Starting the New Year with a broken heart....

I am home alone on this New Year's morning, and glad for it. Mary spent the evening with a close college friend, and Mark, the kids and friends in tow headed off for a day of skiing/snowboarding in our local mountains.  I am home alone, in Evan's house, and I could not feel more comfortable propped up in my favorite place on my comfy couch with my USC blanket, an amazing view of the ocean flanked by palm trees and blue sky, and my thoughts.

I have been hibernating in the comfort of my kids for the last two weeks now and loving every moment. I can clearly remember when the three of them were little I tried to fill their vacation time with stuff, as our little ones always needed lots of stimulus, but now, with two teenagers and an adult in the house, we can just hang.  Like Evan would always bring about a bit of peace to the three some, Mary does the same thing to the twosome.  And instead of being so excited for school to start, I am going to have to kick my own ass to get motivated to move on in the new year once I drop Mary at the airport on Tuesday morning.

I am missing my friends too whom I socialize with mostly with exercise. So with the holidays, like the majority of the world, exercise was not a priority to most of them and therefore I have missed them greatly.  I on the other hand continue to practice what I preach, exercising most days of the week and avoiding the food that surrounds the holiday season. I refuse to start the new year 5 pounds heavier and feeling worse than I already will missing my kids.  Which brings me to my next thoughts.

I am strong willed and some might call me aggressive and/or pushy.  As I wrote in my last blog, that "gift" from God is how I have survived this journey of mine called LIFE, and I am thankful for it.  I am part of a closed group on FB for Leukodystropy families.  I recently felt compelled to branch off from this group with an adrenoleukodystropy group as well.  Well you would have thought I killed someone, as the rash of negative comments I received focusing on why I think we need our own group, and how we can forget about the other LDs and so on was RIDICULOUS.  I consider myself a logical person, even in midst of chaos, and could not believe what I was reading.  I forged on and started that group which will have 100 members by the end of this week, and it has given us a forum to share our journeys, how they began and where we are, so that we can now see who we want to communicate with and what our plan of action will be.  Even within our group, I am still shocked at the stories, the ignorance that has allowed this disease to continue through the generations, and hope that we will begin to give those who wanted to remain ignorant a voice to stop the train wreak.  Someone has had to take charge, and I guess it had to be me. Still, I might choose to walk away from the group if I feel that people are just there to bitch and moan and not take action. We will see.

Over the past two weeks we have had some serious conversations with people close to us about "taking action" in their own lives. Some advice asked of us, and other advice given even though they didn't want it.  It has caused me to reevaluate my own life and I posted this comment on FB this morning...."Every not see your true self because you were too busy trying to help/fix others. Had a revelation last night as the clock struck midnight. I'm running so I don't turn into a pumpkin this new year. Wonder if I will make it. That is how I went to bed last night, very disappointed in myself. This morning I wake to the most beautiful day here in San Clemente, and a plan of action." Well, reality sucks and while I have made plans to work on my one fatal flaw, and it can be fatal, causing harm and death to a part of my life, the task will be daunting, and for that, I begin my next 54 day Novena today, knowing that with the help of the Blessed Mother, I will find peace.  (Anyone else who is interested in petitioning to the Blessed Mother for your own requests is welcome to join me.  I can send you an online version to follow and offer you advice, there I go again, on how this works.)  

I have always been a take charge kind of girl. A gift from God I now realize. And I will tell you that  my entire life, I have managed to get what I wanted, but until horrific tragedy struck and left me lying in the road defenseless and dying of a broken heart, I didn't know why. Mary and I have had many a conversation about where people get their motivation in life.  Are you born with it, is it how you were raised, was it because your parents whispered in your ear every night that you would succeed. But after our little study on people we know, we are stumped. Great parents have naughty kids, kids who grew up in dysfunctional families are amazing individuals, and so on. There is no rhythm or reason.

Entering our 4th year without Evan, I am feeling strong. As the kids and I climbed from the trail to the paved path yesterday, I met up with another greiving mom.  She and I talked and walked a bit and while we barely know one another, we are kindred spirits who can say things to one another that no one else would dare.  I told her how thankful I was to see her and my desire to share a scenario that took place this week, that could only be shared with someone who had suffered the ultimate loss of losing their child.  I will tell you that due to the lack of seeing my friends, I really got no Evan love these last few weeks, which pains me. No one to ask "how are you doing", no one to just look in my eyes with that knowing look of "I can't imagine", no calls/texts/emails/facebook posts to mention Evan either. I do take that back. My cousin emailed me to share her daughter's thoughts on Evan and another dear friend, a greiving mother herself, gave us an amazing gift that we were instructed to open as a family on Christmas Eve that was all about Evan. Thank you to both of you from the bottom of this mother's broken heart.  Now on to the story....another dear friend was sharing the tragedy of knowing a family member would lose his cancer fight.  While she talked about the scenario and how things have played out, I could fill in every blank in my mind, as I have been there and so was she when she went down that road with us.  (Mind you, I am sharing this so that if you are in this situation, you will really think before you share with someone like us, and just make one little adjustment, and by the way, while I am going to try to not give out unsolicited advice from this day forward, you come to this blog and choose to read it, so you are in essence asking for advice. Enough said.)  The pain in her heart could literally be felt, including her agony over the impending loss and how this family would cope, and what it would look like, etc.  The one line I wish she would have spoken could have gone something like this, "I know you know exactly what this looks like. I am so sorry for the pain you are forced to live with every day....or....I'm not telling you anything you haven't had to deal with....or....I am that much closer to trying to understand your pain.  I just needed some acknowledgment that she didn't forget, even for that one moment, of what we have to endure every moment of every day. And while I am strong, I still miss my boy with every ounce of my being, I am just learning to tolerate it more and more. (No apologies my friend, my love for you remains deep.)

And back to that ALD group, here is what a mom in the fight, and losing it by the way, messaged me after starting the ALD group...."you have great ideas gina and are a force to be reckoned with, but come on like a hostile takeover to some people who are in a different place than you are and have found a refuge somewhere safe. we all want to do something but we are all at different levels of ability. just don't come on so strong and maybe be more understanding to parents who are in the thick of it like you were with your son but are still fighting daily to care for very sick kids.  just my two cents. i like your forthrightness, always have. feel free to return fire, lol."   My response...."If you were to read all I have written, I have said out loud at least twice, those of you in the fight, stand down, we on the other side of it will fight for you. you are to focus on the fight, there is nothing else for you to do but love your boy and advocate for him. something those of us on the other side cannot do. I do wish you and the others would stop judging my intentions and just realize where I am in the journey. My son is dead. I can't smell him, touch him, smother him with kisses, care for him. nothing. all I can do is try to save someone else's boy."  And her response to me...."i know, its just that we have to watch our children go little by little for a long long time, slowly destroying us too, our families, our careers, homes, finances and do all of it completely overwhelmed and exhausted as our circle of support dwindles to nothing so we have little energy after awhile. to be honest between you and me i regret doing the transplant and don't feel like i had enough time and information beforehand.  it was pure chaos but to condemn my son to life like this is abhorent. i am truly sorry for evan. he's in the video. i've done everything i can do for now and i am sorry if i hurt your feelings. i admire you greatly."

Were my feeling hurt? You bet. Was I pissed off that this ALD mom forgot what we went through? You bet. Am I grateful that my son is healed and perfect?  You bet.  And again I will say what I say to every person I share our journey with....We will all have tragedy in our lives, some greater than others, the question is, what will you do with it? 

I choose to never forget. I can see the great blessing that have come from the tragedy and suffering, not only for Evan, but that our entire family had and has to deal with. God has honored his promise to us. My God is a god of Love.  And while evil on this earth will continue to try to destroy each and every one of us, my God is there to pick me up and get me through this life until I earn the ultimate gift from him, which he suffered greatly to give us, eternal life.

So, in this new year, I am committed to each and every one of you with the work of the foundation to make sure there is a donor out there for you should you ever be in need, and to the ALD world to try to do something to help stop this beast from destroying perfectly healthy individuals, and to dip into the world of palliative and hospice care for children, which is lacking right here in my backyard, and all the while, taking care of me, my family, my friends and people who come into my life that can benefit from my aggressive and pushy demeanor.

Happy New Year to each and every one of our entourage.
Evan's Mom