Recently, I had the rare moment to meet a friend and go out to lunch. Her daughter was in the hospital, and I took her out to get her mind off the stress.
We were giddy sitting in a trendy restaurant that served Nitro Coffee, homemade donuts, and truffle french fries.
For a moment, I thought to myself how meeting a friend out had become such a strange part of my life.
I also considered how meeting her out when she was in the middle of another stay at the hospital, had become a normal aspect of my life.
Most of my life, for the past year, has been spent shuffling my son from one appointment to the next. The only vacations we had taken were extended stays at the hospital.
While it’s nice to get away from the house, a pullout couch at a hospital is not my idea of luxury.
I looked at my friend with her messy bun, dark circles under her eyes, and hospital attire, and I wondered how our lives had gotten so far off track.
She looked exhausted both physically and mentally, and I was reminded that only a few months ago I felt the same way.
For the past year the two of us, have been walking side by side on this journey of raising kids that are medically complex. Both of our children decided this year was going to be the year they needed significant surgeries.
We both were forced to make important decisions to improve our children’s quality of life. Each choice felt agonizing for the both of us.
Are we doing the right thing?
Do our kids need this surgery?
Will the risk of the surgery be worth it?
What if we make a choice and something terrible goes wrong?
For months, I was a mess trying to decide what to do to help my son. There were too many choices that had to be made.
We had doctors across numerous specialties giving their recommendations, and I felt suffocated with anxiety about making the wrong choice.
Medical intervention and major surgery is a choice that weighs heavy on the heart of any parent.
All of the risks go through your brain:
Complications from surgery
Bleeds and loss of blood
Infections from incisions and within the tissue
Whether they will wake up from anesthesia
Pain control and management of recovery
Before I had a child, I thought my toughest decisions would be deciding what school he would attend. I had never once considered how I would be forced to make choices that no parent should ever have to make:
Permitting blood transfusions due to life-threatening illness
Signing waivers for surgeries to repair parts of his brain
Going over side effects of medications that he needs to live – knowing if he doesn’t take them he will die – but also knowing that taking these medications them could destroy his bones
Weighing the benefits and risks of complex surgeries that could improve his quality of life – but could also cause more issuesChoosing to have a permanent feeding tube placed
Deciding whether or not it was time to add palliative care
Some of the options were life or death or my son. Those didn’t require much thought or consideration.
The hardest ones were making choices for him that wouldn’t cure his diseases, but might improve his quality of life.
Throughout all of these decisions, I have often felt like everything was going on around us, but I wasn’t present. I remember sitting in the waiting room of his most recent brain surgery, and I felt absolutely nothing.
I had no fear or panic that day. One of my best friends commented that I was way too calm considering the circumstances.
After over five years of making impossible decisions, I have realized that I have become numb.
In the beginning, anytime my son received a diagnosis it was like a massive punch to the gut. I would feel all the wind whoosh out of me, and I more often than not end up sobbing.
Today when we walk into appointments, I find myself calm and quiet in my mind when bad news is delivered. As sad as this may sound, I have become used to my son’s declining health.
All of these choices have weighed on my heart and my mind, and I have now watched another person go through the same process. She had to wrestle with these same tough choices.
At that lunch, on the beautiful Saturday afternoon, I realized there are thousands of other moms like us put into impossible positions.
These mothers are beaten down from the stress and exhausted from the merry-go-round of medical interventions. They are barely catching our breath from one crisis before they are forced to make another decision.
They would much rather be dealing with regular childhood issues like fighting with their kids about what clothes they will wear or arguing over dinner about eating something besides cake or cookies.
Instead, the decisions they are making are about their quality of life and at times about saving their child’s life.
The way all of us are doing motherhood is not at all like what we expected.
Most of us had no idea about durable medical equipment, home care nursing, Medicaid, or special education before we had children.
We never considered that our dream homes would turn into small hospitals filled with supplies, medications, nurses, and machines
With all the choices we are forced to make, all we want is to be able to make easy decisions.
We want to worry about what sports they will play.
We want to decide where they will attend school.
We want to decide where to throw their birthday parties.
We want to think about their futures without living in fear.
The only thing that keeps me going on these hard days is thinking about other moms in the same position I am in.
While I would never want anyone to be forced into this world, it’s comforting to know that someplace out there another mom is feeling what I am feeling.
In the midst of this chaos, knowing others are navigating the care of a complex child calms my heart. Thinking about how strong they are to deal with the situation with such grace gives me the strength to keep fighting for my son.
I don’t want to be here making these choices, but the silver lining I learned on Saturday is that I’m not alone.