Friday, May 17, 2013

Make a Wish Foundation

For those of you who may not know about this organization they grant wishes to children up to 18 years old who have life-threatening illnesses. 

I nominated Nicole for Make a Wish when she was about 16 years old.  Two volunteers came out and interviewed Nicole but she didn't seem thrilled about having a wish fulfilled.

It was forgotten and I didn't push her about it.  We received a letter shortly after she turned 18 regarding her wish and if she didn't respond by a certain date they would close her file. 

Her issue was she didn't have a real clear cut wish.  She isn't into actor/singers etc. that she would want to meet and since we live in Orlando there was no thrill in Disney since we have been there numerous times.  She has always wanted to go to Alaska but knew there would be many drawbacks to this.  The child's doctor must approve any and all wishes before it becomes "official". 

Nicole and I talked about it and brainstormed some ideas which she told the wish volunteer during a phone conference.  I wasn't too happy when the volunteer basically told Nicole that she didn't think they would be able to fulfill her wish. 

In January, while Nicole was in the hospital the volunteer called and left a message for Nicole.  She wouldn't talk to me, only Nicole.  I didn't check my messages right away after coming home from the hospital.  When I did I took down her name and number but procrastinated having Nicole call. I couldn't find where I had written the message and then I accidentally cleared my calls screen on my phone and I had deleted the message after I listened to it.   She never tried to call again.

In March, I sent an email to the last contact person I had with the foundation.  A couple of weeks later I got a response from the wish coordinator.  I explained to her about the volunteer calling and me losing the message, the volunteer refusing to talk to me  and the volunteer saying she didn't think they could fulfill the wish.  I got the feeling the coordinator wasn't happy about this.  Her and I set up a phone conference and I guess because I am Nicole's POA (power of attorney) they could talk to me.

The coordinator and I had a very nice phone conversation and while Nicole's second and third wish had remained the same, just the order had changed, the top wish had changed.  Make a Wish requires that you have three wishes in order of importance in case one or two can't be fulfilled because of doctor's refusal or Make a Wish isn't able to grant it. 

One of Nicole's best friend's is an online friend who is the same age as her and lives in Maine.   They met through a mutual friends website that was about Lilo and Stitch and drawing and animation about 4 - 5 years ago when Nicole was first starting to get computer access.  Over the last three years though they have become very close.   They text ALL day long and talk on the computer and skype. Her number one wish was to meet him in person.  The coordinator thought that this was a doable wish but she would have to get back to me and let me know after she spoke with her supervisor.  Once she spoke with her supervisor she contacted me and told me that it was doable and that the supervisor thought it was an awesome wish.  They have never fulfilled this type of wish before. 

The next step was to decide how this was going to happen and to have Nicole's friend (Shayne) agree to this and sign the necessary paperwork.  While we still don't have all the details hammered out we do have a date for the wish which will be July 9th - July 13th and we do know that Shayne will be flying to Orlando from Maine and we will be staying in a hotel.  All that has been really planned is the flight has been booked and I believe they will go to a Disney park one day and I think they are going to set up an art class for Nicole to take with Shayne (he's not an artist).  Nicole also wants him to come to our house to meet our dogs etc.  I'm sure it will all come together in June. 

Nicole and Shayne both are so excited to be meeting each other.  Nicole worries about having to get her site changed around this time and ruining her wish but I will do everything in my control to not let this happen.  The smile she has on her face when she talks about her wish is just priceless.  Once we have all the details of the wish I will do an update.

My only concern is that Nicole is really bad with goodbyes and I hope that she will be able to handle saying goodbye when it is time for him to go home.  I am so grateful to Shayne for being such a good friend to Nicole and being there for her during her diagnosis and her illness.

Thursday, May 9, 2013

Overcoming Procrastination

I ordered a four week audio/workbook class on procrastination by Brook Noel who is an author and time management expert.  Her program is called Make Today Matter which reminds me of living in the moment and only for today which Denise says a lot. 

I truly believe that my lack of time-management skills, my lack of getting out the clutter and keeping it out, my feelings of self-worth, my lack of forgiveness and my lack of peace all stem out of procrastination.  I have learned that procrastination is ALWAYS an emotional response. 

I was shocked as I listened to the podcast and read the chapter about procrastination to realize that the reason I have tried and failed at handling procrastination is that I am treating the symptoms not the cause.  There is a eight phase cycle of procrastination and I was shocked when I read these and highlighted and underlined so much of this cycle because I see so much of myself in this.  I had to fill out a sheet of my current procrastination inventory which includes tasks, the benefit of completing it, the one reason not to complete it (I was a little confused by this) and if you were to break it down into steps what would be your first step.  I then had to do an historic procrastination inventory where you list a task that you procrastinated on and whether you ultimately completed it, how long did it took to complete, and why do you think you procrastinated on this task?  At the end of lesson 1 there was a procrastination quiz analysis that you had to take that asked you questions divided up into ten sections (there are ten types of procrastinators) and you are to strongly agree, agree, kinda/sorta, disagree, or strongly disagree. At the end you tally up your numbers for each section.  Each section had five questions with scoring of 1 - 5 so you could have a high of 25 or a low of 5.  My lowest score was a 15 and my highest score was a 23. 

I am very proud of myself up to this point as I know myself well enough that I will start taking a class and I will print out all the material and maybe listen/watch the podcasts but not do the work but so far I listened to week 1 podcast and I did all the work :) 

Of course, my concern is that I wasn't truthful with my answers but I think by the results I was.  This is what my top four highest sections came in at 21, two at 22, and the last one at 23. 

The 21 I received is "The Pleasure Seeker Procrastinator"  and the only reason I scored so high on this is because I will procrastinate  because doing something else would make me happier and avoid the unpleasant tasks. I place a high value on what others think of me and my life isn't very balanced and I get side-tracked easily. 

The first 22 I received was "The Avoidant Procrastinator" which basically states that this person might fear success, failure or both.  Whatever the motivator, she is concerned by how others perceive her and would rather be seen as lacking effort than ability.  One of the fears of failure is letting someone down (I immediately thought of how I have let Nicole down). She also talked how this procrastinator needed to break things down into little steps so success is guaranteed.

The second 22 I received is "The Depressed Procrastinator" which basically states that this person has tried many, many things when it comes to time management, organization, planners etc. and not achieved the desired results. She becomes depressed at the idea of a new task or project, predicting that the outcome of the future will be the same as past - unfulfilling.  She doesn't feel change is possible because of past failures. 

My highest score was a 23 and this is "The Overachiever Procrastinator" which basically states that this person defines her self-worth by what they accomplish.  She takes on many tasks in hopes to validate her self-worth by completing them all.  Often the number of tasks is unrealistic and in the end she feels overwhelmed and paralyzed, which validates her negative self-worth and enables the cycle to continue.  I think if you looked this up in the dictionary it would have my picture. 

I also found it very interesting that number one in the eight cycles of procrastination is "you want to achieve an outcome. Often this is something that either you place a high personal value on. Or the people you admire or respect place a high value on.  You feel an "internal" need to start."  I equate this to my feelings and behavior with project/tasks that if it is important I will procrastinate the most irregardless of whether or not it is something I enjoy or dread.  I believe just because it's important I will procrastinate. 

I look forward to taking the rest of the class and I really hope that I will be able to conquer this so I can feel good about time management and get rid of the issues I have with clutter and keep the clutter out so I can achieve and be all God wants me to be.  I also feel that this would bring me such peace which I don't have. Denise had asked me to write a letter to peace for my homework in coaching and I have gotten a big, fat, blank piece of paper as this truly has me stumped and I have thought and thought about it all week. 

Thursday, May 2, 2013

A letter to my mom...

I belong to a caregiving group at  The owner and founder of the group Denise Brown is a friend and life coach who helps me work out many of my issues.  My homework this week from our coaching call last week was to write a letter to my mom. So here it is. I think I said everything I needed/wanted to say.

Dear Mom:

I can’t believe that the 15-year anniversary of your death just past. It seems so long but at the same time not. I want to thank-you for watching over Nicole. I truly believe that God along with you and maybe angels have because there is no other reason why she is so sick and still with us. I would like to believe that you can see us and you have watched Nicole grow up. My deepest regret is you never met her or had a relationship with her.

I think I’m going to work my way backward. I hope that you’re not mad at me because I had a memorial service even though you didn’t want one. I hope that you remember what I said at this because I don’t because of grief and nerves. I hope that you’re not mad at me that I didn’t wait for the doctors to run all the tests to confirm for sure that you were brain dead. It would have taken too long and we only had so much time before Rick had to go back to work. Nicole ended up getting sick too. I believed that if you weren’t brain dead you would have breathed on your own without the help of life support.

I hope that you are not mad and will forgive me that I didn’t have the courage (it also grossed me out) to hold your hand when they took you off of life support which I think is odd because I have your ashes on my fireplace and I don’t find that creepy. I knew when I arrived the night before that you were gone because of a couple of things. The first was when we were driving through Pennsylvania and I was sleeping and had a dream that you were sitting in the back seat with Nicole sitting all prim and proper and staring blankly ahead. The second thing was when we finally got to the hospital. I was sitting next to your bed and there was a window behind me. I got the weirdest sensation/feeling that you were behind me looking through the window. I knew you were gone.

I remember on April 8, 1998, Jim (my brother) calling me and telling me that you had Stage IV lung cancer. He also told me you were going to refuse treatment and that they were giving you three to six months. I thought I was going to pass out. It was the oddest thing because that morning I was having “quite time” and I heard, as plain as day, in my head your voice telling me you would always love me. I learned later that it was at this same time that you were in respiratory distress and was waiting to be transferred via ambulance to the ER.

I also learned that you had had emphysema for at least a couple of years and you didn’t tell Jim or I and most of all you didn’t quit smoking… I don’t understand!!!! Your reasoning was you didn’t want to worry me… but that (to me) isn’t good enough. There’s so much correlation with Nicole and her health and she doesn’t want to tell me stuff so I won’t worry. I feel I deserved to know. I don’t understand how you could give up like you did.

I wish SO much that I had been there when you were given this kick in the gut news. I know exactly what that feels like. I don’t even know for sure if Jim was there or not. I believe it was April 12th or 13th but I’m not sure,  all I know it was the day after Easter that year that I spoke with you and the doctors were going to do a procedure (maybe it was a biopsy) where they were going to take a piece of the tumor in your brain behind your eyes (it was affecting her vision) to test it to see if it was lung cancer that had spread or was it brain cancer. I remember I believe during this call that you told me you wanted to be cremated and you didn’t want any fuss of a funeral. I remember your hesitation and nervousness of the procedure and tried to reassure you but at that time I believed that the doctors knew best and this had to be done, boy how things change.

Needless to say, I slept with the phone next to my ear and not very well at that. When I woke up I still hadn’t heard from the hospital. I had asked my mom if she wanted me to come up for the procedure and she said no. After numerous calls trying to find out information. I finally talked to a doctor and found out that there had been complications and you had hemorrhaged. They had her in a drug induced coma because of the swelling in the brain. We left on Thursday I believe for New York. I remember calling to talk to the doctor when we stopped for the night either in North Carolina or Virginia and finding out that they thought you had had a heart attack (this was mainly due to a test or something being high) but in actuality you had had a stroke that left you brain dead.

I don’t remember if it was my last conversation or the conversation I had with you after your diagnosis but you said something that I didn’t understand nor will ever forget. You said, “You don’t need me anymore.” I can’t tell you how hurt and angry I was at this statement as I would always need you. I felt guilty (and still do) because I didn’t call enough or wasn’t a good enough daughter for you to say this. Like everything else in life it seems everything comes full circle. I can understand in some ways why you said it because I fear this with Nicole even now… I know she relies on me for her health issues but that’s all. I struggle not to feel like she doesn’t need me anymore.

You died without a will which meant Jim and I had to take care of this. We would be still waiting if I hadn’t taken it over for Jim. I hired an attorney and started the process. We were beneficiaries in her life insurance policy. I took a portion of that money and took a correspondence course on medical transcribing as I thought this would be work I could do from home and also to understand your medical records. I also found out that you were addicted to anti-anxiety medication (I don’t remember without looking what they were but I recognized the name so it was popular). All you needed to do was call the doctor and he would call in a prescription without even seeing you. I couldn’t believe this. I was livid. This process was more than a nuisance than anything because you didn’t have anything of monetary value.

One last question that bothers me is … why didn’t you ever discipline me? You just allowed me to do whatever I wanted and while it isn’t your fault I think I got into a lot of trouble that I wouldn’t have if you had. It made me feel like you didn’t love me enough to give me a curfew, or to ground me… I may not have paid any attention to it but you could have locked me in my room with the window barred shut. :) I have struggled with this with Nicole. I feel like if I discipline her she will feel like I don’t love her which is just crazy because I know I felt that way because you didn’t discipline me.
I lied… I have one more question… Why did you allow Jim to treat you like he did? I know the guilt you had because you couldn’t support both of us and so I am sure Jim played on that guilt and I am sure he brought it up many times how you owed him because of this. I wish I had known he was doing this… it just isn’t right and he should be so ashamed of himself (even though I know he’s not).

I will always be grateful for the last words that you said to me which were “I love you.” Every time I go somewhere, go to sleep, talk on the phone etc. with Nicole this is always the last thing I say. If something were to happen to me this is the last thing that I want to leave her with.

I wrote this letter over a period of a few days. While I was typing it up this morning I thought about my obsession with hoarding food. If you came to my house on any given day and looked in my pantry it is overflowing and I even have a shelf in the spare room of oatmeal and snack foods. If you were to look in my fridge it is full. If you were to look in our free standing freezer the odds of something falling out on your foot is over 90%. I know that I have this obsession because of going hungry as a teenager and being too afraid of being there again. I know it is ridiculous to have eight boxes of instant oatmeal and while some of it is from lack of organization and not knowing what I actually have some of it I carry from my childhood and don’t blame my mom at all … I blamed my dad if anybody.

I also see a lot of the anxiety and other issues that my mom suffered in Nicole. Nicole is very anxious and afraid of a lot of things and gets very upset over the smallest things. She wants to please everybody. I can be like this too but not to the extent that she is.

The plan when my mom was diagnosed was to bring my mom down here and live with us until she died. I even talked to her doctor about it and he agreed. I knew that Jim wouldn’t give her the care she would need. Unfortunately, this never happened but I regret not having that time with her. I also regret that I never got to say goodbye properly.

It is my biggest hope, when pertaining to my mom, that she would be proud of me and the way I have lived my life.