The past six weeks have been long. We have faced added stressors from a thunderstorm that took out one of our trees, electricity, and fried our hot water heater. First world problems, I know… We went eight days without hot water, and our electricity is still messed up. The lights fade in and out when we use a couple of appliances at once and getting the electrician back to our house has proved difficult.
We have had insurance issues; Beckham hasn’t had his prescribed formula for two weeks. Our primary insurance’s billing company refuses to bill our secondary insurance for items they don’t cover. The formula provider has officially dropped us. Beckham suffered a reaction to a homeopathic cream for a back spasm which resulted in a nasty, blistered rash all over his back (thank goodness for essential oils that saved the day!).
My body has been struggling under the weight of this long term stress. Don’t be fooled, though we have chosen to make the best of a horrific situation, the stress never leaves our home. Self care is about last on my priority list, but my body is crying out for help. So, we are in the process of finding a new nurse to help with a few daytime hours which will hopefully lighten my load by helping me find time to do laundry, cook a meal, or run an errand. Finding decent nurses in home healthcare has been a struggle for us all along. We have had very bad experiences in the past. We do have two night nurses, now, that we trust. It took us a full year to get a committed nurse for the weekends. Starting the process over for a day nurse is hard.
October 5th marked two years since we first heard of Hypoplastic Left Heart Syndrome (HLHS). It also marked two years of living in a state of constant stress and anxiety. This summer we ate a meal with family at a busy BBQ joint in Deep Ellum. There was loud, live music outside, people everywhere, and busy streets. On our walk back to the car my four year old niece ran out into the street. Her mom yelled to her, but it was too loud to hear. My sister-in-law ran after her, panicked, and grabbed her. Tears ran down both of their faces. The panic my sister-in-law felt in that moment… the stress, the fear, the adrenaline rush… is something I completely relate to. These are feelings that Beto and I have been experiencing for two years. Beckham has been in the middle of a busy street called heart disease and brain damage, and we can’t save him.
Sometimes I mention that I wish my friends would understand some of the things I feel or experience. I don’t want them to actually experience this kind of pain, but I wish they could understand. I wish conversations wouldn’t meet an awkward silence or un-empathetic questions. I wish our hearts would connect as they imagine walking in my shoes. To me, empathy looks like closing your eyes and imagining your baby, your best friend, your partner, your parent… the one you love most… out in that street. Feeling your heart race. Feeling warm, salty tears fall down your face. Feeling it with me. That my dear friend is empathy. Just feeling it with me.
Here are some of the thoughts and emotions I have been feeling on this roller coaster ride… this journey we are on. Sometimes I feel the full gamut of emotions in a single day. Other times I feel good for a while.
I feel lost in all of this. I don’t know how faith fits.
Navigating the unthinkable. Embracing every moment. Holding on with all my might… he’s slipping through my fingers.
What do you pray? I don’t.
What do you hope for? A good meal and good night’s rest.
I am surviving. I am suffering long. I am determined. I am strong.
My mind and emotions are stable. Smiles are frequent.
Some days this weight is too much to bare. I need to feel it. I need to face it.
In trusted places I weep.
I am so very weak. I cannot handle this. I cannot keep going… but I must.
My body is broken. Sleep is restless. Hair falling out. Irregular cycle that comes and goes.
Chronic yeast infection. Bacterial infection. Tense shoulders. Hips out of alignment most days. Aching.
Pain, frustration, and overwhelming stress get the best of me. Tears fall into my dinner.
Tears release the burden and cleanse my heart.
Processing. Grieving. Hoping.
Sorrow will not define me.
Holding it together and falling apart.