May, 2011- My son got a bug bite on his leg. He itched it; he scratched it; he kept picking at it, and I kept yelling at him. Leave it alone! Let it heal! Stop touching it. I tried everything- bandaids, creams, a huge piece of duct-tape wrapped around his leg. See if you can get that off, my stubborn child! Most often, I fluctuated between screaming STOP IT and begging quietly "Please let it heal or it's going to get infected." Then I just gave up. Sometimes you choose your battles and, heck, if he wants to pick his disgusting scabs, that's what boys do.
June, 2011-- During a masterful attempt at cutting my son's hair (I was convinced that buying a new razor set would take me from bowl-cut skill levels to the amazing reconstructive techniques that my husband's barber applies to him every two weeks), I managed to cut my son's head. Smooth move, Mom. In my defense, he was wiggling. And, again, in my defense, I was quick to inform my husband (who was quick to jump in with a "THAT is why you will never cut MY hair") that I think he had a bump there already, and I just, sort-of, kind-of, shaved the bump off. And then, of course, I spent the next few weeks screaming/ begging/ cajoling my son to stop picking at the new scab on his head.
July, 2011-- My husband (who is a paranoid father, as previously noted) finally insisted I take my son to the doctors. Despite me telling him multiple times that the scabs would heal if Mason would just stop touching them, he put his foot down. So I did. He also insisted that I ask the doctor if it were possible that the dog was causing this. And post-doctors visit I sneaked in the front door, hiding the prescription bottles in my purse, not wanting to admit that yes, my husband was right. It was infected and he did need antibiotics, but proud to say that no, it was not the dog. But with prescriptions in hand, thankfully, my husband swallowed his "I told you so". Although, maybe I just couldn't hear it through the pillows covering my ears and the loud humming I was doing for the next few hours.
August, 2011-- Back to the doctors, with a snide comment to my husband: "The antibiotics worked wonders. They caused a yeast infection-- hurrah!" To the doctor, I was less snide. More confused: 6 weeks on antibiotics, coating his body with cream, and all we have to show for it is a yeast infection? And oh, he's got another sore on his chest. What's up with that? Doctor's remedy: New prescriptions. Thank goodness for good insurance. (And thank you, honey, for keeping a good job that allows us good insurance.)
September, 2011-- Now I'm sort of frustrated. The school nurse and Mason's teacher keep sending home notes about the "stuff" in his hair. The supposed yeast infection hasn't gone away, and the original scab has grown to twice it's original size and has made friends of about four other spots on his body. New doctors visit. New prescriptions. Back home. My husband has stopped saying "I told you so" and starting saying "Tell me something. Please."
October, 2011-- The list of prescriptions is now amazingly long. (Have I said thank goodness for good insurance yet?) Four oral medications. (with benedryl and tylenol thrown in for good measure) Nine different topical solutions slathered on in different combinations at different times of day. Two medicated shampoos on alternate days. And vials of good old-fashioned olive oil poured on his head before school every day. No luck.
Sunday, October 23-- Mason woke up in the morning with a sore on his eye. This sore makes over 40 spots all over his body. Each one growing bigger every day. None ever going away. We do a quick emergency room visit. New prescription and finally some bloodwork. Blood was hell to acquire. Never want to do that again. But bloodwork told us nothing.
Saturday, October 29-- We go to see a Pediatric Medical Dermatologist. After reviewing her biography online I suggested to JMahl that he may want to take Mason in. She was hot. Happily, he refused, and I took Mason in. She was not only hot, but she had a hot husband at the office helping her that day. And she was super sweet. I loved her immediately. Mason didn't hate her immediately, which says a lot.
And she immediately had a possible diagnosis. YEAH! Finally something! Wait... What? Are you sure? No. Not sure until we do a biopsy. But no, the dog is not causing this. (Because JMahl, again, insisted I ask.)
Sunday, October 30-- JMahl is now nervous. I am nervous. We've spent the last three days researching the possible diagnosis and getting crazier by the minute. Interestingly enough, we don't do any research together. We speak to each other in code. Not really saying the words out loud. Not really admitting to what we just read on the internet (which is possibly one of the stupidest things a parent can ever do.) Most of our conversations went like this: "JMahl, did you know that..." To which he would respond, "Don't you have female friends to talk to about this? I don't really see the point in discussing something we don't even know for a fact yet." To which I would get annoyed, shut up, and ignore him for the next few hours until he would contritely roll over to my side of the bed, put his arm around me, and pull me to him. And I knew that he did care. Did understand. Just, well, we have different ways of worrying.
Tuesday, November 1--Today is the day of the biopsy. JMahl took off the afternoon to go with me and Mason. My mother-in-law, God Bless Her, stayed home with the girls. Mason refused to get out of bed. I don't blame him. I hadn't slept the night before,and that, for me, is highly unusual. I'm one of those "close my eyes and go to sleep and don't wake up unless a child is screaming bloody murder... and even then, I may not wake up unless my husband kicks me a few times". But for some reason, after tossing and turning for an hour in bed, I still couldn't sleep, and pulled myself out of bed to go downstairs and do some house-cleaning. Yes. Midnight housecleaning. The odd thing was, it was actually enjoyable. There's something very nice-- very accomplished-- about cleaning your house in the middle of the night. Not having children running behind you dropping crumbs in your wake. Not having a dog leaving muddy footprints on the floor, or a husband leaving his socks on the carpet where you just finished picking up three days worth of dirty socks. The floor got mopped, and the floor stayed spotless for about six hours (until children woke up.) And around 3:30am I went back to bed, tossed for another hour or so, and finally fell asleep just in time to wake up with the baby. For the record, midnight house cleaning will not be a regular thing.
Thursday, November 3-- The doctor has said that she should have results by tomorrow. But I'm nervous. My stomach won't stop stirring. Every time the phone rings I jump. My mind goes from "there's no way this is the diagnosis" to "what if it's not and it's worse????". Then I calm myself and remind myself that there are both a lot worse things it could be and, most likely, it's something a lot less serious. But, in a manner reminiscent of early relationships in high school, I check the dial tone on the phone. Yes, it's working. I check that my volume on my cell phone is turned up. Yes. I debate calling the doctor to make sure she didn't loose my phone number... then I remind myself that results aren't due till tomorrow. Just when I'm somewhat sane, I get a call from my husband asking for the doctors number-- just to check... just in case the results came in early. I yell at him for his impatience, hang up the phone, then check to make sure I'd hung it up properly and that there was a dial tone.
Friday, November 4-- There is nothing worse than waiting for the phone to ring... or maybe it's jumping every time the phone rings, but it's never the call for which you are waiting.
Sunday, November 6- My 33rd birthday. The phone rings all day, but it is always well-wishes for a great year. My daughters made me a birthday cake. My husband decorated the house with bright Birthday signs and balloons. My son pulled out his ipod and made me a wonderful birthday song with background beats: You're the best mommy, and I love you. You're so pretty and the best mom in the world. For your birthday, I'll be a better boy and not make you mad. Happy Birthday, Mom.... I loooooovvveeee youuuuuuuuu.....
Monday, November 7-- Still no results. My husband or I come up with excuses at least twice a day to call the doctor's office. "Can we get a note for school saying he's not contagious? Oh, and by the way, have you got the results yet?" And "Is your office open today? Oh, it is.... well, do you have results yet?" Both the doctor and the nurse have told me repeatedly-- and kindly-- we will call you when we get the results.... but it's hard to wait. Hard to jump each time the phone rings, carrying my cell phone around in my bra so I can be certain to hear it ring... if it does ring.
But it's even worse for Mason. The kids at school have gotten mean. "You're gross. That's disgusting. What's the stuff all over you? I don't want to sit next to him... I might get what he has." I don't know what to do. I offer to let him stay home from school. He says "I hate school. My friends are mean. But I want to go to school-- tomorrow's GYM day!" I start to cry, hiding it from him. My boy is in pain. My boy is being hurt by his friends. But he's my boy.
I can't keep sitting around waiting, so I make another doctor's appt-- this time with the eye doctor. I'm terrified that the sores surrounding his eyes, covering his eyelids, are going to have an irreversible effect on his site. The optometrist says whatever it is, it's not affecting his sight. Good news. That's something. And by the way, says the optometrist, if this is a dog allergy, this is the worse dog allergy I've ever seen.
Tuesday, November 8-- It's surprising the things that you never think to ask your children. I guess we, as parents, assume our kids are healthy unless they tell us otherwise. I knew he had headaches occasionally, but I assumed they were from too much sugar, too little water, too much running, too little sleep. I knew his legs hurt occasionally, but I assumed that was the result of his tendon surgery last year. My boy has been through a lot, but he's not a complainer, that's for sure. I had no idea that his fingers went numb so often. Or that they went numb ever, until he asked "why do my fingers go numb so often?" I had no answer, just surprise-- they do??? Why didn't you tell me? His answer, honest enough: you never asked. I can't help but wonder, are these symptoms or is this just little boy? How do I know?
My husband and I jump whenever the phone rings and have started to just give the other a shake of the head- no- when Caller ID doesn't say the doctor's number. Considering my husband's animosity for the ringing phone, I would find it funny the way he rushes into the room whenever it beckons, but I can't laugh.
I found him today in the kitchen, leaning against the counter, staring. What's wrong, I ask,not used to seeing him like this. He started to shake... what if it's fatal? he finally got out. I just looked at him for a moment before putting my arms around him. I held him up, while he fell apart.
It's not fatal.
But how do you know?
I know, because the day he was born the doctors told me to be prepared for his death. They didn't think he'd make it. Four weeks later he was healthy, home, and fine. I know because he's already been through too much for an eight year old boy. Four surgeries, twelve weeks in a wheelchair, constant physical therapy. Too much. God wouldn't do that to him- to us--too.
But how do you know?
I don't know. But in every thought is the prayer, "Lord, make it okay. Make HIM okay. My boy. My love. My heart. Make him okay. I'll stop cursing under my breath when the kids push me to the limit. I'll stop lying in bed in the morning wishing I could just ONCE wake up to something other than squabbling. I'll stop resenting the constant need-need-need having four children creates. I'll stop wishing for more money, a better complexion, a more romantic husband. I'll give up the dog--- if you just make this an allergic reaction-- please! I'll give up sneaking a cigarette when I've had a rough day or just too much to drink. I'll give up too much to drink- anything to drink!-- just make my son better. Please, God. I try to barter. Okay, if this is an allergy, I'll give it all up. If it's just a skin disorder, I'll give up cursing only- and the stolen ciggy. If it's something curable, fixable, LORD, I will make it worth your while, I PROMISE. And if that doesn't work, why don't you give this illness to me so my son can have a full, wonderful, pain-free life? Please, Lord. PLEASE.
Thursday, November 10, 8:15am-- Mason can't sleep at night because of the pain and itching. Tylenol and Benadryl only do so much. Yesterday he woke up with his entire body covered in a light rash, which I can only describe as goosebumps that don't go away. I don't know if this is something else, or if his skin- his body- is about to completely give up the fight. I remind myself that he had his flu vaccine last week, and that could very well be the cause of this new symptom.
10:50am-- I call the doctor. The nurse answers. Yes, results are in. The doctor will call to discuss the results with me as soon as she has a moment. I think this is worse than the waiting. Knowing that someone KNOWS what is wrong with my son, but it's not me. I call my husband, am reassured that he will be by the phone waiting for my call. I reassure him that it's going to be okay... probably not a big deal.
I send a text to my brothers and close friends who have been waiting by the phone with me. "Results are in. Waiting for call to discuss them. PRAY." Within seconds I receive a text back: "We are." The phone beeps again: "Will do". Another beep: "Praying." I start to cry. This is why God gave us families-- so we are not alone when we are scared. I find myself thinking about when I was a child, sharing a bedroom with my little brothers. I used to get so scared of the dark- shapes distort themselves at night to be something horrific and scary. No matter how bad the fear got, I only had to reach out my hand to touch Jared's hand... reaching across the space between our beds. I only had to whisper a "hey, are you awake?" to hear Trent's giggling response and know that I wasn't alone. I'll never be alone. Fear is so much easier to deal with when you're dealing with it with someone. I feel for my husband in these moments. He has me, but no siblings to call, to rely on. No "Will do. We are. Praying." to help alleviate the terror of the unknown. I thank God and my husband, silently in my head, for our decision to have four children. My children will never be alone.
11:27am-- My hands won't stop shaking, and I don't know if it's fear or the extra pot of coffee I just drank. Probably a combination of both, if I'm honest. Dugan knows something is wrong. He's at my heels every time I turn around. I keep tripping over his feet or getting swatted by his tail. I call my Mom and let her know that we will have the results today. She breaks into prayer, ending with "Thy Will Be Done". I can't help but add silently--but only if it's MY WILL TOO, Lord. I take it back immediately. I don't believe in a vengeful, unconcerned, or "relishing in the pain of children and parents" God-- but I don't want to challenge Him either.
12:52-- As the phone continues to not ring, I've convinced myself it's not going to be bad. That we have been stressed out for nothing. If it WERE that bad, the doctor wouldn't have waited so long to call. If it were serious, she would have called immediately, or had us come to her office to talk about it, or sent us to the hospital. So, it's obviously not that bad. I read a study a few days ago that said that waiting for biopsy results causes more stress than actually receiving the results. I believe it. So I'm going to stop stressing. I'll clean my house, singing along to the radio, content in the knowledge that if it were bad, I'd know by now. No news is good news. That's what they've always said, right?
2:08pm-- I've convinced myself of two things: 1/ The doctor will not call until after 4, when her office closes. 2/ The results will rule out all the really bad things and just leave questions. If she had an answer, she would have called already.
Documenting this is the only thing keeping me sane right now.
2:24pm-- The phone rings. I check caller id and see a number I recognize. I take a moment to breathe before I answer the phone.
3:05pm-- I've made the important phone calls, sent the important texts. My husband first. He says "I just wish I could hug you right now." I say "When you get home, I don't think I'll be able to let go of you." I call my Mom. My Dad. Text my brothers, my close friends. The responses start pouring in.
I was right about one thing. Wrong about the other. The doctor called before 4. It's not what she thought it was. It's not worse. It's better. It may be chronic, it may be painful and disfiguring, but it is treatable. It's just Psoriasis. A rare pediatric form of psoriasis, but just psoriasis. I cry in relief.
Two weeks ago-- a week ago, even-- this diagnosis would have been upsetting. But now, after spending a week researching everything from Systemic Lupus to Skin Cancer, terrified that I may loose my child, I am relieved. It's not going to be easy, but he's going to be okay. See, honey? I told you it wasn't fatal. He's going to be okay.
I've developed a new understanding, a new sympathy, even empathy, for parents who are told their children may have a horrible disease-- the disbelief, the guilt, the fear. I don't think I- or my husband- or our family-- will ever forget the fear of the last few days. But I can breathe now. God answers prayers.
I write all this and share it with you for a number of reasons. One, to you, my family and friends who read this, you now know what it is when you see Mason. You will understand that this is treatable, that he will be okay. No need to worry (it's not contagious-- unless you are related). And two, to our neighbors and acquaintances who may notice his skin and not want to ask while wondering "what's wrong with him"; and to you who may have a child come home from school and say "there's this boy in my class who's got sores all over him"-- you won't say "see? this is why I make you bathe every night instead of just two or three times a week (depending on how dirty he is) like his mom." You'll explain to your child, as I must explain to mine, that sometimes things happen. Sometimes we have things in our body that don't work the way they are supposed to. And this isn't something wrong or bad with you. This isn't YOUR fault. This isn't because you are bad or dirty or God loves you less. It's just the way things happen sometimes. And you're going to be okay. Thank God for this diagnosis. Thank God for modern medicine. Thank you, God.
You will be okay.