Jenelle finally got her repaired wheelchair back a week ago, and the same abductor is tearing again. She has really kept us on our toes of late with mic-key button replacements and seizures. In fact, the same button we replaced a week and a half ago had to be replaced this morning. I hope this doesn't turn into a new trend. She is happy though, and loves baseball right now.
I'm doing well - had another follow up at UCLA this week. My blood work still shows the effects from chemotherapy 6 months ago, but my energy level is much improved and of course, cancer tests are still clear. The new "less carb" diet is going well and I've officially lost 10 pounds. I re-test my blood work in a few weeks to make sure we're going in the right direction.
So, now it's time for something I rarely do - show my fragile side. Mentally, emotionally ... in all honesty... I'm hanging on by a thread these days. Bear with me...
I'm constantly complimented on my ability to be so up beat and positive. Well, I'm been taking an anti-depressant since February 2009. Shortly after I freaked out in the hospital when I was there with no neutrophils, but feeling "fine". I was depressed, and the pills were a savior. But lately I have to wonder if these happy pills aren't doing me wrong. If they aren't making me feel invincible when really all I need is a good cry. Yet the tears won't come because my happy pills won't let them. I'm sure that opens up a can of worms I really don't care to debate right now, but anyway...
Being honest here, I have to say that these past few months, I've just been going through the motions of daily life. Keeping that stiff upper lip and carrying on with the illusion that the sun will come out tomorrow, and that my life isn't all that bad as it sounds. Never giving up. Things can only get better. Yada, yada, yada. When in reality I want to cry, scream and just say enough is enough. When does it end? When do I get a break in life? When will I win the lottery? When can I be selfish for once and not care for my responsibilities in life?
And as I feel like this, like I've had enough putting up with crap and I think I'm allowed to be human and I'm long overdue for that break down that I deserve; I get an email from a friend from high school - thanking me for my optimism and telling me that I've been an inspiration to her during difficult times. Then an hour later, I get a text from a friend I haven't seen in a while, telling me she thinks and prays for me daily. And then it hits me... I keep it together, because all of you would accept nothing less from me. I'm a survivor, an optimist, an inspiration, but yet so very human.
Three years later, my cancer is still affecting our family. I'm well now, but the worry, the depression, and all the work we still have to do to get back to the way things used to be before the cancer are still present. We still fight it daily, and we are barely surviving.
I know that no one would ever tell me that I haven't made an effort. That with Jenelle, and my cancer, and the recession and recovery that we are all facing - no one would blame me or be surprised if I just gave up and moved on (in life, not as in exiting this world.) The odds have always been against us from the beginning. Most people only face one of these events in their life and/or marriage - surely the fact that we've made it this far means we've done well, right?
I am human. I fear that every day is the day Jenelle begins to regress, or worse, her last. With every bruise and ache or pain, I worry that my cancer has returned. Everyday I check the mail to see if I've been paid, and then I worry if that money will be enough to pay a bill, or the rent. I worry that my happy pills are just blurring my reality just enough to convince me that things are improving when really they aren't. I pray each morning my car will start. This is my reality.
As a Christian, I have faith that God has purpose for me, for my family, and that certainly this has to suffice. I see myself as a modern day citizen of the second Great Depression; that surely I'm not the only one suffering in this day and age because of our economy and the rules of our society. I sometimes wonder if the "end of days" as the Mayans predict in December 2012 wouldn't necessarily be a bad thing. I guess I'm just human... waiting for some miracle, or some extraordinary event to shake things up in my life.
So, that is where I am emotionally. Putting it all out there for the world to see. Letting you know, that I'm no saint. Thank you for letting me vent here. This blog has been so therapeutic, and I know I haven't lost all hope. When I'm feeling so down, I think of all of you. Those who find inspiration in my life experience, and those who reach out to tell me. I'm human too, and sometimes that little reminder that you hesitate to send to me is exactly what I need to survive the day.
Thank you for the continued prayers. I promise, I'll keep you posted.
Cheers to being honest and real. I've known people in my life to go through tragic and so often I have found myself also saying the 'you're so strong and I admire your courage...blah blah blah' and never realised until crap happened to me that while those words are comforting at times you realize that you also are sometimes broken, sad and in pain but find yourself masking it from others because what they expect of you - to have your stuff together. So, thank you for being raw and real. I hope for a little luck and peace to come your way...and genuine happy moments that can carry you through.
I read your blog occaisionally, I dont know you or your family but always find reading your posts as I am not alone. I too have a severly disabled child (21 yrs old) and had cancer in 2008 that only required lumpectomies & radiation. But since then I have felt down and sad internally but always have a smile on my face and pretend all is well at work and outside my home. I think I just want to escape and not have people ask me about things that would probably make me break down and cry so I too put on a mask. I just wanted to say thank you for blogging because it does make those of us dealing with some crappy things know we are not alone and you put things in great perspective. Hang in there!! what else can we do :)
I have been proposing to remove February from the calendar because what you describe seems to be recurrent every year—seizures on top of illness on top of work stress on top of keeping everyone fed and sheltered on top of g-tube surgery (Ansel's getting his "installed" in a couple of weeks). It does help to see we're not the only ones on edge! One single special needs dad blog out there rebelled against the idea that we're only given what we can handle, quipping that if he were weak and unintelligent he'd have a "perfect" child and an easy life?! Thanks for the vent, because my duct and many others' are connected to it, and once open, helps clear the air for all of us.
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