Rare disease an adventure

I was more adventurous in my younger years. I did journey 8hrs and 500 miles away from Pennsylvania to a sweet little town called Lost Creek, Kentucky for my first teaching job after college. It was there I met and married this sweet guy and started an adventure of a lifetime. Twenty-six years and four children later life the adventure continues daily.

This disease has been and continues to be an adventure. The dictionary
defines adventure as 1. an exciting or very unusual experience. and 2. a 
bold usually risky undertaking: a hazardous action of uncertain outcome. 
Check and check.

People often ask what exactly is it? I have to say well our "working 
diagnosis" is Systemic Onset Juvenile Idiopathic Arthritis because we 
think it could be that but even the experts are not sure. So... the search
for a diagnosis... is an ongoing you guessed it adventure.

The downside to this adventure is fever, rash, swollen lymph nodes,
enlarged liver and spleen, inflammation of the lining of the lungs and 
or heart and the list goes on and on. The newest plot twist
sensorineural hearing loss. So the quest for a diagnosis continues.

Yet there is another adventure playing out simultaneously in my life.
My walk with God is the most wonderful part of this journey. The stakes and rewards are great and enduring. He is my strength when I can't go on.

Quite frankly I don't know how I would get through some of the difficult days without Him by my side.

Seeing with eyes of gratitude

This past week many people celebrated their love for one another. Some

more lavishly than others ~ some struggling since the person of their dreams seems nowhere to be found. We celebrated quietly. 

I came home to a quiet house that I share with this guy that captured 

my heart 27 years ago. He had left a sweet note on the whiteboard in the kitchen before leaving for work, the kids were all at engaged in various

activities, and I could enjoy the peace and tranquility.

I am learning to see my life with eyes of gratitude. I believe our desires will not ever really be satisfied by well carried out date nights or grandiose expressions of love, or even happening upon the love of our lives... until we 

learn to see gratefulness in our ordinary everyday lives. We need to learn to be people who love and embrace what we already have. I am learning to 
embrace the provision of the Lord in the circumstances I have not asked for 
and in that same vein, I am learning in marriage to be the love I want to receive.

“Be completely humble and gentle; be patient, bearing with one another in love." Ephesians 4:2

"Above all, love each other deeply, because love covers over a multitude of sins." 1 Peter 4:8

We finished Lucas's first two infusions at Hershey and next month can

have them done at our local hospital. So baring any complications all infusions for both Hannah and Lucas can be done on the weekends near 
home. Tomorrow is one such day. I am grateful to be closer to home and not have worry about missing days at work. 

Both Hannah and Lucas failed their hearing screenings so... with Cody's history of the sensorineural hearing loss it's more than a bit concerning. So 
our next big adventure/appointment will be audiograms in March.