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.
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.
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.
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.
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