our lives.  It was amazing.  He enjoyed a time of great and constant health until a couple of months after the worst thing that could have happened to him.  He lost his beloved Tita, my dear Mama.  His love for her was special.  Something irreplaceable.  Two months after she died he broke out into the worst flare up we had ever endured.  For eighteen months he has had very little relief.  He would scratch all night long and his skin would shed so much that I had to change his clothes five or six times a night.  His bed would be covered in skin flakes so I would have to change that as well a couple of times a night.  He lost his appetite and of course started losing weight.  Because this flare up looked so different and because I was engulfed with fear after losing my Mom,  I had him tested for every possible disease.  I needed...longed for answers, and none came.  With the end of the daylight came the beginning of torture in our house.  The crying was so heartfelt.  He would cry, "God, please heal me Father.  My mom and I can't take much more of this." Please make this eczema go away."  Sometimes those words would be repeated over and over again between loud sobs until he collapsed exhausted only to awaken one maybe two hours later.  He started to lose his eyebrows first and then his scalp became so flaky that his hair started falling out as well.  Bathing became torture for both of us.  Me begging him to get in the bath and him crying because it burned his skin so badly.  I was so tired from grieving my mom, from not sleeping, and not eating that I started giving up.  I didn't fight him to bathe.  I didn't fight him to eat.  I didn't fight him to let me put the creams on him.  We were withering together...slowly and painfully.  We had a time of relief in December with oral steroids, which of course work but as we all know are a very temporary fix...like moving the chairs on the Titanic.   As predicted, once the steroid wore off the rash came back, though I must say I was glad for the time of relief, the very short time.  So, the eczema came back and I fought it as much as I could.  I decided no matter what I would stay focused and I did the bleach baths, the wet raps, and every other thing I thought might help him.  All we were doing was slowing the downward ride.  I started to get nervous again and impatient, and even unkind toward my son for scratching and not resisting the urge.  How unkind indeed.  Who am I to ask him to have self control over something that I have never experienced.  How can I expect him to ignore such a primitive urge to scratch and itch? But I had tried EVERYTHING! Really, we've come short of climbing the tallest mountain to find the one precious herb that only grows once every ten years, and blooms the rarest of flowers that has to be picked at exactly 3:02 am on the evening before it withers and dies, put in a massive glass jar, carried ever so slowly down the mountain and boiled for 62 hours in water from the purest river to finally be used in a sacred bath for your eczema baby.
Well, that brings me to last month, February.  The Boy turned nine and I realized that he is growing so fast and so strong.  That night I cried out to God, as I have done so many times before.  Then I just sat there in silence for what seemed like an eternity. And then I initiated an action that didn't involve scaling a mountain or foraging for rare herbs,  I "facebooked" "eczema" and found a page that truly has changed my life...our life.  Through the page I found a mom who had chronicled her experiences with her daughter's eczema.  There were pages and pages filled with pain, with sorrow, with frustration, with despair.  I read them all in one night and just cried for hours because I felt like I had found someone that could understand me and knew exactly what I was going through as a mom.  Word for word she connected with me, as if I was reading my own story about sleepless nights filled with tears.
I followed the group for a couple of weeks before I decided to give it a go myself.  This Dr. Aron from England seemed to have potential, but of course I couldn't get too hopeful because I didn't think I could handle another fail.  I did the consultation on a Friday and by the following Monday I had my prescription in hand.  I found a wonderful open-minded local pediatrician who came on board with me and helped me fill the prescription.  It took two days to get the cream and all along I felt as if I was a child waiting to open my first Christmas present.  I prayed and fasted the day I picked up the cream.  I was scared that it would hurt and burn his skin like so many creams had before.  The night we started I surrounded myself with an amazing support group.  My friends helped me apply the cream and keep the boy calm.  There was crying of course because it did burn, but one of my friends talked to him, another rubbed cream on him, two others faced handheld fans wherever he pointed, another helped him not scratch...and I...I just held him and cried along.  It was amazing and exciting and uplifting to feel so loved.  We applied the cream two more times that day.  His skin became very dry and my heart sank.  I thought it was over.  I emailed Dr. Alan and he asked me to presevere and not give up.  He told me to give it three days and persist.  I did.  Two days in The Boy looked like a different kid.  His face was completely clear.  His scalp free of dandruff.  His back as soft as a newborn baby.  I cried.  I exhaled.
Back to the movie.  We went to see Cinderella...my son is a natural born romantic and has no shame about it.  We didn't have to get mentally prepared for the stares.  I didn't have to give him benadryl to help with the itch during the show.  I didn't have to worry about how much worse he would look after two hours watching the movie.  We didn't rush home.  We ate frozen yogurt and walked around Burbank.  We sat and listened to a street performer who The Boy had met before, his name is Eric and he is a wonderful singer.  The Boy told him he is going to be a singer too and they chatted like two collegues encouraging each other.  I just sat there.  Literally, just sat there and watched my son, who can be nine but can also be 40.  It felt like the beginning of something amazing.  And so, you see...this was not just another movie.