Well, can you??

If you haven't read my last blog, I suggest you go there before you come here. I had every intention of taking today's blog in a different direction, and perhaps I will veer that way after I am done sharing my current thoughts.

"Well, can you?" is a very serious question as I just went to a CB friend's site and read the following....

Ann is making her way...just not here with us much longer. The infection that is in her blood is now spreading thru her body faster than antibiotics can fight it.

Yes, this means what you are thinking and what I am almost unable to type- our girl is preparing for heaven. She is most comfortable right now and in and out of chatting. The stories she shares are of her memories and they are happy ones. These ease our pain and sadness for only short moments, but we feel it is once again Ann's way of making us feel better.

We have had to tell our children their oldest sister and fearless leader is not coming home. As I sat in her room last night I felt so helpless.

We are broken..

So I ask you this, "can you imagine" and "can you see the beauty in death"? Both questions that I hope you never have to live. Of course I knew it was time for me to write following post to my CB friend....

As a family that has been there, I share these thoughts with you....
I hope they have brought in another bed to put next to Ann's so you can all get in bed together. I hope that child life has brought in hand molds so you can get your sweet girls hand's cast and that each of you have one. I hope you will ask for an ink pad so you can get your girl's hand and foot prints, and a very clear finger print, as I have a friend that makes beautiful jewelry to keep on your body forever. I hope you will take her tshirt and place in a zip lock and do this for as many days as possible so each of you have one in your possession. I hope you will take a lock of your perfect girl's hair again for each of you to have. And I hope you have time to consider getting in a professional photographer or special friend to take some final family pictures of all of you. We didn't know it was Evan's last day but we have pics of each of us with him, our family, our hand's stacked like in a cheer with Evan's on top holding Alaina's and the one that sits over my bed, taken with us all at the U in Evan's bed, of our feet only. A black or white cloth to cover your bodies. I HATE that I have to share these thoughts with you, but I am forever grateful to have these things now that Evan is in heaven. After your girl makes her transition, be sure to take all the time you need as a family, and that you have the opportunity to give your girl a long, slow bath with warm blankets and place her favorite clothes on her, and that all of you are able to hold her until you are ready for the worst part of the day, and that is leaving your sweet girl in that hospital room. I am so sorry Jane. I know that you can't imagine, but you will tolerate this new life. And people like me will be there to support you each and every day. Do what feels right to you, Ann will make the transition only when you are all ready to allow her to. I love you my friend, g

I have nothing else to say now that I have this out of me. See the beauty in your day. While we are all human and will continue to make mistakes, continue to try to be Christ-like each and every day. Evan and God has given me this huge task, and it took me more than three years to embrace it. Perspective....g

If you want to see Ann's perfect face, visit her CB Site

Can you see the beauty in death??

I would venture to say your answer to this question is "no", are you crazy, but perhaps after spending the last 3 years and 9 months on this journey with us your perspective is different, like mine, and your answer is the same as mine...."YES".

I have followed the journeys of dozens and dozens of families who have lost a child, and dozens more of families that have lost a mother or father, husband or wife, sister or brother, along with every day tragedies where death occurs with no notice. And I will tell you I am blessed to see the beauty in death.  In the last few weeks, I have had three friends lose their spouses. A caringbridge friend shared that 24 children with the same disease her son fights every day, metachromatic leukodystrophy (MLD), died last year alone. So much tragedy Evan and God have brought into our TV screen of life, and I am forever thankful. WEIRD, I know.

Our CB friend Linn, (linnboden), who lives here in San Clemente, died yesterday two years post BMT, from chronic lung problems, most likely GVHD.  Her adoring husband of 42 years posted the most lovely words about his wife's end of life and thoughts on it, that included tears and laughter.  Steve and Linn taught me so much about faith in our God. And if you get a chance to read any of his journals, I will tell you that I thought for a long time this was a couple that recently married from the way Steve wrote about his bride.  Linn is perfect, whole and healed now.  Steve wrote this the day before her passing: Our 42 wedding anniversary is 2/2/11. I am so thankful for everyday of our time on this earth together. I did tell Linn, "save me a place next to you in Heaven". Just wait till Linn flashes that million dollar smile at the saints.



A new CB friend emailed me yesterday and we have gone back and forth a few times since.  She found us somehow on the CB newsletter she gets.  When she saw Evan's face she had to know what happened to him and here is first email to me....

Hi Gina,

So I am on day three of reading through your journey that began that fateful day in April, 2007. I have wanted to stop reading and e-mail you soooo many times but I just couldn't tear my eyes away! I have laughed, I have cried, I have sobbed and I have been so very angry (at death) in these last few days; however, I can't even begin to imagine what you went and must still be going through. I CANNOT IMAGINE! I would never tell you I "get it" and honestly, I don't ever want to. 

I don't know if the e-mails have subsided in the last two years, I hope not, but I was thinking that if they had, you could use a new CB friend:-) Alittle about me: I am a single mother of a two year little girl named Isabella Ricky; Ricky after my dad that passed at 44 of esophagael cancer (11 years tomorrow. Wow, still seems like yesterday!) who she unfortunately never got to meet. I live here in Minnie (about 45 miles south of Minneapolis) and have most of my life. I did move to Massachusetts and then to Jersey a few years back (I know, crazy right...to go from Minnesota nice and cold, to colder, and then to "Jersey Not Nice".) I had a very hard time after my dad passed because he was the only constant parent in my life; my mother and I have gone through extremely bad times in our 35 years together but my little Bella Boo and a lot of forgiveness brought us together and we have remained close for three years now. She loves loves loves being a grandma and that makes my heart happy.

Enough about me! How are you doing? I don't want to read ahead (I'm on journal entry page 201) so forgive me if I ask stupid questions! I would love to get more involved with anything I can but I have no clue where to look or who to get a hold of around here to donate bone marrow, kidney, etc. You probably put info up on CB but I wouldn't know what page to go back to; ugh...should've written down this stuff as I went along but like I said I was so enthralled I couldn't stop reading and sensible thoughts just weren't crossing my mind. Dishes, housework, homework, Bella, and sleep have been neglected these past few days as I have been trapped in your world, in your painful journey; wanting to break free but knowing wild horses could not of stopped me from reading through page after page. I did have to stop and give my mind and heart a break when I read about your last moments with Evan because I needed to hold my child and tell her how much I loved her and try to make her understand that I was crying because I was so grateful for her but sad for someone else as well; plus I couldn't see through the tears to read anyway. 

I laid in bed last night thinking of all the things I was going to say to you in this letter but do you think I remember any of them?!? I can say this: I understand loss, I may not understand your loss, but I understand loss. That being said, I was so very very angry at God after my dad died and I unfortunately lost my way BIG TIME; ended up addicted to drugs, or what I refer to as "the depths of hell," and pretty much homeless in Jersey. Bought a bus ticket home to MN, had nothing left but my clothes and entered rehab. Been sober for four and a half years tomorrow! Anyways, back to the God thing...the best advice I have ever received in my life was from a lady that I lived with in the halfway house..."Stop telling God how big your storm is and start telling your storm how big your God is." I try my hardest to practice this in the trial and tribulations of my life. However, I will say this, I hate it when people say "it could be worse, you could have this and this and this happen to you" but that doesn't matter when I'm having THIS (whatever it may be) happening to me. It is my pain and the thought that other people are worse off does NOT make me feel better! 

You are right Gina, the pain only dulls; it sadly never goes away. Maybe you didn't get the miracle you asked for, maybe it was because Evan was that miracle all along. You were lucky that God chose you to be his mother and WOW he was lucky too! I do have to say that in my heart of hearts, I know that I could not go on if I lost Bella. Is that weak? Probably. But I had three miscarriages before her and decided to get my tubes tied because after having her I knew I couldn't bear the pain of losing another one. Like you said, you have no desire to go on without your child in your life. I couldn't do it knowing there are three more up there waiting for me, their mother. I, like you, have always been the strong one. Losing her would be my demise. I don't know how you have done it; I don't know how you have done it with such grace. You are a remarkable person, a remarkable mother and if someone asked me to define hero, I would tell them your name, Gina Cousineau, Evan's mom.

Well better get back to your journal! I'm having withdrawls. Take care Gina. I hope to hear from you someday:-) 

Maigen from Minnesota

P.S. Evan was perfectly beautiful.

And her email today....

Just wanted to drop you a line and tell you how healing it has been for me to read your journal today on the 11th anniversary of my dad's death. I dread this day every year. I get so depressed and moody about three days before and every year I still think "what is wrong with me????" And then it hits me like a ton of bricks and I remember that stupid anniversary date is coming up. This year was different because these past three days I was feeling your pain and in your world, so I never got a chance to feel my own. For the first time in 11 years, I wanted to get out of bed on this day because I needed to get back to your journal to see how YOU were coping and I am (for lack of a better word) grateful to you for that. I hope that makes sense to you. Know that I would obviously much rather suffer through this horrible day if it meant this tragic loss of Evan didn't exist. But it does and I just wanted you to know that because of Evan, on this day, this girl, for the first time is remembering how blessed she is that she got her dad for 25 years, instead of thinking how unfair it was to lose him.

Have a great weekend Gina!

M.

P.S. my favorite quote...."I never knew how much love my heart could hold until someone called me mommy."

I love that strangers are still moved by our journey and are able to gather "perspective" on their own lives.  Meigan's words are remarkable and I will be forever grateful for her taking the time to share them with me, us.  Wow, Meigan, you didn't just make my day, you made my life!!

g

Top 10 Things I am appreciative of in 2011....

1.     People who include Evan’s name with our names in cards, notes, letters and such.  He is and always will be a very integral part of our family.  Do not leave him out please.

2.     Waking up every morning and being able to see the beauty that surrounds me.

3.      Being sick and feeling lousy, but thankful to know that it is temporary and I will be up and running in no time.  (Got a good case of the creepy crude right now)

4.     Having friends that I can bitch and moan to about people and circumstances in life who just allow me to vent without judging me or feeling like they have to play the devil’s advocate.  While I try to fight it every day, I am human and very aware of my faults and flaws.

5.     My husband and kids.  All of us who have lost children know that without them we would have no motivation to exist.  We all can’t imagine how our friends without other children do it.  So thankful that two young couples who lost their only children when we lost Evan have adopted or are pregnant now.   There is always worse loss than our own, unfortunately

6.     Knowing my God has carried me through this tragedy and has allowed me to have great perspective about my temporary human life vs. my eternal life.

7.     That through my own suffering I have adjusted how I plan to spend the rest of my life on this earth. I will never forget what I have witnessed from the moment of Evan’s diagnosis on May 1, 2007.

8.     The gift of strength and determination that I was born with, some call it bitchiness.  Without it I would not have been given the great gift of the cause and been able to be part of saving lives, the good part, while dealing with all the bullshit surrounding it.  If I were any less of a person I would have thrown in the towel long ago.

9.     Thankful for every single movement people have made to love and support us from the moment of Evan’s seizure on that pool deck through today.  Some of these movements very vivid, others I will never know about, but I do know it takes a village to help a family through tragedy and we have an amazing village.

10. To those of you who didn’t need to hear “thank you” or “I’m sorry”, as even now almost 4 years from the day our lives turned upside down, I am still incapable of tying up those loose ends in my life.  I am still way far from being perfect, but happy to know that someday I will achieve that state of being.

More thoughts to come, g

I've been voted off the island....

Well, actually I took myself off the island.  It is interesting that just the other day my friend Tara and I were talking about Survivor and I mentioned that B.E.D. (before Evan's diagnosis)  I was considering trying out for it.  She was quick to say that I would have probably been voted off immediately unless they decided that my leadership skills would be an asset instead of a threat.  Well, in real life I have this same effect on people. You either like me or you hate me, and the majority of the families in the ALD world want nothing to do with me, possibly because I want them to pull their heads out of the sand, well actually I was thinking about another area, and take responsibility for stopping this disease ourselves.  The amount of ignorance that exists in our ALD families, and by the way, those that are reading this blog are not the ignorant ones, is exactly why genetic diseases like ours will continue to proliferate.  And I for one am done.  The lack of support I received from my ALD family shocked me enough to walk away.  I took myself out of a Leukodystrophy Facebook group as well as one I started that was a spin off of ALD families only. So we are on our own. Our family has made the decision to stop this beast and it is over for us. There will never be another ALD child born in our family, unless like me, a spontaneous mutation occurs. We have made the decision to be pro active and not just sit back and see what happens. We have full knowledge of what this disease looks like in 2011, what we can do about it, what the near future looks like, and have taken action.  We have killed the beast in the Cousineau family and future generations, instead of allowing others in our family to suffer not only like Evan had to but like each of us will for the rest of our earthly lives without Evan. Enough said.

I know if I would just fade into the background of life that I would not be feeling the pain I do.   I know that I put myself at risk every single day in the ALD world, not any more, as well as with the work of the foundation.  And I do so in every day life when I make decisions to give my unsolicited advice to those close to me, because I am such a fixer and want to solve the problems of the world, and that advice is not always wanted.  I am doing a better job of not giving out advice unless I am asked this new year, one of my resolutions in 2011. So instead I have been given the opportunity to be paid for that advice once again, a great gift given by a friend without even knowing it.

My friend Elaine, who I have know for over 17 years as fitness professionals, was a great source of support during Evan's fight.  She is now in her own fight, or as she tells it, "Jesus is in the fight for her".  I have been contemplating what I could do for her for months now, and the knowledge of that gift was laid out to me in early December when I felt that Elaine and her husband were struggling financially due to their life crisis.  I knew immediately what I could do to help, and that was set up a donation site just like the one that was set up for our family as soon as Evan got sick. A non-profit called Helping Hearts for Friends are able to funnel donations for families in need to pay their bills and the donors in turn get a tax deductible donation for their good will.  Once that was done, Elaine asked if I would lecture on nutrition to our local Assisteen's club the first week of the year.  I easily accepted, though it was not something I had done since B.E.D.  But I soon found out like riding a bike, I easily jumped back on without missing a beat.  The girls and their mothers enjoyed the lecture, which was titled "Moderation is the key to all aspects of life", and that night was I was given three more gifts.  The first was a young lady who knew our family and shared her personal struggle.  I loved that she felt connected enough to me to share.  Then a mother introduced herself as a grieving mom whose son had been bullied and took his life 1 1/2 years ago in our town. While I had heard their story and desired to reach out, it was not until this night that I finally did so.  We are still trying to plan a get together, but she knows I am here for her.  And lastly, I have my first client, since B.E.D., and I love that my solicited advice is welcome and can make a difference in the health and happiness of another human being.  As I continue to find ways to help Elaine, I continue to receive great gifts in return. Thank you Elaine for allowing me to be part of your journey.

I have a lot to share about the faith journey I have been on but need to call it a night. Alaina and I just finished watching the Bachelor, yikees, and now House Hunter's International is putting me to sleep.
I hope to be back later in the week. Thanks for listening.
Gina

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