Ups and Downs

We’ve been through a few ecstatic weeks that I had hoped would not end.   As the parent of a child with special needs, specifically sensory processing disorder that requires us to feed her through a gastrostomy tube, I always hope that any progress we make will be permanent!  Like playing a video game, running, annual salary, I want (expect?) each score to be better than the last.

Real life doesn’t operate that way, at least not that I’ve discovered! That seems to be especially true with my daughter, Little Miss, who has been fed by g-tube for 10 years now and has battled different health issues throughout her life thus far.

Three years ago we had a major health crisis to weather and after 18 months, the cause was finally determined, surgically repaired and cured.  Now that three years have gone by, I try, TRY, to not wait for the other shoe to drop.  Her health has been quite stable and for that I am SO grateful.  I hope it continues this way!  But I know better than to count on it. I try to just live in today and enjoy what today is, rather than hoping or fearing what tomorrow will bring.

In recent weeks Little Miss has been, HAD been, eating more and more by mouth.  I was generally skipping a g-tube feeding each day.  What fun!  I didn’t get so crazy as to think there was an end in sight, but I was hoping the progress would continue.

Alas, perhaps all growth is cyclical. Picture a tire with a bright red mark on one spot.  As the tire moves forward the red mark goes up, over, down, around, over and over.  So while there is always movement, sometimes the red mark is up and sometimes it is down.  Sometimes the mark is DOWN while the tire moves forward and sometimes it is UP while the tire moves forward. Ups and Downs.

Seems like an awkward picture of growth – or change – or time. In my experience it really goes that way.  Sometimes when I think things are at their worst we get over a bump in the road and it is clear we were moving forward all along.

Little Miss used to have seizures. The seizures were horrible to witness, but they came to an end and she slept afterward. A really strange effect of the seizures was that something in her brain would work BETTER after each seizure. Ups and Downs.

This is true with reading as well.  She can startle me at times, picking out words that I would never have guessed she could read.  But. She cannot read an entire sentence and she cannot write legibly. Ups and Downs.

Little Miss still asks for food, still says she is hungry, but she is much less likely, this week, to eat enough to skip a feeding. Sometimes she can only look at the food and not eat a bite. Maybe we’re just at the bottom of the cycle and we’ll be back on the uphill side soon. Or not.  I don’t know.

I do know that the tire hasn’t gone off the road and into the ditch: she is healthy, curious, growing, funny and sweet. I am determined to enjoy this journey with her, for however long it lasts, and not count on the highs staying high or fearing that the lows will stay low.

Easier said than done. I couldn’t do it alone. Fortunately I have my Companion with me every day to help me on this journey.  He has changed me so much through this and surprisingly, I have discovered that this journey is much more of a blessing than a “curse”.  I would never have guessed I could ever say that.  Today I can.  With His help, tomorrow I will be able to as well.


Managing Fear in Medical Emergencies

Emotions in medical crises are predictable and manageable! Expect to feel any/all of the following:

  • Fear
  • Anger
  • Suspicion
  • Helplessness
  • Discouragement

When our body, or the body of a loved one, signals trouble, fear arrives on the scene faster than an ambulance! Fear can be an overwhelming emotion, blocking our ability to make sound decisions and ask good questions.
What do we fear?

  • What might happen
  • A repetition of what has happened in the past
  • The unknown
  • Inability to control the outcome

Fear has a tendency to help us jump to worst-case scenarios. Dread takes over and can move into panic.

Anger is often present. Frustration with a recurring problem, and/or dislike for the feeling of fear can help us to move into anger. Anger is a more comfortable emotion than fear, so we go to anger.  We feel more in control when we are angry.

Suspicion can also arise out of our fear and anger because we wonder whether our situation can actually get better, or will it get worse, how much the hospital or medical staff really knows, cares, pays attention, etc. Helplessness and discouragement arise when we fear we have a limited ability to affect the situation.

All these emotions are very useful! They alert us to the reality of a problem we need to manage. When we switch into management mode, the emotions can recede, allowing us to think clearly.

To switch into management mode, it can be helpful to briefly recall a skill you acquired during your adulthood. For instance, balancing a checkbook, finding a mortgage, painting a room, choosing car insurance , etc. Imagine yourself actually performing that skill. This thought process can help you switch into a more confident, competent frame of mind. Managing a medical crisis, talking to doctors, participating in the decision making process all require a degree of confidence. You do not have to understand everything about a mortgage to choose one. You do not have to understand everything about your body and medicine to make wise decisions.

Here’s an example from my own life. One of my sons at age 6 traveled with us by airplane. On the return trip, his ears hurt to such an extent he could not stop crying. Drinking water, chewing gum, yawning were of no help whatsoever. He was a little better at home, but within two days he had added fever, headache, and stiff neck to his earaches. Of course this all culminated at 7:00 on a Friday night: too late to call the doctor for an appointment! I knew these were the symptoms of meningitis. I was quite scared because meningitis can be fatal within a short time, and/or difficult to cure depending on which type of meningitis is present.

I needed to comfort my son and my husband and make some decisions with the doctors. If my son could sense my fear he would become more afraid, making exams and tests more difficult. I had to calm down. I took deep breaths, focused on being in capable-adult mode and calmed down. The fear was still present of course, but not in control.

At the local emergency room, we began a series of tests. After several tests telling us next-to-nothing, the ER doctor wanted to do a lumbar puncture (also known as a spinal tap). In this procedure, which is rather painful, a needle is inserted between two bones in the spine, directly into the spinal cord to obtain fluid. Examining this fluid determines whether meningitis is the correct diagnosis. It seemed critical to rule out or confirm this disease.

Something inside told me this was not meningitis. I trusted myself. I began to ask questions. I said “No” to the lumbar puncture. It was the right decision. The ER doctor sat down and reviewed the history, reexamined my son and came to an accurate diagnosis. It was not meningitis. Treatment resolved the symptoms within 48 hours and health returned within 10 days.

If I had not pulled out of fear mode, the doctor would have performed the lumbar puncture. Ruling out meningitis through that test, the doctor would still have to sit down and rethink, reexamine my son and find the correct diagnosis.

Take time to breathe and become clear-headed in emergencies. It will serve you and your loved ones very well.

Braking to avoid breaking

My life has changed. What I wished for (health, “typical” living, control) is largely nonexistent. My new life is wonderful, but harder, more demanding, scarier. I forget this somehow. So God, in his infinite wisdom, reminds me from time to time although I’ve asked him not to. Yesterday was one of those reminders.  I had to brake hard at 4:00 p.m….

My lovely Natalie  fell asleep on the way to horse therapy.  Not altogether surprising since daylight savings time began just 4 days ago.  I gave her the usual 8 bolus feeds through her g-tube while we sat in the parking lot.  She awakened just as I finished.  Before we could open the car door that food came up and out, as though cucumber soup had spilled over.  “I’m sick!” she cried. Yup. Hard braking required.

Her despair at missing horse therapy lasted for over an hour. I had to help her grieve and just be with her in it until she could move on. (She is still grieving this morning, but is at least distractible.)

Then it was my turn. I had to grieve enough to go on. Enough to live in the present and celebrate.  What am I grieving?  The unpredictable fussiness of this life.  Everyone has that of course, but the illusion of control can be so comforting, can’t it?   And the wondering.  I wonder if this is a one day or 5 day sickness.  I wonder will it be a hospital or home sickness.

More hard braking required.  As I reminded a dear sister/friend whose husband lost his job, we cannot live in fear of what might happen.  Fear devours life.

I found a brief video of our older daughter’s new puppy with all of us laughing.  I’m playing that to remember there is an upside to this life.

Have a great day!  It is the only one we have right now!

check out this award winner!

Tropfest is the largest short film festival in the world. Here’s the description of this year’s winner: Newcastle filmmaker Genevieve Clay has won Tropfest 2009 with her short film Be My Brother. The 20-year-old took out the top prize at the 17th annual awards in Sydney for her story about a young man with Down Syndrome. 

Sit back, relax, and enjoy!

Be My Brother