Friday, August 31, 2012

"I believe in Miracles"

I have spent many, many evenings in the emergency room these last few years. My dad has congestive heart failure, diabetes, and a whole list of ailments that has landed him there. Tuesday evening, however, the ER was a whole new experience for me.

 Jillian has been experiencing all sorts of new symptoms the last two weeks. They come on slow, they creep up on you when you’re not looking. You look back, and you can see them all, each one flashing a neon warning sign. Tingling and numbness in her left thumb and forefinger. Increased weakness on her left side. Headaches that are relieved with Tylenol, increased headaches that are not. Light headedness, fatigue, occasional vomiting. Dropping things, bumping into things…..each one of these things on their own are creepers…put them all together and they spell trouble.

 Jillian and I arrived at U of M’s ER at 6:00 pm on Tuesday, after a three hour drive. The admission part of our stay went quickly, the rest of the visit dragged on into the night. SO many questions, IV’s, neurological exams, blood work, MRI’s, and waiting for results.

 I am blessed with the ability to work from home. Each time we have a dr. appointment, I take my computer with me and I work. While waiting for Jillian to return from her MRI, I was instant messaging one of my co-workers, Staci. Staci has become a part of our family, and a huge support for me. I’m messaging her, “Its taking so long…she’s been in the imaging room for almost three hours…I know something is going on…..where is my Miracle Stac? “

 It took her quite a while before she responded to me. But then the message box popped up on my screen. I had a clear image of her just then, tears streaming down her face, struggling to say the right thing, the thing I needed to hear.

 "Jillian IS your miracle, Sue".
 "You’re Miracle is Jillian".

 And with those simple words, I was reminded once again that the Miracles in our lives are all around us, every single day. I have too many Miracles to count. My four precious children, Jonathan, Joshua, Jillian, and Jennie. My new daughter in law, Kaytie, my two incredible grandchildren, Spencer and Charlotte, my parents, Jillian's fiance', Steve, Jonathan’s sweet girlfriend Ashley, and my wonderful supportive family and friends.

 As I was driving to my Gilda’s club meeting last night, I had another image. With tears streaming down my own face this time, I was placing one of my Miracles in God’s loving, open arms. Right where I know she will be safe when I’m not with her. Right where she needs to be, all loved up and comforted, and protected while she is away this weekend at the cabin. I know He will watch over her for me.

 Miracles come in all shapes and sizes. Some even have four legs. This holiday weekend, love up on some of yours.


 The photo is a tattoo Jillian’s sister, Jennie, created in her honor:

 “got this for my sister, praying for you every day. God won't put you through anything you can't handle♥”

Tuesday, August 21, 2012

Defining me...

de•fine -transitive verb
 a : to determine or identify the essential qualities or meaning of b : to discover and set forth the meaning of
 c : to create on a computer
 a : to fix or mark the limits of
b : to make distinct, clear, or detailed especially in outline
Characterize, Distinguish <you define yourself by the decisions you make Denison University bulletin>

  I remember thinking, or possibly even saying at one time, Melanoma won’t define who I am. I’ve been thinking about this a lot, and I wonder, how can it not? It is my sleeping partner. It sits with me over coffee in the morning. It goes to work with me each day. It hangs around in the evenings, and it comes along on vacations. 

 Last week was a rough one for me. My dad had been home on Hospice care, and last week Thursday he was admitted to a wonderful hospice care facility. It took some time before I completely got my arms around that transition, but I’ve gotten used to the idea. I’m even okay with it. I have been on vacation this week just trying to recharge my batteries. It wasn't until this evening that I was able to call my parents. I’ve been in healing mode, and I did not want to be thrust back into my reality by talking to them. I told my mom about my lack of communication, but in typical mom fashion, she understands.

We talked about being “burnt out”. I think it has happened to me. I’ve heard the phrase, but I dismissed it, not really understanding what being “burnt out” really means.

 But I can almost guarantee that those that have melanoma, or are caregivers of loved ones with this horrific disease know exactly what I’m talking about. There comes a time when you have to recharge. For a long time, I was able to function on my anger towards this disease. The constant drive to share awareness, get that word out to others…go go go…..Not to mention the true caring and loving that comes from supporting those with the disease. The pain you feel as those you’ve become friends with are struggling with this evil cancer. I know that I’m not doing anyone any good by being “ burnt out”, and staying that way.

 So this week is healing week for me. I’m embracing the wide open spaces that I have always needed to feel complete. I’m praying a lot. I’m shedding some tears. I’m loving my family, and my special sidekick, Annie. And I am trying to close the gap between my fingers as the sand tries to find its way through.

I’m paying close attention.


Friday, August 17, 2012

The Piano Man....

So many thoughts have been circling through my mind  the last few weeks. I lay awake at night and wrestle with them all. I try and put it all in a neat little organized package, but that just doesn’t work very well. My thoughts are slippery, and have their own path to follow.

My Dad has been home on Hospice care for the last three and a half weeks. I never had a family member, or even a close friend that had been on Hospice, so I had no idea what that would mean for the family. I went into this transition period with my Dad full speed ahead. He wanted to be home, we’ll get him home. We will make it work. I’ll make it work if it’s the last thing I’ll ever do.HA! I did not take into consideration what this noble, selfless act would do to my Mom. It has taken a toll, to say the least. Every day, Dad has been getting weaker and weaker. The first week my Mom was able to get my Dad up from the bed and to the chair by herself. The second week, there was no way she could do it alone. I have been sleeping at my parents house every night, and spending most of my days there, working from their home along with Jillian. I don’t need to go into the logistics of it all, but it works. Until this past Monday.

After my Dad’s breakfast, the routine has been to get him to his chair with the help of his walker. This day, his legs just wouldn’t work. My mom and I have a little system where I pull him up until he can grab hold of the walker and balances himself before he begins the short trek to the chair. “Ready for your marathon Dad”? He always grins and nods yes to me. I’m holding him with all of my strength, my mom right behind him. He starts to buckle, but I hang on tighter. My back begins to spasm, and sweat is pouring down my neck and back with the strain of his weight. “Stand up Dad, try and stand straight”. And he does. Slowly, we begin our marathon to the chair. I had a vision of Tim Conway in one of the skits he did in the Carol Burnett Show. I started to giggle inside. We were getting nowhere fast. Get it together Sue. Slowly, at an inchworms pace, we got him to the chair. It was at that moment I knew. We couldn’t do it anymore. I couldn’t do it anymore. I think my Mom knew a lot sooner than I did that caring for my Dad alone wasn’t going to work. She has been caring for him for many years. It’s time. Time for someone else to take over the physical care for him, while we enjoy the time we have with him.

Yesterday was a big day for us. We got Dad settled in his new home. It is a beautiful facility surrounded by woods. He can go outside, right off his room on the patio, and enjoy the fresh air again. Hear the birds, feel the warmth of the sun, and smell the rain. As we wheeled him around in his wheelchair, we stopped in a huge lounge area where a piano waits. My sister can play beautifully, and has done so professionally. “Will you play for me Deb”? And she did. I held together pretty well, until he asked her to play one more. With tears streaming down our faces she played as my mom held tightly to her lifelong mate, with me and Jillian crying and hugging, sharing and experiencing this moment of love, hope, peace and faith.

I spent one last night at my parent’s home last night. My Mom and I both grappling with our inner thoughts, talking and crying together. I know she feels relief that my Dad will now be cared for in a way she couldn’t do for him anymore. I’m struggling with my own sense of failure that I couldn’t do more. I know I shouldn’t feel that way. I know this. But I do. I’m stubborn that way.

I’ve been learning so much about life these last few months. I’m experiencing so many miracles every day. My eyes are wide open, and I’m grateful. I’m thankful for all of the people who have been so supportive, and so unselfish with their time, their love, and their support for me, for Jillian, and for my Dad.

I'm planning to listen to many, many more songs, as I continue to learn and experience all there is to hear. 

God Bless