The Blue Day…rails, chairs, and days of wondering

I think for the current time my home is now the proud owner of the last pieces of medical equipment…at least for tonight anyway!!  Chloe spent some time with an OT today and she has appt on Thursday with a PT so there will be some more equipment coming but not tonight!!  There’s a reason that Scripture says do not worry about tomorrow for today has enough worries of it’s own.  

Our last rail was installed today in our bathroom!  Huge thanks to the two awesome guys who installed it for us.  Noel and Tracy are awesome!  Love them both tremendously!!  I have worked so hard to make my home accessible without it screaming a person with a handicap lives here!  I’ve done a very good job of that as well.  However, the pole by our bed and now the final rail in the bathroom…they both SCREAM that we have mobility issues here.   I have been in the bathroom three times and each time, there is a sick feeling that washes over me.  There is a part of me that is SOOOOOO very grateful for each piece of medical equipment that has entered our home over the past three months!  And I don’t resent or regret these equipment purchases at all!!!  But sometimes things are such a visual reminder of life now!  I know that one day I am going to walk in my bathroom and it is just going to look normal.  But for today…it makes me sick and terribly sad!
Two new chairs….a new shower chair which you’ve heard about in the blog post about our little encounter at the hospital.   And then came the power chair.  I thought I was ready for the power chair.  I have had to help Zine so much lately and I could see him struggle to push himself often in his manual chair.  I could imagine all the possibilities of things that could now happen when he changed chairs.   I was pumped and couldn’t wait until he got it!  Well, he got it last week!  And I quickly found out that I wasn’t nearly as ready as I thought I was.   Although I have done my good wifely duties in encouraging him to use it and not be afraid of it, reminded him of all the things I had envisioned him being able to do, etc. on the inside everytime I see him in it, it produces an extreme sadness and grief.  Sunday was the first day we had been out together and him be in his chair.  I was definitely NOT ready for that!  I perfected my fake face for awhile and made the best of it.  Definitely didn’t want to let my mask down one iota Sunday morning.  But it made me very sad! 
A week of wondering when this new treatment with his blood is going to start has also about been more than I can do!!  I like my calendar.  I like to know details.  I don’t like just waiting and wondering.  But…I don’t want to be an annoying family either.  So it is definitely a constant struggle to know what and when to contact and when to wait and remain silent.  We did hear some things on Friday.  They can’t take his blood from his port.  So a central line is typically placed.  However, since he is on blood thinners they can’t place the central line until he is off of blood thinners for a time period.  So we are not certain what is going to be done about that.  Still waiting for our marching orders!  So…since it has been a week…I decided to contact the neurologist office late this afternoon.  Got to talk to my favorite nurse  for which I was grateful.  She was like I HAVE NO CLUE!  She assured me she would try to get with Dr. L and find out what was going on and where that process had been halted.  So…we shall see if tomorrow is the day that brings some answers to this big thing hanging over our heads!!
Feeling very heavy hearted tonight!  If you’ve never read this book I would suggest it.  It’s a great coffee table book!! It has definitely been a blue day book moment over and over and over for me the past few days!  You can watch it on YouTube as well.
However, despite it being a blue day book, I am grateful that in the darkest moments that others do not see, God is in the midst of them bringing strength, comfort and peace.  I shared with a friend today about grief.  When we look forward we say we can’t do it.  But when we look backwards I say there’s no way we could have done things that we have done!  So I know it is only by God supplying each and every need that we have done those things.  And it will be by God supplying each and every need in the future that we will do those things as well!  So I am certain I have my head knowledge and heart knowledge correct.  But…sometimes…the heart has to grieve deeply because it loves deeply.  And tonight is one of those nights!


Wife of 20+ years. Mom to 3 children. Love sharing my life with weary hearts so that we can know the One who is Good, who is in Control, and Whose strength is made perfect in our weaknesses.