A Stranger in My House

There are strangers in our house - almost 17 hours a day, 7 days a week.  You know that phrase "you can't live with 'em, you can't live without 'em"...well, it describes them perfectly.  I wish we could "live" without them, but at this point, I can't.  Don't get my wrong, most days I enjoy these strangers - they allow me the freedom to get things done without having to be a full-time mom and a full-time nurse to Toby...but some weeks are hard.  This week has been hard, so I had to make a list of grieving - grieving over for life not being normal.

Here are a few grievances this week:
1.  One nurse pointing out the white spots in my painting job - claiming in her note that she "knows I was looking for them" (I was not.)
2.  Little privacy
3.  Someone watching and critiquing almost every parenting decision I make or...don't make
4.  Related to 3 - but someone watching me lose my temper when all three boys are fighting (which happens to be frequent as of late - is it time for school to start again yet?), or Caris is whining and screaming (oh how I forgot what it was like to have a "normal" toddler) for two hours straight.
5.  Watching me lose my patience in the library today while Caris screams, Toby is purposely getting in the way of us trying to check out and just sitting over on that bench watching us...
6.  The conflicts they have with Toby - not giving him enough independence 
7.  Knowing when to step in and ask her to please do his care the way we do it so there won't be any conflicts
8.  Almost answering my front door when clearly I can reach it...
9.  Feeling helpless to change the situation
10.  Frustration because I don't have the energy or presence of mind to take care of all 4 kids by myself 24/7 and sometimes she is Toby's "stand-in" for myself...
11.  Not being able to cry and throw a tantrum because she's here..in the house...and at 4:30 p.m. when she leaves the urge to cry will be gone.


Okay - that sounds really negative, but this is the reality of our life.  Most weeks they are wonderful blessings, but some weeks they are frustrating annoyances.  I feel like a chicken penned in by the restrictions of their charting, med sheets...please can't I just raise my child the way I want to - can't we cath him in his wheelchair without worrying about your back issues?  It may well be time for a change - not sure what kind of change, but a change none-the-less.  I know that already my mind is working on and praying through a plan of care system to help Toby become more independent.  He is getting older and doesn't need to lay down in his bed for every medication given, trach care, and straight cathing.  It's time - praying that I have the courage and discipline to plan this system and implement it after our break away from all nursing care next week (much needed -  I know that God has orchestrated the timing of that).

I am going through a time of grieving again - grieving for what could have been, and for what has been lost - our life of "not normal"...I know God is there in the grief...and as my friend Jen reminded me through this scripture:
 
2 Corinthians 4:16-18 "Therefore we do not lose heart.  Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us and eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

Thank the Lord that this is temporal, and the hope of heaven is on the other side....trying to remember that these trsome days this "normal" seems too much to bear.  It oubles are momentary - just a moment in the light of eternity.  Trying to remember that others are dealing with far worse situations than myself, I can't complain...but it can be so difficult.