Monday, June 29, 2015

Winds of change...

Change is not ever a fun thing to deal with.

Due to a lot of different reasons, our house is in a season of change.  Some things are exciting, some things are scary, and some things are sad.  Nonetheless, the tides are changing and leaving a lot of things feeling discombobulated.

I sat down today and made a list of the doctors/nurses/teachers/therapists who have given their notice to take other jobs or move to other offices in the past six months.  These are people who have been part of Max's team for many years, to just the past year.  But they've all been an important part of his care.

In the past six months we've said goodbye to ten doctors/nurses/teachers/therapists, in addition to his team of teachers at elementary school.  These are people who know how to care for Max without me having to remind them.  These are people who know the difference between bring him to the hospital, or handle it at home. These are people who know how he jokes, or how he learns.  These are people who have learned how to hold his head just right to get him to go to sleep.  And we've had to say goodbye and teach a whole new set of people the ins and outs of Max.

For the doctors who are moving on, we're grateful for all they've done for Max through the years.  It is incredibly difficult to get to know new doctors.  With doctors, you might see them once or twice a year.  When the same doctor has been following him for years and suddenly that changes, there is an awful lot of things to cover before they feel comfortable knowing how he works.  Quite honestly, it's exhausting explaining every little thing and pinpoint of medical history at every doctor's appointment.

For the nurses, therapists and teachers it's a bit different because they are the people Max sees every week.  They come into our home and know Max quite well.  I know with them it's always a consideration that they will be leaving Max in their decision to move on.  While I always appreciate that, it doesn't soften the blow that I will have to explain to him that they won't be coming back, or how much time and effort training a new person will take.

I think this must be one of the hardest things about needing so many people to keep him going.  I often wish we didn't need nurses, and weekly therapies, and so many specialists and doctors just to keep the big guy going.  I'm grateful, so very grateful we have them all, but just wish we didn't need it.  What must it be like to not have so many people having input on every aspect of your child's life?

For now, we'll keep training replacements.  And hope it works out that we click so there isn't as much change for him, and us coming up.  I'll be holding my breath a little at the months to come and the changes that will continue to come.   And know that we've been through more and ended up on top.

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