Revelations

We are trying to find our rhythm here. After the illness and passing of Steve's mom and the unbelievable whirlwind of activity preparing for and attending her funeral services, everyone is knocked off their game a bit. It was exhausting physically and emotionally, but it was lovely.

All the activity revealed yet another flaw in our system. It was frustrating that I couldn't be fully present for Steve and the rest of the family. I kept leaving things before everyone else because I had to get home to Maggie or take Maggie home. The nursing situation works fine as long as I stay home to assist and/or fill in, but it does not work for any change in the (very dull) routine.

  I need to find someone who can occasionally drive Maggie and her nurse to things so that I can fully take part in other activities. The problems are not only the additional expense, but the logistics. It is so difficult to coordinate and orchestrate all the things Maggie needs that the thought of adding another layer is too much to consider.

We need to figure out a way to get more breaks. In Maggie's 16 years and one month on earth, Steve and I have been away alone together a total of 4 nights. When I get the energy we will have to do another night, but it's 18 hours of work for 24 hours away and the hassle factor is daunting.  Taking Maggie away with us is not a realistic option at all. She cannot fly anywhere because of the amount of equipment we would need to take. Even if we take a road trip we would either have to pay for a nurse to accompany us or I would have to be "on" round the clock. Neither option is doable and frankly, I'd rather stay home.

Caring for Maggie is becoming increasingly difficult and getting any breaks from the routine or time away for ourselves is nearly impossible. When I cannot orchestrate being fully present for my mother in law's funeral, you can only imagine how difficult it is to steal any time away for fun or recreation. This realizatiion may have been a gift from my mother in law to show us that we need to make changes so that we can live our life and tend to other facts of our existence as well.

Now if I could only figure out how to do that, or find a pot of gold, we would be sitting in tall cotton.