Sunday, September 1, 2013

Winds Of Change...

I finished reading Mary Poppins for the first time last night.  The movie was always one of my favorite movies as a child, and I'm looking forward to seeing the making of how that movie came to life with the new film, Saving Mr. Banks.

One of my favorite bits in both the book and the movie is when Mary Poppins blows in and out of their lives by the changing wind.  It's such a whimsical thought, that a whole household can be changed with the shift in wind.

The winds of change are blowing here in our home.  A couple of weeks ago, we bought a house.  Our house to be exact.  Since our year of traveling hither and yon for Steve's work, in 2008, we have been leasing; unsure where we wanted to land.

This past year, we have had to make the decision it was time to put down some roots, as Max is growing quite quickly and we need to make adaptions to accommodate his growth, and make things more accessible for him, and for us as his caregivers.

We knew we didn't want to move out of the area, but needed to make adaptions to our existing house to stay here.  We couldn't do that as renters, so we asked the owners if they would be willing to sell to us. Thankfully, they were willing and we were able to work it out between us, and closed quickly.

Since this past March, Max has gone from around 55 pounds, to 80 pounds today.  It's difficult for me to move him by myself these days.  I can, but in short distances, and with a lot of muscle.  Otherwise, I have to use his large clumsy hoyer lift to carry him from room to room.  Now that the house is ours, we will be adding an overhead track system to make moving Max throughout the main floor much easier.

We will also be eventually adapting his bathroom to be completely accessible to him with a roll in shower, and a smaller sink area, to give him more room to move around with his chairs and lifts.

The other change coming, is nursing help for Max.  He's been approved for 24/7 nursing care, due to his need for full assistance, and he will always need constant observation.  We will just be using nursing at night to start with.  With his risk of seizures, and lack of sleeping from our being up throughout the night with him we asked about getting a nurse to stay up with him all night. I don't know that we would have been ready for such a move even a year ago.  But, the winds have changed, and it's just time.  I'm sure I'll touch on this subject much more as nightly nursing starts.  It's all so new to us now, and we will start training the nurses next week.

Having a nurse in with Max all night means we will be moving rooms.  After one of Max's many hospital stays in the past few years, Max refused to sleep at all if he wasn't in the room with us.  Our master bedroom is HUGE, so we parked him in there with us.  But, now that a nurse will be with him through the night, we will move out.

Thanks to some very resourceful friends, we will be finishing out the basement with a couple of bedrooms, where we will sleep.  We'll also put in a bathroom and storage area.

We've been busy selling everything not nailed down to pay for all the new changes.  It's been good motivation to purge and make space in the basement.  Of course we'll have to do everything in phases since any savings we had went into buying the house.  But, we'll get there and it will all be much easier on our backs and sleep schedules in the long run!

It has been hard to come to grips that he's too big to move.  It's not a feeling of failure that I can't lift him anymore, but a feeling that I'm sure all parents get when they see their babies growing up.  And a bit of a feeling of not being able to take care of him the only way I've known how for nearly 10 years. It will also be strange to start having someone in our house taking care of Max while we sleep, but thankfully we get to choose who that person is, and train them to work with Max.  And, being able to rest knowing Max won't be turning over into a pillow and can't get turned over, or isn't having a seizure that we don't hear will be worth it.

This September is certainly going to go down in the books as one of the most eventful months in a while! Change never comes all that easily to me, but life with Max has taught me that sometimes we just need to go with where the wind takes us.

(Max and Momma reading before bedtime)


Thia said...

What wonderful winds! I must say, it is lovely to have bought a house and not have to move! Congratulations on all this good news.

Elizabeth said...

Glad the changes are ones needed and anticipated. Hang in there.