Coping as a Rare Disease Mom


Once a parent from our support group posted about her day.  It was full of battling with her insurance company, driving to therapies, and a daughter who wasn’t feeling well.  “Does this get any better?”  She asked in frustration.  Her question stayed with me for days afterward because I could picture exactly how her day was going.  I am very familiar with days like that.  I wanted to reassure her but when I tried to envision a time when life would be easier, my experience with life so far told a different story.  Sometimes my life gets easier and sometimes it gets harder, a lot harder.  There was a time when I thought college was hard, and now I look back at those carefree college years with envy...  I don’t think there is ever a life free of difficulty, but I also don’t think the bad days last forever.  Some days gratitude and joy come easy and some days they just don’t. 
I was talking to another mom at Thea’s school.  She told me about her daughter’s battle with a rare heart condition.  We talked about staying positive and hopeful, and then we talked about breaking down.  “Please tell me I’m not the only one who falls apart,” she said.  “You should have seen me last night after I put Thea to bed,” I responded.  “None of the calm, reasonable behavior I’ve got going on now was anywhere to be found.”  We both laughed, contemplating the ups and downs of being parents, especially when your child’s health is compromised.   
On the bad days, the stress of it all can be so overwhelming.  The discomfort, the fear, the to do list, the people who need you can all be a little bit much.  When I do get overwhelmed, I’m learning to ride with the emotions.  I am learning to sit with them and have a little compassion for myself.  This means less eating chocolate and less binge watching tv and more sitting quietly taking it all in as gently as I can or maybe picking up the phone to call a friend who can handle my pain and fear and sit with me for a while. 
I am also learning to feel the difference between the me with a full plate that is exercising and eating right and the me that hasn’t been to yoga class and is surviving on French fries.  They are two different ladies and one of them holds it together a lot better than the other. 
I am also learning to stop believing the lie that the bad times will last forever and learning to trust that it’s a bad moment not a bad forever.  I can make choices about picking myself back up again or I can stay bewildered.  I’m getting pretty good about bouncing back and being okay with starting over. Dragging myself back to yoga class knowing that I will be stiff and sore because I stayed home for a week while Thea recovered from a cold, is humbling and not easy but I am learning to see myself as brave for getting up again instead of beating myself up for not being as consistent as I would like to be. 
I am also adjusting to a simpler life style more and more as the years go on.  I don’t need anything in my life to be more complicated that it has to be.  I started buying a lot less things.  I noticed that less things around the house mean less things to clean up.  The more I buy, the more I feel drowned in belongings that require my time to clean, organize, and keep.  The less I buy, and the more I pair down on our belongings, the more I appreciate and value the things I have, and the more money we have for life experiences and other things that matter to us.  I’m getting more and more attuned to what we really need and enjoy and what doesn’t add to our life.  I’ve noticed that Thea has a few favorite toys and that’s all she needs to enjoy her time at home and it’s a lot less clean up when we stick to a few toys that can be used a lot of different ways. 
I cook the same simple, quick healthy meals which makes grocery shopping and cooking a lot easier.  I cook a few things on the weekend so I can throw meals together during the week when things are busier.  If I know that dinner has already been started, I’m less likely to stop for fast food on the way home. 

Lunch for the week!

I stopped shopping for clothes and shoes for a while and organized my closet, make up and accessories, paring down to a few of my favorite things so getting dressed is a simple, easy process.  I noticed that there were many things in my closet that I hardly used and when I removed them I felt so much lighter and I couldn’t actually see and enjoy what I wore often.  Now, I’m a lot more efficient in the morning. 



My closet after pairing down


I got into the habit of cleaning up after myself right away as much as possible, so I don’t have to spend hours of my weekend cleaning and organizing instead of rejuvenating.  All of the things that go in the car that morning, come out that evening.  If I empty the dishwasher in the morning, the dishes from the day can go straight into the dishwasher so that we aren’t left with an enormous mess to clean up at the end of the day when energy is low. 

When we do have an huge dish disaster at least we have an assistant!
I’ve also stopped pushing myself so much when I’m tired.  I started pausing for a few moments when I wake up in the morning, when I get home from work, and before I go to bed just to take it in and become aware of all that I am feeling.  I’ve noticed that it’s easy to keep myself busy and not notice how overwhelmed I am until I’m drowning unless I stop, check in, and take a moment just for me. 
All of these habits, which did not come overnight and are never done perfectly, help me on those days when things are not getting any easier.  Even though life can toss me around with its ups and downs, most of the time, I can still enjoy the ride, especially if I take it slow. 


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