sunflowery's Diaryland Diary


Still Waiting For News on the Van

Still waiting to hear from the van people. They called early this morning to say we accidentally took the trade in quote with us and they needed it back before they could make us an offer. So at lunch I went home and got it and faxed it back to them. I should hear from them by the end of the day. It looks good, but you never know. If they come up with something more than they quoted us when we were there, we may have to figure something else out. What they quoted was more than we are still paying on my car right now. I only owe on it for 2 more years. It was only about $50 more, but that's about all we can go. We still owe on Supe's truck too...I think for one more year. But we would skrimp to get the van. It would be totally worth it. So, we'll see.

Had a good weekend, though I feel like crap. I think the headache from last week was a precursor to the head and chest cold from Hell. I started feeling crappy Friday night into Saturday morning and it just kept getting worse. I slept OK last night though, so I think I'll be fine. The thing I really hate about colds is the stunning lack of sleep one incurs even though one might be tired enough to fall asleep at the wheel while driving the 4.1 miles home from work. I also hope I feel better by Friday when I happen to leave to go visit my old home town. This isn't the first cold I've had this season, but it is the first to make the trip to my chest. Whenever I cough, it feels like my lungs are bruised. Blech. So I loaded up on Dayquill and Halls and made it to work this morning.

Not much else to report so what I'm going to do is print out a copy of the letter I sent to Oprah nominating my husband as the most romantic man in the world. Apparently she didn't agree because no one called us. Still, Supe is the most romantic man I've ever's why:

Dear Oprah, Monday, January 05, 2004

My name is Sunflowery and I am writing to tell you that you can call off the search for America’s most romantic man. I have found him…and I married him! His name is Super Husband…Supe for short, and he has been my husband for 2 ½ years.

To tell you about how romantic he is, I will have to share our story with you. We met through an online ad I placed at I placed the ad in February of 2000 and Supe answered it in August of 2000. He told his sister (who he was living with at the time) that he was going to look for a wife and that he would know who she was when he saw her ad. He said he must have looked at over 200 ads and none of them was right for him. His sister told him to stop being so fussy and just answer one already. He told her he would not answer an ad until he found the right one. He finally found my ad and knew by what I wrote that I was THE ONE. When he tried to respond, he found he had to pay a membership fee of $100. He paid the fee, answered my ad and only my ad and the rest, as they say, is history. He still says it is the best $100 he has ever spent.

I knew Supe was the one for me on our first date. He brought me flowers, which is always nice since I LOVE fresh cut flowers. However, near the end of the date, as we were sitting and talking, I began to absently rub my thumb on his hand. Before I knew what I was doing, Supe took my hand and deliberately turned it over in his and began to rub my hand the same way I had been rubbing his. When I asked him what he was doing, he said he just wanted me to know how good it felt.

Before I met Supe, I told God that I wanted to marry a man who would be captivated by me. I had dated many men who wanted what I had to give, but who were not willing to give back, or they didn’t really care about me at all. I never told Supe about my prayer. That was between God and me only. One night Supe and I were sitting on the sofa, talking about our childhood backgrounds and dreaming about our future, when all of a sudden, Supe says, “Sunflowery, you captivate me.”! I must have had quite the look on my face because he asked me why I looked so shocked. I told him I could not believe he said that and told him about my prayer. He said he had been looking for the exact right phrase to tell me how he was feeling and that just popped into his head.

Throughout the months we dated, Supe wrote me poetry, bought me cards and flowers and expressed his love and appreciation through many little gifts and surprises. The day he asked me to marry him, he surprised me with flowers and a ring. I thought it was just a normal date night. A night when he was to come over, share pizza with me and my roommate and just hang out and watch movies. He came up to the apartment and ate pizza but then insisted we go to the lounge of the apartment building to talk. We often went there when my roommate and her daughter were home, but this night, my roommate was taking a nap in her room, so there was no need. After talking me into going to the lounge, he pulled a beautiful bouquet of roses from behind the fireplace and while I was admiring them, he got down on one knee and proposed. It was breath taking.

On our first Valentine’s Day together as an engaged couple, we were actually going to be apart. I had to fly to Portland for business and would be gone that whole week. I kept giving hints about how no one had ever sent me roses for Valentine’s Day before, hoping he would send them to me at the hotel. The day before I left, he presented me with what he told me was my V-day gift. It was something he picked up at the gas station where he worked. It was a cheaply made knick-knack of two bears on a swing. I did not know what to think. I left for Portland wondering if maybe Supe was some kind of gift idiot. I need not have feared. After spending the whole day of the 14th at a trade show, I got back to my hotel room late that night and found a HUGE arrangement of deep red roses waiting for me in my room. I called Supe right away and he said he had arranged it with the hotel concierge as soon as he knew where I would be staying. He said he had to play it cool for so long, he was afraid of giving something away. It was the best surprise.

We got married 364 days from the day we met. It was a beautiful service. Supe had had some knee surgeries and had a slight curvature of the spine we though contributed to the fatigue and weakness he felt standing that day. After standing for almost and hour during the ceremony, he needed help walking down the steps of the alter at church. Nevertheless, he seemed fine after that.

We had an idyllic honeymoon and the first 6 months of our marriage were newly wed heaven. Everyone told us the first year would be the hardest and if that is the case, the rest of our marriage would be the easiest marriage ever because despite some initial challenges, we got along just fine. Around Christmas, I began to notice Supe was having trouble climbing stairs. Members of his family grew concerned at his pallor and overall physical health. I began to “encourage” him to see a doctor. I even went as far to set up the initial appointment for him. In February of 2002, Supe finally went to see a doctor.

Right away, the doctor noticed Supe’s difficulty in walking and standing. His initial diagnosis was that Supe had a neuro-muscular disorder. He sent Supe to a neurologist who, after many, many tests, confirmed the diagnosis. Supe was diagnosed with Facioscapulohumeral Muscular Dystrophy. Facioscapulohumeral muscular dystrophy (FSHD) is a genetic muscle disorder in which the muscles of the face, shoulder blades and upper arms are among the most severely affected. This explains Supe’s difficulty in standing at our wedding, amongst other things. We found out that it is a genetic condition and that he has had this his whole life…probably since puberty. Supe finally had some answers to questions he had struggled with all of his life, but this diagnosis was a huge blow to us.

We wondered what this meant for our dream to be parents. How fast would the degeneration progress? Would I end up caring for Supe or needing nursing care for him? We still do not know the answer to these and many other questions and our lives changed overnight. One thing that never did change was Supe’s love, romantic attitude towards me or our passion to be parents.

One week after Supe’s diagnosis, his best friend Jim had a stroke and was paralyzed from the mouth down. He was hospitalized for a time but has since been moved into a nursing home. Three months after Supe’s diagnosis, he was fired from his job because his employers did not want to be held liable for any injuries he might incur should he fall at work. Four months after that, we moved into a handicapped accessible apartment. Three months later, we declared bankruptcy. Almost a year later, we found out the State Department of Human Rights found in favor of Supe’s employers, saying they could not make reasonable accommodations for him in his position there. Finally, this past October, Supe’s doctors prescribed an electric wheelchair for him as his degeneration progressed much faster than they first thought possible.

Through all of this adversity, Supe had been kind, caring, loving and romantic. He calls me his Princess and he writes me poetry, sends me cards and flowers when we can afford it. He does the laundry and makes dinner since I now bear the business end of the work schedule to keep us afloat financially. (And laundry is his most hated of all household chores!) He writes love notes and leaves them in my lunch. He writes messages in the shower steam on the bathroom mirror. He bought me two cats to fill a small part of me that longs for children. And last Christmas he saved and saved to be able to afford to buy me a digital camera because he knows my love of photography.

He is the best man I have ever known. He loves me like I have never been loved before and he amazes me at his goodness, kindness and gentleness. At night, he will come in the bedroom and rub my back so I fall asleep more easily. He will play with my hair just because I like it. The first time his birthday came around in our married life, I made reservations to one of our favorite restaurants. When we got there, our waiter presented me with a bouquet of flowers my husband had driven over himself while I was at work. He gave ME flowers on HIS birthday because he wanted to thank me for loving him through all of this.

We do not know what the future will bring us. We are looking into adoption as we have a heart for kids without homes or parents. In addition, since Supe’s condition is genetic, we do not necessarily want to pass it along to another generation. We would also like to own a house one day, but with Supe’s physical needs, we would need to make any home we buy accessible and that is a huge cost consideration. Our finances have been drastically reduced with the loss of Supe’s job and the increase in his medical needs. He is attending ministry training school with the hopes that one day he can resume contributing financially to our household. We are saving to buy a handicapped accessible minivan so Supe can be independent. He goes to the nursing home to visit his friend Jim as often as he can schedule a ride with our local Metro Mobility. He has made many friends there and would like to be able to see them more often. We make due with what we have for now, in hopes of something better in the future. What we do know is that romance is not expensive. We do not always have money for flowers and cards, but Supe is creative and is learning to be more so as we experience financial difficulty from time to time.

No matter Supe’s physical challenges and the changes that have come to our lives since his initial diagnosis, we know we are together ‘til the end. He is not only committed to our marriage, but to me, and he shows me that every day in big and small ways. I lack no good thing since marrying the most romantic man in America. Thank you for letting me share our story.



P.S. We saw your special in Africa and we have to say that it deeply touched our hearts. We would adopt all of those children if it were at all possible. Both Supe and I cried over the losses those kids have endured and survived. What an amazing story of courage and hope. Thank you for all you are doing for those little ones.

2:22 p.m. - Monday, Feb. 16, 2004


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