Trying to calm my fears.

“There comes a time when you have to choose between turning the page and closing the book.”

Yesterday I made the choice to close the book.

I’ve been in a flux over the agency we’ve been going through for Parker’s  nursing hours.   Truthfully, we really only stayed because our day nurse had become not only someone who took excellent care of Parker, but someone our entire family had come to love.

Parker’s nurse and I tried to work our schedules around each other.  Need some time off……no worries.  Work better to come in at 8:30 in order to see your kids off to school?  Absolutely.

Because I put so much trust into this nurse I tried to make her experience here a win-win for us both.  Believe me, we’ve had our share of duds in the nursing department and I was willing to do all I could to make this a good working environment for her.

Almost a year ago this nurse found a beautiful little girl in a Russian orphanage.  She immediately fell in love and made the decision to adopt.

The time seemed far in the future and in a couple of conversations this nurse felt sure she would still be able to work even after her new daughter came home.

In my heart of hearts I knew better.  A brand new daughter with CP was going to need a lot of medical attention.  She was going to need to learn an entirely new language.  And, as many of my friends who have adopted overseas have discovered, not every medical issue is revealed until after you’ve made the trip to bring your new child home.

We talked of Parker’s nurse working for four days and then being off for four day.  This would allow her husband to be home with their newest family member.  At first I tried to believe that this would work.  But it became apparent to me that a kid like Parker wasn’t going to get sick only on days that our favorite nurse would be able to work.  Nor was I going to be able to make Dr. appointments for just the days she worked.

Then there was the worry of what type of nurse this agency would send over to work the shifts our favorite nurse couldn’t work.  This agency has a LONG history of sending over DUDS and I simply couldn’t bring myself to take on another DUD in order to keep Parker’s nurse for the few days she might be able to be here.

Her little girl is going to need much of the same type of care that Parker needs.  Her little girl deserves nothing less.

Neither does Parker.

And so I’m switching agencies.

The break with Parker’s nurse didn’t go as I would have liked it to.  On a day when she came to work and hour and a half late, she asked me if I had anything planned for the day…….because she needed to leave early to go to a wedding her daughter was a flower girl in.

Most days I wouldn’t have minded.  But this day the 20 year old and I had (for a month) been making plans to take off somewhere and spend some quality time.  The 20 had taken the day off of work and was ready to go.

I wasn’t going to ask the nurse to stay and miss watching her daughter in the role of flower girl.   Parker’s nurse needed to be there for her daughter.

I needed to be there for mine too.  One thing that isn’t often talked about in a family where one child has special needs are the feeling of resentment some of the other siblings can sometimes feel.  They remember the days when you had time for them, when you were a fun Mom, a much less stressed Mom, a Mom who isn’t always telling them “No!  We don’t have the money.”    Don’t get me wrong, they love their little brother, but it can be hard sometimes.

Right then and there it was as though I saw into the future.  And I knew what Parker’s nurse didn’t.  I knew how much her family was going to change when her new daughter came and CP became a part of all their lives.

Her family was going to need her in unexpected ways.  In ways that can sometimes stretch my family to it’s limits.

Parker needs a nursing agency that can supply him with great nurses all. the. time.   I made the decision on the spot.  I knew it was time.

All that day I felt as though I had just lost a close friend.  When someone is in your home 4 days a week they pretty much see it all……good and bad.  They discover some of your secrets and your discover some of theirs.

For the last three years Parker’s former nurse and I worked as a team in keeping Parker alive.  She was someone to bounce ideas off of and to create care plans with.

I woke up this morning feeling better, knowing that this is the right decision.


I can’t get the feeling out of my mind that it was due to the care that Parker’s nurse provided that his last right heart cath was better.  What if I can’t provide that kind of care for him?  The kind of care that comes with the letters RN after it.

What if the new nurses from the new agency know about trachs and vents, but nothing about pulmonary hypertension?

What if the new nurses are not experienced enough to add their questions to mine when we are at a doctor’s appointment?  Parker’s nurse was great at filling in the blanks on stuff I didn’t know enough about to even think of.

I woke up this morning feeling more assured that I’ve made the right choice and resolving to never rely on any nurse as much as I did on this one.

As of now I have yet to find away to remove the idea that Parker’s being healthier is due to his former nurse, and from here on out his health will only go down hill.

Maybe it doesn’t sound rational to you.  It’s very real for me.

I’d love to hear any of your experiences or thoughts.  Does anyone else feel this way when they lose a trusted member of their child’s medical team?


  1. Heather
    Oct 12, 11
  2. Stephanie Oct 13, 11
  3. Gina
    Oct 24, 11
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