It's been a very hard week for me.
My sister went off the steriods last Friday.
I picked her up Saturday morning to stay with me for the weekend, and she fell in my yard just walking from the car.
That was the start.
It was dance recital weekend for my girls. My oldest was in 4 shows. My middle in 2.
Our family show was Saturday at 6.
In between the hub-bub of girls dressing, doing their hair, and applying makeup, i found a few hours to take my sister to the pool...
We had a hard time getting her out of it. I was scared the whole time that she would fall and i wouldn't be able to get her out. Her balance is off, her leg and one side are paralyzed, and something isn't working right in her brain. You can tell this because when i say an easy command like, put your left foot over here, then turn your body, she cannot understand enough to follow....this makes it very easy for her to fall.
Refusing to believe that she was slipping so easily into the need for a wheelchair, I tried to take her to the evening dance show.
We made it to our seats 1/2 hr before showtime. She lasted 20 minutes before telling me that she had to leave. She was feeling dizzy.
By that time the crowds were coming into the auditorium, and quite frankly i do not know how we made it out of there....
I got her back to my house and settled, and then went back to the show. I missed the first 1/2 hr.
I sat thinking of the past shows where my whole family...mom and dad and particularly my twin sister would sit and cheer on my girls. It used to be a big to-do....a day of ohhh's and ahh's and flower bouquets and family pictures.
This year was the worst.
I sat there with my husband and son tears streaming for no good reason other than the realization of how my life has changed, and how i'm no longer able to share these moments with my family.
For me, it makes them less.
I know that's not a good attitude.
But it makes them less.
Afterward, i quickly went home to check on my sister and give her her meds....
Sunday was one near-disaster after another....
There was a 1/2 hr when it was just she and I in the house, and she got stuck on the toilet.
She locked the bathroom door, and i was frantically trying everything i could find to try to unlock the door...
I thought i was going to have to call 911.
In between dance shows I took her home.
I was exhausted on Monday, but this was the day for the chemo doctor and round 2.
I used a wheelchair to get her into the hospital.
But she had to use the rest room after the appointment.
She didnt lock the door this time, but she did slide off the toilet and onto the floor in this little tiny space-
She frantically called me to help her.
She is so large that there is no way I could help her up.
I got her pants up and sat her up, then went for some help.
This turned into a circus as nobody knew what to do....
About 30 people (no exaggeration) were standing around this bathroom trying to get her into a wheelchair that didn't fit into the space.
It took at least 1/2 an hour and we made it outside. But she got stuck in the wheelchair and i used every bit of strength i had to pull her to standing so she could make it into the car.
At home, she could not climb the 3 stairs into the house. I got her into a wheelchair but we have no ramp. my mother wanted me to push her along the side of the house on a narrow path to the deck. The stairs there are less narrow and she felt that my sister could climb these. But the wheelchair got stuck in the mulch and i couldn't budge it.
Somehow I hoisted her out of that chair again and we made it to the front steps.
I have no idea how we got up them. It took forever.
She made it into the house and immediately into a chair there.
My mother said she would stay there until the ambulance arrived to take her to dialysis...
I ran out of there like a bat out of hell........wanting nothing more than to escape.
During the drive home I cried and cried.
The humiliation of falling-
The sheer number of people it takes to help-
The rapid decline-
The realization that my mother could not care for her if she were to need a wheelchair permanently....
Tuesday i worked. And Wednesday I took her to the neurologist.
He put her back on the steroids.
He made her get into a wheelchair. Said the walker just wasn't going to cut it anymore-
They say things like - cancer might be spreading.....or at the least brain necrosis- no way to tell...swelling of the brain? who knows- could degrade...nobody knows.
While my mother was at the desk making future appointments I took her to the hallway in the wheelchair, and i paced back and forth with her for 10 minutes. Everything is slow. Everything takes so long...
You can't escape.
My sister was sobbing openly as I paced.
And I was reciting my lines--- they don't know. they can't be sure. nobody has a picture. you need the steroids....i think it's swelling....you still need them...they will allow you to walk...
She cried.
The tears just come.
She couldn't see me, and as i recited my lines mine were streaming too.
People pass us by and must think we are very sad creatures indeed.
I went home afterwards to work.
I prayed on the ride that the steroids would work this time...
I got home in time to take my 3pm conference call. I had some developement issues to work out with my business liason, who also happens to be a personal friend.
The day before my ice maker had stopped working and I was waiting for a call from GE about sending someone out. Again.
When I got Karen on the phone she made the supreme mistake of asking me how i was.
I decided to tell her about the ice maker.
It's a long story.
I've had GE out 4 times this month.
I'm worried there's a short in it that might cause a fire.
I do not have the time to spend 1/2 days on the phone arguing between GE and the place I purchased it at.
I am frustrated.
She asks about my sister and I start to cry.
My voice isn't working.
And it all comes tumbling out.
I can't even control my ice maker.
My sister is falling apart.
My mother is going to have a breakdown.
My kids need my attention.
My house is a disaster.
I sob
and sob
and sob.
She knows something is very wrong.
I am a private person.
I don't break down this way.
She stays with me for an hour. I finally get a grip of myself.
I have 8th grade graduation.
My middle daughter deserves my attention.
I make myself focus on doing her hair...on telling her how pretty she looks.
it's so hard.
it's so sad.
Another occasion that was meant to be shared.
Lots of empty seats.
My heart breaks.
These are the times I should enjoy.
These are the rewards- right?
My babies are growing up and I won't get many more of these chances...
But it's so hard. So hard to have a light heart.
I get thru the graduation.
My husband takes my son out for ice cream.
My oldest daughter goes out with her boyfriend.
My middle daughter, the graduate is at the school dance.
I sit alone and cry some more.
You know the feeling when you think there can't be many more tears. That somehow you'll run out...
It doesn't happen.
The tears come. The sadness takes you.
Thursday I wait the whole day afraid to call my mother.
Afraid to know whether the pills worked....whether she is stronger...whether she can walk.
I waited til 3pm.
And when I called my sister answered and thank God she is stronger. Thank God sheis more steady.
She says she is strong enough to come again Saturday.....will i pick her up for the pool?
My mother really needs the break.
My brother needs my girls to work the store...
Yes, I tell her. I will come for you at 9am.
Today I took my oldest to her first college tour.
I have them scheduled throughout july up and down the east coast.
Everything keeps moving.
Even when you don't feel like moving anymore, you have to keep going.
People depend on you.
Find the strength.
So I sit here now. A free hour.
Finding the strength.
The kids are excited. It's summer and school is out.
I have to find the strength.
