SWDESERTLOVER   58,133
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SWDESERTLOVER's Recent Blog Entries

One Day at a Time

Saturday, September 12, 2009

The good news for the weekend is that Tommy's doctors allowed me to bring him home for a few days. But only after much lecturing and me promising to administer all of his meds over the weekend and keep him on a clear liquid diet Sunday. He had told them he just wanted to come home and sleep in his own bed a few days.

It's now 6:25 a.m., but I've been up since 4:45 a.m. Just couldn't sleep; too many thoughts swirling through my head. I finally got up because I didn't want to wake Tommy. For the first time in a couple days, he appeared to be sleeping soundly. I'm glad because I spent the night before with him at the hospital and he was up and down all night long.

I know he's happy to be here, but at the same time, without all the distractions that come with being in a hospital, he has more quiet time to reflect on his situation. There were a few tough moments last night, but we got through them with tears and hugs. There will be many more. We both admitted that we are scared to death. He is afraid because he is facing his own mortality and upset because he wants to see his grandchildren grow up. I supposed I'm a little more selfish; I'm terrified at the possibility of not having him in my life. I know we will all have to face our own mortality someday, but I'm just not ready to give him up at this age. That's why I will not give up on my husband and I will continue to fight this thing as long as he is with us.

I'm hoping today will be a good day for him. My son's best friend, Will, is married to the great-niece of Benny Parsons (for those who don't follow racing, he was a famous Nascar race driver and later announcer). Benny Parsons' home is about a 90 minute drive from our house. Tommy loves Nascar racing, so Will is planning on taking us to see Benny Parsons' museum and some behind the scenes stuff that visitors don't normally get to see. We're supposed to go up at noon today and Tommy seems excited about that. Maybe this will allow him to get his mind off things, even if just for a while, and enjoy his weekend.

I don't know what will happen on Monday when he has surgery, but from this point forward we will take things one day at a time and make the most of every day.

I thank all of you so much for the support you've shown in your kind comments and the private messages I've received. It truly means so much to know others are praying for us. It also helps me a lot just to be able to write all these feelings down. Thank you all so very much.

  
  Member Comments About This Blog Post:

CJROMB 9/15/2009 5:56PM

    We're here for you. A few weeks ago when I was struggling so hard with what's happening to my Dad, SparkPeople was a lifeline for me. It was a place to talk this through, get it out, it's safe, there's caring, hugs, comfort, tears, warmth, love. It was NEVER something I even considered when I signed up for those trackers 2 years ago, but it's been one of the best surprises I've ever had. It will be the same for you as you deal with what's happening.

You're right, we do have to face our mortality. I've done that a lot in this past month, in a way I've never done before, and frankly, I prefer being in denial myself. My husband and I have been having some trouble lately. We work together PLUS we live together PLUS we do everything together PLUS we're really different. We were discussing, before that trip, some serious changes in the relationship and in the business structure. Monumental. But then? All the stuff with my Dad happened. And the two of us looked at each other and thought "Huh? What were we THINKING?"

And we tabled the whole idea of pushing back from each other in any kind of way.

It's times like this that we realize how much those precious people in our lives mean to us. Of course we always know it, but sometimes the spotlight gets shifted off that to other things.

I ache for you that you've had to face that more than once recently. I hope with all my heart you'll both get through this just fine. Of course there's nothing I can do really to help, other than give you a hug in my heart and make sure you know we all really DO care.

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NASCAR_CHICK 9/13/2009 4:04PM

    My thoughts & prayers are w/ both of you... and I'll definitely be thinking of you on Monday! Be sure to take care of yourself through all of us... I'm sure that you are putting your husband first right now, but you must remember that you be no good to him if you let yourself get rundown!

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SALEE100 9/13/2009 3:51PM

    I just wanted to let you know that I'm thinking about you. Have a great day!

Susan

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18GH30 9/12/2009 8:38PM

    I don't know you or anything about your situation, but I can feel the pain in your writing. Good luck - my thoughts and prayers are with you.

Holly

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RAVON27 9/12/2009 9:11AM

    Ditto on the taking care of yourself! I'm so glad that the doctors let you take him home. Nowadays hospitals are just thinking about how to fix people with medicine. It's about time they realized all the healthy benefits of being with family and in your own home. Have a great weekend!

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LIZZYP609 9/12/2009 9:07AM

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LEEPFROG95 9/12/2009 8:33AM

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thoughts and prayers for you and your family.....Make sure in taking care of you hubby you take care of yourself so you are strong enough for the both of you ....the race stuff sounds so cool and maybe just the little break you all need ....enjoy the day.. and the fun memories take tons of pictures....it is a chance to have a great day.... emoticon emoticon emoticon emoticon emoticon

Comment edited on: 9/12/2009 8:34:08 AM

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The Journey Ahead

Friday, September 11, 2009

All my life I've tried to be a very positive person, and I'm still trying now, but it seems that these days every time I write something in my blog it's negative.

I'm astonished at how my life has changed over the last year. This time last year, Tommy and I were doing well, living a comfortable life, and making lots of plans for the future. One year later, our entire world is turned upside down.

In May I lost my paralegal job when the law office where I had worked for over 15 years closed permanently. Tommy told me not to worry, that even though the job market in our area is very bleak, we would be fine and get through it together. I'm still looking for a job.

He encouraged me to go ahead and go on my hiking trip in Arizona that I had been planning. I did so and had a fantastic time.

In July we learned that Tommy's employer is shutting down and his job would be ending in October. Now he began to worry, but I tried to encourage him that no matter what happened, we still had each other and our health and we would get through all this together.

The news of little Maddie's death last week was very hard to swallow, but again, we pray and continue to move forward.

Yesterday, after a short two weeks of what we thought were some minor medical issues for Tommy, he was diagnosed with pancreatic cancer. He is scheduled for surgery on Monday morning, but his doctors are not very hopeful for a good outcome. They said his cancer appears to be advanced and they don't know what they will find in surgery. The best case scenario they've given him is that if the surgery is successful, he may live 3 or 4 years, but they said realistically most people have 6 to 12 months.

I am numb as I sit in my husband's hospital room today trying to be strong for him. At the same time, my sister is preparing to bury her granddaughter today while calling me and trying to support us. It's just mind boggling that our lives one year ago were so different from today.

I am trying so hard to be strong for my husband, but he is the one who is being so incredibly strong through all of this. I can no longer say that at least we have our health. All I can say now is that we will take things one day at a time and get through this together.

I sit here today, a day that already holds so much sadness for our nation, and think about all that has changed in our lives over the past year, and I wonder what the next year will bring. I wonder if I am strong enough to handle this, and then I look at my husband, my best friend, and see how strong he is and know that I am so fortunate to have him in my life. With the help of God, family and friends, we will walk down this path together.

Thanks to my Spark friends for being so supportive during these rough spots in the road. Please go and be with your loved ones and enjoy every day that you wake up healthy. We never know how long we have on this earth or what tomorrow will bring.

  
  Member Comments About This Blog Post:

ELLENEAL 12/22/2011 10:17AM

    6-12 months... you wrote this over 2 years ago. I'm thankful for all this time you've got to spend together :)

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VEEJAY3 9/11/2009 10:45PM

    I am feeling a shock just reading about your year of troubles. And now, the biggest yet. It sounds like both you and your husband are facing this with such wisdom; I always try to remind myself that -- though we make plans and feel as if we have a guaranteed future -- none of us is assured of tomorrow.

I will think of you and add you to my prayers. May God hold you in the palm of His hand right now, and wrap you in love.

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GFNOMAD 9/11/2009 9:01PM

    Cindy, I am truly sorry to hear this. You have encoutered so much in the last year. Just know we are here for you.
This is where you can let it out. Feel free to vent.
Only yesterday I was watching a Doctors episode where they spoke about Pancreatic Cancer. It is hard to diagnose early because the symptoms are so general until the tumor starts pressing on a nerve or something that will cause pain. I doubt if this information helps, just my simple attempt to understand. My best wishes and prayers to you and all of your family. emoticon emoticon Barb

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LAB-LOVER 9/11/2009 8:36PM

    I just want you to know that I am thinking of you at this difficult time. I cannot imagine what you are going through but know that you will find the strength you need to support your hubby. Hugs and love,
-LL

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ALEXSGIRL1 9/11/2009 7:21PM

    you are dealing with a very tough load.but know you are not alone we are here for you to talk to and let your feelings out.you are strong and courageous. i have seen nothing in your blog that makes me think negative.you seem very positive.i am praying for you as you and your husband go through this horribly hard time picture angels around you holding your hands and giving you strength. e-mail me or blog me whenever you want. emoticon

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FLUFFYGIRL213 9/11/2009 3:16PM

    There is nothing like the power of prayer and having faith. I will keep you and your husband in my prayers. I know God will bring you through this.
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MONICATJ 9/11/2009 12:02PM

    I'm so sorry you and your family are going through such tough times. You are in my thoughts and prayers. May God bless you and give you the strength and peace you need.
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KROCK8 9/11/2009 11:30AM

    Many prayers for you and your family at such a time as this. May the sun shine warmly upon you and provide you with a small measure of comfort, if just for a moment.

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HEALTHY_CAROLYN 9/11/2009 11:22AM

    When my mom died almost three years ago, it was so sudden. One morning, she was having all kinds of pain, so we took her to the emergency room. We spent all day with her there, my brothers and I, talking and joking around, waiting for them to find out what was wrong, for certainly they'd find what was wrong and fix it. By that night, she was gone. We didn't know at the time that her body was shutting down from an infection she didn't know she had. Just like that, life changes. In one day. It doesn't seem right. It definitely doesn't feel right. I sometimes feel bad about the messing around we were doing that day, but she wasn't the type of person who would have wanted a parade of people to come by, weeping to say goodbye. She was a mom, so she would have wanted her kids there with her and to see our happy faces. When two of us left the hospital late that night, when it looked like things had taken a turn for the better, we got to say goodbye and kiss and hug, not realizing it would be the last time we shared that with her. So, from then, I learned that we do need to take the joy out of life that we can and love deeply the people we care about, letting them know how important they are to us. None of us knows what a difference even a day can make.

All of us who've experienced the unfairness of death of a person we treasure can feel some of the pain you're going through, Cindy. We're there with you, holding your hand and putting our arms around you, knowing there's nothing we can do to help the feelings you're going through, except to know that you have every right to them. I'm sure your wonderful husband is still trying to take care of you, be strong for you, even while he's dealing with his own thoughts and feelings. Just remember to let him do that for you. In the uncertainty, he needs to keep doing something that hasn't changed, loving you.

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THECITYMOUSE 9/11/2009 10:49AM

    I won't go into tedious babbling detail all over your blog comments about my recent experience with the c monster....but be assured that...your blog doesn't have to be positive and chipper and all that rubbish...it provides a great catharsis and at times like these, you need to unload.

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If you haven't already, you will surprise yourself with your strength, petal. Promise.

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RAVON27 9/11/2009 10:32AM

    OMG! My thoughts and prayers are with you. I just don't know what to say! It's mind boggling why someone would have to go through so much sadness! I am glad that you can find some solice in blogging about all that has happened and is happening to you and your family. Please keep writing so we can be there for you emoticon

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CJROMB 9/11/2009 10:16AM

    omg, I am so sorry you're going through this. I'm in tears reading this. If there is anything I can do to help you, please let me know what that is. You've already been on my mind, thinking about Maddie. Now this. I'm glad you feel our warmth towards you on here on SparkPeople, but if there's anything besides just showing up here that I can do for you, please let me know. Tons of hugs sweetie.

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A Life Too Short

Sunday, September 06, 2009

No parent should ever have to bury a child. Yet that’s what my wonderful niece Stephanie and her husband Jimmy are now facing. At only 20 months of age, baby Maddie lost her battle against Leigh’s Disease today. She was born on December 31, 2007, but very early in her life Leigh’s began to take its toll on her tiny body. She always had a smile on her face and was a fighter to the end. Unfortunately, this cruel disease was too tough an opponent for such a small child.

Maddie had been placed back on a ventilator on Friday before slipping back into unconsciousness. After talking to her doctors and her neurologist, Maddie’s parents had to face the harsh reality that their little baby girl was not going to improve and that the end was near. They made the heartbreaking decision to remove her ventilator today. Being the loving parents they were, they did not want Maddie’s last moments to be inside of a hospital room. Maddie had always loved to play outside in the park, so they took baby Maddie into their arms and carried her outside into the hospital play yard filled with flowers and sunshine. There they held and hugged their sweet angel until her soul slipped peacefully from their hands and into the hands of God.

Maddie’s life was much too short, but she was a blessing to her parents and everyone around her. She will be greatly missed, but the memory of her smile will warm us forever.

Thank you all for your thoughts and prayers during Maddie’s struggle. I hope you’ll continue to pray for a cure for this disease as so many other children are fighting this same battle.

  
  Member Comments About This Blog Post:

HEALTHY4ME 9/9/2009 4:30PM

    Oh wow I am so sorry but there is nothing I can add to make anyone feel better. I know that memories will help eventually but it is so sad when a child dies. I must plead ignorance to this disease so have googled and it is terrbile what your family has endured.
I will be thinking of that sweet little smile who had the same birthday as I did and was here way too short a time.
HUGS to all.

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BONNIEBEE 9/9/2009 12:35PM

    My prayers and sympathy are with you and your family.
What a precious smile to remember!

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SPIRITRUN 9/8/2009 9:22PM

    Our thoughts are with you and your family through this difficult time.
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GFNOMAD 9/8/2009 9:14PM

    I'm so sorry to hear of the loss of Maddie. emoticon My condolances to you and all of your family. It is obvious from the photo that she was a beautiful, joyful child.
Hugs to all of you.

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LEEPFROG95 9/8/2009 8:38PM

    emoticonfor your loss
thoughts and prayers for you and your family...
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CJROMB 9/6/2009 6:15PM

    Oh, sweetie, I'm so sorry. There's not a single thing I can say to make this one bit better. But please know that I care and am thinking of you, her and her parents.

Please take care. I know the next few weeks will be difficult.

Huge heart hugs all the way from here.

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Life Isn't Always Fair

Friday, September 04, 2009

The last few months have been very tough on my sister and her family. My niece (Stephanie) has a baby girl named Maddie. At only 17 months old, she was diagnosed in June as having Leigh's Disease, which is a metabolic disorder. Without going into all the specifics, there is no cure for this disease and children diagnosed with it rarely live more than 2 to 3 years after diagnosis.

Unfortunately, it appears that Maddie's disease is progressing very rapidly. Maddie was admitted to the hospital three days ago with breathing problems and initially diagnosed with pneumonia. She was placed on a ventilator and is now in the hospital in the PICU where they have been running tests on her for several days. They were able to wean her off the ventilator yesterday, but her condition appears to be deteriorating as the breathing problems return. Further tests today showed that her current problems are a direct result of the Leigh's Disease.

The family is devastated while their 20 month old baby is fighting for her life. I don't know if Maddie will improve enough to ever go home again; only time will tell. I don't understand why this innocent baby has to go through something so horrible. It's a tough reminder that life isn't always fair. But, I have to remind myself that this is in God's hands and that if it is her time to go, I pray he lets her go peacefully and that my niece and her husband, my sister, and the rest of the family can also find some peace knowing she's in better hands.

Please pray for our baby girl and her family.

  
  Member Comments About This Blog Post:

PINODIVITA 9/5/2009 12:44PM

    My thoughts and prayers are with you at this time.

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SWDESERTLOVER 9/5/2009 8:43AM

    Thank you all so very much. Your support is more appreciated than you will ever know.

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HEALTHY_CAROLYN 9/5/2009 1:00AM

    Oh, this is such sad news. It's always so difficult to go through anything involving a child, but to know that there is definitely no hope of recovery is too painful for words. From a distance, know that there is one more person who is holding your family and sweet Maddie in her heart and thoughts. emoticon emoticon

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CJROMB 9/5/2009 12:07AM

    I'm so sorry. That must be incredibly difficult. You know, it's terrible when our parents age and fade away, but it's really painful in a way that doesn't make sense when it's an innocent baby like that.

You and your loved ones are in my thoughts and heart.

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GFNOMAD 9/4/2009 11:56PM

    What a heartbreaking thing to endure. May she get better enough that all the family is able to enjoy as many beautiful days ahead as possible.

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RONDARC 9/4/2009 7:27PM

    Maddie & her family are in my thoughts & prayers.
Hugs,
Ronda

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PBGWILLIAMS 9/4/2009 5:08PM

    Maddie and the rest of the family are in our prayers. God Bless all of you, and know you are not alone.

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WINDY_LEE 9/4/2009 4:05PM

    Praying for this family and the little girl. God Bless

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LIZZYP609 9/4/2009 4:04PM

    i will start my prayer chain! My good friend lost a girl at 8 months old to SMA - As i read abut the vent and not living past 2-3 years it so reminded me of her.

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GIRL*IN*MOTION 9/4/2009 3:17PM

    I am too praying for Maddie and her family! So sad, this made me cry. Their lives are truly blessed to have such a beautiful little girl in it, even if it for a short time. emoticon

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RAVON27 9/4/2009 3:02PM

    My thoughts are with you and your family. She is so cute! I myself wonder why such horrible things have to happen to children.

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COOP9002 9/4/2009 3:02PM

    I will keep Maddie in my prayers. Keep us posted.

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Back on Track

Tuesday, August 25, 2009

For the last several months, I’ve been on a roller coaster of emotions. During that time I’ve “fallen off the wagon” in my eating and exercise and now it’s time to get back on track.

The law office I have worked at for the last 15 years permanently closed it’s doors at the end of May and I found myself out of work. I considered canceling my backpacking trip to Havasu Falls in June, but was relieved when a friend called and said he had talked to the owner of the company where he worked and they wanted me to come to work for them in July. With my spirits up, I headed out with my best friend to Arizona and Utah for our two weeks of backpacking and hiking. It was a great trip.

Unfortunately, when July came around, the owner of the company where I was to start working decided he didn’t want to hire anyone new with the economy like it is right now. Suddenly I found myself out of work with no prospects. I immediately started putting my resume out and applying for jobs, but the job situation in our area is very bleak with most companies laying off workers and very few hiring. I soon found myself sitting at home and growing more and more depressed by the day. I began to exercise less and eat more and the pounds started coming back on. When I thought things couldn’t get any worse, we got the news that my husband’s company where he’s worked for more than 30 years is closing their location here and he will be out of a job in October.

We have both spent way too much time worrying about all of this. While I still don’t have a job, I am ready to stop the downward spiral and get back up, dust off and try to welcome the opportunity to change our lives for the better. We’re now exploring other possibilities for the future and fully intend to do whatever is necessary to weather this storm.

Now that I’ve gained about 10 pounds back, I’m ready to get back outside and get those back off. My oldest son has vowed to help by getting me on the tennis court early in the mornings before his college classes start. I also plan to get back to my hiking trails starting today and get back on my bike next weekend.

Time to look forward to the future instead of dreading it.

Thanks to all of my Spark buddies for your support!

  
  Member Comments About This Blog Post:

HEALTHY_CAROLYN 8/25/2009 10:47AM

    I remember reading an article back when things with the economy started going poorly about how many people would abandon their health goals because of stress. The message of the article, though, was that this was the time to focus on your health goals because when you can't control other things, you can always control yourself. I've thought a lot about that as things get tough, and it's really helped. I used to have this really bad habit of eating a lot when money got tight, as if I wasn't going to eat again because there'd be no money for food. It was a totally ridiculous thought (thankfully for me, though I know that's a real possibility for others), but I just felt this drive to keep eating. Now, I handle my fears and stresses differently, by controlling what I can and staying positive. I'm sad to read about your situation, but I'm happy to see that you're not letting that hold you back. I'm glad you've got a good support system, and you know you've always got your sparkbuddies!

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RAVON27 8/25/2009 10:38AM

    Sorry for all your problems, but I know you will get over this big bump in your life. I'm glad you got to go on your trip. Try thinking of the great time you had when you feel down. My husband has been working part time but we are lucky enough to have moved in with my mom (did I say lucky hahaha)!

That 10 lbs. will come off in no time with the tennis. I would love to play tennis again. I was working for a tennis team this summer and it made me miss it from my childhood.

Hope you have a great week emoticon

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LIZZYP609 8/25/2009 9:00AM

    Good luck to you!! I can relate to your families job situation. I live in Northeast Indiana and the unemployment rate in the county we live in is the lowest at 10.5%! I have so many friends and family that have been out of work. I say a prayer everyday that my husband and I still have our jobs! Hang in there. This to shall pass!

I love the picture!

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MYCUTEGIZMO 8/25/2009 8:57AM

  No worries start again now..it is never too late..

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