So the wind won’t blow it all away . . .

My last post was about my immature moments.

But I can also be pretty grown up. Seven years and 10 months ago, I promised to be by Elton’s side through all sorts of good case/worst case scenarios. And as human beings we tend to gloss over the worst case bits (sickness, poorer, worse) and just imagine a life of sunshine and butterflies.

Enter Cardiomyopathy and Pulmonary Hypertension into our lives in 2010 and 2012 respectively. We have both lived and died a few times in our marriage. We’ve both had our hearts ripped out, but had to survive for the sake of us and Big Tom of course.

When I was at my weakest in 2010, Elton was my caregiver and just as my health was stabilizing and we thought we were over the worst, bam! In came PH. And I had to go from being taken care of to being a caregiver.

Just this week I found myself phoning around for mobility scooters for my young husband as we’ve now reached the point where we no longer want to not do things because he can’t physically keep up with us and we definitely don’t want to leave him at home or in the car like an invalid. So a mobility scooter will mean he gets to “walk” with us and be out and about without the strain on his lungs.

Getting used to our new normal is not as weird as I thought it would be and I am amazed at how easily I made the shift in my head. Yes there was resentment and questions. Why my husband and not one of the many other oxygen thieves out there?
People are pretty clueless about PH as it is such a rare disease and because sufferers mostly ‘look healthy’ so we get the ocassional side eye with people (and family) wondering if we’re not just exaggerating.

And then there was the grief at Thomas and I losing the active, crazy monkey dad we got used to and loved. But hey, he’s still with us and that is ALL that matters. Being in his mobility scooter will mean that when we get to our destination, he will have a bit of energy to play in the stream in the forest, or kick a ball on the beach or do a crazy monkey move because he would not have spent all his energy on walking there.

It’s a crazy new normal that threw some hectic curveballs at our young family but thanks to all our previous experiences, we’ve got this.

So the wind won’t blow it all away. . .

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