New Symptoms. What to do.


Over the course of my daughter’s 14.5 year life, we have had new symptoms pop up every couple years. This year was no exception. She began fainting. It first happened on the beach at 8:00 in the morning. If it … Continue reading

Look Ma – no hands!

It has suddenly become one of those weeks.  I was coasting, doing so well that I let go of the handlebars. I put my hands in the air.

Then I lost my debit card. 

And she vomited again.

And her mouth hurts A LOT! And she will not let me look in there. Holding her down to look into her mouth as she fights me just doesn’t enable adequate examination. I talked to the dentist last night and got suggestions. I decided NOT to go in today as her pain seems better. But now its bad again. 

And she is freaking out about an upcoming (unfamiliar) field trip.  Daily. The field trip is more than 2 weeks away!  Short of actually visiting the zoo with her, I cannot assuage her anxiety.  We’ve watched videos of the zoo, looked at it on google maps. I’m out of ideas.

And her appointment next week with the dentist just got rescheduled to 6 weeks from now because the dentist has to be out of the office next week!!!!  

Okay. First things first. Debit card. Be back soon.

Have I lost the race???

Have you ever noticed that marathoners see success as finishing the race?  My mother used to go on 35 mile bicycle trips.  Never did she talk of first, second, third or fortieth place.  Just the experience of the ride. I need to look at life that way.  I haven’t lost the race.  In fact I cannot lose the race. 

I have five children. The first four are quite bright, if I do say so myself! They are also responsible, loving, kind, good-humored, humble, curious, playful, athletic, obsequious and clairvoyant just the best in nearly every way! Of course, that is my completely biased opinion. I have enjoyed their development and success.  It has been a source of pride and confidence for me, raising these lovely kids. As a parent it is reasonable to feel competent having raised children who contribute to society in large and small ways, who pursue dreams and love.

The struggles of child number five have threatened my self-image.

My 10 year old daughter has sensory processing disorder, as well as other undiagnosed issues. It is easy to feel like a failure as my child struggles with things so many of us take for granted. She cannot tie her shoes. She cannot eat enough to sustain her own body. She cannot write legibly. She has unpredictable medical catastrophes every couple of years. She will never live independent of supportive care. She understands enough to know she is, as she puts it, “slow”.  There is so much she does not understand. It is beyond my power to change any of this. 

As her mom, it is difficult to not take responsibility for her limitations. “What could I have done differently to avoid this?” rolls around my head, unbidden, sometimes accompanied by “Life is horribly difficult. Too horribly difficult for me to have any hope.”

One of the keys for me is to recall my areas of competence:

  • As powerless as I feel at times, her present condition could be much worse without my care. In fact, she may not even have survived to this point!
  • She knows she is loved. She is happy and playful. In the midst of her struggles, and mine, she brings joy to our family, our neighborhood.
  • I have wonderful relationships with my other kids.
  • I have wonderful friends and family.
  • I have interests and hobbies that challenge me and bring me joy.
  • I have overcome hardships and struggles without losing my sanity or joy.

No, everything in my life is not rosy. But I am alive, happily! Each day has new opportunities and new blessings, not just difficulties. Reviewing my competence opens up my tunnel vision.  I again see that I have a good life. A very good life. Yes, it has challenges. Big ones! If I inhabit a single day, not yesterday nor tomorrow, I am competent to handle this life I have. With joy! 

I can continue in the race knowing I am successful, I am competent.  Actually I cannot lose.