This post is actually about worry and happiness, not my own- but my daughter’s.
By the time my daughter’s emotional disability developed, we had already dealt with significant medical issues.
The kind of medical issues that distract, disable, and leave you broken hearted. Emotional illness is worse. Worse than seeing your toddler poked every hour for blood draws. Worse than another long night holding a sobbing, feverish , and miserable almost 4 year old that can’t tell you where it hurts. Worse than watching your daughters eyes grow huge with fear, as the oxygen mask her closes over her face as she goes under anesthesia again. Worse than that difficult diagnosis discussion with your neurologist, the kind where he clears the room first for extra privacy. Seeing your child unable to control their emotions to dramatic degrees- is harder. The experience, the tears, the trigger, the scenes just cling to you -long after the episodes pass.
The other day I connected with another parent of a child with an emotional illness. He easily understood when I painted the picture about acceptance being the hardest part. Accepting first that your child needs medicine to reengineer her body chemistry. Accepting that even with affection, love, and logic you can’t make your child better.
Finally , accepting that your child may forever need medicine, or fight this illness.
When searching for answers to my daughter’s metabolic illness- I did everything I could -and there was so much to try, doctors, therapies, hands on specialized care. But when faced with an over emotional, upset, out of control anxious little girl -the list of treatments to try is short.
I removed her from the environments that were stress inducing, I tried counselors, extra TLC, extra attention, change in diet, behavioral incentives.. and at the end of the day the worry, the fear, her inability to sleep soundly, her daily tears.. were still present.
It was one of our metabolic doctors that made the connection to her metabolic illness and change in chemistry- he had seen this before. It was important to me that the psychiatrist spent hours getting to know my daughter first, to determine exactly where her fear and worry began. Were the medical issues the cause? She skillfully extracted more details from my daughter, and made an exact and accurate diagnosis.
Medication made all the difference for my daughter. I remember meeting with the doctor then, explaining that my daughters toys were going untouched, her drawing pens and paper were being neglected, her imaginary play had ceased- all in a matter of weeks. And with the addition of a new medicine- all of these play patterns returned again- the pictures appearing again on the refrigerator , her dolls fully dressed and her bedroom floor cluttered again with toys.
She does so well on her medicine, I forget sometimes how much she needs it. Maybe I don’t just forget, but choose to deny the truth. We have worked hard over the last year to reduce this medicine, due to some of the physical side effects. We found a good level, that physically leaves her much healthier than the original dose and emotionally leaves her very stable.
Just recently, at the Doc’s suggestion.. we tried another reduction and all of the realities of emotional illness came crashing in again. She was fearful every night at bedtime. Everyday things started making her anxious. She was grumpy ALL the time. But the telltale signs again.. No pretty pictures , the lap desk sat unused, her prized collection of Sharpies ignored. The toys ignored again and in general she was miserable. She cried, became angry, got mad, had trouble falling asleep and suddenly became panic struck at the idea of growing up.
Regretful, I upped the medicine again as all the evidence presented itself. One week later and she is smilling again, happy to hang her new drawings above desk, happy to play with her sister, happy to just hang out.
Still I struggle with some sadness, facing again that this is an illness I can’t control, can’t cure, can’t comfort her into ignoring , can’t hug or kiss away. That I must surrender to the fact that emotional illness is unpredictable, can be uncontrollable , unknown in the way it may appear tomorrow.
For today, I will celebrate the child she is, her beauty and her kindness. I won’t take her smile for granted, nor the beautiful lines and bold colors she puts on the page . I will listen to her laughter as she plays and calls to her sister, I will turn up the volume of her music just so I can hear her sing, – and for all of these moments- I will be grateful.