Worried Days - PIDD Diagnosis

But I can't help rolling over, one last time, and putting my hand on his chest, just to feel it rise and fall again, one last time... as I try to close my eyes ...

It is the start of another long day. I go through all the mundane daily chores as normal. I climb out of bed begrudgingly, still sleepy from the lack of sleep I had last night. I go to the bathroom to get my shower, always the best part of my morning. The hot water always feels so good on my tired skin. I let the steam slowly wake me up, one pore at a time. Rubbing the sleep out of my eyes finally, I start to actually “shower.” I realize that probably more time has passed than needs to, so I try to rush through the rest of the process, finish and get out. I yell for the kids to start their showers. This is when it all starts. I am stuck trying to referee another fight while combing out my hair and holding my towel up so that they don’t see anything x-rated. It is about this time that I realize it … shoot! We’re going to be late again! What else is new? I rush them in and out of their showers. Throw on some clothes (smelling the jeans I pick up off the floor to make sure they are clean) check the kids for a once over. Brush teeth, grab book bags, pop-tarts, drinks, lunch boxes, laptop, purse … and hit the door running! “Stop hitting him” I say to Phoenix as we’re getting in the car, “but Mom, he started it” he bellows back. “I don’t care, how old are you? You know better!” I say in my usual angered voice with the much-practiced furrowed brow. We get in, get buckled and back out the driveway, finally on our way. I don’t even remember the drive to the school; it has become as second nature as breathing. I could probably make it with my eyes shut; however, I won’t try it today. I get the kids to school, without any major flesh wounds, fed, cleaned and dressed, AND before 8am. Which to the average American may not seem like such a big task, but in my house, it seems like a major undertaking every morning.

Next, it’s off to work. Now today is no different from any other day. Nothing is any different other than the phone call that I am about to receive. I had taken Jayden to the Dr. a few weeks prior to see if he had allergies and come to find out, he wasn’t allergic to anything. Now, a little history lesson on Jayden. According to the Dr., he wasn’t even supposed to be born. I was supposed to miscarry. I started spotting when I was 6 weeks along (I had 2 previous miscarriages). They couldn’t find a heartbeat; I was having a lot of pain. My hormone levels were decreasing, instead of increasing. They thought my pregnancy was ectopic. I was scheduled for a D&C;to have the pregnancy removed a day later, but I begged for another set of labs, and they granted me this (to appease me I suppose). I called everyone I knew to have them pray for me, and sure enough, the next day they called me to come in, and my numbers had tripled! They did an ultrasound and there was a heartbeat! I wouldn’t say my pregnancy was hard, but it wasn’t easy, and I developed toxemia. When he was born, he was a little premature, and had a birth defect, Tracheomalacia. He has had a lot of illnesses, and was always prone to respiratory infections and especially the croup/wheezing/asthma type infections due to the Tracheomalacia. But back to the story, so he wasn’t allergic to anything. This concerned her and she had taken some lab work, you know the kind “just to rule things out.” So I had been anxiously awaiting this phone call. I had even already called once actually checking to see if the results were in yet, and some were, but some weren’t, so I was waiting on them. And today was the day that they would call back. And they did just that.

The phone rang, and I could tell from the caller ID that it was them. I answered, but hesitated a little when I said “hello”. The nurse on the other end replies “may I speak with Jayden’s mom?” Now why they never ask to speak to me by name is beyond me, but I digress. “This is she” I say, and she continues “we have Jayden’s lab results back, and well” she pauses slightly, as if choosing her words “it seems as though a few of his levels are a little low” I say in return “ok, what exactly does that mean?” She never misses a beat answering my question only barely “well, the Dr. wants you to make an appointment to come in because she needs to discuss everything with you, I can only tell you what levels are low and what the ranges are.” “Well, that kind of sucks doesn’t it?” I say, not really realizing I’ve actually said it out loud. She agrees, but can’t really say much more. I make the appointment with the Dr. and the countdown begins.

This day seems to drag by. As I began to scour the internet for information about low IGG and IGA levels, it sounds really scary. I start to think that I just need to close it all out of my mind until I talk to the Dr. After all; you never know what on the internet is true, right? Right? I’m trying to convince myself more of this than ask myself, mainly because I don’t want to think of the possibilities of this being real. As if the Tracheomalacia wasn’t enough -- the weekly, sometimes everyday appointments, the apnea/heart/lung monitor until he was a year old every night -- now this? Already he doesn’t build up immunities against even the small infections, now I have to be afraid that even his own immune system basically fights against him. All this time we’ve been told, “he’ll grow out of it… he’s just one of those sick kids” or “he’ll be fine when he’s 2” then they’d say “when he’s 3” then 4 then 5 … you get the picture.

To pass the time, I get online and chat with a few of my friends. I post a myspace blog. I try to vent a little. I talk to my husband here and there. I get some support from my friends. But no one really understands how I’m feeling. A lot of people try to tell me not to worry. HA! That’s easy for THEM to say. This isn’t THEIR child we’re talking about, it’s my child. It’s so very hard, being a mom, and having all of these uncertainties, lying awake, watching, waiting, praying, listening, crying.

The days finally pass and his appointment is here. The Dr. tells us a lot of information about his immune deficiencies. Not much different than the stuff I found online. She discusses the treatment options with us – the real scary stuff now. We have a choice between antibiotics every day or transfusions once a month.

Oh, the thoughts of seeing him laying there hooked up to an IV for eight long hours … getting transfusions of immuno-globulin that his body may or may not accept; that he might get really sick afterward, that his joints might ache really bad afterwards, that he might be really nauseas afterwards… these thoughts scare me. And they would you too, if it were your child. And you wouldn’t NOT be able to think about them. But, first she wants to re-do all of the blood work, so this means, MORE waiting. I hate waiting. And after we get all of his results, we will start on Phoenix, as this is hereditary. (So then we will be waiting and worrying with him as well.) So, we go through our days, waiting; doing our chores … kids fighting. After I referee the fights, and pack the lunches, make sure no one smells bad, drive the kids to school, get to work, go home, cook dinners, do baseball practices, laundry, then home again … and bed … I find myself finally all alone with me. As I lay in bed at night I am forced to face all of these things that I try to push away during the day. I try to hide behind fake smiles. I force out the “I’m fine how are you?” when people ask at the ballpark. I try not to think about all of this stuff, but I can’t help it. It’s on my mind. A LOT. It worries me. Is that so wrong? As I lay in bed at night, and I have all of these thoughts running through my head, these things that I cannot escape from, I know that God surely wouldn’t give me something that he didn’t think I could face. I also know that He has a plan for Jayden’s life. After all, he wasn’t supposed to be here, medically speaking. But … I can’t escape the thoughts, the fears, the worries; they flip through my mind faster than a man holding a remote with new batteries. I try not to let them overtake me. I try to keep them in check. But I can’t help rolling over, one last time, and putting my hand on his chest, just to feel it rise and fall again, one last time …. as I try to close my eyes ….

Comments

Wendy_Scholte says,

Isn't it amazing that your life can be so consumed with your child's illness and yet the world just keeps on going on. The same things happen every day! As a mother I can only imagine the agony you must deal with. I hope that Medical Science will find some sort of a cure for your son.

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