During these last 4 months, the amount of hours I have spent hanging around waiting rooms in hospitals and doctor’s offices is staggering.
Since November 2015, I have taken my children to over 31 doctors appointments. Thirty One. 31. So far…I can think of at least 5 more upcoming appointments in the next few weeks.
- My daughter has endured lying in a MRI machine for 2-3 hours at a stretch on 3 separate occasions so that 6 parts of her body could be imaged.
- She has undergone 2 surgical procedures since November, and I just scheduled her next surgery for next month.
- My son has acquired 6 new diagnosis’s since last June. SIX.
- Sensorineural Hearing Loss
- Osteochondritis Dissecans of the Knee
- Fractured Wrist
- Abnormality of the Retina (still investigating)
- We have acquired more medical equipment as well.
I have spent countless hours traveling to and from these appointments, anxiously waiting for results and outcomes. I have met new people in our journey and have revisited old doctors and friends.
As I was running to yet another appointment I bumped into someone I hadn’t seen in a really long time. She is someone whom I would rather have not run into. I would be happy if I never saw her ever again. In this lifetime, or the next.
She is a very sad woman. She is a woman who is easily overwhelmed; she overthinks and over analyzes everything; she doesn’t laugh very often. She looks like she doesn’t get enough sleep and doesn’t take time to care about her appearance.
I saw her and tried to avoid her gaze, but it was too late. I was marveling at how much older she looked. She now had gray hair sprouting at her temples. She had more lines on her forehead, I am guessing from furrowing her eyebrows. She had bags under her eyes, you can tell that she has been crying a lot.
We stared at each other for a long moment and I said “I remember you. And I remember how much I don’t like you.”
In the dark corner of my mind I heard her reply, “It’s not me that you don’t like. You are back where you started and it’s turning you back into me.”
And then I washed my hands and exited the bathroom.
As I sat in the waiting room waiting for my son’s name to be called, I couldn’t stop thinking about her. About me. How can this happen to me again? I thought they outgrew all this prematurity stuff.
Thirteen years ago, I gave birth to premature twins. 31 week survivors. And while we have our share of medical setbacks, I knew that we got off relatively easy. We were ‘lucky’.
We were spared any serious neurological damage or delays. Milestones were met, maybe a month or two behind at times, but nothing substantial. Here they are today, standing beautiful and handsome at 13 years old. Teenagers in 7th grade. One child is on high honor roll, the other on honor roll. We are so lucky.
But looking back, the first 2.5 years of their lives, we lived a nightmare. Our days and nights were filled with doctor’s appointments, needles, crying children, a hysterical new mom and with an ever growing list of diagnoses, some of which we had never heard of: Respiratory Syncytial Virus, Kawasaki Disease, venous malformation, lymphatic malformation.
While trying desperately to keep my children healthy and trying to learn about these rare syndromes and diseases, I became that woman whom I detest. That woman who got lost in trying to keep up with all the medical jargon that the specialists were throwing around, while trying to keep sane, manage working a full-time job while dealing with 2 small babies who were quickly becoming medically complex. I lost myself in all that. I became ‘that’ woman.
But over time things began to settle. It wasn’t perfect, but it became our ‘normal’. The best way I can describe it is to picture me in a busy diner trying to carefully balance a tray of dishes that are deliberately stacked in tidy little piles. Everything on that tray is positioned in a very deliberate order so that things make sense and that the tray is not overburden or confusing.
After what seemed like a great stretch of time, it looked like they left all their preemie-ness behind them. I was able to say goodbye to ‘that’ woman.
We got all our crazy diagnoses in order, along with their treatments neatly packed into our lives so that we could live, laugh, have fun and still be able to deal with the medical issues without throwing our family and schedules into utter chaos.
So now. Imagine navigating that busy diner, tray balanced on one hand, making our way, and then BOOM! Here comes a crazed toddler, being chased by a dog who got away from its owner and both the toddler and dog go crashing right into you.
That is what happen to us last June. We were back at different doctor’s offices looking for answers. We now have an even better understanding of the human body. It has been one-on-one training from skilled professionals. My children are beginning to think that they will eventually become healthcare professionals when they grow up. At this point, they would probably be able to teach a class or two.
I am trying to remind myself that as uncertain as everything is, I will learn from this the way I did last time. I will be a stronger and better advocate for my children. Now they are old enough to understand and help us make decisions about their ailments and treatment together. But at the same time, I am back to feeling overwhelmed and exhausted because my children started becoming medically complex again. I am back to being anxious as I dread taking time off of work, pulling the kids out of school for more appointments and hanging on every word out of each medical professionals mouths.
I know this road I am traveling. I know this woman. I needed to avoid turning into ‘her’ again. But here we go again.