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Wednesday, December 16, 2009

Giving Thanks in 2009


Isaac and Freddie
Originally uploaded by Regina Holliday
I remember New Year's Eve Day 2008. I was at the Toy Store. I was finishing up for the day and told Steven, the store manager, that I could not wait for 2009. I said 2008 was so bad it must get better in 2009. Steven just looked at me and said, "2008 was great for you guys. Freddie got to go to Ivy mount and Fred got his dream job at AU." I suppose it seemed from the outside that I was complaining for no reason. But 2008 was very hard.

In 2008, we got the test results for Freddie that said he had high functioning Autism. We had to make a choice to fight for placement in a special ed. Program. In special ed books, they say it is like planning a trip for Paris and ending up in Iceland. Iceland can be a very nice place, but is a shock to give up your plans of Paris. Fred took it very hard. We went to family counseling for 5 months and paid out of pocket as we were not insured for this therapist. He was a wonderful Dr. and cut our bill in half due to need.

We were working constantly and in a tiny apartment in 2008. Fred worked 3 part-time jobs. I worked two part-time jobs and one full time job. Fred and I split the childcare between the two of us. We hardly got to spend any time together. We looked forward to a therapy sessions just because we had 30 minutes to eat lunch on the doctor's stoop before we would meet. It was great. We called it our date. We would eat gas station hot dogs and just talk to each other.

In the summer of 2008 Fred got word he would be hired by American University in the Fall. We were so happy. I went to part time at the toy store and Fred began work in two departments at AU. He was very tired and frustrated a lot of the time. He couldn't understand why it was so hard to do his job and why he had so little energy; but he buckled down and worked hard. Most of his students loved him.

The fall came and went. Freddie missed his old friends from his old school. Isaac seemed to be doing well in his two year old class at CCBC. I juggled childcare and two jobs. Fred finished his first semester at AU. By New Years, I was pretty worn out. I left the store on new Year's Eve and went by CVS and bought a can of Fosters Beer. I thought Fred and I could share it that night.

When I got home Fred said he just wanted to go bed he was too tired. We would celebrate with Fosters some other day when he felt better. And so began 2009....

In January, Fred began to teach again. He his chest hurt. He went to the ER and they said it was cracked ribs from coughing.

In February, everything got worse. We were all sick with a very bad cold. Our computer was fried by a virus and while we were trying to drop it off at Best Buy our car died in the lot. This was Valentine's Day. Fred and Freddie rode in the Tow truck to The BP station (Where the mural is now). I pushed Isaac in the stroller. It was raining and I was sick with a cough. THe CCBC auction was on the 21st and coughed through drawing 100 children's portraits. Fred was without a home computer so, in pain, he would go each night to his office at AU and respond to email, do Blackboard and Facebook. We began calling February "Cursed February." Fred kept going to his doctor and she kept giving him pain pills.

In March. Our. life. fell. apart. On March 27th we found out Fred had tumors in his kidney and his abdomen, by March 29th we would know they were in his lung's and bones. I would sit in front of a computer screen at 4:00 in the morning researching his disease. They all said the same thing... Fred would only live for a few months with his state of the disease. I read this alone and no doctor would talk to me. No one would tell us truth. On March 31st we celebrated Fred's 39th birthday party.

In April, we would celebrate Easter in Fred's Hospital room. We hid 48 eggs for Isaac and Freddie. Fred watched them find them. On April 19th Fred's oncologist would say he was sending us home on a PCA pump. Fred would tell me to go after them. We transfered to a new hospital. We spend three weeks there.

In May, we would leave the new hospital and go to rehab. This was Fred's last attempt to try to get better. He endured so much pain. He tried to sit while his spine was dissolving. My birthday was May 10. we had a hornet in the room. I ended up killing it. Freddie says it was one of the only good memories of Daddy's cancer care. By late May Fred was failing fast. We would decide to go to hospice. Murch and St. Paul's Lutheran Church would host a rummage sale for us. I would place the first mural.

In June, Fred would be in Hospice until we got into a new two bedroom apartment. W e moved on June 10th and Fred came home on June 11th. When Fred and I were engaged back in 1993, we had a engagement photo taken and had it put in a grand frame. Then we left it at our in-laws house until we had a place nice enough to hang the picture. For the first time it hung in our apartment on June 11th beside Fred's bed. Fred lived for 6 more days and died on June 17th.
There the year stopped. Everything thing that has happened since happened to some one else, because part of me died that day. On June 23rd I began 73 cents.

Since then I have never stopped thinking of Fred. I have never stopped fighting for the rights of people like Fred. We only had less than three month together after March 27th. It is hard enough to be dying. We should not have suffered so. No one should suffer so.

It has been a very hard year, but I am thankful. I am thankful for my two precious sons who look at me with Fred's Eyes. I am thankful for all the great people who came and helped us in our time of need.

I thank the BP station, Pumpernickels and The American City Dinner for the Walls they gave. I thank Christine Kraft who introduced me to Ted Eytan, Claudio, Susannah Fox, Cindy Throop and Epatient Dave. They have all been stalwart friends. I thank the reporters who came to the Mural and spread the word about how much we need medical records access. I want to thank all the families, students and Staff at Towsen, American University, CCBC, Ivymount and Murch Elementary who helped us so much. Thank you too to all the Folks in Western Maryland who fundraised for us. Thank you to St. Paul's Lutheran in DC and St. John's Lutheran in Accident. Thank you to my primary care Doctor and all the medical personnel who tried to help us.

I want to thank God. For in our darkest hour he stood beside us. The spirit of the Lord uplifted our soul. Never doubt there are miracles. We are living in the miracle.

This New Year's Eve I will open that can of Fosters that still is sits in our Fridge. I will toast Fred and 2010. i miss him. I love him. The world will never forget him. He was a good and kind man. He deserved better, as do we all.

3 comments:

  1. Thank you for sharing your family's difficult journey and inspiring us with your strength.

    Let 2010 be a year where we see the first fruits of the fight for better health care.

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  2. You are an inspiration to me.

    And thanks for posting a picture of your boys.

    We will continue moving forward.

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  3. What a beautiful picture of your boys. And what a beautiful soul you have, Regina.

    Blessings to you and those young ones. You are in my prayers.

    ReplyDelete