Monica

...the beautiful!

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Waiting and dreaming...

We are remembering the time we were there as we wait for the fun to begin tonight!


We saw the glorious stage.


We were entertained before the show began.


We listened to the singers give their all.


We listened to the judges critique the singers.


We got to vote by selecting the number on our seat's armrest.


It was so much fun at Hollywood Studios (Orlando, FL).
We are so wishing we were still there!!!

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My girls

...loving each other. (Pooh was just wishing he could be in the action.)

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Foreshadowing

Something was off and I thought it was just my attitude. I wasn't hungry and couldn't decide on something to eat. Nothing sounded good and the nibbles I had of a few things didn't taste well. So I went to the cupboard and found my cup of noodles, which came with a flashback. I remembered how those little cups of noodles have always helped me, most recently when I couldn't eat anything heavy - or I was afraid that I was going to see what I ate again in an unfriendly way. Nevertheless, I was happy and they helped me.(Just check out my crazy last post. It was actually a cover for a giveaway - but no one jumped at the bit. Aren't you sad you never commented now?)

Then, Saturday I was more tired than usual despite having the best night's sleep in a long time. Yesterday my throat was really scratchy and yucky. I almost used it as a reason not to go to church. I pushed myself through though and survived. Later in the evening, my sinuses felt different and I had that dripping feeling. In the middle of the night I was gasping for something to drink because my mouth was so dry. Yes, I was mouth breathing out of necessity because my nose was so stuffy and I had shoved Kleenexes into my nostrils because they were still dripping and I just wanted to get some sleep. (Ok, it was toilet paper. I used up all the Kleenexes last week using them as toilet paper. When will I be normal again?) Anyway, when it was almost morning I finally woke up enough to realize I had to do something. I got out the nasal spray. It helped me sleep the rest of the night.

I had a lot of gumption to get up and complete some things that I wanted to do today. Monica has school and Ken is working. The last couple of days I have been alone like that have been a huge struggle for me and I wanted to conquer that emotional struggle today. I got my stuff out, had a great photo shoot, (I hope) and then my body said, "I'm done!" I was going to take a nap. But, I can't sleep. When I lay down, I can't breathe. I can't even smell the Vapor Plug that is in the outlet right next to me. I am still not really hungry but know that if I don't have something to eat that I will be even worse. So, when I go get Monica from school I am going to get me some more of that fabulous noodle soup for dinner.

I hope I have the energy to get up, edit, and post those photos this evening and am able to send out the newsletters that my customers are dying to get that they don't know about yet. You know, because it's almost Easter - and those little girls need stuff for their dolls, right?

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Ode to...

Cup Noodles!
You are often tossed, trampled, and teased.
You are mistreated beyond belief.
Yet you perform a valuable service to those in need.
You are your own container and are quick and easy to prepare.
You are silly, slinky, slimy, and salty.
You are a food and a drink all together.
You are inexpensive, yet so valuable.
You are my physical sustenance when nothing else can be.
You are one of my best friends in my time of need.

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5 Question Friday

Mama M. has this blog hop every Friday and friends from the blogosphere help her come up with questions. I haven't posted before mostly because at least one of the questions makes you admit or 'fess up to any childhood secrets. My parents read my blog religiously. Today's questions seemed harmless along those fronts, and I have been staring at my computer screen for a very long time today. So, here goes...


Questions for Friday 3/19/10
1. Have you ever had a celeb sighting?
Only if you count spotting the local news media around town. We sighted several of them at Ponderosa one night and a very close family member of mine made everyone at the table go by their table just to confirm her suspicion. (I have been to a few concerts but that isn't technically a Plain Jane, out about the town sighting.)

2. What temperature do you keep your house?
We keep our house at 70 degrees. It used to be 72-73, but our need for that temperature lessened this fall. We keep extra layers and blankets handy if we feel a chill. My husband and I agree on the thermostat most of the time.

3. Do you notice dust at other peoples homes?
Not unless it is caked up or someone writes in it. I might think that they need to dust. But am I going to say it to their face? Heck no! I don't like to dust either. We try to keep a "clean for company" policy though. And, no, extended family is not the "company is coming" standards, unless you bring a toddler. Then, I wipe all my tables clean and cross my fingers they don't find something on their own.

4. What's the worst job you ever had?
The worst job I have had was bathroom duty at the toll road plaza I used to work for. It is amazing the messes that are made. EEEEEW!

5. What is your most sentimental possession?
My most sentimental possessions are this picture of my Megan, the ring that I wear in honor of her, the teeth that she lost, a clip of her hair, pictures of her sleeping, and the plaster molds we have of her hand and foot.

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Internal battle

I have this battle waging in my mind lately. I know that I need to get up and go each morning, assist my husband, help my daughter to school, and work each day to serve my family and those around me. I know all this. These "tasks" keep me going. They give me direction for my attention.

I have found in the last week or so, as I go about my daily tasks that my mind knows these things, but my body does not. It feels like my body is dragging along as my mind steers it into the activities I need to finish. The last couple of days, I hear the cognitive messages my body is sending out. "I want to quit doing this." "This takes too long." I will never finish in the set time I have set apart." "I am going to disappoint."

And then, I hear my mind saying, "Just keep going." "I can't just sit out." "What I am doing really does matter." "Things have a way of working for the good if I can just finish." "I can rest later."

Several times during the day I find myself with variations of this same conversation playing in my mind. As I type this, the thought of playing music, the TV, or any type of noise is probably needed. Obviously, the sweet humming of my sewing machine is not doing the trick of keeping my mind at ease. But I digress.

I have had this battle waging for such a long time that I am getting a firmer grasp on one of the most confusing passages in the Bible, as I was memorizing it for childhood quizzing anyway. That was essentially the problem though. I was memorizing the words as they appeared on the page in order to answer questions regarding the content. It was fun to learn at the time. It is virtually a tongue twister, if you will.

Romans 7:14-25

"We know that the law is spiritual; but I am unspiritual, sold as a slave to sin. I do not understand what I do. For what I want to do I do not do, but what I hate I do. And if I do what I do not want to do, I agree that the law is good. As it is, it is no longer I myself who do it, but it is sin living in me. I know that nothing good lives in me, that is, in my sinful nature. For I have the desire to do what is good, but I cannot carry it out. For what I do is not the good I want to do; no, the evil I do not want to do—this I keep on doing. Now if I do what I do not want to do, it is no longer I who do it, but it is sin living in me that does it.

So I find this law at work: When I want to do good, evil is right there with me. For in my inner being I delight in God's law; but I see another law at work in the members of my body, waging war against the law of my mind and making me a prisoner of the law of sin at work within my members. What a wretched man I am! Who will rescue me from this body of death? Thanks be to God—through Jesus Christ our Lord!"

My current life circumstances have brought me closer to literally feeling what is being portrayed in this passage. I know what I am supposed to do. But, I am not always going to be perfect. Some days my body will win this war that is waging in my mind. I will fail. The point is that I get up and keep trying to steer my body in the right direction it should go. God will help me as long as I seek His help. I have to keep asking. Thanks be to God who is able to keep carrying me!

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Memorial...Part II

Wednesday morning we had an appointment at the CP Clinic. It is the clinic Megan had a regular appointment with every six months. We could see all her doctors there in one visit. It took all day - but we fit it all in one trip. We called last week knowing the memorial service was on Tuesday night (the evening before CP Clinic every Wednesday). We got a shipment of Megan's formula, Peptamen Jr., just before we went into the hospital in late August. We really only needed the extension tubings for her GJ-tube that time we placed our order but the medical supply provider said they had to ship the entire monthly order at once and not just the extensions. So, we accepted the shipment to get the extensions.


We took these 10 cases (that's 240 cans) of the Peptamen Jr. to the clinic so that they could give it to families who needed it before it expired. After all, it was almost two months worth of a co-pay that someone else might not have to shell out to feed their child. We felt good as we packed up the little red wagon and rolled it back through the clinic door. A mother making her next appointment at the desk said, "Wow! They don't need all that anymore? Their child must be eating now." I tried to ignore it but just said, "Not exactly" and kept walking to our destination. The lady thanked us and said they would give it to people who could use it. I sincerely hope they do. This was the first complete item of Megan's that we have given away as of yet.

We decided to get breakfast in the cafeteria before going to the Pulmonary Unit to see if any of our 4 fabulous nurses were available for a hug. We got some last pictures of Monica with Ronald.


As we were sitting there eating our breakfast the first thing I noticed was this sign that things were going to change at the hospital.


If I hadn't been there I wouldn't have known that all the phone numbers were changing. It's a sign of life still moving forward there. Everything was not as we left it the morning of October 2, 2009.

I was going to be OK until Monica looked at me and said, "Look, Mom, there's a girl like May May." I looked up and sure enough there were two little girls sitting in their wheelchairs there eating breakfast with their mothers. I made it all the way to Indianapolis, to the Memorial service, through the service, even talking afterward, all night at the hotel, and still through the CP clinic visit. But when Monica said that to me, I lost my composure. I just sat there and said, "You're right" as the tears came and I couldn't help it.

I missed Megan more in that moment than I ever have I think. I wanted her to be sitting in her wheelchair there beside us like she had been so many times. The permanence came over me. We would never have a reason to return to Riley and need to update the phone numbers in our cell phones to the new extensions.

I collected myself as much as I could and we went to see if we could find our nurses. We saw one of them and hugged her. I cried there too. Then, we took Monica to see the child life specialists that worked with her. We found two of them and she got hugs. They also gave her an art project - they're so good at that. It's what they do.

Then, we got in the van and started the trip home. The trip home was very quiet. The conversation was sparse between us. I had to call Monica's name to get her to answer a couple of times to make sure she was still back there. She was - no worries.

We drove by Granny's grave site as we passed through Kokomo. Once we got back to town we stopped to see Megan's grave site since it was also on the way home. We sat in the circle and looked at all her decorations. There was still snow. The snow in Kokomo has melted already. The footprints from our last visit were still visible but fading.

As we drove out of the back of the cemetery alongside the shed, we noticed the presence of something that seemed more permanent than the absence we have been feeling and the black ink marks on the pages that still loomed in our past. We had been waiting on it all winter and anticipating its arrival. We wanted it and were excited to see it, but the sight of it took our breath away.

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Memorial

Tuesday evening was the Riley Hospital memorial service for children who died there between July and December 2009. We drove down as a family and took along the memory book that my sister made for us in September while we were living at Riley with Megan. When we got to the service we were signed in and given a memorial booklet. It showed the order of service, the shared reading passages, a couple of prayers -- and 83 precious names.

They invited us to decorate a square in honor of Megan. They posted them on the front wall together so that we could remember those that came to honor their children that night.


This picture shows what Meg's quilt squares looked like.


They welcomed everyone.
We had a shared reading passage.
They read a passage from Psalm 139.
There was a special reading for children from an adaptation of Ecclesiastes where there is a time for all types of feelings that may be felt throughout their lifetimes.


They read the names of all the children in the program while a soothing harp played. Meggie's name was 12th, alphabetically. They also added an 84th name throughout the reading. I couldn't stop myself from thinking that it felt like a graduation ceremony. But no one was cheering. I didn't want to cheer. It's the type of event where you don't want your child's name to be read but it's coming anyway. You wonder how it will sound when its your turn. How it will feel to hear your child's name. If they will wait long enough between names. Or, if the silence will seem too long between names. There were many tear-filled eyes in the room.

Then, they called the parents forward into a circle around the front table. They shared a poem and lit the four candles which represented the light our children were in our lives and that they will continue to be present in our lives even though they are no longer physically with us. Then, they presented all of us with a carnation as we went back to our seats.

After that, the service was concluded with a short reading and we were invited to have some refreshments and to share our pictures with others and mingle. We showed a couple of people our memory book of Megan and looked at pictures of other children.

We also spoke to the parents of the girl that passed away just a few rooms away from us in September. Monica played with the 22 year old girl in the play room the first week of September. The girl was discharged by the end of the week. We congratulated her for getting to go home. The parents thanked us for raising a daughter that looked beyond disabilities and treated their daughter normally. (Monica doesn't care if the person is big, little, deformed, have tubes in their arms, legs, nose, etc. If they are able to play with her, she would play with them.) About 10 days later the girl came back into the hospital. Two days after that, she was in heaven. I didn't know the exact date until I asked last night. It was 9 days before Megan left us. They thanked us for the discussions we had with them in September. They said the way we were making decisions for Megan helped them make the right decisions for their daughter.

In retrospect, it seems amazing how being available while traveling through situations can affect the lives of others around us just before they will be making similar decisions. God's preparations and timing are perfect even when it seems long and pointless at the time everything transpires.

After that, we went to our hotel for the night. We stayed in Indianapolis because we had a mission for the next morning.

To be continued...

P.S. - Sorry I said "Then," so many times!

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