Monday, November 1, 2010

Chapter 3..."I Wear it For My Mom"

(Okay...this is kinda long...of course...
but if you're wondering about the title, please read to the end.
It's really precious!)
For those of you who know me, you know what this chapter stuff is about.
And the only reason I use the word "chapter" is so you know what this blog post is about and you can choose whether or not to read on.

For those of you who don't know me, I was diagnosed with MS on July 2 of this year.
Since then, I have written about it for a few reasons...
I know I can't face this on my own so the support, prayers and love of family and friends mean everything,
and what better way to reach out then my lil ol' blog:)
I also felt that there might be someone who was or may be struggling with this out there who could use someone to talk to...some HOPE.

So that's the reason for this and the other posts.
Having said that, this is the 3rd and final "chapter" to this little saga in my life.
At least until something changes, and I hope that is a LONG way off!

In fact, there isn't much I am going to say.
I've had good days and "not so good" days.
(Saying "bad days" just sounds...well, bad:)
One of the worst was the day my first supply of daily shots came.
3 months worth of syringes and needles and it looked like a lifetime supply.
Taylor was in Maine dancing and Jordan was having fun at a friend's house...
good thing, too.
When I opened that box, I burst into tears.
Not because of the shots themselves but for what they represented.
It just hit me that this is the real thing.

Since then, I have been doing "GREAT" as my Dr. says.
Other than being tired, battling low energy, feeling very emotional at times and a restless feeling in my legs many nights,
I'm okay. 

Actually, I now realize I'm MUCH better off than many people in this world, which is why I want to bring this to a close.  I needed time to process this in my sometimes fried brain (hey...I can say this now and it's kind of true:) and I have thought about it a lot.
I'm ready to move on.
I take my shot every morning and if I'm tired, try to grab a quick nap during the day.
If that's what I have to deal with, I can take it...
and I will take it with a smile and be grateful that this is ALL I have to worry about for now.
It's time to focus on people who need ME now that I have leaned on them.
It's time to once and for all learn to say "no" if I want or need to and to do the things that are really important to me...
like travel to Europe with my family,


walk on the beach with my girls and CUDDLE the cutest boys EVER,

And I need to lighten up life...and my blog.
If I want to talk about something silly like painting a room white or pink decorations for the Holidays, than that's what I'll talk about:)

I wish I could thank each of you in person and give you a big hug to let you know how much your comments, emails and PRAYERS have meant to me over the past few months.
I am truly blessed!!!

And to my family who has been so understanding...
always concerned and always there for me...thank you...
and I LOVE YOU!!

My husband Phil has been extra THOUGHTFUL and I am so grateful.
(and by the way, my doctor, who is also his friend, tells me to take advantage..it can't last.  hahaha.  But he has been wonderful...so far! ;)

To my sweet girls...who are still WISHING this will all go away...

Taylor, you weren't here initially but you knew, even from far away, when I was struggling and I know it hurt you not to be here.
I hope you understand why I didn't let you come home when you heard about me.
I wanted you to be happy and continue to do something you love.
Usually I can't bring myself to walk away from you when I take you to camp,
but this time felt different.
I believe God brought you to this wonderful, safe place in BEAUTIFUL Maine that felt like family so I would be able to walk away and face what I knew was coming.
Your calls and cards meant the world to me and I could cry thinking about how sweet you were/are.  In the morning you bring me coffee and always ask to make sure I took my medicine...and have no problem getting it for me if I haven't...
You offer to miss your ballet class,
even when we both know it is important to you,
if you think I need a break.
And you are ALWAYS willing to do the cooking if I feel lazy...
which seems to be OFTEN:)
I know this isn't always easy and you don't need ANY help being kind and compassionate
but this will make you even more sensitive to others.
I LOVE YOU!

When it comes to shots, things are different with Jordan,
who hates to think of me taking a shot
and will move mountains not to look at my medicine case:)
And that's okay Jordie!

I actually think it's kind of SWEET...
You would do anything for me also and you do!
You just don't want to think of your mum* poking at herself because YOU don't like to get shots.
(you DO know that medical school + sick people - shots, right? :)
You are aware the minute I am tired, as is Taylor, and take such good care of me.
You are also willing to sacrifice tennis lessons or fun times with friends if your MUM needs a break:)
(***We recently spent time in LONDON and since then, I am "MUM" to my girls.  LOVE IT!!!)
And I know you were not away at camp but were right here,
for what turned out to be a rough summer.
You were such a strong young lady through a very difficult time
and this experience will be with you forever and make you an even MORE compassionate person than you already are and an INCREDIBLY compassionate Dr. someday:)
AND...you tried to keep my mind on FUN things...like parasailing...
 (Yep, that's us:) 

I always worried that the "empty nest" syndrome would hit me hard when it arrives...
now I fear it will devastate me.
YIKES!!!
Who wouldn't hate to let these girls go,
even though I know that's exactly what we raise them to do.
But I hope I have at least a few more years before I face that:)
And I know that I have GOOD GIRLS and we will always be there for each other!

See...this is what I mean...it's time to move on.

I KNOW I am blessed in so many ways.

And the other day, when Jordie told me she got a "100%...50 points" on an essay she was required to write for school, I thought that was wonderful.
When I asked her what it was about, she said she had to write about a "change" in her life.
It was to be a change she could write freely about for about 30 minutes or so and not to worry about punctuation...just start writing...
so she wrote about me.
Yep...I thought the same thing...
bring on the tissues.
I'm going to end with Jordie's 8th grade English paper.
THIS is why I am BLESSED...
and THIS is why it's time to move on.



Jordan D.
1.05 Explore the Changes in Your Life
10/11/10

     Change has the ability to completely alter your life at any time.  Most of us will probably never understand  things have changed in our lives.  I believe everything happens for a reason…and yet, I can’t seem to grasp the fact that there is any reason good enough to explain why this happened to my family.  In situations similar to mine, you can’t help but think that sometimes change is the worst case scenario.  I don’t mean things like learning a new hobby or activity, changing your hairstyle, painting your room, and so on.  I mean major life changes that you can never undo or quit if you get tired of it.  The change that happened over the summer was unexpected to say the least.

    Summer is my favorite time of the year.  There’s hardly any stress and a lot of relaxing and having fun with family and friends.  My story begins right after returning home from a girl’s trip to Maine, where we had to drop my sister off at a ballet intensive.  While waiting in the Neurologists’ office with my Dad, who I could see had tears in his eyes and was someone who never really cries, I knew not only did our summer change but our lives.  My Dad is very high up in administration for the two big hospitals in our town. Because of this, when he was driving me to my tennis tournament that morning and instead pulled into the Neurologist parking lot, I knew he had seen the results of my Mom's brain MRI scan since it was done at his hospital.   With my sister gone for 6 weeks, it was a very hard morning for me.  I was the one who was with my mom that day when my dad went back to work.  I was the one who had to be strong during her first day of IV steroids. 

My Mom was diagnosed with MS (Multiple Sclerosis) on July 2 .  The most devastating thing is the unknown.  MS is an extremely unpredictable disease, which means we won’t know how serious her case is for about a year or two after watching the progression.  As of right now there is no cure, only a shot she has to take everyday for the rest of her life to keep symptoms away, and hopefully they stay away!  It was a scary time for everyone.  I was glad my Mom was getting so much support through phone calls, emails, and letters. but part of me wanted everyone to stop telling her that it was going to be ok. I remember thinking that it most definitely was not ok at the time and it might never be! 

I feel so young when I cry or get upset about this, but to be honest I could be 30, 40, or 50 and if this happened I’d still be hoping it would all go away like a bad dream!  When you think about it, it’s not every day you’re told your Mom has lesions in her brain that aren’t supposed to be there so I think I have the right to cry no matter how old I am.  I am so thankful for my friends who were more caring then I could’ve imagined.  Things are basically back to normal, which is a relief!  We live our lives like any other family. We aren’t as upset about it as much anymore and we aren’t mad it happened.  It did happen and it’s just a part of our life now. 

    In the end, one of the most important changes in my life was caused all because of MS.  Two meaningless little letters but when put together they change lives.  Like in all things, there are good days and bad days.  This whole experience has taught me that anything can happen and it’s important to treasure the time you have with the people you love.  We are going to make the most of this.  My mom can still do almost everything as before but now we will try to raise money for a cure or better medicine for her disease.  When people ask me what the orange bracelet on my wrist stands for I simply say “my Mom”.  


 Yes...I am VERY proud of my girls!

And YES...we STILL believe in FAIRYTALES and more importantly...
the GRACE of GOD...


8 comments:

  1. Dear Sue, Jordan and Taylor.

    Sue, your final Chapter was great as usual, you have always been strong and are showing just how strong you are right now! You and I have always used our Nurse brains to self diagnose our problems....only this time to the suprise of us both....you were right! Usually we laugh and talk ourselves out of things! I love you and know you will continue to be strong even though there will be days and times when you wonder how you will!

    Taylor, I knew it was right that you would be at Ballet Camp when your mom was diagnosed, you have such a tender heart and your mom needed time to be strong before you saw her again... God knew this too.
    Jordan....you are strong and sensitive like your mom and God knew she would lean on you even though you are only 13. Someday you will be able to use this time in your life to help others in your chosen profession...I am so glad you were there to help out and just be with her! I loved your paper....you have a gift!

    Love and miss you all!

    hugs
    KathyK

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  2. I do not know you but reading this has lifted me in a way you could not know. All those big things that were weighing heavy on my mind this morning dont seem quite so big anymore.I embrace the moving on and I will carry your story with me as reminder that in my circumstance I will do the same.

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  3. Sweet Suzanne! This is the last chapter in this story. Time for a new book! To moving forward with grace and dignity. You are an inspiration not only to your beautiful and brave daughters but to all of us. Let the next chapter be about the dance of life. The ups and downs and sometimes the falls, but always moving to the music! Blessings my friend!

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  4. Dear Suzanne,
    I'm so glad that you came to visit me...so much has happened since we were in contact...my husband had a heart attack and we are dealing with all of that now...Life is so full of change as you well know...and I am praying for you and I know how hard it has to be to coming to terms with all this, but just know that so many of us have you in our prayers, dear one.

    The paper by your daughter is so touching and the pictures are so beautiful to be able to see all of you.
    Sending (((hugs))) your way,
    Love,
    Cindy

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  5. Your attitude is sensational, your family is fabulous, and the Lord is watching over you always. :)

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  6. By reading this post I remember my mom. She is just like you. As I also have three sisters and my mom opinion for all my sisters is the same as yours.she also proud of having three beautiful angels (my sisters).

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  7. Hi Suzanne,
    Please know that my prayers are with you and your beautiful family. Stay positive and strong. Lean on the Lord, He is always there for you. Thank you so much for sharing your story with us and your daughter's beautiful and touching words. Have a blessed day.

    Hugs and Blessings,
    ♥Ana~A Petite Cottage

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  8. Oh, my sweet, beautiful friend...I have tears streaming down my face and I haven't even read Jordie's paper yet. I'll have to do that later at home!

    You are blessed, never forget it.

    Love you!
    Trudy

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