Perspective from an outsider....

When we would attend family reunions with our cousins on my mom's side, they always called the husbands and wifes that were non-related by blood "outlaws".  So it is appropriate that I use the word "outsider" when I talk of Mary Jo. While we are related by blood, she was tossed into our journey and really is an outsider, luckily, like many of you are who share our burdens and tears, heartaches and joys, but know how truly lucky you are to have skirted tragedy thus far.  Mary Jo is my older cousin.  She was my sister Lou's best buddy when they lived in NY as children, childhood cousins, and they were in each other's weddings, and now, with Lou hanging with Evan in Heaven, Mary Jo and I are best friends. I know why Lou loved her so much.  I asked Mary Jo to guest blog about her meeting another ALD mom, thrown into this new world with us, and her perspective on her experience with Lee and Stevie....

Last week I met another boy with ALD, a disease that I didn’t know existed until almost four years ago. Four years ago, Evan and Stevie were both vibrant active boys. That’s two boys too many suffering from this dreaded disease.  Any number is too many. Four years ago, Steve was diagnosed with ALD after his parents noticed his head dropping. They visited Steve’s pediatrician. The doctor sent him to the hospital for a Cat Scan believing he had had a stroke. He received the diagnosis at that time. Steve Sr. and Lee brought him to Duke University for treatment.  At this point he could not walk or see. The doctors said the disease was too advanced for a marrow transplant and he was sent home to die. Four years later, Steve is still holding on.  Stevie lives in Manhattan with his mother Lee. Lee, like Gina, is an adoring mother who fights daily to make sure her child is getting the best care available. They live in a neighborhood that I love, behind the American Museum of Natural History, blocks from my favorite place, Lincoln Center – home of the Metropolitan Opera, close to Central Park. Across the street is PS 9, the very highly rated school that Stevie attended before his diagnosis. This perfect world was where Lee and Steve Sr. lived. Lee’s partner, Steve, tragically died from a heart attack last year leaving Lee alone to care for their beloved child. She is no longer able to work outside the home. Stevie comes first.

Stevie spends his time on a hospital bed in their apartment. Every open space piled high with supplies and equipment for Stevie.  He cannot speak, hear or hold his body erect. He receives his nutrition through a tube to his stomach and has a trach in his throat to help him breath. His mother, Lee, communicates her love for him by getting close to his face and cooing soft loving words to her ‘Boo’. She says he is like a baby who recognizes her by her smell. When I met them, Lee was concerned about Steve’s oxygen levels and the prescription of antibiotics that he was taking for pneumonia. He had spent a few days the previous week in the intensive care unit of Columbia Presbyterian Hospital and needed to return to get his medication adjusted. She got on the phone very business-like and called for an ambulance to take him to the hospital giving careful, specific instructions. She luckily lives next door to a firehouse, the firemen know about Steve and help the EMTs take Steve from the second floor apartment into the tiny elevator and out of the building every time he has to go back to the hospital. He was released on Thursday. Yesterday (Saturday) I got a call from Lee telling me that he is in the hospital again. The doctors want to take him from the ICU and put him into a regular room. They need to give him antibiotics intravenously. The doctor also talked to Lee about a DNR - a shock for her regardless of the circumstances. She cannot make a decision on that subject now.

Like Evan, Steve is a beautiful child. He has the enormous brown eyes that you can drown in. Angelic is the word that describes him best: Angelic in his innocence and his beautiful face.

Despite these impossible circumstances, Lee is upbeat. She has a can do attitude and is making plans to move with Steve to the suburbs: Stamford, Conn. Today she told me yes she is upbeat but inside she is crying. Still, her mind is still working on fund raising for Stevie, for the firehouse to show her appreciation for their constant help. 

Forever keeping it in perspective,  Mary Jo

Happy Thanksgiving in Heaven....thoughts from Dylan's mom

HAPPY THANKSGIVING IN HEAVEN DYL---I hope your Mimi and Meme make you your chicken nuggets, meat stuffing, and frosty squares you loved so much.  Love you and miss you always.

Thanksgiving...  Things to be thankful for:  my parents and grandparents--who taught me just about everything I know, my husband who in my opinion is one of the greatest men alive, my boys-YES ALL 4 of them for teaching me everyday how to be a better mother (Dylan- teaches me courage, Jacob- teaches me how to enjoy life and be silly, Justin- teaches me how to be creative, Devin- teaches me to be laid back and that there is always a different perspective to see things) , for our families who just love us for who we are, and my friends who pick me up--set me back on my feet in the right direction everytime I fall. 
  In an odd way, I am thankful for leukemia.  Not the part where it took away my son, but the part of it  where it showed me how a community can come together to support those who need it.  It introduced me to a whole bunch of families who-just like us are fighting- or have fought the same battle.  Many of these people have become close friends because they have an understanding that few people have (or should ever have).  Leukemia has taught me to fight and pray for what I believe in.  Even when the numbers were against us-it taught me hope.  Even after the worst--it taught me strength, the ablity to cope and move forward--all the while--never forgetting.  Even though time was short- it taught me that one eight yr old little boy, who went through HELL- can make positive changes in the world-many I still see and hear about today (which I love).   Leukemia taught me- life can be short- Family time and memories are important.  I learned that people that you love don't have to be with you physically because they are embedded in your heart. 

So as you pass the turkey this Thanksgiving, look closely at each person and think about what they have taught you.  Think about those in heaven- and be THANKFUL you had whatever time you did with them.  Each person who comes into your life has a purpose- whether you know it or not-and effects/changes your life.  If I can think of reasons to be positive about leukemia- I am sure you can all find reasons to give THANKS.  Remember to make and store those important memories---and always, always hug your children and tell them you love them.  Then, as always, do it one more time for all of us who can't and send them heavenly....

THOUGHT of the WEEK: Every time we remember to say "THANK YOU", we experience nothing less than heaven on earth.    Sarah Ban Breathnach

Happy 20th Birthday Katie....Perspective from Katie's Mom, Guest Blogger

I am doing this "blog" because my friend, Gina, suggested it. Gina and I are souls joined by grief. The greatest grief there is.

Evan and Katie are our angel children, I say "angel" children because unlike most moms who refer to their precious children as their little "angels", ours are. Yes, that's right, our children are living in Heaven. On a good day, Heaven is a good place. But most of our days are spent in a state of numbness, a fog, a surreal existence, a reality that we cannot accept.

Today, Sunday Novemeber 21st is my angle Katie's 20th birthday. I am in a state of utter sadness, loss, pain and disbelief. Why her, why me, why us, why this??? The questions never stop, the answers never come. The suffering and loss continues.

As I write this, I feel dead. In spite of so much to be thankful for, I am in a deep cavern, just struggling to breath. I look around me and feel so alone. I look at Katie's picture on the mantle illuminated by candles and feel empty and broken. Such a beautiful child, such a loving spirit, so young to be taken away. I want her back, I want to hug her, kiss her, smell her, hold her hand as we pray together, bicker over rules and curfews, shop together, laugh together, cry together, plan her birthdays, talk about the boys, share heartaches, share her joy at being engaged, picking out the perfect wedding dress, the wedding, the babies... I want it all back. BUT, she is in Heaven, perfect, no worries, joyous, healthy and free. So, because I love her so much, I am happy for her. For me, not so much.

I spend my days trying to honor my daughter. I talk about her every opportunity I get, that keeps her vivid and alive. Others, choose to be silent. I guess that is their way of coping, but not mine and I find it hurtful at times. Katie lived, and she lived more in her 15 yrs. than most do in a lifetime. She set an example of what strength, perseverance, hope, wisdom, tenacity, courage, faith and love should be. I could never endure what she did for 16 months, she truly was a warrior who fought until the bitter end...the bitter end... when she knew we were prepared to let her go.

As a mom, and I know there are many of you who will understand this, we love our child so much that for them to be free of the pain and suffering we turn them over to God's loving, eternal care. I did so on Sunday August 6, 2006.

Katie's journey led me to Gina. At a fundraiser for the Leukemia and Lymphoma Society, Katie's Pennies Make Sense, a mom asked if I knew Gina as we had both lost children. Eventually, we connected and now we are partners, moms with a mission, moms with passion and sometimes moms with "attitude". BAHBAD is our baby, a baby that needs attention and encouragement for growth.

I know first hand the importance of all the entities that we advocate for, without them, our children's lives would have been even more difficult. Through BAHBAD, we educate about blood donation, marrow donation, organ donation, cord blood donation and just about being a giving, caring and loving human being to others in need.

So on this day, my angel Katie's 20th birthday, I have shared my heart and hope that it will light a fire within you to be grateful for what you have and be generous with your ability to give to others in need.

Katie, my precious baby girl, Happy Birthday, I miss you and love you beyond the Heavens...until we meet again...If I had wings, I would fly up to Heaven.

Mommy

As I get older I realize how little I know....

Happy Birthday to my husband Mark.  He has most every quality that makes a man a great father and husband, and only a few bad habits to keep this wife agitated just enough.  I am so blessed to have him refuse to let me go, through this roller coaster of life we have been on for 30 years now together.  We are looking forward to the continued joy our children, all four of them, have brought to our lives and will continue to do so.  Next year is the big 50!!

My mom has always said, "You learn something every day.", and now I find myself saying the same thing. As I am waiting for my friends to come so we can do a little cardio/strength training circuit, two days of P90x has me seriously sore, I feel the need to come write.

Most importantly to say thank you to those who are reading and telling me that my words are making a difference, that you are hugging your kids more than ever, that you are keeping life's roller coaster in perspective, and that the glass looks half full when it used to look half empty.

Today I made the decision that I was ready to forgive in a way I never thought I could.  I have shunned Mark's immediately family due to tremendously hurtful words during this journey.  Before the journey there would have been no forgiving, but now, by the Grace of God, I am able to do the right thing, not only for my soul, but to bring happiness to others, and those others are Mark's parents.

This will be our fourth Christmas without Evan. While Christmas was always about the kids, and  I would go hog wild and I will tell you my kids will always have amazing memories of this childhood holiday, Jesus was no where to be found.  At the donor event I was at yesterday, the radio played holiday music at the end of the day and I was ready to "kill" someone, as I have serious bah humbug feelings for this holiday since losing Evan, but hey, aren't you supposed to wait til after Thanksgiving anyways?!  The first two years we took cover under the loving arms of my cousins in NY, and last year we took my mom with us on a cruise, Evan would have loved both locations.

This year, because Mary is coming home and wants to stay home, I don't blame her one bit, we will be home for Jesus's birthday.  This year, Jesus will be in the forefront of our holiday celebration.  And I am going to announce here for the first of Mark's birthday gifts, that I would like to have his family over for Christmas Eve, just has we have for most of our marriage, but this year will be different.  After dinner, our family will be attending Midnight Mass, and on Christmas day, we will be saying the final day of our 54 day Novena together, before we open gifts to celebrate our Lord and our love for Him and each other. Happy birthday Mark.

Birthday gift two, is that we will be celebrating Christmas day at home, with any FRAMILY who wants to join us.  So, this open invite is to any one reading who would like to celebrate for the right reason, enjoy one other with yummy food cooked by Derek, Mary and myself, but you must be ready to take us on with a little Bananagrams, May I, Sequence, etc, and just enjoy the gift of salvation that was given to us this day.

When I reread my words, I am amazed at the transformation that has occurred, shocked really.  My entire life I have feared what has become my reality, but again, by the Grace of God, I am alive, learning to love life again, and will, I will announce right here and now, stumble over and over again with my humanly faults.  Don't judge me by the mistakes I make, but praise me for the amazing good works we are part of.  I don't know when the next tragedy will strike, I am certain it will, but I have bound and determined to stand strong and never, ever allow the devil to win.  Hmmmm, I guess I was given my seriously competitive spirit for a reason.

Off to workout and work on Mark's third gift.
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Laughter and Tears in the course of one hour

This picture is for my girl all the way in Indiana.  I know how much she adores sunsets and this one is from the balcony of my bedroom where she has taken many a picture.  How'd I do Mar?

Mary told me the other day that I needed to just start blogging and not feel like every post needed to be meaningful and insightful.  So I am contemplating doing so, as difficult as it seems to me, as I really want to feel like my words are useful to those reading them.  This post is a poignant one, but I am going to try to take Mary's advice and see if I can just write to share, entertain, cry, bitch, whatever the mood is for the day, long or short, whatever.  Your support along the way with comments will help me to realize if this is the direction I should be going in and if WE want to continue.

Here goes....
This morning a few of us took on the P90X Core Synergistics video for the first time.  Difficult movements which over time we will master, and I am already 12 hours later feeling the effects of the workout in my glutes,  a good thing.  As we "around 50 year olds" were stretching, in a downward dog position, we could  not help but be mortified over the droopy skin that is hanging down around our knees. Thankfully we could only see our own, and Tara was lucky to have capris on so hers were covered up, but I told the ladies the reason our sight goes as we get older is so we can't see all the flaws the years provide for us.  Just squint a little more when looking in the mirror so you won't be so shocked.  Lots of laughter and fun we have together as we share our lives and improve our health through exercise.

Tara quickly scooted out as she knew Diane and I were planning to say our Novena together after our workout, she is Jewish, even though she knows we would have welcomed her, but we did ask our Christian friend Cathy to join us.  We didn't know what we were getting into, but soon Diane suggested since we were on the Sorrowful Mysteries today, that we should do  The Seven Sorrows Devotion. If nothing else, I do suggest you click on the website above to read the sorrows of our Mother.  I will tell you that God placed this on Diane's heart today and that the message could not have been more perfect for the conversations we had previous to our prayer time together.  Ironically, Diane, Cathy and myself have all lost children. The three of us have all walked the path of Our Blessed Mother  suffering with the pain of losing own children.  Our tears were not only for our Blessed Mother, but for ourselves and each other, and no greater healing takes place than when we can help another, and that is exactly what the Novena did for us today. God is good.

Tomorrow I am off alone, just as my numero uno volunteer Carolyn did today, to Mt San Antonio College, our favorite location to run drives partnering with the American Red Cross. And then on Thursday, Mark's 49th bday, to Cal Poly Pomona.  I am always saddened to realize the limited number of volunteers we have, and this motivates me more to keep up the Novena, in addition to the fact that I love the peace that surrounds me during and after my prayer time, to implore the Blessed Mother to hear my cries for direction and success to the foundation.

Trying to focus on the positive and let go of the negatives, which are inflicted by others whether they know it or not, but still struggling with the immensely.  I do want to share the writing of a gal I have been put in touch with that is a grant writer who I will be hiring to help us find money to get our work accomplished.  She knew nothing of us, but I shared the video and these words followed....


Hi Gina,
Before we chat tomorrow (which I am really looking forward to), I just want
to take a moment to pause and send my condolences and deep empathy to you
and your family for your loss of Evan. My heart breaks for you and I just
can't imagine how hard that road must have been for you all. Ten years with
a baby is just not enough. You are amazing people for ever getting out of
bed after that. And you and your husband are amazing parents for raising
children who would do something like Mary did, to turn around and donate the
way she did. I am eternally impressed with your entire family. I don't even
know you yet, but I am proud to know OF you all. :-)

That all said, I need to wipe away these tears (oh this is an emotional
topic, isn't it), and go hug my boy and look forward to chatting with you
tomorrow.

Just wanted to tell you, in the moment, how fantastic you all are and how
very sorry I am for you.

Now to follow your lead and move on to the work we can do together. :-)


My response to her and to all who have ever write or spoke a kind word to this grieving mother....


I am so thankful for your words.  I can't tell you how many people don't get it. g

Trying to let go of the disappointments in life....

It has been clear from the beginning how weak we human beings are, even written about in the Bible with Adam and Eve, giving into temptation when spurred on by the evil in this world.

I know most of the time people know not what they say, but those words are so incredibly hurtful and I still think it is worthwhile to share my feelings in hopes that perhaps others will learn and not speak them in the future and maybe just maybe, I can prevent pain for just one other human being.

I am misunderstood by many, mostly because people only have part of the story, not because I failed to share it, but because they failed to read it. I have held back nothing on this journey, which started with Evan's diagnosis, followed by the fight, the loss, and the grief process.  If you have jumped around, it would be very easy to misconstrue my words, thoughts, feelings. But if you have followed along, you will know that from this tragedy, we have been triumphant, only by the Grace of God I might add.

Every presentation I do, and almost every conversation I have with another hurting individual at some point, goes like this.....Each of us will experience tragedy in our lifetimes, some more than others.  You may have escaped it thus far, but eventually it will get you.   The question is this, when tragedy strikes, what will you do with it. Will you allow it to destroy you, or will you turn that tragedy into triumph??

All of us are hurting, have hurt, and will be hurt.  For many of us, we suffer in silence as there is no venue to share our pain.  Hopefully, everyone has someone to lean on, cry with, scream at, to help them cope.  I, on the other hand, have had thousands of people to share this journey with thanks to the worldwide web. I have often spoken about how Caringbridge saved my life, and I believe this with every bone in my body.  I could cry out in the middle of the night while sitting in Evan's hospital room, and someone within minutes would send love my way, from somewhere in the world.  But, if you didn't follow along, there is no way to comprehend the journey.  I had friends who said to me they could not follow along, it was too painful for them, and  I would think to myself, hmmmm, too painful for you, too bad I have to live it.  This disappointment stays with me to this day, though I am trying to let it go, really trying.

Some people will never forget the journey, even though they have no idea where we have gone with it since we lost Evan.  And boy have they missed out.  And ultimately it is difficult to catch anyone up at this point.  That is probably the biggest reason for me blogging. I have grown accustomed to sharing my inner thoughts out loud. It is healing for me, cathartic as some like to say. I need this outlet for my mental stability, which is really the only part of my life that remains unstable three and one half years into the journey.  This part of me I am not sure will every heal. The anxiety that plagues me is held at bay at times by the small amount of Lexapro that I wish I didn't depend on. Alcohol and food are not helpful at quelling the anxiety, which is a good thing I suppose. But writing, exercising, my mommy life, reaching out to others in need, and the work I do with Evan on behalf of every patient that will be in need, are really the only drugs that work. I am trying to allow husband time and friend/socializing time to find a place back in my life, but these areas remain difficult for this grieving mother.

On Evan's Heaven day, I made the decision instead of wallowing in my own self pity to reach out to others in need, just like I do most days through the work of the foundation. And darned if that wasn't the ticket to taking what could have been a horrendous day to being a beautiful day.  God's Graces continue to find their way into my life.  Alaina and Evan's Birthday was spent working on Alaina's 13th birthday gift, which was ripping apart her room to get ready for the little makeover she asked for.  Evan I knew was having a hay day up in Heaven, no worries there.

And today, being part of the first annual Be The One Run here in So Cal, was amazing to say the least.  If it wasn't for Alaina's running team coming out to support us, and two high school BAHBAD Club members, only one family joined us, long time water polo friends.  No BAHBAD volunteers, no other friends, no CB fans, and most disappointingly, I have not heard from one immediate member of my side of the family in regards to Evan's tournament, his Heaven Day, his birthday, or his run day, except for one. GROSS to say the least.  I know we are all busy, I know exactly what that looks like, so perhaps i will send a save the date for next year to our So Cal entourage, to please come to either Evan's Annual Dinner/Silent Auction on Saturday, October 22, 2011 (in the evening, and outside by the way)  and/or the Annual Be The One Run, which I will assume will be Saturday, November 5. There it is, SAVE THOSE DATES.  If you are part of our new life, if you have any commitment to our family or the cause, I am asking that you commit to joining us one year from now please.

Big sigh!!  I had to get it out. I know who has thought about us, you showed me with your FB, CB and Blog posts, texts, emails, letters, phone calls, hugs, donations, and efforts....am I forgetting anything.  If I didn't thank you yet, know who appreciative I am.

Today I met families who lost their loves ones this last year.  I know their pain.  I know that all they needed from me at the moment was a big hug and for me to ask them to tell me their story.  I did tell them that   time is their friend if they allow it to be.  That in time you will learn to tolerate the pain and the yearning.  I also suggested to all of them how healing the cause has been and if they could just once a year, to honor their loved one, host a donor event on their Birth or Heaven Day, and never ever let anyone forget. To be part of giving life because you learned from this journey, and to not let your loved one's suffering be in vain.  And I saw a glimpse of brightness in their eyes, such a beautiful sight indeed.

Every day I am that I am praying the Novena, I am seeing the Graces of God come to fruition, and still evil wreaks havoc with my soul, not allowing be to find forgiveness for those that continue to hurt me and my family.  I will be triumphant.  I will not cower down and allow evil to win this battle. Evan's Mom will succeed and hopefully she will have an army of warriors in tow.

Let's see what tomorrow will bring.  Mary had her first snow in Indiana.  Took her a half hour to shovel the snow off her car.  Hmmmmm, I think my Cali girl will be happy to only spend one winter in the midwest.
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Evan's Day

I hate anniversaries, that one day of the year that you must remember that particular person, thing, event.  Huge guilt if you forget, huge relief that you got off that facebook post or email or text or God forbid phone call or note to the person on time.  But this anniversary is by the far the worst day of all, remembering that three years ago was the last time I touched, kissed, smelled, and gazed upon my perfect boy.  On the other hand, I love every note, text, call, card, email and hug I have received reminding me you too will never forget my vibrant boy.

Today is also a day of HOPE and PEACE.  We had HOPE for Evan due to two strangers donating their baby’s cord blood.  We have peace knowing Evan is perfect and healed and wreaking havoc in Heaven, the one child of mine I don’t have to spend any time worrying about.  For this I am grateful.

I am also grateful for the journey with Evan and all the families we have met along the way, as I have gained perspective most will never have.  I want to share some of that right now.  Always a dog “fan”, I wouldn’t say “lover”, but most of my life I have owned a dog.  And certainly have wonderful memories for one particular childhood dog, Mickey, who would greet me by running all the way down the street from where my mom would stand at the bottom of the driveway waiting for me.  He got hit by a car right outside my house and I still feel sadness when thinking about that day some 35 years later.

When my fabulous adult boxer dog Hurley passed suddenly this summer, a wonderful end of life, just like Evan had, my family immediately talked of getting another dog just like Hurley, as he gave a lot of love to each of us including Evan. Once again I knew how lucky Hurley was going to Heaven to spend eternity with Evan, lucky dog!!  Anyways,  Riley came along a few weeks later, similar marking as Hurley, after a long internet search by Alaina Baby.  While they all wanted him, I was the one in charge, and I took my job seriously, having our dog trainer out not 12 hours after we brought Riley home. 

All other puppies I have owned, and there have been many, I have absolutely NO recollection of that puppy phase, being to young or to busy, getting Hurley when the twins were only toddlers, I don’t remember anything at all.  This time around, my little Rye Rye is my baby.  He slept with us as a puppy, now by the side of my bed since he takes up too much room.  I would find myself outside in the middle of the night with him, and instead of complaining, realizing how lucky I was to be able to experience the quiet and beauty of the night sky, something I had not done to this intensity since I was camping as a kid lying under the stars as my dad taught me about the constellations. Wonderful memories.  Or in the early morning, when not running from the house to the car, when I could literally smell the fresh start of the new day, hear the waves a few blocks away,  listen to the birds chirping, paying attention to the beauty of life.  And now that we can finally take him out in public, shots all done, the hikes and park adventures are more fabulous then I could possible communicate in writing.  To let him off his leash to just run and romp like a fawn through the bushes and tall grass, to chase rabbits and birds, to smell EVERYTHING, to have his company when my human friends are not able to join me, all bring me so much joy, joy that I don’t believe I would be privy to without this new perspective. 

Just returned from mass celebrating All Soul’s Day, a short, but perfect message to start this day.  Going to do a little exercise and then head down to Evan’s Beach to begin our Novena with a few close friends and Mary on the phone.  Today is Evan’s day. Today we will drink Izzes and have his favorite foods, chicken nuggets and French fries, and today we will celebrate the grace God has given to this grieving mother to be able to take our tragedy and help prevent others from suffering like us. All because of the perspective God and Evan has graced us with.

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Fear, we all live with it but few of us speak of it

Let's finish yesterday with Alaina and my Chargers.  When I finally showed up to the course, Alaina hugged me and told me she didn't feel good.  I told her to focus on the one thing she would try to improve upon today, her one goal.  Lots of hugging and loving before the race, which I loved. And off she went.  She held toward the front of the pack, still behind two teammates who she runs side by side at workout daily.  As she was running, I was again remembering how blessed I am to have such amazing kids.  That these two want-to-be athletes, had indeed produced athletes simply by instilling them a work attitude that we follow as well, and at the ability to commit to whatever it is they desire in life, and of course we had to make sure we got them there. This young lady has amazing running talent, which neither one of her parents have nor desire to have.  At the end she gave the sprint of her life, and beat another runner, indicating to herself and all of us that she held back.  Well, next week we celebrate Evan in the Be The One Run which will be a training run for her, and then she has sectionals.  Place accordingly or go home.  We will see.

Chargers pulled it together and took down good looking Vince Young and the Titans, thankfully. No heads on chopping block today, although the special team's coach should start packing.

And now on to the Fear.  Night before last I had a horrible nightmare that really shook me.  By the way, do you every have a wonderful nightmare?  For those of you that have followed Evan's Journey on Caringbrige, and if not, I do suggest you go back to day one just like reading a novel.  My entire life I have been afraid of dying, the unknown even though as a Catholic I had the belief in Heaven.  I would get sick in the pit of my stomach when I thought about the end of my life, and my big thing and still is, I hate seeing balloons fly away.  I always thought about something I cherished tied to those balloons, and how that thing was going to be gone forever as those balloons drifted off into the sky.  YUCK, I hate balloons!!

Anyways, when I lost my sister to breast cancer, my feelings about my death didn't change.  That was back in 1993, hard to believe.  When we lost Evan, talk about a total change of heart and perspective.  I could not wait to die. To be in Heaven with him, although I knew I would  have to spend some time in Purgatory unlike my perfect boy to repent for my 44 years of sins.  Every mother that has lost a child has the same feelings on death, we have one foot here on earth, and one foot in Heaven with our kids.  Which side we are on doesn't matter to us.  Although, almost three years after kissing, smelling, smothering my beautiful boy for the last time, I know my place is here, loving and guiding my husband and children for the long haul.  That took a long time for me to finally realize and to really believe.

So, back to the nightmare.  I have told people, many people, that God forbid I ever need a bone marrow transplant, because there is NO WAY in HELL I would every have it.  That being said, I have seen so much HOPE from transplant, but I have also been privy to the horrors of transplant, and in the month of October alone, losing two young men to complications and another women continuing to fight the complications that threaten her life.  I digress.  Remember that my sister died of breast cancer and that since the age of 21, I have been plagued by breast cancer scares in my own lumpy bumpy cystic breasts, and every time I am forced to come back for another test, and then wait for those results, I swear I am done, that I am going to have that bothersome breast tissue removed so I can take away one fear and the risk of this cancer from stealing me from my family.  So, yes, the dream was of me finally hearing that I had breast cancer.  And of the impending chemo and treatment that I would have to put up with to fight for my life and more importantly, my family's life.  And I didn't want to do it.

This fear sits right on the surface of my core, as I watch too many friends and friends of friends fighting from this horrific cancer beast, and knowing and hearing their words about the struggles they endure.  While everyone says to me, " I don't know how your do it", in regards to Evan, my answer to them is always, I am so glad you can't imagine. And by the way, I don't know how these people do it, fighting for their lives, poisoning their bodies and putting up with the effects of that poison,  and by the way, I don't want to do it!!  Fear, I abhor you.
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My grieving mom friends and I wish we deserved a hall pass from future tragedies in life. Like, hey, haven't we endured enough agony. But, we know better than most this is not the way it works and have seen too many who continue to get hit by the evil in this world over and over again.

This week I will be making an appointment with my breast specialist, to once again talk about ridding my body and mind of this one fear.  Hmmmm, wonder what the outcome will be.