Tuesday, August 21, 2012

A Mother and Grandmother's Perspective

A while ago I had emailed out some updates / misc stuff to our parents and siblings about a variety of things and one of those was an invite to author a blog post. This blog has been an outlet, sounding board and healer for me and I was trying to share the good feeling....

So, from my mom, who I couldn't imagine not having in my daily life. She asked us to edit or make sure we were "ok" with her blog. We read it and both agreed that there are no edits to someone's feelings. They are what they are and it humbled both of us. We love you.

A Mother’s and Grandmother’s Perspective

I have the special honor to write a guest blog on my perspective of the Martin family’s journey.  I am writing as Lori’s mom and as Will’s grandmother. 

Bringing Lori home from hospital.  June 1980

No matter how old your child is, they will always be your baby.  When they are hurting you are hurting.  When they were kids, the pain could be kissed away.  However, in this situation, there is no magical band aid (or sticker) to cure this hell.

Lori – one year old

Lori – two years old

For 31 years I felt like I had done a pretty good job protecting my baby but on July 5th, 2011, all that changed.  That day will always be embedded in my mind and heart.  It is not every day that your daughter comes in and tells you that her son, my grandson, has a terminal disease and is going to die early, very early.  What does early mean?  Have you ever thought about what you would do or how you would react?  In my whole being there was nothing I could draw upon to help me prepare for this unspeakable moment.  There was nothing I could say or do to take away the pain and pure anguish.  We just stood there, held each other, and cried.  The world outside stopped and nothing else mattered.  I knew enough to know that this was going to be life changing.  [As time went on, we learned the ripple effects of this disease.]

After a year of grueling tests followed by a horrific diagnosis, the journey continues…  I think of it as walking through the swamps and then just like that, you fall into quicksand.  Lori and Neil’s quicksand can pull them in with no forewarning.  Pow!  Fever!  Get to the hospital in a frantic rush!  Keep the bags packed and always have Will’s medical papers with you.  Thanks to the “fast pass”, Will goes right back – no waiting in the ER.  IV’s, blood work, urine samples…All of this should be pretty scary to little Will but for the most part he knows what’s to come and can handle it pretty well.  He is too busy charming the staff and making friends.  On the other hand, Lori and Neil are scared and worried, rightly so.  They are in the quicksand and are hoping that there is no permanent damage or new brain lesions. A tiny childhood virus can accelerate this degenerative disease and have damaging effects on Will.

This may sound dramatic, but this is Lori’s and Neil’s real life; the way they live every day.  I can’t begin to imagine, as a mother, living a “normal” life knowing that your dreams for your child have been robbed and that the life you expected has been shattered. 

From Will’s diagnosis, we learned that Leigh’s is a genetic disorder that is passed through the maternal line.  After genetic counseling and tests it was confirmed that not only is Lori a carrier for this disease, but me and my two other daughters are as well.  Furthermore, it was determined that this wretched and godforsaken disease began with me.  I have realized that I will never accept this nor will I be able to come to terms with this reality.  In my head I can rationalize and say that I was a victim too and that it was not my fault.  But regardless, my heart has no logic and it continues to break for my family. 
Lori 6, Julie 4, Lisa 2

Together at Will’s birth – April 24, 2009

Before this information came to light, I was blessed with two grandchildren, Carson and Cameron, from my daughter, Julie.  All three of them are heteroplasmic which means they are carriers of the mutation and have a greater chance to develop a mitochondrial disorder later in life.  Lori and Lisa are also heteroplasmic.  Since this mutation is maternally inherited and would be passed to future offspring, Lori and Lisa have been advised not to have biological children.  As their mother, it is hard to watch them struggle with life long decisions.  Again, again, and again, my heart breaks for my daughters because their dreams and their futures will not be what they had imagined.  As you can see, this disease is far reaching.

Together with my three beautiful daughters – September 2008

I will always be a mother first but being a grandmother of three boys has given me so much joy.  I have the privilege of seeing my grandchildren almost daily and in an environment where I can watch them learn, play, and grow.  One of my guilty pleasures at work is gazing at them from afar when they don’t even know it.  I like to watch the way their hands work.  I like to watch how they get pleasure out of what they are doing.  I like to watch their accomplishments.  I like to see their art work.  I like to watch them eating their lunch.  I like to watch them interact with other children.  I like to watch them lick a popsicle during water play.  I like to look up from my work and there they are standing with a smile, waiting for a hug.  I like when they ask to sit in their “special spot” in my office.  I could go on and on but I think I have made my point.  I love being with them!

My three handsome grandsons – Will, Carson, Cameron

Through all of the emotional and physical turmoil in my life, these three little guys heal me in a way that is immeasurable.  Knowing we share an unconditional love that is given so freely makes my heart sing.  They can turn any frown upside down.  They can turn a difficult day into an “I can get through it kind of day”.  They cast a spell on me with their magic without even being aware of how much it means to me.  They truly, without a doubt, make me a better person. 

Me with my three favorite boys

One of my favorite sounds is Will yelling, “DeDe, I want to give you a hug,” while he is charging towards me.  There is nothing better than one of his famous bear hugs.  If you haven’t had one, you are missing out.  You can truly feel the love coming through his arms (if he doesn’t choke you). 

One of my favorite pictures of Will

One cool guy

One cool gal

Our first Halloween

Anyone that has met Will knows that there is something special about him.  It’s hard to express in words but it’s something you can feel when you are around him.  He draws people to him in a way that I have never seen before.  Despite the challenges he faces he is showing us how we should be living our lives. 

Another favorite – smiling with his whole heart

Our first Christmas

You can’t help but love the chubby cheeks

When something of this magnitude happens and shakes you to the core of your being you have to find a way to keep going.  A story about an angel helps me express my feelings and make sense of this unexplainable mess.  In this story, a child angel requested to be sent to earth with the mission of unlocking the goodness of love in people’s hearts.  I believe Will is here for that purpose and that goodness and love are the offspring of his suffering.  He has brought countless people together and has taught us what is truly important in life.  I believe Will is a miracle given to us and knowing that gives me a tiny piece of comfort.  I also believe that everyone in Will’s life will discover a precious gift that he has given to them. 

The incredible family

To continue with the story the little angel is given two special people to care for him on his journey but will suffer with him immensely.  Lori and Neil has been the icon of what any “special needs” child requires.  They have been relentless and have dedicated their entire life to Will.  Every breath and thought has centered on Will and what is best for him.  Their daily scarifies and their unconditional love makes my heart swell with pride.  They have given him the love, security and confidence to face this fight with all that he has.  They have been unwavering advocates and warriors to ensure that he has every opportunity for a better life.  Lori has told me that she has no regrets in the path they have chosen and the care that they have provided.  What more could a mother and grandmother ask for. 

Mr. and Mrs. Martin – July 15, 2006

My hero - College photo

I am 60 years old and my 32 year old daughter has become my hero.  I am in awe of how she lives her life.  She has become a daily inspiration to me.  Even though she possesses these super human qualities she still can fall apart like any human being.  But she has an inner strength that I wish I had.  Similar to Will, she has shown us what really matters in this world and how to love with your whole being.  One of the greatest gifts I have is to call her my daughter.  Lori, I am so proud of you and you will always be my “angel baby”.  Neil, I know I’m your mother-in-law but you mean as much to me as my own daughter.  Please know that I am here for you always.  I admire your dedication to your family and the courage you have shown to make this journey.  Thank you from the depths of my soul for always being there for my daughter.  It gives me peace knowing that you have each other.   

Two courageous warriors

Throughout this journey, I have been humbled by the outpouring of love that has been bestowed on our family.  Your presence is always felt.  We know you are out there.  Your love and support are what get us through the swamp and out of the quicksand.  Knowing that so many people are out there supporting my daughter, son-in-law and grandson gives me great comfort.  From the bottom of my heart, thank you.  Those two words do not begin to express my gratitude but know that I am thankful for each and every one of you.

Will has intertwined himself into so many people’s lives that we all have our own unique and special perspective.  For me personally, I am trying to relish his life and memorize everything that makes him who he is.  I am not the same mother or grandmother I was before July 5, 2011.I have learned many lessons but the biggest is to cherish every moment.  The greatest gift I can give myself and in turn give to Will is to celebrate the miraculous person he is. 

I love you Will.  You will always be my handsome grandson.

Monday, August 20, 2012

Update on Life

I’ve been a bad updater lately, but will try to rectify that for my own personal happiness.
So let’s review things that typically get Will a little off – snot, messed up GI and lack of sleep. Let’s review the past two weeks – snot, constipation and he has quit napping at school.
But, just as quickly as it came, the stuttering seems to have gone or decreased for now. His ataxia has decreased and even his PT Ms. Lauri commented on how much stronger he seemed last week.
SAY WHAT? My Mito Friend? I simply do not understand. All the signals I would have thought would have triggered a hospital visit are now coming with improvements. I give up.
Ok, so I’ll never give up on Will, but it just goes to show you just never know what to expect with this guy.
So, other than obsessively monitoring for stuttering and doing PT, we’ve been doing a lot of birthday party action (need to download and post pics), trying to stay out of the heat (darn near impossible) and getting the house cleaned out.
I’m on a purging mission – Will has been my “big helper” and actually has been doing a great job. He loves to help, so it works out well. Cleaned out closets, cabinets – even the junk drawer.
This week is Will’s last week in Ms. Maria’s class. I haven’t cried yet. He’s moving up to Ms. Monica’s class where he will be a self-proclaimed “big kid” now. I can’t tell you how much I have needed the comfort and care that he’s received in Ms. Maria’s class – Ms. Joanna, Ms. Andrea, Ms. Peala, Ms. Cindy and Ms. Veronica. I know they love him like he’s their own and I just don’t know what I’d do without that.
I know that when he moves up, his new teachers, who already love and know him – will continue with that same level of comfort and care. But he’s a big kid now! When did that happen?
Some funny Will stories…
TMI, but hilarious Will story. Will has some of the stinkiest tootie gas I have ever experienced in my life. I mean, gag me. He will just stand there and toot, smile at me and laugh. So sometimes he has a tootie in bed and Neil has taught him how to “air it out” from under the covers. Well tonight we were lying in bed reading and all of a sudden, Will is shaking the covers out and out comes the absolutely most disgusting smell. He just looked at us and smiled. We started laughing hysterically.
“Are you Kidding Me?” – apparently I must say this a lot. Will says to me the other day, “Are you kidding me Neil?” – I said what are you talking about? Dad’s not here. He fell apart laughing and yelling “are you kidding me?”
I’ll have some more funny stories soon because I am determined to download some photos.
Hope everyone is having a great week!  

Thursday, August 9, 2012

Forest VS Trees

The forest and the trees....

Many days I find myself stuck between the trees in life. I can only see the bark falling off the trees or uneven pathways in the dirt.

I was reminded this week that the forest is still beautiful and thriving. There are so many huge decisions in our future, both short term and long term and if I can stop worrying about each tree and how it will grow or fall I might just enjoy myself.

Happy Thursday and enjoy the weekend.

Wednesday, August 1, 2012

Shop for a Cause

Support the UMDF by Shopping at Macy's on August 25!

Help the United Mitochondrial Disease Foundation by participating in Macy's Shop For A Cause event on Saturday, August 25, 2012.

How It Works:
Log on to www.umdf.org/macysshopforacause and purchase a $5.00 shopping pass.

Shop For A Cause gives you the opportunity to help the UMDF by purchasing a $5 shopping pass for exclusive savings and special offers in every Macy’s store on Saturday, August 25th.  Receive 25% off on regular, sale & clearance items, including home. Save 10% on electrics/electronics, furniture, mattresses, and rugs/floor coverings.

As a participating charity we keep 100% of the proceeds from the sale of each pass. Plus, you can enter to win a $500 Macy’s Gift Card!
*This exclusive shopping pass can be redeemed at any Macy's on Saturday, August 25th.  By purchasing a shopping pass to the event you can support UMDF while enjoying a day of spectacular discounts, entertainment and special events. For more information please contact events@umdf.org