Last Friday night, while driving home in the dark after dropping John off at the high school homecoming football game, I drove over some skunk guts. Those skunk guts made my pretty new Volvo stink to high heaven. I was so mad! The next morning, our garage smelled like skunk guts and the stench in my car was even worse. Yuck. How does a person remove the smell of skunk guts? The answer is you don't - you just have to wait it out. And so that's what I've been doing. Today the smell seems to be gone - thank goodness for that small favor.
While spending the weekend suffering the smell of skunk guts permeating my air, I concluded that skunk guts pretty much sum up where I'm at... things stink! But the good news is, eventually the smell goes away and I realize that things will someday return to normal.
So that's what this blog entry is about: the skunk guts I am dealing with. I thought the analogy was appropriate.
Recently I've received quite a few emails from friends and family wondering where the heck I've been. I keep meaning to take a minute to post an update on what is happening... but every time I think about it, I become overwhelmed with the thought of explaining this mess we are in. Plus... pictures. I like to blog with pictures... and coming up with pictures of my recent activities has been a stretch (no one wants to look at skunk guts!). However, the good news is that I played with pictures last weekend, so I now have a lot of visuals to add. YAY! So here we go...
In a nutshell: I'm spending another day waiting for yet another phone call from the school or the doctor or the nurse or all three. It seems as though my entire life is now consumed with bureaucratic red tape as I try to coordinate John's health care and educational needs.
Where we are at: John's immune system crashed when Jeff's sisters were here. It was very frightening and really insane trying to deal with John while attempting to entertain (or not) Jeff's family at the same time. Prior to this visit, we'd not seen one of the sisters for 7 years and the other sister for 14 years, so they had no idea what was going on. In the end, they left early, and I will always feel bad about that. But during the short time they were here, I managed to take a few pictures. Here are the best of the best:
Since then, John's health has continued to deteriorate. He's missed so much school due to home health care nurse visits and infusions, as well as with a bazillion medical tests and doctor appointments, that the Immunologist and the school requested that he receive home bound study. Home bound study provides a tutor in the home who will work around the medical needs and appointments.
So... that is good... other than the red tape involved has made this a nightmare. Three weeks later, a million phone calls into it, and about 30 faxed forms, and he is STILL not receiving home bound studies. That means he is still required by law to attend school - which is hit and miss at best, because 1) he doesn't feel well, and 2) he has so many appointments.
Additionally, we are dealing with a new nursing company (the company who provides the in-home care on the days that John receives gamma globulin infusions), and the company is disorganized and much more stringent about how they do things.... which means even more phone calls and paperwork on my part.
In the middle of medical appointments and trying to coordinate all this, the high school has decided that if at all possible, John should try to attend one class a day at the school. The reasons for this are varied, but after several meetings up at the school, I am now in agreement with this plan. So that means revised paperwork and processing a new request for home-bound. In the end, this will be the best thing because it will allow John a special status (don't know much about this part) on his college applications, meaning the high school counselor will provide a cover letter and a phone call conference with every single school he applies to. Right now, this is a top priority since he is failing his classes and his GPA is going down the drain. With the special status, there will be an explanation of what happened during his junior year and they will verbally discuss John's potential with the colleges he wants to attend. At this point, the special status is the ONLY way he will get into college, so we really need that.
In the meantime, John is muddling through as best as he can, and I am making every effort not to smother him as he continues to try to have a normal, active teenage life. Last weekend, John and Taylor attended the DHS Homecoming Dance. He rested all day prior to the dance and seemed to be feeling pretty well before he left. After the dance, he told me it was the best dance that he's ever gone to, so I think they had fun. I count my blessings with each and every smile he shares, and this smile was hard earned and well deserved!
Through it all, in spite of the handful of smiles we see, John's emotional state of mind is a mess. He is dealing with a whole lot of anger - anger towards the doctors, the school, and most of all me. He just wants to get well and be normal, and he claims that the infusions are a waste of time because he says they don't work. Unfortunately, it will take 6-8 infusions before he begins to feel better and stronger. His numbers were at 502 when he crashed. A healthy person's low average number is 1800, so 500 was potentially life threatening. Had John been exposed to the flu with those numbers, he could have died. And a cold will turn into pneumonia... which is another reason to keep him out of school for a while. The request was for 90 days, but at this point, home bound has not even started yet, so who knows how long it will last?
To answer burning questions about how *I* am doing... I'm hanging in there. After 4 weeks of dealing with this, I am finally accepting and adjusting to my new normal. I don't like it, and I'm still hurting and angry (at everyone and everything), but I'm slowly beginning to accept things for what they are: skunk guts! It took me a long time to reach this point - many sleepless nights and a whole lot of denial - but each day is a little better for me. When all this happened, I told Jeff that he was either with me or against me, but that my priority was John and that he could support me or fight it... either way, I was going forward with my plan of action, which was to be tenacious in my pursuit of doing what is best for my son. Jeff jumped on board and has been wonderful. He's still in denial, but he is supporting me as best as he knows how.
To keep myself from going insane, I've spent a lot of late nights reading. My chosen genre is fantasy because it is as far from my reality as I can get. It allows me an escape of sorts. I've read the entire Southern Vampire series (True Blood on HBO is based upon these books), and now I'm searching for something new. If someone had asked me six months ago if I would enjoy anything vampire, I would have laughed out loud. Vampires? Me? Not a good combination because I'm a fraidy-cat. However, after dealing with my own personal drama for the past month, I've decided that vampires are pretty tame in comparison. So vampires it is! Sookie Stackhouse is a hoot, and I giggled non-stop as I plowed through all eight books.
I've also been crocheting, because for some reason I find that it relaxes me - I find the repetitive nature of the stitches and the counting to be soothing. Here are a couple of my recent projects:
Last week I ordered a bunch of quilting patterns and I am hoping to begin sewing some Christmas projects as soon as we get this home-bound study request processed, because once that is processed, we may be able to develop an actual daily routine. Right now, every day is chaos because I never know if John will need to come home from school (this happens a LOT), and there always seem to be last minute doctor appointments as the docs think of new tests and procedures to try.
Alyssa has been home twice during this crisis because 1) she is worried about John, and 2) she came home to celebrate my b-day with me. We attended a craft show together as our annual celebration and it was so good to see her. She is thriving in college and is very happy, which in turn makes me very happy. I'm so glad that she is living her own life away from what is happening with John. She has always hated that he requires so much of my time and energy, so it is good that she doesn't have to deal with that anymore. Here are a couple of pictures I snagged from her Shutterfly account. I think they show how much fun she is having living the college life:
So that's where we are. John has an infusion scheduled tomorrow (8 hour in-home procedure), as well as two medical appointments on Wednesday. We are hoping that home-bound studies begin this week, but at this point, I have no idea where the district is in regard to the paperwork. We may have one more week to wait as they consider the request and line up a tutor and his lesson plans. I've been told that the request will be approved... so I have no idea what the hold up is.
Thank you to everyone for thinking of us, and thank you for knowing me well enough to understand why I've not taken the time to touch bases. I've worried about my friendships, but keep telling myself that my forever friends will understand and will forgive me. And a huge, giant, colossal thank you to all of my friends and family who sent birthday wishes. Your kind thoughts meant more than words can say. Thank you from the bottom of my heart for making my birthday special.
Skunk guts... they stink. But when all is said and done, the smell does go away, and I know that in the end, the same thing is going to happen with this mess we are in. I have faith that John is going to get better and that he is going to have the quality of life that he deserves, because after this weekend, I am convinced that no one has to live with skunk guts forever.
