If you had given us several scenarios of where we would be at in the next five years at the beginning of our relationship when we  were freshly dreaming of married life, this circumstance we now are in would be immediately dismissed. This is not the story we would have ever chosen for ourselves. 

We had dreams, yet sometimes dreams are sometimes halted to a deafening pause with life’s circumstances. We’ve had a number of people asking lately how we’ve been doing so we decided to share a quick update, speaking from both of our sides. To you who are reading, thank you for your support towards both of us. Your prayers and encouraging words mean more to us than you will ever know.

Sarah:

I‘ve had a difficult time sharing what’s been going on behind closed doors in our household…or even out in the public when we occasionally venture to the park. It’s difficult to be vulnerable and to know the most painful moments of life are circulated throughout the web in the form of videos and pictures.

It’s much easier to try to hide beneath the covers and pretend like life is okay…except that’s a little difficult to say when you’re out in public with very visible issues. Since I have been maligned, speaking about myself begins to look all the more uncomfortable. Even though I didn’t deserve hurtful words (as no one does) I also do not deserve the wonderful encouragements from so many, the prayers of support, and the overall care. Just know, anyone who has helped me has served as an inspiration to help others in mighty ways when I am able. 

One or two months ago I told Michael through tears and words heavy with exasperation how painful it is to be around people who try to avert their gaze or purposefully gawk. I hope to say (I’m figuratively holding my breath right now) that I will be done with this area. I have had fewer ataxia issues (tic-ing) and I have had improvements in my mobility– yay! The issues are certainly still there, my eyes still roll back in my head daily, the tic-ing and mobility issues are still present, but I am thoroughly blessed by the improvements. The health program I did over the summer that I was sure wouldn’t work, helped significantly. Even though this is an awesome, very much prayed for improvement, I have now been experiencing sleepless nights. Seven AM has become my new sleep time, and even then, it will only occur for several hours due to intense pain

Which means Michael doesn’t get sleep…

Which means we’re both cranky…

Which means we have misunderstandings over very unimportant issues only to realize moments into a disagreement that we don’t even know what we’re saying.

Looking Back:

It’s incredible to take a look back in time. Last fall around this time, my health went on the decline to where many times, I could not eat on my own. Falls were prevalent which only caused my neuro manifestations to amplify. Physical Therapy and Occupational Therapy denied me as a patient because they felt their treatment would only worsen my condition. My doctor was concerned at the time that I could still potentially stop breathing since my lungs were in a vulnerable state.

Rewinding to a year before that at around this time: I began my down spiral in health which was accompanied by ataxia, convulsions, and severe mobility limitations, speech and cognition impairment, and extreme sensitivity to stimuli…just to name a few on the list. This journey to wellness has taken longer than any of us have thought, but I’m encouraged by the improvements. Thank you to anyone who has ever supported us; it truly has made a difference in every step along the journey. I would not be writing if it were not for you! 

Broken Promises…to Myself:

I’m being told by docs that I will not improve further without moving from our house that has black mold. When I initially found that out months ago- I’ll be honest- I felt totally angry at myself. Why? Becuase I had already been extremely ill in the past from a mold exposure that kicked me to the ground for approximately a year and a half from only being exposed for several months.

I vowed to myself at the time that I would never allow that circumstance to happen again with a choice that could easily be preventable. At the time when we moved in here two years ago, desperation overrode my normally cautious nature. There was no place else to go. Nevertheless, we always seem to self-punish for unfulfilled promises we make- even to ourselves.