Skip to main content

No Matter How You Slice It...

A day or a week, it doesn't matter, it goes way up and way down within moments.  And sometimes I really have to ask, is this normal?  Does everyone taste the bitterness amongst the sweet like this? 

For the record, this has been Ivey's best summer.  In her Life.  Which also means it has been mine.  One of MY happiest.  Slow, steady...FUN...friends, beach, pool, spend-the-nights, swimming, play-dates, trips alone, trips with great friends.  Time Home.  Our Family.  Together.  No emergency rooms.  No hospital over-nighters.

The world started spinning slower this summer.

Another change this summer was our nursing hours.  Two nights a week we are on our own.  No nurses.  For the first time in six years...  At first we were scared and intimidated of nights alone with Ivey.  We sat watching the clock not knowing what to do with ourselves.  It is a very weird feeling.  Someone so small can bring out our biggest fears.  In our world our nights revolve around our nurses in a perplexing way.  It has taken just as much adjusting to the two nights without a nurse as it did for these six years with a nurse.  I just can't put into words the rippling effects having nurses in a home places on a marriage, our marriage.  Talk about strain.  Absolutely no privacy.  Over the course of the summer we have come to enjoy our two free nights.  We are still scared and intimidated, sleeping with one eye open, up and down constantly standing in the doorway watching for the rise and fall of her chest, making sure there is milk for her 10 hour feeding, changing diapers, and fearing beyond the imagination that I/we will miss something that could take her from us.  We moved to this house after Ivey was born, the walls only hold memories of this crazy life, no memories are here of the peace of not knowing some of the things we know.  But the content of walking through my house for the first time ever with all the lights off is calming.  I had forgotten what it was like...

It makes me so happy and then sometimes it can make me so sad.  I don't know why.  Sometimes I just wish I didn't know the difference.

This week Ivey was up for her supervisory visit.  This means a supervising nurse comes in with our nurse at the 10 pm hour to ask questions get papers signed.  This is merely part of who we are and what we are...Ivey's parents.  This time I had to resign papers that give the nurses permission to do whatever necessary to resuscitate her, if that time comes.  I was not expecting that form to surface, again.  It breaks me. 

I always find it amazing that we actually live a life inside of a life - there are people and things we see and do, decisions we make, that are so foreign to our neighbors next door or across the street.  All they know is that there is a car parked in the drive or on the street of our home -  all night - and in the morning, it leaves. 

What no one understands is that a person is awake in our home all night as we sleep.  I literally entrust my daughter's life to this person, her nurse(s).  And yet, I don't know her husband's name, where she lives, or any personal detail really.  I do know what car she drives. The rules of home health nursing are strictly explained before they come in to your home.  Keep it professional.   - But she knows most everything about us.  If I washed the dishes before bed, what I was reading or watching on TV, how horrid I look at the end of the day...what my pajamas look like, if my children are in bed on time, what is in my refrigerator, if we took out the trash, if we are happy or sad, if we argued or talked.....every intimate detail that we all spend our days never knowing and sometimes harboring from one another....Our nurse knows-

Regardless of the size of the slice of pie, this summer has been good.  Really good.  It has been different.  It has been freeing.  It has been so good that I finally feel the time is right to jump back into work a few days a week.  A slivered sized slice of me has returned....

Comments

Unknown said…
Every home health nurse should read your words...So telling, so true...Miss you guys...Kiss Miss Ivey for me ;)
Heather said…
Rejoicing in your "good". Looking for a little of that good to flow this way Westward perhaps. Much needed here but truly, from the bottom of my heart, happy that this summer has yielded beauty intertwined with a normal most others have no conception of.

Continued prayers and love and light come from me to you, my sweet, beautiful cyberfriend. My heart is bursting with joy for that slice, no matter the size, that has returned.
Andrea said…
Welcome back...even if it is to a small slice of normalcy. It helps with the overall picture. Think of you often. Would love to get our families together soon!

Popular posts from this blog

And Sometimes Feeding Your Kiddo Looks Like This...

A simple sentence. No one said it to me in the beginning, but boy did that tube cause a lot of chaos. The NG tube graduated to the G-tube which morphed to a GJ- tube…. A brief history of Ivey's feeding tubes: *The NG tube was in place the first time I ever saw my daughter in the NICU.  My only memory of her without a feeding tube is them placing her in my arms immediately following her birth. *The G-tube, well, that is a story within itself.  That decision did not come lightly.  Another hole in her.  Another decision on our plate, but not really on our plate, it was apparent it was a medical necessity for her survival.  Literally to give her a chance to live.  A permanent decision.  A 5am panic attack in the Scottish Rite elevator that happened to coincide with Dr. Meyers arriving at the hospital at the same time as me.... Our intersection in the elevator set the stage for the years to follow. From that point on, he knew I was a little nuts and a lot...

BEAUTIFUL GREEN EYES........

Sibling Secret Sauce

Siblings of kiddos with disabilities are amazing humans walking amongst us. They live a life, most often, in the shadows of their sibling who simply needs "more". More time. More direct attention. More of more. We have now come to a fork in our road. Our boys are young men, and, our daughter is a young lady. I'll be honest, I was uncertain what life would look like once the boys left this home, once they had their own time, in their own personal sunshine. We found out quickly once Knox left for college his freshman year what that would look like. And then, when Walker left, we knew what life would feel like in their absence. There was too much space. Ivey felt it. We get many compliments about the relationship the boys and Ivey have with one another. Hints here and there that, maybe, Matt and I had some secret recipe to parenting a household with a child that is very medically complex and a very complex communicator. This is what I can tell you - there is no re...