Hi Everyone,

One of my close friends sent me one sentence today ~ two steps forward and one back is still one step forward.

I have been repeating this sentence to myself all day as I try to regain perspective on where we are, where we were and where we want to go.

I have been thinking of the “early” days of this new life of ours. Our case manager tried to explain to me that fighting the system is a waste of time. It’s bigger than me, her and the hospital. The only way to make change is to go to Washington. I remember thanking her for pointing me in the right direction. Brian, our primary nurse, warned me about coming out of the gate too quickly. ‘This battle takes stamina’. He has seen many families in his 30 years pick up the baton and fail to carry it due to emotional fatigue.

I have been thinking about the individual battles we’ve already fought. Most were unnecessary but part of the grand plan to set the hurdles high enough hoping most families wouldn’t attempt to jump over them. It seems that every piece of mail and every voice mail presents a new obstacle that sets us back one step.

I talked with a family today that has been fighting for 19 years. The mother told me that she’s finally given up. She doesn’t have any fight left. She just doesn’t care anymore. It occurred to me that this is why the system is “bigger than us”. It is designed to wear us down so we give up. But who does that ultimately hurt?

We are (yet again) engaged in 2 new battles; one with Social Security and one with Medicaid. I reflected on Jan’s sentence and the steps we’ve had to learn how to navigate the system blind folded. Learning to walk through this mine field is extremely difficult but critical that we keep moving forward. It also occurred to me that we have a choice. We can stand still or take a step. If we decide to take a step we have another choice. Do we want to go back or do we want to move forward? I took a long hard look at where we came from…there is NO going back! Look at where we are today. There were some people that thought we could reach the step we’re on today but again…no one thought it would be in the first two years.

Perspective is taking the time to look at each step for direction. Our choice to move forward has no guarantee’s, no promise of respite nor promises of achieving our goals ~ but how will we or the system change for the better if we all decide to step back or stand still? Moving forward is the only direction that will unveil opportunity and growth. Today’s phone calls didn’t resolve our current fight but the realization and reexamination of perspective is a huge step forward. Monday we’ll try again, xoxo