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!

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in all honesty….


here’s my contribution to your schadenfreude: (enjoyment obtained from the troubles of others).

Just about a year ago, I had hard chest pain at a public place with a medic on duty.  It had lasted long enough that it had to be checked out. I asked if he’d take my blood pressure.  He asked why and that’s when I lost control of my weekend.  As soon as he heard “chest pain” he was obligated to call an ambulance.

Oh blank.

So off I go to the E.R. for no apparent reason, as I was fine.  BUT the results of my tests had to wait a day to be reviewed by a cardiologist. I had to spend the night.

That’s when I blew it. I had the nurse call my doctor. I asked him questions, told him how the staff was failing me (they were not giving me asthma medications), said I was going to leave no matter what and then I yelled at him.  For about 3 or 10 sentences.  I don’t even remember what I said.  But I felt terrible about it and had to call him some days later to apologize.  He said he didn’t remember it, but I think he was just being kind. Either that or he gets yelled at a lot.

Here’s the part you can laugh at: there is a post in my archives titled Doctors and Communication: You don’t have to get angry”  Go ahead. Guffaw.

Sometimes you don’t have to get angry might be more accurate. From other experiences coming to mind, being angry has made the difference in getting better care. SometimesI don’t think I’ve yelled before. Who knows what I’ll remember by this time tomorrow. At the very least I have to admit the truth.  I was impatient, rude, accusatory, and I yelled! He didn’t deserve it. Someone did, but not him.

So communicate without anger? I’m trying.  As one of my older sons would joke, “Mom, you’re the most trying person I know.”

*sigh*

a work in progress.  that’s me.

the forest or the trees?


I was at a school district meeting a few nights ago.  We talked about assessments mandated by the State.  This year the assessment has more than twice as many questions and includes material our particular special needs children will not possibly know.  In last year’s assessment, testing in a given subject area would be terminated when a child incorrectly  answered three consecutive questions. This year all questions must be posed to each student. 

One mom was very concerned about the traumatic impact on her 4th grade son.  He is gaining traction in school and loses ground when faced with tasks far beyond his abilities. This culminates in a major meltdown when he gets home, and he doesn’t recover for days. Of course that produces an additional burden for mom, above and beyond the usual demands, which are above and beyond those ever expected by any mom. Her question to the district personnel:  “Would there be a persuasive impact on the State if we boycotted this testing?” Well, the answer came,  probably not and it would hurt the district’s overall scores, funding, etc.  

The struggle, repeated in many categories of life in the parent of a special needs child, overwhelms: keeping the big picture in mind (the forest) as we focus on our own child (the trees).  I so often just do not give a rip about the district. Yet I know that when En reaches the age of majority,  my darling daughter will probably be at the mercy of some state agency whether for insurance coverage, housing or total care. 

What then, the forest or the trees? 

Well, I rail against this answer: both.  However, my greatest responsibility is to raise my child well. So my ambition (one of many in her life) is this:  to teach her to take the test, and find the detachment to say, “someone made up a dumb test because the questions didn’t make any sense!”  

For her hope and happiness, her view of the forest must embrace alternatives to “what does that mean about ME?” Sometimes, the tests/laws/(fill in the blank) are dumb. Sometimes the decisions lack thorough consideration. Yes, sometimes it really is about someone else!  

In which case, I stick with the “tree” in my own home.  The forest is always changing and my little tree must be coached so she can navigate that forest as well as possible. Not that she’ll escape unscathed, none of us does.  I want her to be able to hold her head up, and know that she is a valuable member of society no matter what she can or cannot do.

After all, if knowledge/education can make the world a better place, shouldn’t we be further along as people than we were 500 years ago?

Traveling with chronic complex care issues…?


Last year my husband took our 13 year old son on a one month trip. They drove from Chicago through Kansas, Arizona, California, Colorado, Wyoming, etc. Needless to say, my darling daughter and I did not go. Just to refrigerate her food for that kind of trip would be quite a daunting task. And feeding her through the g-tube on a long car drive is more than I want to do. It ceases to qualify as a vacation when it is more work than being at home!!!

I’ve been reading a book called “What About Me?” All about the life of a sibling of a child with special needs. Okay, did I need any more guilt? I think not.

Anyway, I want to make sure I am not surrendering unnecessarily (!) to separate lives for my kids, separate lives when it is a big event that is “too much” work for me, etc. So, figuring out when I must respect my limitations and when I can challenge them is the puzzle of the day. Sudoku is easier and preferable.

So the guys are talking about a trip out east this summer. Do I slow them down by going along? Will I wish I had stayed home if I go? Between g-tubes and food and laundry and oh by the way I hate camping so it cannot be that, and the ever increasing distance in developmental age between these two kids… arrgghhh is it even something worth considering? Do I give my son the impression that I always stay home with his sister and am not involved in his fun trips?

This is a hard one and I sense there is no clear answer. Time to get creative. I’ll keep you posted.