The miracle of organ donation

Tonya waited almost eight months for her lungs if I remember correctly. She was in the hospital longer than Suzanne was. I talked to Tonya more than I do Suzanne and so when I thought I was ready to go and see Tonya I thought I could handle what I was about to see. She was beautiful despite the tube she had in her throat. In fact she made that tube look good. Her cheeks had so much color in them. Her eyes so full of life. I was speechless. I started to choke up a little bit and she reached for my hand. I told her I was okay but in reality I wasn't. She knew that. I thought that I was going to lose another friend to CF and seeing her lying there with full color to her face was very overwhelming.

I had gone throughout my life thinking that birth was the miracle of life. Seeing Tonya and Suzanne changed my perspective. Organ donation is wonderful. It gives people a second chance. Wonderful people like Suzanne and Tonya. Organ donors and their families are my heroes. They give people a second chance at life.

The circle of life

I have noticed little signs when Jerid is getting sick and I will ask him if he needs to go in. Of course he'll tell me no and that he feels fine. I had to talk to him about doing that. I do not mind fighting CF. I do it willingly. It does get exhausting when you have to fight the CFer as well. Jerid knows that I know when he needs to go in but he still will try and put it off to see how long he can stay out. I understand that the hospital can be boring. I didn't like being in the hospital 2-3 days after having a baby and I could not imagine staying 10-14 days. I try to have plenty of things for him to do packed in his suitcase.

I count down the days that he would get out and hoped that he did not need a medicine change. They will change the antibiotics that the CF patient is on if the bacteria in a CF patients lungs is showing some resistance to the antibiotic.

We had talked about a lung transplant for him as well. He wants to do one. He is now a father and CF stats told him he would never have children. He had made a promise to the kidder doodles that he will be there on their wedding day. Jerid doesn't like to set goals or make plans because CF is unpredictable but he made that one promise to them and he has every intention on keeping it.

I got to make many new friends through Jerid and most have CF. It is amazing how they embrace life. They really did teach me to not take it for granted because there are no guarantees in life. I often chatted with one online and her name was Mary. She was wonderful! She helped me understand how Jerid would be so stubborn with not wanting to go into the hospital and would understand where I was coming from being a wife. Mary had set up a team for the Cystic Fibrosis Foundations Great Strides walk-a-thon. She named it Team Faith. Jerid and I signed up for it and I was excited to meet her face to face. A few weeks later she sent us an e-mail saying she could not walk and had to dissolve the team. The infection in her lungs was getting worse. She always kept a positive attitude that she was going to get better.

One night while I was a work I had gotten a text message from another friend to told me that Mary was passing away and they gave her maybe a few days. It broke my heart. I was at a loss for words and tried to hold back tears. I got up from my desk and called Jerid to see if he had heard the news. He had and got a hold of her mother who did confirm that she was not going to last till the weekend.  Broken hearted by  the news of losing my friend soon I still went back to my desk and worked but all the while I was watching the clock waiting impatiently for the time I could leave so I could go home and hold my husband. He was close to her. They went to CF camp together and shared many childhood memories which I loved to hear about. Her funeral was on a Friday and I could not make it. I did not have the time to get off work.

I had hoped things would have turned around for her. I had the honor to see what miracles organ donations do. Two other of my rockin' CF friends got a second chance at life. They finally got the long awaited phone call. They were getting new lungs. Suzanne and Tonya are two Cf patients and they are also very best of friends. Suzanne got her lungs first after being on the waiting list only about one month and she set a record of getting out the fastest after a lung transplant. That lady was super woman!

Our new life together

We would find things to do to plan the wedding. It really made the stay go by faster. At one point we actually got all the invitations stuffed and stamped. They were ready for the mail! WOOHOO!!! We had given the 2 East staff an invitation as well and they hung it up in their break room. I see it as they were Jerid’s other family and play a big part in his life.

Our wedding day came at last! I was so nervous. I had this insane thought in my head that I would walk out and Jerid would be gone. He would have changed his mind. I slipped a little bit down one step. I am not so graceful. As I gathered my cool from my little slip, I walked down the stairs and I saw him. He looked so handsome in is tuxedo.  The man I will spend the rest of my life with. I walked down the aisle arm in arm with my daddy and all I could see was Jerid. My soul mate. My handsome 65 roses.

Being a mother, as most mothers do, I have this "got to make them better" instinct. I get frustrated because I know I cannot make him better. I have this fear that I will wake up and he would be gone. His CF had taken him during the night. The thought haunts me daily and in my sleep. I could choose to let it consume be but then I would be wasting so many happy times with Jerid. That would not be fair to either of us or the children who have grown to love him.

I use to sit and think and at times I would get angry and sometimes I would cry. How could such a wonderful man have such an ugly disease? It doesn't seem fair but nothing in life is fair really. So instead of sitting around worrying about what's going to happen next with Jerid, I would sit and write. God knows that sitting around and making yourself a nervous wreck over something that you cannot fix or change is not good for ones wellbeing. These are just a few I have written when I sat down to write:

Blessed Curse

I had an idea from the articles I've read,

The thought of his last breath lingers my head.

Be by his side, cherish, honor and love.

I pray day after day to God above,

"I knew what I was up against when I said 'I DO!'

"Let us grow old hand in hand, us two!"

I know there's a chance this cannot be.

The very thought of it tears my heart from me.

So I sit here cursing damned Cystic Fibrosis,

And loving my husband, My handsome 65 Roses.

Life hope

A mother sits with a heavy heart

As her world starts to fall apart

She keeps vigil beside the crib

Knowing what lurks beneath her babes rib

She prays quietly with a heart full of sorrow

"Please God" she says, "just one more tomorrow"

She can't explain the pain or the hurt

She just sits and holds her life’s greatest work

Her babe has now grown to a man

There's someone new, he makes his life plan

He and his sweetheart will be wed

She will now stand vigil over his bed

A wife and a mother now share the same hope

They have each other to help them both cope

She'll hold his hand tight and make it through

She meant what she said when she promised "I do"

Bittersweet

An ugly disease and a beautiful man

To keep him healthy I'll do what I can

The first time we met he stole my heart

My goal, death and him, keep them apart

There's four he has now to tuck into bed

The son who couldn't wait for us to wed

Three daughters he promised to walk down the aisle

In the life I hope he has a long while

I know he and death will surely meet

In the end, sadly, will be bittersweet

Until then my sweetheart please do your best

When they find a cure is when I will rest

I'm with you my love cross my heart

I'm by your side, till death do us part

You're giving CF a really good fight

CF, I hope there's a cure in sight

Putting on the boxing gloves

During the car ride home the conversation we had wasn't exactly pleasant. I was upset that he wasn't taking care of himself like he should. I told him that I would not marry him if he was just going to let himself go and let CF take over. He had explained to me that he was use to doing it whenever he wanted and told me when he met me he was just waiting around to die. He had accepted his fate having CF. I wasn't about to accept that. Being married before I knew the wedding vows and till death do you part I was not going to allow that to happen within the first few years of our marriage, especially when something could be done to prevent that. I do know that CF is a very progressive and unpredictable disease but I was not about to just let him go off and let CF take him because he accepted his fate. He apologized and asked me to help him remember when to do his treatments and to take his pills. "You make me want to be a better man and take better care of myself. I just need a little help." Jerid told me. Okay I can do that with no problem.  I have a weekly pill holder set up for him on his desk where I put his pills so he doesn't forget to take them before he goes to bed. I also have all his nebulizer meds next to his computer so he can sit down and tinker around on the internet while he does his breathing treatments.

After seeing what Jerid was going through I really wanted to help the other CF patients. I signed up as a volunteer with the Cystic Fibrosis Foundation online at www.cff.org. They would send me e-mails on CF related bills that the senate and congress was looking at and so I would write to them expressing my support in CF research and hoping one day they will find a cure. I watched for those e-mails diligently and as I got them I would write my congressmen. I had received a letter from Senator Ron Bishop and I was excited to be written by a state official. Jerid read the letter and asked me why I wasn't more excited than I was. I looked at him and was trying to figure out what he was meaning. Then he said "Honey he says in this letter that he is recognizing you as a CF advocate. This is an honor." Okay now for those who know me know I had to think about this news for a second. It was a lot to take in.

His first hospital visit I did not know what to expect. I have 4 children and I worked so I couldn’t be up there the whole time. I am a mother first but I would go up a few times during his two week stay. I wanted to make sure he was okay. His nurses at the University of Utah hospital on 2 East are the best but I would still worry.

Ringing in the New Year

I had talked to my mom about Jerid and his CF and she always told me she loved me and to be careful because she did not want to see me hurt again. She knew what CF was and what it could do. Although she did like Jerid she was still very leery about me being involved with a man whose life expectancy was half of what mine was. My mom talked to one of her friends about it and her friend told her it was nothing to worry about because they are making leaps and bounds in CF care and research and plus Jerid was really really cute! I could have gotten mad at my mother but I understand where she is coming from. She was being a good mother.

On New Year’s Eve Jerid and I had decided to go out and celebrate the ending of a year and the beginning of another with our friends. It was my ex husbands holiday with our children so I said why not! I always enjoyed the company of my good friends and most of them were going to be there that night. It turned midnight and the New Year had begun. Everyone was dancing and singing along with the band, who I am very good friends with. Definitely a great way to start a new year. I sat down and started to talk to one of my good friends and then I hear my name. I didn't think much of it because it was a crowded place and there is more than one Rachel in the world, but as I listened, I noticed it was Jerid’s voice and my name coming from the speakers. I turned towards the stage and there was Jerid with the microphone in hand. He was giving me the gesture to come up on stage. Mike was standing just off to the side of Jerid with a big grin on his face holding his bass guitar. I knew right then what was happening and I'll never forget that moment. I was shaking. I walked up on stage and looked in Jerid’s eyes. Jerid got down on one knee and said “I want this to be the first day of the rest of our lives together. Will you please marry me?" The whole world stood still and all I could hear and see was Jerid. Just him and I. I was oblivious to the shouts and screams that went on after I said yes. I had found my perfect man. People came up that we didn't know and shook our hands or gave us a hug, and expressed their congratulations. For a brief moment I remembered when I told Jerid I was never getting married again. Then a calm came over me and I knew that it was right. Intuition? Maybe, divine intervention? I would say yes for sure on that one. I had asked him what made him change his mind about marriage and how was I so different from his past girlfriends. He couldn't explain it to me. He says he just knew I was the one and I was the only one who took interest in his healthcare.

I called my parents to ask them what they were doing during a certain month. My mom’s reply was, "Coming to your wedding?" After I told her yes I hear my dad in the back ground "He didn't ask me first." My father is old fashioned and believes that the man should get permission from the father first. So I handed Jerid the phone and told him "It's my dad and he wants to talk to you." He smiled and took the phone. I do not know what he and my dad talked about. That conversation was between Jerid and my dad, but I am pretty sure it was my dad making sure that Jerid was the good man I had told them about. That was fine with me of course. I do have wonderful parents.

I would read about CF in bits and pieces. I didn’t want to take too much in. I had a hard enough time with the small bits I had read. Some of the things I had read were the brutal truth and there was no sugar coating on Cystic Fibrosis at all, while others focused on the 65 Roses part of CF. The rose is a beautiful flower. It has many different colors and the petals are many different shapes and sizes but the rose also has thorns. I thought the rose was the perfect flower to represent CF because along with the beauty of the rose it also had thorns. Although I did find comfort in the sugar coated CF stuff, I knew that I needed to know the reality of CF and what it is capable of doing to someone. I wanted to know exactly what I was fighting against.

I started to go with Jerid to his doctor’s appointments. I got to see what Pulmonary Function Tests (PFTs) were and I tried to find the humor in him blowing as hard as he could into this funny looking machine. I told him to blow as hard as he could but don't leave skid marks afterwards because I did his laundry. He just laughed and shook his head at me and told me he loved me. The first doctor appointment I went to with him was very interesting. I had learned that he was supposed to be using his Vest machine while he was doing his nebulizer treatments. I told on him to his doctor because he had not been doing it. It was very frustrating to me because here we were engaged and making wedding plans and he wasn't doing everything he was suppose to be doing. I got his medication list from his doctor so I knew everything that he was suppose to be taking and how often. I do not mind fighting CF. I will do it until I am no longer here but I cannot fight both CF and Jerid. I knew doing both would be exhausting.

Inside my walls

Well the time came when I had to leave my home. It was not a very good day. I was surprised to see who the first person was who jumped to help me. Jerid. Right there asking me what he could do to help me. WOW! That really stood out to me. It caught me off guard actually and I did question his intentions. "There could not be any possibility that he was just there to help me. What does he want?" I thought to myself. He helped me get my things and never complained once. It was like he was happy to be helping me.

Now that I was no longer living in the same home as my soon-to-be-ex husband, Jerid wanted to take me out on a date. I can hear the gasping and judgments now. "You're not divorced and you are already dating!"  Yes I know that. I was there. I have not spilled the details for my divorce because that is personal between my first husband and me. I hope people will respect that. Anyways, when we had our first date I told him "Just so you know I'm never going to get married again." Jerid smiled and said "It's okay because I never want to get married." It was a relief to get that off my chest and out of the way but yet I was shocked because I thought that would scare him away.

Before I knew it we were officially dating. "Whoa what happened here?" I thought to myself. I only wanted to be friends with this man but there was something about him that caught my eye. I did not know what it was and curiosity got the best of me so I went along with it. I really did like Jerid. He was a great guy and he seemed to have a special interest in me that no one has ever had before. He paid attention to me more than I realized. During the early start to our relationship he would want to know what was on my mind. Well I'm stubborn and didn't want to tell him what was on my mind. I was happy within my walls where I knew I was not going to get hurt by anyone. It was safe for me, lonely but safe. At this time I was trying to figure out what went wrong in my last marriage and blaming myself for everything that had happened even though when my ex and I talked we did not blame each other for the dissolve of our marriage. We still blamed ourselves. Jerid knew what I was thinking about. He just wanted me to feel comfortable enough to go to him about it. He waited patiently until I was.

I had noticed that Jerid would always wink at me. It was a sweet gesture and I loved it when he did that. Well one day I was cleaning chicken and for some reason a movie was running through my mind about a farm boy and a maiden. The farm boy would say "As you wish" after the maiden would have him do something for her. Then it dawned on me what those winks meant. They meant I love you. After that epiphany I decided to ask Jerid himself what he was meaning by that. I needed to know. We were talking and he asked me what I thought he meant by it. I told him "I am not going to say it first". I refused. Have I mentioned that I'm a Leo? Stubborn and hard headed. Yep that is me at times and it doesn’t help that I'm a woman either. Anyways, after about half an hour I told him I will not say it first because I was not going to say something that would not get returned. He just smiled at me, kissed my forehead and told me it was okay to tell him how I felt. It took me a few tries because I was scared of the reaction I was going to get from him. So trusting him a little bit I closed my eyes, took a big breath and looked him in the eyes and said the three little words I swore I would never say first. I love you.

They say that the eyes are the window to the soul and I seen things, beautiful things that day when I looked deep into his eyes. I cannot describe them. All I can say is I felt safe and knew he would not hurt me and would keep me protected. More protected than the walls I built for myself and I didn't have to be lonely anymore.

My new friend

It was towards the end of August 2006 when Jason called and told me he and Jerid we're heading up to Idaho to pick up Jerid's new car. I told him to have a safe trip and asked him to bring me back a lottery ticket and I would give him the dollar when he gets back.

Midnight rolls around and I hear a car pull up outside my house so I looked outside and seen this really nice car with Jason getting out of the passenger seat. I walked outside to talk to talk to him with my dollar in hand and I noticed someone else getting out of the car. The driver’s side in fact and I didn't want to get too close. I'm actually very shy believe it or not and do not like meeting new people cause of it. Jason turns to him and said "Jerid this is Rachel. Rachel this is Jerid." Nice to meet yous were exchanged and there was the awkwardness back again. I hid in the dark of the night avoiding any possible light from the street lamp. It had been a long and hard day between work and trying to keep things at peace at home. I do have to admit I was trying to see the face that I talked to on the phone once and the name I heard about so many times. It is nice to put the name and face together so you can visualize who someone is talking about.

After that meeting Jerid had started coming out to the school to hang out with Jason. I would see him a lot because Jason and I would hang out together. Jerid was a nice guy with a great personality, dark brown hair with eyes to match and he was very tall. Well I'm only 5'2" so anyone taller than I am I consider to be tall. Jerid had a knack for making people laugh. I thought he would be bitter and stand offish because of his disease but I was so wrong about that. Very wrong.

Jason told me that Jerid was interested in dating me. I thought to myself, "Oh great! That is the last thing I need with the divorce going on." So I kept that on the down low. I didn't need that going around and spinning into a rumor. It gave me a headache just thinking about it. I told Jason I was never going to get married again. I was done with the whole relationship stuff. It'll just be me and my kids. They complete me and they are all I need but if Jerid wanted to be friends that would be great. God knows I needed them, especially at that time!

I can't lie here, I had found Jerid to be a very handsome man and his personality was different from anyone I had ever met. We had talked online and through text messaging getting to know each other and building friendship. That was all I wanted. He had other plans though and waited patiently until the time was right.