Watching the Lights Go Out~2010 Dr. Charles Poetry Contest Entry

Recently, Dr. Charles announced the first annual "2010 Charles Prize for Poetry". He states,

"Bold and pretentious name aside, the award will be given to the writer who submits for consideration the most outstanding poem within the context of health, science, or medicine.
Open to everyone (patients, doctors, science people, nurses, students, etc.). 1 or 2 entries per person. Poems should be related to experiencing, practicing, or reflecting upon a medical, scientific, or health-related matter."

The winner will recieve $500 and a cherry tomato from his garden. There are three judges and the contest is open through 8/31/10.

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Here's my entry~

Watching the Lights Go Out

Watching the lights go out,
is a scary thing
or at least that’s what it seems like.

I never imagined when my Dear Son was born,
that the first ten years would be spent
trying to move forward
forever chasing the milestones
only to spend the next ten years
going back
with the lights closing in on each behavior
like a bad game of “Deal or No Deal”
where instead of dollars,
his behaviors are listed on the game board
with the lights going out as each behavior
goes away forever.

Sometimes, you don’t realize the behavior is a gift,
when it’s something small like moving your foot
and then suddenly, the light begins to flicker
and it goes out, never to turn on again.

Sometimes, though, you think it’s out and then
suddenly it flickers again…
You get excited thinking it’s back
only to find out it was a fluke
as you watch another light go out forever.

As the days go by,
you realize that there aren’t many lights left.
You wonder when they’ll all go out.
Heck, some nights, I wake up in a sweat
worried they’ll all go out at once
then I’ll be left with nothing.

Other days, I am lulled to sleep by thoughts of days gone by,
when he was full of life and his smile was a mile wide,
of happy times when he walked on his knees over to the kitchen counter
to let me know he was hungry,
and looked up at me with that big grin,
with eyes that would melt a Mother’s heart.
Oh, how I miss those days.

But now, I wake up in the middle of the night
to sounds of him choking on his own saliva.
He can’t seem to cough or swallow anymore
and the wretching sounds of his battered lungs trying to gasp for breath
take over the room...
I call out to him to cough as if doing so will help him.
In desperation, I jump up and suction him
hoping to keep the light on
one more night.

Note: Dear Son is eighteen years old and suffers from seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene; he also suffers from a progressive neurological disorder.

Charles Tillman Cornerstone Foundation~TendHer Heart Luncheon

Last month I received two invitations to the Charles "Peanut" Tillman Cornerstone Foundation TendHer Heart Luncheon. This is an annual event put on by the foundation to honor mothers of critically and chronically ill children for the sacrifices they make to care for their children. The brunch gives mothers an opportunity to take some time for themselves and talk to other mothers in similar situations.

Charles Tillman started this program after his three month old daughter was diagnosed with Dilated Cardiomyopathy. Shortly thereafter, it was decided that she would need a heart transplant. It wasn't long before they found a heart for his daughter however unfortunately, it was rejected by their physician. Sometime later, at the age of six months, she received her heart transplant. As a result of this experience, he and his wife spent several weeks in the hospital. During that time, they saw other parents caring for their seriously ill children and more often than not, it was the mother who stayed at the hospital to care for their children, often giving up their jobs and making sacrifices to be with their children. As a result of this experience, he decided he wanted to do something to honor these mothers and the TendHer Heart Luncheon was started. The luncheon was a success and is now one of five programs administered by the Charles Tillman Foundation whose mission is to provide opportunities and resources to children or families in need. But you may be more familiar with Charles "Peanut" Tillman's on-screen persona as Number 33, left cornerback for the Chicago Bears.

The invitations were sent to top three pediatric hospitals in the area and the Make a Wish Organization. I received the invitation from Big Academic Medical Center and from our contact at the Make a Wish Foundation. I was so flattered. In addition, they offered a shuttle bus from each of the three pediatric hospitals for those without transportation. Everyone was invited to use the shuttles regardless of whether or not your child was in the hospital. I drove to the hotel.

The TendHer Heart Luncheon was held downtown at a luxury hotel. Although I RSVP'd I wasn't sure if I would be able to go. Dear Son was up several times last night and has been suffering from more seizures lately. I spoke with Ped Neuro Doc on Friday and we increased one of medications so hopefully, Dear Son will be more comfortable soon.

The luncheon just happened to coincide with the filming of Transformers 3 which meant several detours. The mayor closed down several major streets for the filming which is perhaps why the carriage ride was empty. Regardless, it was pretty and the perfect day for a gourmet brunch.
The luncheon was held in the Chagall Ballroom.

Of course, I was all dressed up in my "Sunday's Best" according to the dress code. I was pretty sure this meant "new dress" so I went out and purchased one. Of course, it wouldn't have mattered what it said, I am pretty sure I would have read, "new dress", lol. Of course my earrings didn't photograph very well so it looks like I chose not to wear any which was not the case.

Soon I arrived at the ballroom. As you know, since tablescaping is my hobby, I couldn't help but take some pictures of the room. The chairs were outfitted with pink and green satin ribbons. Pink and green were the luncheon colors, both of which are also two of my favorite colors.

The luncheon was buffet style, hence no plates at the table. Instead, there were matching green napkins and gift boxes for the mothers.
Here is another picture of the room. I tried to get a few other pictures of the room however the ballroom faced the street and the outside light was in front of me instead of behind me so the photos turned out too dark to share.


As we went up to the buffet table, I had a chance to talk to Charles Tillman. I thanked him for the invitation. We chatted a bit and he talked about his daughter's surgery and how the luncheon was started. He talked about how his situation was highlighted due to his celebrity status and how his daughter's situation changed him and made him want to do something more for these mothers. I thought it was great that he used his celebrity status as a platform for his foundation. He was a very kind and extremely personable man. I was also impressed that he not only stayed for the entire luncheon but also was very interested in speaking to as many mothers as he could.
From there I proceeded on to the buffet. The buffet was located on the other side of the room so it was difficult to get some pictures however I was able to get a few photos of the dessert table that was located near our table. The strawberries were delicious; everyone especially loved them when they were coated with a little chocolate from the fountain.

Another guest helping themselves while I took pictures. I am sure she liked that.

After we were done eating, he took the time to thank everyone for coming. He talked at length about his daughter's medical situation-how they found out, how they felt, what transpired and all of the emotions surrounding their ordeal. He talked about how the luncheon came about and how the invitations are sent to the social workers at the hospitals since they are the ones who know which families have the chronically or critically ill children.

He also invited mothers in the room to share their story or to share something about their child or situation. A dozen women or so shared their stories. It was really interesting to hear their stories. It seemed that no matter where you were in your own journey, you could always relate to what they were going through and the love they felt for their children. It was interesting too to watch Charles Tillman. He seemed genuinely interested in the stories as well and no one felt rushed. It was truly a lovely afternoon.

As I heard the stories and even shared one of my own. I recalled how difficult it was when he was just a baby and didn't meet any of his milestones. You will remember the story I wrote here, called, "Don't Hate Me Because I am Beautiful" when I had asked myself at the end of the first year, just what did I have. I had a baby that couldn't do anything but yet, I knew that when I held him close to my heart and hugged him, that he was perfect. As I searched for something, I realized that what he had was the fact that he was beautiful. And as the commercial went, "Don't Hate Me Because I am Beautiful" I said, Dear Son would say, "just love me because I am."

I couldn't help but be reminded of all of the lessons I learned along the way. As different women shared their stories, I remember thinking, "Oh, I remember when I/Dear Son went through that." It was really something to not only hear what other parents have been through, but also a little reminder of just how much my Dear Son has been through. It was exciting as well as different mothers shared their stories at my own table. One lady, had a child who has been at one of the hospitals for eight months. It was her first child and she's on a vent, has a trach and will go home for the first time next month. I was lucky enough to see her beautiful photo album that she brought along with memories of the last eight months. Another lady shared a story of her three year old and all of his issues. He has a catheter and wears a bag along with a multitude of issues. But when you see his picture, he is nothing short of the cutest three year old you would ever see. You could see he got his joy from his mother and pictures like those reminded me of my own beautiful son.

After everyone finished their stories, he thanked all of the mothers for coming. He thanked everyone for "dressing up, wearing their pearls and looking beautiful." You could tell he was genuine in wanting to make every mother in there feel good after knowing all that they have been through.

Next, he thanked his foundation board members for making it a great day as well as the hotel, which is one of his sponsors. Several of the board members also attended the luncheon.

Next, it was onto the presents. Every mother received a present from one of the jewelers. They brought out a pretty tray and each mother received this gift.

Inside each bag, was a necklace that was custom made for this event. It features two hearts; the larger heart signifies the mother, and the smaller heart, the child. Once I arrived home, I decided to stage it on some pink petals so you could see it better.

Here is another picture of the bag and of the necklace. I thought it looked like a flower when I staged it.

Each mother also received a little black box from the hotel.

Inside each box was some chocolates.

Next, they gave away some special baskets with different spa treats. Others received pink or green gift bags and the rest of us received Vera Bradley gift bags like this.

Let's see what's inside...an autographed photo of Number 33, Charles "Peanut" Tillman. Oh, Dear Son is going to like that.

You remember Dear Son used to have the Chicago Bears logo on his AFOs, back when he could stand. Now he has them on his hand splints.

Next, was the spa essentials from H2O. What mother couldn't use a little pampering?

And how nice was that, that it matched my bathroom.

All in all, a wonderful afternoon.

Note: Dear Son is eighteen years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene; he was one of the first boys in the world to be discovered with his particular pattern of the gene mutation and appeared in the Journal of Neurology. Since that time, he has been diagnosed and suffers from a progressive neurological disease.

Dear Son~The Graduate!

As I mentioned previously, Dear Son's High School graduation was scheduled for Tuesday, May 18th, the week of his Make a Wish trip. As you know, I was very disappointed. This year, was the only year the school had ever had their high school graduation in May and for 2011, it will be in June. What were the odds? As a result of the date, we were unable to attend. They did however decide to have a mini ceremony in his classroom, a week prior to our trip. Although I was unable to attend, they had a great time.

Prior to our trip, we had his annual IEP (Individual Education Plan). At that time, we talked a bit about graduation. It was then that I learned that they don't really "graduate" at all, instead they get a, "Certificate of Attendance". Let me explain. I was under the impression that when he completed twelve years of school, he would graduate. When he completed the 8th grade, he graduated with the class and got his diploma. At the IEP, they informed me that he would not be getting a diploma. I got that impression after reading the high school manual regarding the requirements for graduation which included the special education classes and the IEP. I talked to the Director of Special Education after the IEP regarding the diploma. She wasn't entirely clear herself and after checking with a few sources, she called me back to explain the rules.



Apparently, if a special needs student takes "for credit" classes and complete the required number of credits, they will get a high school diploma. If however, a special needs student completes their IEP but does not take "credit" classes, they earn a Certificate of Attendance. (They still participate in the official high school graduation ceremonies, complete with cap and gown.) It wasn't a big deal however I never really thought about it that much. The reason it was a surprise was because in all of Dear Son's eighteen years of school and twelve IEPs, no one had ever mentioned that he would not get a diploma. In addition, he received a diploma at his eighth grade graduation. That being said, the Director of Special Education and I had a good conversation around this topic; she was surprised that it was never mentioned in any IEPs. They did some checking and apparently, not many parents knew either. The bottom line was that they will be informing parents in the future. She asked me at what age they should tell the parents. I said they should inform them right from the start, at the early IEPs. I think it's important to know what to expect and to be honest with people. I was fine with the Certificate of Attendance but it just wasn't what I expected.


Now then, on to the party. Since we couldn't attend the graduation, they were nice enough to present his diploma and throw a party for Dear Son at school! Here is Dear Son and his classmates, getting ready for the ceremony.

I thought this was a sweet picture of his classmate and Dear Son.

Reflecting back over the years before the ceremony?

And now the "Certificate of Attendance!" His teacher is the one in the green top.

His teacher trying to help him open his hand to accept the diploma.

Of course, what's a party without a special pinata for the graduate!

Every student in the classroom gets a chance to try and knock it open!

Another classmate.

And finally, bingo!

A class photo.

Pictures with a few classmates.

Congratulations from his favorite teacher!

Time to celebrate! He's been going to school since he was three years old!

Tossing the diploma up in the air (with a little help)!

After the ceremony, they put on some party music. Each student has a song for each of the decades (70's, 80's, 90's, etc.). One of Dear Son's songs was, "Achy Breaky Heart" (Still not sure why he likes country music, lol!). When the song came on, he looked over at his teacher (O.K. stared at her across the room until she came over.). Then she asked him if he wanted to dance. Here they are holding hands and dancing. I love his face in this photo!

And finally, the diploma in his room on top of the bookshelf. It's sitting in front of one of my favorite pictures of him when he was four years old. It was 8 o'clock in the morning and he had on his Disney shirt and his new "wide leg" jeans in a size 4 slim. I took this picture in front of the flowers at my house. At that time, I told him it was my favorite picture because it's of my two favorite things, "flowers and little boys". Since he couldn't sit up alone, I sat him on this little white chair. I figured I'd take a lot of pictures hoping one would turn out. As he sat on the little chair, he slowly started to turn his body around trying to get his foot into my flowers. He knew he wasn't supposed to do that and he ended up laughing so hard that he fell off the chair. When I got the roll of film (this was before digital cameras), I fell in love with all of the photos and framed them all.

And now, the diploma and his graduation picture sit in front of the photos of Dear Son as a little boy. It seemed like he went from four to eighteen overnight. My how time flies. All these years when he would be really sick in the hospital, I would pray that he would get well and that he'd live long enough so could see him all grown up. I wanted to know what he'd look like as a man. So Dear Son got his wish and I got mine. I am so happy I got to see him grow up.

Dear Son Update

Dear Son has been having more seizures the last two weeks or so. It started with some short seizures the week of the 14th and then escalated from there. Soon, I was noticing more and more and contacted the nurse. The doc was out of town and last Sunday, the 20th, Dear Son had so many seizures that I contacted the Pediatric Neurologist on call. He probably had twenty plus seizures that day. They recommended using some Diastat, a medicine that stops the seizures. I used it Sunday and it seemed to stop them for a few days and then he had some issues last Wednesday and again on Saturday. His seizures seemed to be getting longer and increasing in intensity. I ended up calling the nurse a few times. He is sleeping most of the day now.

The nurse recommended calling Ped Neuro Doc on Monday to get a plan in place for the holidays. Apparently, the doc and the nurse have each scheduled vacations in the coming days and one of the other neurology nurses will be out as well. The nurse called me back yesterday and the doc increased one of Dear Son's meds to help with the seizures. I have been using his Vagus Nerve Stimulator but he was having so many last week, that it didn't seem to help as much.

Dear Son seemed better this week, with only occasional seizures. He had two this morning and is sleeping a lot more.

Summer school starts next week. The doctor would only give approval for him to go two, half days a week. I am sure Dear Son will enjoy it.

On the home front, I am definitely enjoying summer. You can't beat a good summer salad. At least if I am home, I can eat well. This is one of my favorite meals, Ahi tuna on a spinach salad. I use all organic fruits and vegetables and I love the way the raspberries and kiwi look against the spinach. I like this salad with some poppy seed dressing. In retrospect, it's probably not the best plate for photographing salads (I've been reading some food blogs lately so I am trying out my photography skills.). For the fourth of July, I have a new recipe I'd like to try however I am not sure if I'll be able to get to the store to get the ingredients. I'll post pictures of that if I do. I'd really like to get back to my tablescaping again but that will have to wait until Dear Son starts school in the fall.

And the cat, well, he seems to be enjoying summer too. Nothing like a good cap nap.

I'll try and post Dear Son's graduation pictures soon. They had a graduation party at school and the pictures turned out great. I am sorry everything is taking so long to post these past few weeks. It's a lot of work some days taking care of Dear Son round the clock and that has to be my first priority.