Yesterday, Cecilia had a seizure while on an outing with her group from
Easter Seals. Her nurse/habilitation supervisor called me to inform me, and I
pondered again the way my life is intertwined with this individual who is so
very challenged.
It has been a tough couple of months with her. Since
the first of the year, there are some medication changes going on, and her
behavior, never what you would call pleasant, has been along the lines of
“irritating, aggravating, agitating, restless, and aggressive.” Before she got
home last evening, I did the necessary calling to the neurologist, state nurse,
pharmacy, etc. and then headed out to an eye appointment with her. (Yes, blind
people need to have eye exams).
She was strangely quiet. (maybe because
of lingering effects of her 60 second petit mal seizure) This was a blessing to
me. I had to take Our Girl Nettie along as she was picking up glasses, and I
had a bone weariness that had nothing to do with physical tiredness. There are
just lots of things going on right now.
We got into the optometrist’s
office, and had a long, long wait. When we finally got into an examining room,
it was another long wait. When Dr. M. came in, I was surprised by his
compassion and understanding for me and his gentleness with her. I detest eye
appointments with Cecilia. I try not to look while they are lifting the
lids to those lifeless eyes and checking for problems. The one eye is partially
covered over by tissue, and the other is a dull blue lifeless thing. The first
time I watched, and ended up crying. It hurts me somewhere inside to see those
damaged, lifeless eyes and to think how much she misses. The interesting thing
is that I find the same response among the eye professionals. They are always
moved and saddened when they check her. I’ve had one doctor blink back the
tears as he wrote the required report for the state.
Yesterday, the
doctor told me quietly that he believes that, though her blindness was caused by
the high concentration of oxygen in the incubator when she was born prematurely
nearly 60 years ago, he also believes that there is years old self-inflicted
damage there as well. That really made me sad.
The strange thing is, I
love this gal. She has lived with us over eight years, and she still has me
guessing alot of the time. Sometimes I can predict what will set her off,
sometimes I can’t. She is non-verbal, autistic and blind. Sometimes I just
wish I knew what would make her happy.
She sometimes laughs. A high
pitched silly giggle that makes me think she’s done something to make life
miserable for someone. The interesting thing is that she sometimes cries. One
morning, after Old Gertrude died, she was sitting at the table, with tears just
running down her face. I had never seen her cry before. I said to her, “Oh,
Cecilia-girl. What is wrong?” I think I had been playing some of Gertrude’s
favorite music, but somehow I thought that it was related to Gertrude’s passing,
so I said quietly to her, “Are you missing Gertrude today?'” and she cried
harder.
She has taught me so much about patience and biting my tongue
and loving when it is hard. I’ve come down in the middle of the night and she
will have messed her bed or thrown up (something she can do at will) and I will
get her out and clean her up, change the bed and get her in clean pajamas and
tuck her back in. She never says thank you. She often acts like she resents my
ministrations to her. And if she has a good chance, she will do it again. She
has no concept of what it might cost me, and neither does she care. When I am
guiding her somewhere, she often does this little twist, jerk, downward pull,
intended to make me fall. She wants things done on her time, her terms and if
you mess up, she will let you know. If the phone rings, or one of Certain Man’s
many clocks strikes with Westminster chimes, she will make a loud, grunting
squealing noise to say that she doesn’t like it. (I assume that is her
autism).
Can you see, people, how we often are with our Heavenly Father?
Think about it. We get ourselves into terrible messes, and given a good chance,
we do it again. We often don’t thank Him, we resent His guidance, we have no
concept what His love to us cost Him and neither do we care. We want things
done on our terms and on our time schedule and if He “messes up” we are sure
that the rest of the world knows about it. We protest ungraciously against the
things of our lives that we don’t like or that rub us the wrong way.
How
very much greater is His love for us than mine for Cecilia. I am so
relieved that I can be quite certain that He does not harbor some of the
feelings against me that I sometimes do against her. And yet, I cannot help but
be reminded of how it must feel to Him when I act the way I do. It keeps me
humble, it keeps me focused.
And sometimes when I think of how sin has
darkened my eyes and what He must see when He looks there to help me do the best
I can do, I wonder if it makes Him weep.
Category Archives: Uncategorized
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. . . It was cold on the beach on Saturday.
But it was a perfect day for a marriage proposal.
It’s official.
Raph and Regina are planning
an August wedding.
Welcome to the family, Regina.
The girls our sons chose are so good for them.
For a long time
I prayed that
my sons would choose girls whom I could love.
I found out one day
that I needed to pray
that they would choose girls
who would let me love them.
In Jessica and Regina
I got the answer to both my prayers.
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Lupe’s husband, Ervin, arrived in safely in Guatemala last night.
We give grateful praise.
And for those others of you who have been worried that maybe she was not going to find things in Guatemala the way Ervin promised —
Here is a view of just a part of their beautiful home.
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I had a cousin whom many of you knew — My Uncle Monroe and Aunt Naomi’s Youngest son, Steve, who died in a farming accident in November, 1994. Today, his youngest son and his wife and their two little girls joined us for lunch. This was another source of great joy for me. I had never met this young man and his family, but I looked at his smiley eyes and saw his daddy. I looked at his beautiful daughters and saw my Aunt Naomi. If I were to say what my favorite part of this day was, it would be hard to choose, but meeting this young family would be high on the list.
David and Robin, Taylor and Baylee
And then there was a little bit of excitement this afternoon when things were winding down. I had lit some candles on my washer and dryer before the company came. It made some great light in a darkish corner, and it was springish looking.
Along about 5:30, the smoke alarm at the top of the basement stairs began to go off, and Certain Man went to investigate. I heard a great exclamation, looked across two rooms to the laundry room in time to see him dump a bucket upside down on my one candle.
It wasn’t really unattended, and if it hadn’t been for the doily, it would have been on a fire proof surface — but I got a good reminder again of how fast things can go wrong. I am so thankful for Certain Man’s quick thinking. I am a teeny bit sorry about my silk candle ring. I just got this particular one on Thursday!
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Around Midnight, last evening, the luggage came — and with it a notice that it had been searched.
The good thing is, that we cannot find anything missing. Not even the fruit that Middle Daughter had packed.
She loves passion fruit. Does anyone else think it is positively disgusting? It really looks like boogers! I don’t care how good it tastes, I am not about to put that stuff into my mouth.
“Mom, it tastes so good!” she says while slurping it down in front of my affronted face. She told me later that it took her three weeks to even try it. I’m determined not to develop the taste for it.
Other than that, how very glad I am to have my girlie home. She had to work last night, so she is sleeping today.
Our Nettie Girl is home with “aches in her legs” and general teary problems. And I am so far behind that it is sheer foolishness for me to even look at this computer.
Tonight, our small group is coming to pack Hope Totes for the homeless men at the Helping Up Mission in Baltimore. We are hoping to pack 30 bags. If you want to help, or want to know more, call me or message me.
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Deborah is home, safe and sound.
We are long on stories — which are so
wonderful to hear.
But short on sleep — as her plane was delayed, and
luggage was lost and we didn’t get home until 2 o’clock this
morning.
Lupé’s Mama went along to the airport with us. She spent most
of the trip home going through Deborah’s camera with her, soaking in the news of
her daughter, looking at the pictures of the beautiful house that Ervin has been
building these last six years, looking at the contrasts of beauty and poverty in
the country to which her daughter went, and wiping tears, while trying to smile.
One of the things that the News Reports almost never talk about is how
much illegal immigration costs the families who choose this life. I honestly do
not think it would be worth it for me. Even when everything works out “okay.” the cost is
exorbitant.
There are too many broken hearts, broken
homes, broken people.
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And
Dolly Named Rachel Beth
Rachel Jane
Rachel Beth
There once was a little girl named Rachel who was the Youngest Daughter of Certain Man and Certain Man’s Wife. On her fifth birthday, her good friend, Laura Beth, gave her a dolly that was soft and hugable. Rachel Jane gave her the name of Rachel Beth. Which was a combination of her name and the name of her friend. The dolly quickly became a lovey — sleeping with Rachel every night. Sometimes at great cost.
In the twelve years since, Rachel has literally kept track of the nights that she hasn’t slept with Rachel Beth.
That would be 24. As in 24 nights out of nearly twelve and a half years.
Soon after Rachel turned four, a Hispanic family rented our trailer. It was a father and a mother, their married daughter and her husband, and a teenage son and a seven year old daughter, Yajirah Guatalupé Ruiz Mancilla, who we came to know as Lupé. After a rocky beginning, Rachel and Lupé became close friends. Eventually, they came to regard each other as not only good friends, but sisters. In fact, they were baptized together at our little country church one Sunday morning. It was something they both looked forward to and back upon with a great deal of joy. Many, many nights, Lupé would sleep in the other bed in Rachel’s room. Rachel would sleep with Rachel Beth. Lupé had gotten a cuddly little dog that she named “Fetchie” (from the same family that had given Rachel her Rachel Beth) and she slept with him every night. I would go into their room to say prayers with them, and they would each have their precious “lovey” in bed with them.
Those of you who have been following this blog know the story of Lupé. What I haven’t said here is that I have a girlie who is grieving and grieving and grieving. She stoically refused to cry in front of Lupé because she was afraid if she started, they would never stop. She would come down late at night, sit on the floor of the laundry room while I sorted laundry, or crash into a chair and talk and sob and sob and sob. My heart ached for her and the pain. When it became evident that the time was drawing close for Lupé’s departure, there was this abiding sadness that dogged her almost all the time.
Two nights before Lupé was to leave, Rachel came downstairs with Rachel Beth. . I looked up from where I was reading in my chair, and saw Rachel sitting on the chair beside the fireplace, holding and caressing her dolly like a five year old. Her eyes were bright with unshed tears.
Rachel Beth is not very pretty. Her pigtails stick straight up in the
air. The years have done her some damage. The years have done
something different to my Rachel-girl. Her awkward adolescence has
blossomed into beautiful young woman-hood. She has a gentle and loving
spirit, and she is acquainted with grief.
“Mom,” she said, “Lupé and I have been talking.” She paused and then went on with some effort. “We decided that we are going to trade Fetchie and Rachel Beth. I am sending Rachel Beth to Guatemala with Lupé and she is leaving Fetchie with me.”
I was, quite frankly, alarmed. This was the dolly that she never, never, never wanted to part with.
I said, “Rachel, are you sure you want to do this?”
“Yes, Mom,” she said simply. “It will make me feel better to know that Rachel Beth is in Guatemala with Lupé. And having Fetchie here with me will make it seem like she is not quite so far away.”
And that is what they did.
Rachel got a card and wrote her heart to Lupé and got her dolly ready for the trip. She took a sharpie and wrote on her cloth body the following notation:
Rachel Beth
A.K.A. “Spooky Doll”
October 23,1995
to
March 13, 2008
Please take care of me
And she said good-bye to her beloved dolly, Rachel Beth.
And her beloved friend, Lupé.
She has slept with a cuddly little dog named “Fetchie” every night since.
This is another thing that has made me cry and cry.
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Yesterday, I talked to Deborah. She said that when they got to the airport, Lupé’s father-in-law was there to meet them with some brothers in law and some nephews. (Her mother-in-law was sick, so she couldn’t come to the airport. )
Deborah said, “Mom, you would love Ervin’s family. They are really special people. And when I saw Ervin’s father, I had such a sense of relief. He looks like Grandpa Yoder. He is built almost exactly like him, and he has the smiley wrinkles around his eyes. And he smiles alot. I just felt so comfortable with him.”
That, along with other things she told me, comforts me. It also makes me cry.
Even seeing him in someone else’s face would be pretty special.
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12:20 this morning, we had a call from the girls. They are safe and sound in Quetzaltenango, Guatemala.
For some reason, the call went through to our Verizon Voice mail so I didn’t get the message until this morning.
Deborah sounded happy and relaxed and said that all had gone well. She was calling from Ervin’s mother’s phone.
Praise the Lord for His mercy and His goodness to the daughters of the human race.
Yesterday was a difficult day for this mama. I know it was terrible for Lupé’s Momita, too.
Thanks for each and every prayer offered on behalf of the girls and the rest of us as well.
Deborah has a new camera, and she promised to take lots of pictures, so maybe I can give you a glimpse of what things are like in the town where Ervin and Lupé make their home.
O, give thanks unto the Lord for He is good, for His mercy endureth forever.
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Vaya
Con Dios
Now the hacienda’s dark
The town is sleeping
Now the time has
come to part
The time for weeping
Vaya con dios, my daughter
Vaya
con dios, my child
Now the village mission bells are softly ringing
If
you listen with your heart
You’ll hear them singing
Vaya con dios, my
daughter
Vaya con dios, my child
Wherever you may be, I’ll be beside
you
Although you’re many million dreams away
Each night I’ll say a
pray’r
A pray’r to guide you
To hasten every lonely hour
Of every
lonely day
Now the dawn is breaking through a gray tomorrow
But the
memories we share are there to borrow
Vaya con dios, my daughter
Vaya
con dios, my child
Vaya con dios, my daughter
Vaya con dios, my
child
(Larry Russell / Inez James / Buddy Pepper)
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Delaware Grammy 