Sunday, May 19, 2019

A Thousand Tiny Cuts

I wish I could say that Ren and I have come to terms with the spine news, but we haven't. I wish I could say that my powers of positive thinking and spiritual beliefs have helped me know it will be okay, but that's not true, either. Instead, in the down time I've had between the fifth-grade camping trip, Stow's "Nerf Karate Panda" birthday party, and various graduation activities this weekend, I've been mentally composing a list of the thousand tiny cuts that threaten to do us in. 

So, I made a table. I know it's lame and that you probably don't even care, but I feel like someone needs to keep a record, a record that will either tell of our amazing ability to persevere and overcome or one that so clearly maps the detours and road blocks along the path to our demise.

September 2009
Moe starts as teaching fellow at small liberal arts college.
December 2010 
Sky formally diagnosed with autism after extensive testing; Pink is diagnosed with a severe peanut allergy.
March 2011
Pink is diagnosed with other food allergies.
May 2011
Stow is born.
May 2011
Pink is hospitalized and receives asthma diagnosis.
September 2011
Ren’s back goes south on Sky’s first (and Ren's last) ever Cub Scout camping trip.
March 2012
Ren has his first spine surgery (a lamnioplasty) in the lumbar spine.
March 2012
Moe accepts position as a Visiting Assistant Professor at the same college.
May 2012
Moe successfully defends her dissertation. 
May 2012
Stow turns 1.
August 2012
Ren has his second spine surgery (a laminectomy) in the lumbar spine; Stow is diagnosed with C-diff and a MRSA infection.
March 2013
Moe accepts a tenure-track position.
April 2013
Stow has an endoscopy, colonoscopy, and cystoscopy to determine cause of multiple infections and repeated “failure to thrive.”
May 2013
Stow turns 2.
July 2013
Family moves from one small midwestern town to a another small midwestern town.
August 2013
Moe starts new job.
November 2013
Ren has first his lumbar fusion surgery.
Winter 2013/2014
Polar vortex—Ren doesn’t leave the house from November until April. Moe shovels a LOT of snow.
March 2014
Ren and Moe go to Mayo Clinic to see if anything can be done for the spine. They are told (paraphrasing), "The spine is bad. It won't get better. Learn to live with pain."
May 2014
Stow turns 3.
September 2014
Ren has a 2-level fusion in his cervical spine.
May 2015
Stow turns 4.
September 2015
Ren diagnosed with severe depression.
November 2015
Spine surgeon discovers spinal cord is at risk of being permanently damaged due to stenosis.
December 2015
Ren has a second lumbar fusion and doesn’t leave the house from December to April.
February 2016
Stow is preliminarily diagnosed with autism.
May 2016
Stow turns 5.
December 2016
Family completes first year since 2010 that no one is hospitalized.
March 2017
Stow is formally diagnosed with autism after extensive testing.
May 2017
Ren’s kyphosis is so bad, they (Ren, Moe, and the specialists) determine it needs to be fixed so Ren can have a chance at a better quality of life.
Stow turns 6.
July 2017
Ren has a spinal fusion from T2-S1 that requires 140 staples. He doesn't leave the house for anything except doctor's appointments until October.
August 2017
Ren hospitalized for heart attack symptoms.
September 2017
Ren hospitalized with double pulmonary emboli.
December 2017
Lung cancer scare for Ren.
January 2018
Doctor suspects bone bruise in femur and tells Ren he has to limit walking for six weeks.
May 2018
Stow turns 7.
December 2018
Moe gets tenure. Ren cleared by spine surgeon’s office after x-rays and exam show fusion looking good, completing only the second year since 2010 that no one was hospitalized.
January 2019
Polar vortex. Ren starts feeling new pain and hearing new noises coming from his lower back.
April 2019
After months of phone consultations, Ren finally agrees to be seen at spine center again.
May 2019
Spine doctor discovers broken rods.
Stow turns 8.

When I am looking on the bright side, I remind myself that these circumstances would test the strongest of families, and I tell myself we should be proud of how we've pulled through and found humor and joy even in the hardest times. But, when I can't find the bright side, I wonder why the hits just keep coming and doubt that I have it in me to keep fighting.

I've promised myself and my readers that this blog will always be "real," and sometimes real means that I don't know what comes next or whether we have the grit and strength necessary to face it.  I don't know how we go on from here, but I do know that we have a spine consult scheduled for this week and that Ren and I will do what we can to keep moving forward until we just can't do it anymore.


Janelle said...

I feel like I need to touch base with you as this sounds a little familiar. I have a mental list of similar random blows to my family and I wonder how we keep going and if other people have so much to deal with and am I just being dramatic about my family's problems.

I don't have any advice. Just know you are not alone and you already know you are very strong. I have one child (now 28) who is on the spectrum, another (now 25) who has been severely depressed, on all the medications and treatments, including electroshock therapy, for the last seven years. Both children have been hospitalized for suicidal ideation at different times only to find out it isn't really a treatment, just a way to keep you alive until you get some shit together.

My husband has many genetic conditions and had open-heart, quadruple bypass last year. My depression comes and goes, especially after my diagnosis and treatment for colon cancer 4 years ago. This year looked like it was going to be different with no crisis impending, and I just lost my job (which I loved) of 13 years. So at 59, I'm back on the meat market.

I'm only saying, I know a little of how you feel and I want you to know you are not alone. You are all worth fighting for. You give what you can and you call on your village when you have to and you let stuff go. All that matters is love and finding some beauty in the little things. So hold those little humans close to your heart and remember how much they need and love you. Get as much help as you can. Try to take some time just for yourself. There's a reason you are here and we can't see the big picture.

Thank you for being honest. The world needs more of that. Sometimes we all need to say, "This just sucks and I don't know what else to say."

Mom on the Edge said...

Thank you for commenting. So many wise words!