This is the most personal post that I have written. I have been tossing around whether or not to write about how I am feeling this past week because it leaves me completely open and vulnerable. Open to those that provide confidence and encouragement and vulnerable to those that provide doubt and pick at the thread that is holding me together.
As time passes, through every door that we walk through, the more that we discover, we are left with decisions. The hardest part for us is having to make decisions. Deciding on the pros and cons of tests, deciding on what to do with the results, deciding who to listen to, deciding how and what information to share, deciding how to approach the future and the hardest decision, deciding what is best for Cara. With every decision comes doubt. With every decision comes opinions. With every decision another brick is added to the weight on our shoulders. In the past months I have made decisions with confidence and had a reserve of strength and emotional stability to wake up the next morning and greet my family with a smile. This reserve is running dry. The constant ache in my chest has spread into a lump in my throat. The pain ends and starts my day. Every day. Some days I don’t know if I can handle the entire load.
Isn’t having to face the decisions and future for Cara enough? Isn’t worrying for both my daughters and my husband enough? Isn’t the stress of making the right decisions for my family during this difficult time enough?? Why do I have to deal with other stress? Can I be allowed to focus only on my family and myself? Focus only on how Dan and I feel and how we’ll get through each day? Can I be allowed to only care about how Natalie and Dan feel? Why do I have to deal with the selfishness of others? Why do I have to listen to my faults and how I have been uncaring? I don’t have enough fuel to care. It’s not fair that I have to spend emotional energy on anything besides Dan, Natalie and Cara. It’s not fair that my emotions are wasted on anger. I need to save energy to look into the shinning face of my daughter with an unclear future and smile.
I want my confidence back. I want to block out the doubt. I need the confidence that I can care for my family, make the right decisions and still wake up the next morning and face the day.
I received a call from Cara’s metabolic doctor last week regarding the muscle biopsy results. More bad news. Bad news but not enough for a diagnosis. That is almost worse. It feels like being stuck in a holding pattern in an electrical storm having no clue where you are or when you’ll land. Or if you are going to land. Blind, scared and circling. I can’t see beyond the clouds. I can’t see if the sun is shining or if it’s just dark. I can’t see if I need to prepare to say goodbye to my daughter too soon or if I will see her graduate. I can’t see if this disease will just be a mild irritation or a mountain in the way of her dreams. I don’t know how to feel because I can’t see.
This stupid pain. This pain that has been with me for months has become enemy number one. I hate it. I hate it with everything that I am. I try to ignore it, drown it with happiness, force it away but it just sits with me. Every moment. My family brings me joy and makes me laugh but those joyful beautiful moments pass and the pain grips tighter.
I know this post is a little fragmented and probably doesn’t make a whole lot of sense, but blogs are supposed to be more for the writer than the reader. Right? It’s therapeutic right?
Despite this dark cloud that I can’t seem to shake, most of you have been a warm spot of light. The support and encouragement that so many have given us has been humbling. The selfless rallying of friends and family around us has left us speechless and beyond grateful. I hope that someday I can return even a fraction of what you have provided Dan, Natalie, Cara and myself. Thank you.