Uncensored Truth

A picture never tells the whole story.

Things have been difficult here at Twingate Central.

Harper started having seizures a few months ago and things have spiraled out of control since then.  Her seizures are more like full body spasms.  They cause her left arm to flail up and her body to lurch forward.  Often she hits her head on whatever she is sitting behind.  It is very hard to watch.  Furthermore, we have been cycling through various medications to try and control her seizures.  They cause side effects which Harper cannot tell me about so she mostly whines and is upset all day.

Eliza is crawling.  I am so proud of her and, yet, it only serves as a reminder of all that Harper could be doing.

Eliza sleeps through the night.  Harper wakes up once or twice most nights, her sleep interrupted by a seizure.  I'm still exhausted.  I drink a lot of caffeine.

Eliza babbles all day and says several words, including "bear" and "daddy".  Harper screams.

Harper now has 5 therapists helping her with various areas of development.  There is a therapist at our house at least once, sometimes twice, a day.  I'm always in my pajamas.  Her seizures have halted her progress and the hours of therapy we endure feel like slogging through mud.  It's a full time job coordinating our therapy appointments and doctor visits.

It's too freaking hot to even think about going outside.  We are going stir crazy in the house.  Many days, I just load the girls in the car and drive up and down Shoal Creek for 45 minutes so I can have a few minutes to myself.  Sometimes I listen to NPR, but most of the time, the news just depresses me  more.

After the girls go to bed, I zonk out on the couch and watch TV for a couple of hours before I pass out.  We eat take-out more than I would like to admit.

I wonder what Harper will be like in 20 years.  I'm afraid I will never experience empty nest syndrome because she will be dependent on us forever.  It is extremely hard for me to admit this.

That, dear readers, is the uncensored truth.  I haven't posted lately because I have been finding it hard to be positive and I'm too frustrated to be hopeful.  I'm embarrassed about this.  I know Harper and Eliza need me to be upbeat and do everything I can to create an environment where they can be successful.  I truly feel like I am doing that.  But only through my actions.  My emotion is elsewhere.  In a dank, dark space, far from the exersaucer and play mat.

Parenting is a marathon, not a sprint.  I'm sure this is just a rocky time and we will pull out of it and move on to happier things.  But, until then, this is a tough place to be.