Make every moment count

Mother’s Day was amazing! I enjoyed mimosas and shenanigans at Mellow Mushroom with Jon, Jameson, & Blakely. With that being said, I would love nothing more than to begin with a funny or articulately written Mother’s Day story with a catchy title choice. Let me be honest, this will not be the case. I am looking into a serious part of my world. A part of my world that involves mixed feelings and concrete words like PSC, liver disease, hospital, medication, pic lines, transplant…. For me, as a mother and wife, overload. With this being said, these words are my path on a journey that began long before I met the love of my life.

Jon was diagnosed with the autoimmune liver disease, Primary Sclerosing Cholangitis in his early 20’s. In case you do not know about PSC, it causes inflammation, constriction, and narrowing of the bile ducts in the liver. With that being said, Jon has severe bouts of itching from elevated liver enzymes. He literally scratches his skin off because the itching is uncontrollable. Imagine sleeping with a 170-pound flea infested German Shepherd.

When the bile ducts begin to narrow, severe bacterial infections occur and sepsis rears its ugly head. If this does not already sound a bit extreme, blood ammonia levels rise and severe confusion come next. I find these descriptions brief without scratching the surface of the havoc that PSC wreaks on Jon and our family. We know the need for a transplant is steadily approaching. The stages of fear, grief, depression are overwhelming. Watching someone that you love cycle through these emotions is surreal.

Now, how do I feel? Having a husband with a chronic illness for lack of better words is, well painful. It interferes with every aspect of the perfect life that you plan. It stings as a mother to watch my babies cry for their Daddy. Face time makes me appreciate Apple products, but it gets lonely. It hurts to see the love of my life suffer. It is the bane of my existence to see a good hearted man so sick that he can not eat or physically find the strength to get out of bed. Whether it be those things weighing on me or that little thing dubbed the “unknown”, Jon’s damn liver has literally become a thorn in his/our side.

People tell me that I am strong. Hah, if they only knew. Sometimes I feel like the weight of my own breath might crush me in the blink of an eye. It is safe to say most days when Jon is in the hospital, I am numb. I just want to stay in bed and hibernate. I am not sure how strong that sounds, but to me, it sounds pretty weak and gutless.

The truth is I find strength in those who have lived this life. The ones who offer encouragement, comfort, and solace. Those who have lived this life of controlled chaos, one of fake smiles, one of getting up every day and pressing forward for your family because you are a mother. Pressing on because that is what strong people do. Pressing on in this life that defies the fairytale of what should have been.

You strong people know who you are. We have crossed paths at some point in this life for a reason. You are the ones who cry silent tears of understanding and smile. You help me press on and acknowledge the sunshine one day at a time. This is real. This is a life where reality tv would not stand a chance. This is my life alongside the rockstar, the aspiring paleontologist, the golden girl, and my indisputable southern dialect. With this being said, I want to thank you. I am letting you in on our journey and I hope you enjoy the ride.

With love, Ash

Jon Terauchi, in my life, I love you more.

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