Musings Brought to You by Lobbies and Offices

 

We spend a lot of time in the lobbies and offices of doctors.

 

We see specialist who check joints. Specialist who use activity to help with muscle, social, speech and skeletal development.

There is lab work.

Questionnaires.

Constant insight.

Lots of hurrying up to wait, so we can wait some more.

These doctor appointments are not for your usual vaccinations and check ups. Not even for the cosmetic stuff like braces.

Though we do all of that too.

 

Of my four children, two are diagnosed with life long "afflictions" that require special care. 

My oldest was diagnosed with Lupus at age 12. She's now 17 and this cycle of waiting and testing and talking and poking and prodding has been a part of her narrative for some time now. I don't know if that necessarily makes things easier so much as more predictable. These appointments have a certain ritualistic quality to them. We load up the car to make the drive to Seattle Children's every 6 weeks or so. We know the drill and we go through the motions, the required steps, to maintain a sense of good (sometimes not so good) health for Moira.

 

In the early days, these visits were life altering each time. They were mentally, emotionally and physically exhausting. There were more tests to be done. More discoveries to be made and more information for all of us to digest. With time now these days still feel long and tiresome but I see them waning, knowing fully that soon she will be an adult and embarking on a second leg of her diagnosis. The leg that includes her not being a child with Lupus but one being an adult with Lupus.

 

Being the mother to ready her child for such a journey is not something you can prepare for. I attend each and every visit. She checks herself in. She answers all of the doctor's inquiries. She can now reschedule appointments. As far as going through the motions she is ready but what about everything else? Is she ready to battle her hazy days, the achy days, the dark days that come with her diagnosis? Is there a way a mother can take a step back to be a silent and supportive witness? It's hard to know and I am feeling ill-prepared.  

 

 

 

Connor, now 5, has been officially diagnosed with Autism Spectrum Disorder. This is a vague term that can be translated in so many ways that we are still in the process of taking the steps necessary to help him in his journey.

 

ASD is something we suspected from the time he was very little, or something similar to it. He was always just a little distant, a lack of eye contact prevalent. And while distant, he lacked the idea of boundaries and will not, nor has ever, to hesitate before going sit on a strangers lap to talk or reach into an acquaintances pocket in search of Angry Birds.

 

 We considered personality quirks, personal preference and learning disabilities. My husband, a man known to worry would sit there and brew on it. I could look over across the room and literally see the wheels turning, him wondering and worrying about all the ways we may have failed our son. All the ways he could struggle in his life, all the times he will experience heartache and frustration. These worries are not unique to parents of those with health issues, they are common throughout the journey, a test of endurance and stamina of the spirit.

 

It's terrifying to have a child experiencing an unknown, invisible terrorist to their well being, especially those we haven't experienced during our own life journeys.

 

There's no kernel of insight to be found among these pages. No great "AHA" revelation in terms to the human condition. Just me sharing my thoughts. Allowing myself to be vulnerable here. Shedding the game face and the sometimes tough exterior to just be.

 

My children teach my lessons each day. They test my temper. My will. My foundation. Raising children remains to be both my greatest accomplishment and struggle at once. Experiencing the journey of a parent with many hours logged on in lobbies and hospital rooms leaves me tired to the bones, raw, worried. I see it on the faces of other parents in these lobbies.

We are a tribe. Connected in spirit even if we never know each other's names.

 

April 27th, 2014: She will be so mad when she sees this but here's my I'm posting this....I want to remember this forever. Waking up and looking over to see her face perfectly thru the handle. Seeing her sleep on her side because the IV isn't connected today. Knowing this is our last day. This week was a scary reminder of how serious her illness can be . She plans on keeping a journal to keep track of her diet, exercise, meds and how she's feeling. My heart aches that she had to experience this but swells with gratitude that she is well and one of the most amazing people I know