Special needs parenting when one parent is chronically ill

Special needs parenting is no walk in the park.  Life is challenging on the best of days,  and down right impossible on the rest of them. 

What happens when one parent becomes chronically I’ll and can no longer carry as much as they once could?

That is the situation that I have ever found myself in.  I have three amazing and challenging boys,  all on the Autism Spectrum.

I also am married to the most amazing woman I have ever met.  However,  over the past few years,  her health has dramatically suffered to the point of becoming disabled. 

She does everything she can to help but pays a very heavy and painful price for anything she does. My wife has fibromyalgia and for those who aren’t fimilar,basically,  her body interprets everything as pain.  She suffers from chronic daily migraines and acid reflux,  as well as osteoarthritis and a chronic sleep disorder.  All of this and she is barely into her 30’s.

For my family,  the traditional dynamics went out the window long ago. The line between the traditional gender roles we play as parents has become blurred if it even still exists.

What I mean by this is,  the typical Dad goes to work while Mom stays at home and cares for the kids and house,  no longer applies in the Lost and Tired household. At times this can make things tense and complicated.

I grew up in the traditional setting and so deviating from that was stepping out of everything I knew and smack dab into the middle of the unknown. It took me a good deal of time to adjust to this more dynamic-less family setting.

This was quite challenging for me but was born out of necessity. 

As my wife gets worse,  in a way I become more of a single parent.  Not in the sense that she is disconnected or unwilling to help but rather her health simply prevents it.  The truly ironic part is that much of what Lizze suffers from was brought on because she was so dedicated to caring for her family,  that she pushed herself so far beyond what her body could handle. 

Her body has basically turned on her.  The stress of everything over the last 10 has literally destroyed her health.

If she’s guilty of anything,  it’s caring to much and being to devoted to myself and the boys and not taking care of herself.

While this isn’t her fault,  it does present me with unique challenges. For example,  she requires a great deal more sleep than most.  She gets about 11 hours of sleep a night and then a 2-5 hour nap during the day.  If she doesn’t get this,  her body simply doesn’t function. 

This makes things a bit more complicated because she is often to tired or in to much pain to really help shoulder some of the ever increasing load.  In other words,  there is no longer an equal distribution of responsibility. 

If I’m being honest,  this is sometimes very difficult for me. 

The problem is that I have to be responsible for much more than I effectively can on my own.  I have to maintain the house (which I fail at,  miserably),  manage the business,  figure out the bills,  grocery shopping,  repairs on the house,  all the yard work and alot of driving, just as a few examples.

I’m both frustrated and overwhelmed because I can’t help my wife to find relief or successfully maintain everything that I have to.

One thing that my situation has taught me is that I have huge amount of respect for all the single parents out there doing this on their own.  I’m lucky enough to have my wife helping as much as she possibly can. 

I don’t know how to people can do this on there own,  and I’m honestly quite grateful I don’t have to worry about that.

Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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Empty nest syndrome

I too have great respect for the single parent, as i am daughter of a single parent  and i totally understands the work load of my mom in raising us. Hope your wife get well soon.

Kelly

Hats off to both of you. At our house we totally umderstand! We too have three kids. Our youngest is an Aspie. I am paralyzed fr the neck down and my husband has fibromyalgia. It is insanely difficult at times but most people have no concept of what that means. I wish I could hug your whole family!

Blessings and take care!

Lost_and_Tired

Wow. I have nothing but respect and admiration for you and your husband. Thank you so much for sharing that with me. You will be in my thoughts. 🙂