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Early Morning Update

Friday, January 22, 2016

It's 5am now.  I couldn't keep my eyes open enough to write a late night post.  So, I'll consider this an early morning one. :)  

Late yesterday afternoon, we were released from the Recovery Room and brought up to the 5th floor where we are staying.  Bennett has slept on and off since waking up from surgery.  His sleep confusion and the constant rotation of hospital staff have left me equally confused on my sleep.  This is one of the biggest challenges of staying in the hospital: patient and caregiver being able to actually rest.


As soon as Bennett woke up from surgery yesterday, Brian stayed at Bennett's bedside so I could leave and go up to Waco to pick up Oliver from school and Avonlea from a friend's house.  Usually, I stay with Bennett during these times and Brian is the one who leaves.  But this time, I asked to go.  Emotionally, I needed a chance to disengage from what was happening to Bennett.  And, knowing we have a long hospitalization ahead of us, I knew I needed one even more.

I had a lot of time to reflect while I was driving by myself the 30 miles to Waco.  There was a real part of me that just wanted to keep driving - to not turn back around and go back.  Obviously, I would never actually do that.  But it felt tempting.  

Such a part of me wanted to drive away from my feelings and refuse to resubmit myself to pain - my own pain and the experience of my child in pain.  But that's not how life works...well, at least, not how my life works.

For whatever reason, my life seems to ask of me to reenter in to pain regularly.  In order to cope, I just must do so with added strength each time.  

When I was away, I was able to soak in some of the words of encouragement and prayers that friends have been sending us via texts and social media. An awareness that we are not alone in this journey helps us tremendously.


I did come back and was able to bring these two sweeties back with me, which was a delight for all of us.  We enjoyed some Chick-fil-a together as a family while Bennett slept.

I really loved seeing Bennett's face light up when he saw his brother came to visit him.  And I loved the little wave that Avonlea and Bennett gave each other when they recognized each other for the first time in this strange place.

I am SO thankful for these little people.  They comfort my heart because I know they have each other in situations like these.  I was able to watch those relationships unfold even more during their visit together.




Bennett wasn't able to play with Oliver and Avonlea like we had hoped but it was great the kids just got to see each other.  Avonlea asked a lot of: "what's that? what's that?" and reminded herself many times that Bennett "is sleepin'.  Bennett go night-night."  

Despite our reassurances, Oliver was very concerned that Bennett might be dying.  He wanted to know what all the tubes were for and what the numbers on the machines meant.  We kept telling him that Bennett is just being observed at this point, to make sure he is staying healthy.  But Oliver, in his 8 year old mind, seems to think one is either doing well enough to get out of the hospital or they are dying. :)

The reality is he knows on some level the seriousness of Bennett's disease.  He, like us, is afraid to his core that his brother will die.  And we have always been honest with him that Bennett is at a greater risk for that happening.  But we just try to use moments like these to teach Oliver the reality of the situation (no signs of him dying any time soon) and to remind Oliver that it's somebody's job is to stay up all night long to make sure Bennett makes it. 


In preparation for surgery, I picked up some little toys for Bennett to receive before and after his surgery.  I decided to also pick up a small Star Wars trinket for Oliver to give Bennett to comfort him when he saw him.  A favorite moment of the day came out of that exchange:

Oliver knelt down by Bennett's bedside and said, "Bennett, here's a toy."
Bennett took in a big breath and said, "Is that for me?!"
Then Oliver said with a grin, "well, of course, Bennett, who else in this room would this toy be for?"

What a heart for others Oliver has!  I would imagine it could be easy for Oliver to feel jealous in situations like these.  But he never is.

What Oliver didn't know is that hid a small surprise for him at home for he and Brian to find when they got home last night.  Everybody can use a little pick-me-up during situations like these.  Since we are well-versed in hospitalizations and surgeries at this point, it was easy for me to think about these things in advance.

Oliver is getting to spend the night with his Daddy at our local Zoo for a Boy Scouts event tonight. He has been looking forward to it for months.  So, I bought him a new flashlight so he would know that I am thinking about him when he and I are away from each other.  Avonlea has someone who will be watching her at our home overnight.  I'm so glad we are able to carry on life as normal. Normalcy is what helps us cope with situations like these.

One Response to “Early Morning Update”

  1. Thank you for sharing your honesty, your stress, your pain. It helps guide our prayers for you, Bennet, and the rest of your family. May today bring joy in the midst of the intensity! (Also sent you a PM :)).

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