05 June 2011

Weekend Tears

This week caught up with me.  And the tears flowed this weekend. 

Our hospital stay at Baylor Our Children's House has been really wonderful, certainly much better than ever before and nothing like I had expected.  In some ways, I actually found myself much more rested here.  For the longest time since Bennett was born, I didn't have to worry about his weight or how much he was eating.  For the first time since Bennett was born, my attention turned away from Bennett and on to Oliver's needs and caring for our family.

But things changed on Tuesday.  For the first two weeks here, my job was to sit back and let the professionals do their job.  But for the last two weeks here, my job is to learn how to do what the professionals do.  And then, I must figure out how I'm going to do it at home.

During our stay here, I went from having several free hours daily to having no free hours daily.  I went from not having to worry about feeds to feeding Bennett for 25 minutes five times a day.  I went from thinking about how to cope in the hospital to thinking about how to cope at home.

Without being too specific (as I wouldn't want my personal schedule online), here is what our feeding schedule will look like at home:

8am, Wake Up/Get Dressed
9am Breakfast Feeding (30 minutes)
10am Vest Time (20 minutes)
11am Bennett's Lunch Feeding (30 minutes)
12pm Nap (2 hours)
2pm Snack (30 minutes)
4pm Bennett's Dinner Feeding (30 minutes)
5pm Family Dinner
6pm Bath time
7pm Vest Time (20 minutes)
8pm Bedtime/Tube Feed

That's a complicated and difficult schedule to follow...because there is no time to do anything else but take care of Bennett.  No time for family.  No time for Oliver.

I remember a similar feeling shortly before we left the NICU.  Bennett had a schedule that seemed daunting and of no feasibility.  And, in that capacity, it was.  But we finally figured out some sort of system.  We were able to cope, even if it was practically unmanageable.  We figured it out.

And I know we'll do the same with this.  But probably not without tears.  Change brings me to tears fairly often, particularly big changes like this.  So, I am not surprised tears ran this weekend.  I will not be surprised if tears flow when we return home. 

It's hard.  It's hard to have a special needs child.  It's hard to be a parent.  It's hard to have your life flipped upside down, for the nth time.

The nice thing is that my mother and father were in town this weekend, along with my sister, all who teamed up together to take care of both of the boys for Brian and me so we could go on a date last night.  That, in addition to my leaving the hospital for a few hours Saturday afternoon to get a haircut, was glorious.  It was just the kind of relief I needed, the kind of rest I needed, to keep persevering.

This weekend, God gave me relief in the midst of my distress.  I believe he will do the same when I get home.  (But I'm under no illusion this is going to be easy, that's for sure.)   He gives strength to the weary and increases the power of the weak.  Isaiah 40:29

1 comment :

  1. Breck, thank you so much for sharing your heart with us. I'm praying for you in the midst of this crazy difficult time! God is molding you into an incredible woman of God. Just think: one day Bennett will be able to do this on his own--I can't wait for the day when he is able to strap on his little vest all by himself for therapy while eating cheetos (can he do that at the same time? Maybe not.) Hang in there girl...


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