Words continue to flow....

Sitting on a plane, which is the last place I want to be. Happy to accompany the girls to Indiana to play in a national championship tournament, the Turbo Cup, for water polo, but wishing I was home. For years after losing Evan, I traveled a lot. The running away from reality was good. I needed companionship, and whether I was home or away, people were there for me each and every day. Now, four years later, I desire my alone time. Very odd for me, but I started to feel this way at the start of summer, just wanting to be with my kids, and in Evan’s house, which became more apparent after I realized that Mary would be leaving us. And now, as we made it through another two day anniversary period, with Evan’s Heaven Day and Alaina & Evan’s Birthday, being alone remains a strong desire for me. I started the week feeling the need to be contemplative and quiet, so instead of rallying my friends to workout with me, I walked. Miles and miles of hills, with my doggies in tow, taking in the beautiful community I am privileged to live in, and just being. And I feel good. No desire to talk out loud, just allowing myself the release of sharing my inner thoughts though words, the words I so relied on through the fight with Evan and beyond.

We received so many nice words and sentiments from our community, via caringbridge, facebook, email, texts and good old phone calls. It was tremendously heartwarming for all of us to share in. Evan and his journey has made a huge impact on many lives now and to see his legacy unfold, makes this grieving momma know we will be okay. Not where WE want to be, but tolerating the life that we are forced to be part of.

Out of all the perfect words shared this week, the one remark that continues to echo in my mind, came on Wednesday from the gal that I really enjoy at the blood donor center. She lost her husband a few years ago, and when I told her it was Evan’s anniversary and how surprised I was at the pain surrounding the fourth year, she was surprised. She told me that year two was awful, and I agreed. Our reasons were exactly in line, as year one you are still in shock, year two, the fog has lifted and reality just slaps you in the face. But for her, losing her husband, it is better now. While I was disappointed in her thoughts, I know she has adult children, and if she for one moment imagined for a second what it would be like to one of them, I think she would have never said her simple words to me. And while I do not wish to diminish her loss, as I have too many friends who have lost spouses and know of their pain, if we asked the question on “Family Feud”....survey says, “greatest loss is losing a child”!!

And while I preplanned my potential crash and burn, it never came. I actually suffered much more leading up to the anniversaries with the emotions of Mary’s wedding week, and by the time I got to therapy on Monday, I was calm and doing well. My therapist, while surprised by Mary’s wedding as I sure the last we spoke was in the spring when Mary and Travis were just being the courting process again, reassured me of where I am in the grief process. She always acknowledges the tremendous loss and when I leave the session, I always feel at peace. And while so many of my friends have made comments about how much I will miss Mary, I actually don’t miss her at all. It may sound crass, but leaving her at USC in August of 2005, was a very emotional time for me, as 18 years of having her under my roof was a tough pill to let go of. We immediately took up where we left off and our calls each and every day, for nothing and everything, made me realize nothing would change in our relationship of mother/daughter/confidant/ and best friends. Even when it came time to head to Minny with Evan, I had no idea that two weeks later she would end up staying after what was supposed to be just one of her many planned visitations. That summer and fall fighting for Evan, brought us closer than anyone could ever imagine. And for that I am grateful. So when she headed to Indiana for nursing school, our routine was established, and while we enjoyed each moment we had together from August until they headed to South Carolina last Friday, I am thrilled for the newlyweds and am loving watching their new lives unfold together.

When I shared this with my therapist, I bluntly told her that there is no reason to feel sadness, as I get to share in Mary’s life still, but on the other hand, Evan is dead!! I like this shock factor and I use it when the mood strikes me with certain people and under certain circumstances. While I totally get the emotions of changes in our lives, and try to honor those feelings in those that confide in me, I have serious perspective on life after our journey with Evan and will always see things differently than most. And that is a good thing. I will never forget. LIke a soldier who has been though the battle, watching death and destruction on a daily basis, we too watched death and destruction on a daily basis on the pediatric BMT unit that the University of Minnesota. And continue to watch it secondhand through families that share their journey with us. This will never go away. The horror that exists in this world is rampant. I am always amazed when there is actual quiet in my life, when no one close to me is suffering. My entire life, I felt like I have been skating on thin ice, just waiting for the big tragedy to unfold. And after Evan, while I hoped we would see no more, I now knew that this will never happen. So instead, I try to relish the times of peace and happiness, and allow this to be the time for me recharge and get ready for the next battle. I know my place in life now. God and Evan have allowed me to see things most people will never see, to help others the way most people would never be able to do on their own, and to have the where with all to continue the good fight, if just to save one more person, or give one moment of hope or peace, I am in, 110%, until my job is done here on this earth, knowing eternity will be my reward.

For years I wore many bracelets in honor of people we knew in the fight. At some point there were too many and I carried them on a loop on my handbag. Today I begin the process of remembering those in the fight. While there is no order to the process, I am sharing the wristbands of those who have lost the fight. November will be my month of contemplation. Starting with Evan’s anniversary and birthday, our 54 day Novena, and now to remember the journeys of others we had the privilege to know personally or though the sharing of their family members.

So I randomly grabbed “Cure Cadence”’s purple band out of my bag just now. Sweet Cadence. When on the BMT floor, you meet families and their children by the picture and decorations on their doors. Many relationships were formed while heating up some food, or getting some water in the little kitchenette, where you could end up talking for what seems like hours, in the wee hours of the night. Lots of laughter, hugs, tears, fears and realities were shared in that little kitchenette at the U. If you got lucky, you might get to “see” the children as they are wisked away for a procedure, or when they finally get to leave the seclusion of their room to take a walk, wagon ride, or ride a trike around the halls on our floor when their counts are finally rising and they are getting ready to get discharged. I never got to meet sweet Cadence. We followed one another on caringbridge and I can clearly remember when Cadence was readmitted to the floor after her relapse, she was not yet two, leukemia, and knowing their time was limited. Her daddy used to play the guitar to her, and I remember another ALD mom who was next door to them sharing this. While we knew of another child to have lost their fight during this first few weeks on floor, we didn’t know them, as it wasn’t until this point that Evan finally began to take a ride or walk outside his room that we got the opportunity to linger to read every detail and see the faces of the children and their families within those rooms. Cadence was an only child, to a young couple who were musicians. We did nothing for this family other than offer prayers via CB, but when Evan’s time was coming to a close, this couple, made the difficult journey back to the bmt floor to bring us comfort and food. And the night before we lost our boy, they brought their violins and serenaded our family with beautiful music. It was at this time that Evan’s responded, as his heart rate increased as he enjoyed the sweet music along with us. Cadence was the reason we got involved in blood donation in the first place. Her parents held a blood drive for what should have been Cadence’s second birthday, and Mary and I took a ride out there. Mary was able to donate whole blood for the first time, and I was able to hug this couple whose pain I could not imagine after losing their baby just 2 months before. Lissa and Eric came to California for Evan’s celebration of life and played their sweet music once again for us at his mass. Earlier this spring, Cadence delivered her baby brother into the arms of her parents, and hope was restored for this beautiful couple. I will never forget sweet Cadence.

Forever grateful,
Evan’s mom

Evan's Four Year Angel Anniversary

Back to the land of the blogging. Read my post today on CB....www.caringbridge.org/visit/evancousineau

One moment at time....

Middle of the night wake ups and mornings where the alarm doesn’t force me out of bed, which is most of the time, are never good. Life was hard enough B.E.D. (before Evan’s diagnosis), as I already was a fear ridden momma and worried beyond what I should have for my kid’s health and safety. We all know now that I “knew” something was coming!! Now, though, idol time allows for reflection on the horror that I have witnessed and tremendous knowledge of all the horror there is in this world. I don’t have to read the obits any more like I did B.E.D., a weird fascination I had to try to see how people were dying and HOPE that it would not happen to anyone I knew, especially me, always trying to imagine how the parents felt who lost children. And now I know.

Most days I have are good, if not great. Had a beautiful day yesterday working our first “DKMS” event at Cross Fit Regionals here at CSU Long Beach. Forever in awe of my new CF community, I aspire to be able to do what these seasoned athletes can do someday. And while we had NO idea what the day would bring, as we had no advertising, just a CF owner who worked his magic and got us a booth space, 52 quality donors later we felt great. Then back to San Clemente for a graduation party, remember we don’t get invited to too many parties in our new life, and had a great evening catching up with friends. Then the early wake up call hits me in this new life that I had no desire to be part of.

And now I realize this will be part of my “Cross” to bear for the rest of my time on this earth. The best I can do is to try to avoid these times, and when they come, either try to lock the thoughts in the closet, and when that doesn’t work, come here to share. Four years later, I still am shocked by what has transpired since that fateful day we were told that Evan had a terminal diagnosis. I can remember the events leading up to being forced into that conference room clearly, and I can remember sitting in that room and hearing the message and being so strangely composed. We had been defeated, and at that moment, there were no options and I totally embraced the fact my son had only a short time left with us and I was prepared to live every second “playing with my boy until he could not play any more.” With the dawn of the new day, came the news that bone marrow transplant offered a potential treatment/cure for our boy, and then I was really scared, instead of grateful, as I quickly learned all the obstacles it would take to see if he was even eligible, as well as what it would take to get him to transplant if he was, and then, oh yes, the horror of what the transplant process was like, and best of all, Evan could be cured, but left deaf and blind in the process. On that day the devil didn’t realize that he picked the wrong momma to fuck with, pardon my language, but no other word could possible suffice in this situation.
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A CB friend posted this yesterday, and I am sharing it exactly as she wrote it, in an effort for you to feel her horror for just a moment....
Four years ago today marks the moment our lives changed forever the trauma of it all vivid in your mind because it never sleeps it haunts you I will never forget when Kevin stopped breathing and 911 working on Kevin in my living room with CPR and chest compressions while I run back and forth to the bathroom vomiting seeing your child lay there lifeless unable to help him your baby you brought into the world I remember the hospital room begging and pleading with God and begging Kevin to stay and not leave us while his lips were blue and the life gone from his eyes and the on call preacher telling us we have to let our son go words spoken easily from his lips yet filled rage in my mind leave me alone do you not understand I thought. to having to leave our son dead on a hospital bed not wanting to leave we sat outside the hospital for two hours in disbelief and shock that's what sets in to protect you I guess. all of the sudden u have this unfunctional mind that can't think or concentrate on anything some amazing friends of ours came to the hospital at 2 in the morning to drive us home I had this disorientation going on in my mind not knowing where I was even though I wasn't lost . I couldn't go in my house for days a sickness like I have never know was with me , for six months we didn't stay at home we would get a change of clothes and leave . After 6 months we came home because we knew we had too. For 2 years we literally sat and lived in our bedroom no one else knew only leaving to go to kitchen for food, bathroom, or work trapped in a prison there's no escape from.going anywhere was a task from the emptiness of the back seat to stores and isles passed by because you couldn't go down them anymore to holidays that you didn't want to be at because you didn’t feel free to grieve among each other...
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One long run on sentence from this grieving mom whose only son was stolen from her by the pediatric cancer raging in this world, so appropriately shows the horror she is forced to live with daily, and to add insult to injury, her husband has been in the cancer fight for more than a year now. For one moment put yourself in her shoes and understand how grateful YOU have to be, WE have to be.

My friend who I walked hand in hand with on the transplant floor recently emailed me and this was her p.s. to me three years after losing her perfect girl....I think I am finally at a place where I don't have to just focus on breathing in and breathing out.  I feel like I've lived moment to moment for a long, long time.  Now that my head is above water, it makes perfect sense that I would look for you :)
We all grieve differently, that is one huge thing I have learned along the way. But for us grieving moms, our lives are forever changes and FYI to all of you who want to believe that things are getting better for us, you could not be more wrong. What we have done is learned to “ TOLERATE” the reality of our new lives. We have NO CHOICE if we choose to go on living, being productive members of society, desiring to learn to laugh and love once again.

Last weekend a dad sat with us who we had not seen for years at a water polo game. He asked Mark how things were going. I knew what he was asking and I never got a chance to ask Mark if he realized what he was asking and chose to take another path with his answer, which was “yeah, the last two years have been hard, but things are finally starting to pick up”, talking about his business, not Evan. The dad replied with “time really does heal, doesn’t it”, and I wonder if it was then Mark realized what he had originally asked. I wanted to scream out loud at the top of my lungs, “TIME DOES NOT HEAL, TIME ALLOWS ONE TO LEARN TO LIVE WITH THE FUCKING REALITY THAT OUR SON IS DEAD AND NOT ONLY THAT, THAT HE WAS TORTURED IN THE PROCESS, LOSING EVERYTHING ALONG THE WAY AND KNOWING IT AND WE COULD NOT DO A FUCKING THING TO STOP IT!!!!!!!!!!!!!!”, but instead I just filed the conversation in my head knowing it would eventually come out on this blog to you.

People love to hug me and tell me “how good I look”, which I have made a concerted effort to do by the way, hoping that I am getting over it, or getting better, or moving on....on the other hand, I am learning to TOLERATE it, and I think that I managed to learn that I had to do this early in the process if I was going to survive this, and that I HAD to do it for my kids, my husband, my mom, my friends and family, my CB community, and every person who followed our journey from day one, wondering how I was going to be able to manage. I had to show them how to do this, even though I didn’t know HOW I was going to do this. The thought of ending my life, though never thinking how I would actually do about this, and knowing full well I would never do this, was a fantasy I wished would just come to fruition on it’s own, possibly like the Blessed Mother who when ready simply asked her Son to let her be done with her suffering here on this earth and she was “assumed” up to Heaven. Now 3 years and 7 months after touching and smelling my perfect boy for the last time on this earth in that hospital room at the University of Minnesota where we went just 5 months earlier with so much HOPE for our boy, I need to live and want to live for my kids that remain here on this earth. I want to share in their joys and sorrows, and be part of every single movement in their life, something Mark and I have worked toward and deserve to be part of for putting in the time and effort to raise them up to be amazing human being. I don’t want to miss out on that, and they have suffered enough in their short lives and don’t deserve any more tragedy as well, especially tragedy inflicted upon them by their own mother. Not a option!!

So every day, we grieving mothers make the choice to get out of bed, to forge on, to laugh, and love and make others feel comfortable in our presence, so that they feel better “thinking” we are OKAY, and that God forbid it every happens to them, that maybe, just maybe, they too could survive this unimaginable horror.

Happy Father’s Day to my awesome husband.
Evan’s mom

The Journey Continues....

So much horrific tragedy in life!! And what amazes me that empires continue to get built, life goes on, and generations generated. But for some of us, tragedy occurs, and for others, more than once.

Just read an article about 10 year old quadruplets whose mother who seems to be losing her fight against a very aggressive breast cancer. She is 48 years of age. B.E.D., before Evan’s diagnosis, I would allow my self on occasion to have horrific thoughts, and one of my dirty little thoughts that I have never ever shared with anyone was would it be better to lose a child or for my children to lose me. It makes me sick to even remember having this conversation with myself, but I did and since I have shared every bit of victory and defeat on this journey, it is time for me to share this bit. I do remember thinking that nothing could be worse as a parent to lose a child, but I could only imagine how horrific it could be for a child/children to lose their mommy especially when they are still under her care 24/7. As the one who now has to deal with the daily agony of missing my boy, I do know that while I seem to carry most of the burden, I realize how much my kids need me, even my 24 year old big girl, and I plan to do everything I can to control the things in life that I can, caring for myself through healthful actions, and hope that I will be here not only to guide, but to share in both the sorrowful and joyful times with my three kids here on this earth. Evan is perfect, and peaceful, and in time we will reunite for eternity, this I know. Alaina, Derek, Mary and my future grandchildren need me now.

Every day I am shocked and dismayed at the horror that goes on in this world. And I am not talking about the stories that make the news like the natural disasters, horrific accidents, murders, or civil unrest going on around the globe, but the every day horror that is happening right in our communities. Two weeks ago I was at Northwood High School for a blood and marrow drive. Very disappointing event over all, and for the first time had a high school student say “recycle your body”, what are you doing with those body parts. Well, not one week later, 14 year old Northwood High cheerleader Ashton Sweet was in a car accident which led to brain death and her saving multiple lives though organ donation thanks to her parents ability to think clearly in the midst of their tragedy. And today I checked on a CB family where the daughter is in the fight with AML, needs to get in remission, then to transplant, and no marrow match. On top of that, her mom, my age, had a routine colonoscopy and has colon cancer. You have got to be kidding me. This is when you realize the devil is out there in full force and all we can do it put on our armor and shield ourselves with God’s grace. Life is big, bad and scary, and I still am amazed now much beauty there is to behold each and every day. And then I remember that God is part of every blessing in our lives.

I continue to have issues with visions of Evan in the fight that just knock me down to my knees. For the first three years I have not allowed myself to go there, but now I can’t seem to stop it them. Our kids suffered so much, and as I have mentioned before, those of us on pediatric transplant floor have seen things no one should have to see, let alone suffer through. And now I am having to deal with the next layer of grief which is dealing with the reality of Evan’s suffering. Sucks, once again.

Along with the grief journey, I am dealing with growing pains and trust issues surrounding the foundation. As I can now see more clearly and have become a self-taught expert in the area of donation of all capacities, I am learning the politics that surround “big business” inject themselves even with us momma and pop operations. I have shared before how a-political I am, having NO interest in the happening in this world that are far beyond this momma’s control. I don’t listen to CNN and I certainly don’t listen to Fox News, and I just am disappointed on a daily basis regarding the lies and mistruths that seem to plague our existence. I abhor people who lie, or bend the truth, no matter what the circumstances. And I refuse to collaborate with those who choose to do business in this manner, even if it means that I have to change the way I run Evan’s foundation.

People forget why WE do what WE do. And when I say WE, it is us “mothers and fathers to be reckoned with” who have lost our children and want to do everything in our power to prevent others from suffering the way we will every day we spend on this earth. This is not for our glory, but for Gods, and it is because of our experience and ability to see that we now have information that we didn’t before, and perhaps that information can help others in the future. And yes, the ONLY reason we do it is because our child has suffered so greatly and we refuse to forget. Call it what you want....honor, memorialize, putting them on a pedestal as I have been told by a friend....we don’t want you to forget our children, and we certainly refuse to forget what “we” have been through and go back to life as it was before.

Forever changed, and forever grateful for the ability to rise above the tragedy and loss, this momma to be reckoned with will not go down without a fight. My faith has provided me with HOPE. HOPE that I intend to share with the world.
Forever Evan’s Mom

Debuting our new blog to health....

Today I am debuting my new blog, “Do you have TIME to eat that?”, and it is very appropriate given the majority of us struggling to be “healthy”, whatever that means for you. I am posting this to our Caringbridge, to my first blog ”Through the Eyes of a Grieving Mother”, and now to my new blog, as it fits in all areas.

I am in a bad place. I am going to assume that May will forever be a yucky place for me since this is the month our lives were turned upside down with Evan’s diagnosis and the struggles that would ensue. What I do know is this, and I have told you this before as it is how I begin every single one of my presentations….Every single one of us will experience tragedy in our lives, some more than others. The question is what will you do with it? And I start this way so that people are open to whatever I am sharing on that day. The last thing I want is a barrier between myself and my audience. And as someone who “takes offense” on a daily basis to things that cross my path, I want these people to know that this is not about my struggle, but it is about what I have done with my struggle and that my goal above all else is to open their eyes to something they probably had no knowledge of, demystify the myths, allow them to form an opinion based on facts, and then provide them the opportunity to get involved should they feel a connection to the cause.

Today I struggled to get out of bed. Thankfully I had nothing pushing me out, and I could simply close my eyes, pray, and delay the reality of my new life by keeping the pillow over my head. Eventually my 55-pound puppy jumped up and cuddled next to me, and immediately I felt a little better. The only thing I committed myself to today was to go to CrossFit. As mentioned before, not a workout for the wimpy at heart, as you compete not only against yourself, but the others doing the workout with you. There really is no slacking off, other than you need to slow down if you feel the desire to puke, which I feel every single workout. Yet, I continue to go back. And the only reason I am there is because the owners are big supporters of helping our community and we happened to partner on running a marrow registry for a local young lady in need. The next week I was a member.

When I walked in I had no idea what the workout was going to be. I only looked up at the board long enough to see the warm up which was a 1000m row. I could do that. As I chatted with the gal next to me, I mentioned how much I hated last week’s workout, which had a 800m run at the start and end. She then had to inform me of today’s workout which was ALL running. My mood plummeted even more, if that was even possible. I wanted to RUN out the door and to my car, but knew that was not going to happen. I struggled through the warm up and then it was time. 4 minutes of deep squats, with the rest periods in the deep squat position, which is not restful at all but seriously painful. Following that was an 800m run, followed by a backward 400m run, yes I said backwards, then another 800m run followed by that darn backward run. By the time the squats were done your legs were dead as you began the run. I have NEVER run backwards for any period of time, and let me tell you how difficult it is on all levels. By the time that was over you could not wait to turn round and run forward, knowing full well what was coming next. I have never been so glad to be done with anything, and so proud of the fact I completed it, and then oh yeah, I still had to do the apple core, which is ab work and core strength. 20 walking lunges later with a 15 foot tube full of water held over your head to try to knock you off balance, 20 good mornings to do your already dead hamstrings in, and then 20 back extensions. High 5s and good jobs by everyone in the group and I actually was able to smile as I said thanks and see you tomorrow.

As I was running, thinking about The Biggest Loser and how much emotional baggage those contestants have and how the workout brings out the tears, I struggled to hold back my tears and was thankful that I didn’t have to talk to anyone and that the others were well ahead of me or well behind me. Did I mention how it is a competition and how I HAD to beat someone in my group as well as those in the group before us. They post up times and you can see where you fit in. Tears squeeked from my eyes, as I tried to contain them with all my mite, knowing full well I would be spewing out all my thoughts to you now.

Life is one big struggle. And even those who we think lead charmed lives will struggle, it just isn’t apparent to those of us looking in from the sidelines.

Had dinner with long time friends last night. My friend spoke of the recent loss of her brother in law to cancer, and how the wife and kids who had little or no faith before, now have a totally different perspective on life. Our struggles will either bring us to God or push us away. Thankfully for most of us, God becomes our refuge. And for those of us who have experienced extreme suffering, we know we had NO idea how important our faith was before and are so extremely grateful we know now. My perspective on life is forever changed, something that cannot happen unless you have suffered at an extreme level. We can never forget what we have endured and will continue to endure. And I am actually thankful for this perspective. It is a gift I will forever be grateful for.

As a kid, I grew up with two Italian parents with a dad who grew our vegetables and a mom who was extremely frugal. Pasta was part of every dinner, so I have never had a “carb” issue, as it was always cooked with veggies of some sort. That was always the starter. I had parents that were physically active, my dad went to the YMCA every single day, and my mom was a regular “substitute” bowler, remember I told you she was frugal and this way she didn’t have to pay to bowl. My parents weight always remained stable, but I do remember very clearly my dad deciding to do the “Scarsdale” Diet when I was a junior in high school. While I wasn’t skinny, I certainly wasn’t overweight, but do remember going to New York for two weeks to visit relatives and coming home having to squeeze into my pants after eating all the Italian goodies put in front of me. This was the first time that I felt uncomfortable with my weight. As a competitive swimmer, I attempted to diet but soon realized I was starving and eventually I think the weight was shed from the trip. As a senior, I fell in lust with a young man, and lost weight by default, as food no longer mattered. I then realized how nice it was to control my weight, so the scale became my best friend and regulating my calories became my mantra, and soon I was sitting at 98 pounds soaking wet, a good 10 pounds below where I should have been. By the way during Evan’s fight I dipped down to 103, not a pretty sight. At this point, I was a borderline anorexic before the disease because popular. This was 1980. The summer before I left for college, I was just 17 years of age, and was working at Swenson’s Ice Cream Parlor. By the end of summer, we had tasted every ice cream flavor, made every concoction possible, and once again I had to squeeze into my pants.

And when my parents dropped me off an hour south at UC San Diego in the fall, I was already carrying the freshman 15 from my summer of ice cream love. And for anyone who has gone away to college, you know all routine goes out the door and everything I knew about healthy eating and exercise was gone. When my weight got to a point that I could not stand it, I fasted for 10 days straight, drinking only water. And when I came off the fast, the weight came on at a speed I did not think was possible. Add mono to the mix, followed by several more illnesses due to a compromised immune system, and I weighed 148 by Christmas, a weight that I have never seen again, even when 9 months pregnant with Mary.

I struggled with the diet rollercoaster for the next 10 years, even while earning my BS in Dietetics, until my struggles with the loss of my sister to breast cancer and my infertility and my good friend Sandra showed me the way. While it started with going to her exercise classes and becoming weight training partners, I learned how I could actually change my screwed up metabolism by increasing my muscle mass, and for the last 20 plus years, I have not swayed.

I have always told my clients, if I was to write a book it would be one page long and it would be titled, “MODERATION”. I also am a huge believer in practicing what I preach, and preaching what I practice, ‘cause if I can’t do what I am asking you to do, I will lose all credibility, and that is just not acceptable to me.

So here is my book, the big secret….moderation in all aspects of your life. The calories you expend must be matched by the calories you ingest for homeostasis.
homeostasis |ˌhōmēəˈstāsis|
noun ( pl. -ses |-sēz|)
the tendency toward a relatively stable equilibrium between interdependent elements, esp. as maintained by physiological processes.

Unfortunately, most of us are not in homeostasis. Therefore, we must increase the calories we expend and/or decrease the calories we ingest. That is it. Not brain surgery. Unfortunately there is no magic pill, no magic exercise, nor magic piece of equipment, to fix this imbalance. It comes down to what you put in your mouth and what you choose to ask your body to do to find that balance, which by the way requires effort!! People don’t want to hear this, but it is the God honest truth.

The only way I will work with a new client is if they will commit to a food diary. I will tell you that the majority of people who ask to work with me never do because they are unwilling to make this commitment to themselves and to me. It is interesting that over the last few months, I have had a few family members ask for my help, finally. The thing is, they know if they ask, and I commit to them, then they have a hell of a lot of work to do. It’s a scary proposition. You will be able to follow this blog and together we can make adjustments so that you can learn to find that balance in your life. We have enough @#$%^ in our lives to deal with, so perhaps controlling the one part of our lives that we can, what we do to our bodies, will allow you to better tolerate the other struggles we will endure that we cannot control.

This blog is for you. For those of you who struggle and want to find control. We will share recipes and exercises and thoughts and try to figure out what will work for you, so that you have control of your health. For without health, we have nothing in life.

This summer I will blog daily as my sister joins Camp Cousineau. She will live with me for the summer, school nurse, and we will share the process as we allow her to regain control of her health. Might be the perfect time for you to mimic what we do with Chris, tweaked to accommodate your lifestyle, and see how you can take charge. My brother might join us as well. But the question is, who will kill who? I love Jillian on Biggest Loser by the way, so it won’t be pretty to start, but will be beautiful by the time we are done.
Stay tuned….g
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Always thankful....

Sitting outside on my balcony, something I NEVER ever do, enjoying the view, the freedom I have, the blessing I can see very clear in my life, yet at the same time, feeling my sorrow. In most moments of my life, what I have endured will be forever present. Even this morning at CrossFit, and if you don’t know what this workout is, let me just tell you that during every workout you are competing not only with yourself, but all those that are in your group, AND you feel like puking during each and every workout. Yet, we all continue to go back. Weird!! The last leg of workout was a 400 yard run. At first I thought of my running for my sister Lou, my friend Evelyn, Evan, and then I realized I don’t need to run for them, they are free and healed and enjoying salvation. Instead I was running for all those in the fight who can’t run, for Elaine and Ward and Tim and Patricia and Lyndsey and Molly and Andy and RJ and Jeremy and Jack and John and so many others. Knowing that I have the privilege of running while they don’t even have the option and I know how much they would love to be FREE again. And tears came to my eyes.

Even before Evan’s death, when I would run I would always think about my sister Lou and my friend Evelyn, and they would be my driving force to get me up the hill. I didn’t realize they didn’t need me, that they were in paradise and I didn’t need to mourn for their loss of life, I needed to celebrate it. My perspective is different now. I understand the hell all those in the fight are enduring and I know how much they would love to have the ability to do what I am doing, and I want them to know that I think of them always. While they may not hear from me daily, I read their words, I pray for them, and I am hopeful that their lives on this earth will be fully restored. I have HOPE.

I have mentioned several times on FB that last week was brutal. I had 7 drives in 5 days and worked 6 days in a row, but thankfully was rewarded with Mary’s surprise visit home on Friday (I was the only one who knew). I know what makes the donor events so difficult for me, and I can actually control my stress level due to what I learned this week. I noticed that if I didn’t have to “hear” people tell me “not interested” or “no thanks”, that I can work day after day, hour after hour, signing up donors. But when I have to experience someone telling me ‘NO” to my face, then it is a whole ‘nother ball game. I can’t take it. My anxiety level goes up and I HATE what I am doing in my new life. And so by the end of Tuesday, while I had brought close to 100 donors to registry in two days, I was a cooked goose. I had done two presentations to my friend’s biology labs at Mt. SAC, and fyi, my success rate is well over 80% at these drives where I speak and then swab them. We could not figure our what went down with these two classes, but less than 20% in each class signed on. And boy did I feel like a failure. I was sad and mad and just wanting to throw in the towel. Wednesday was a slow but successful day where all I had to do was seal the deal, my vols took care of everything else, and then Thursday I ended up at a Bible College where I got many “God bless yous” bestowed on me throughout the day and sixty something donors to boot, and I had renewed faith in mankind. Then Mary came to town and all was right in the world.

Saturday I was up at 4:45am to get ready for Donate Life Walk/Run, where we were able to honor Mary and all organ donors who have given life. 10,,000 people were at the event this year and it was again a privilege to “know” about and be part of the transplant world. Thanks to my dozen volunteers, we brought another 103 individuals to the registry.

Of course I failed to mention that this was also the anniversary of the day our world was turned upside down four years ago with Evan’s diagnosis. As well as the day that Mary told Kelly that she was Dom’s donor three years ago. As well as Derek’s Confirmation day in the Catholic Church. Mary, Derek and I rushed back to San Clemente just in time, where we met up with the grandmas, Derek’s Godmother my sister Chris, our friend Brooke, Derek’s sponsor our friend Diane, and Mark. This is where Mark got his surprise that Mary was in town, as he was down in San Diego with Alaina for a big water polo tourney for the weekend.

After lunch with Derek at his choice, sushi, Mary and I spent the afternoon at Evan’s beach, as Derek had to study (AP tests this week) and Mark headed back to San Diego. Sunday was spent in San Diego watching Alaina play polo, and in between more girl time with our cousins in Del Mar. Nothing like a little impromptu girl’s weekend.

Yesterday I was back work at a local college and the rest of the week I will play catch up , the price for being away from the computer and office work for a week. Love being home in my house, surrounded my Evan, and thanking God for the blessed life He has given me.

Evan’s mom
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Ate dinner with the devil last night....

I posted last night on FB the only words that I could muster and those were….”I just had dinner with the devil incarnate”, and I meant them. Our second full day in Kauai started out beautifully. Since I have leisure time I don’t usually have, I headed to what I thought was mass time, and since I was off by an hour, I stayed in this little Hawaiian Catholic Church to say my daily Novena. It was perfect. I was all alone in God’s house. By the time I was done, I had several missed calls and texts, but the most important was that I needed to get back as our helicopter ride was scheduled. Now you have to understand, this way my idea, and you all know that A.E.D, after Evan’s death, my new perspective is leading me and what the heck, why not conquer my previous fears. The only concern I had now was making sure I didn’t get motion sick and was concerned I was taking the Bonine a little late. As soon as we got on the little tiny copter, and we took off backwards, the nausea started to engulf me and I wondered how I would do this for the next hour, but as soon as we started moving forward and I had the air vent pumping cool air in my face, all was good. It was amazing to see things that one can only see from this vantage point and I felt so blessed.

After our ride and lunch, Mark shared that his friend from his old Surfrider days invited us to dinner, so we soon packed up and headed out for the hour drive. Their house on an acre of land right on the beach was Mark’s dream, and his friend suggested Mark and the kids pack up the car with surfboards and head 5 minutes down the road for a surf session. To be hospitable, and I hoped to have a bit of time alone to say another Novena, I stayed back. I will mention these people know of Evan and our journey, and even mentioned to Mark that they planted a tree in their yard for Evan, but they never showed us where once we arrived. The couple was nice enough, both in their sixties and tremendous activists, both as a natural as they come with flowing grey locks. There house and gardens were strewn with Buddha everywhere, so I assumed this was their religious preference, but found out later it was not so. The gentleman is a proclaimed “atheist” and I don’t know her stance on religion, but do know she is very into the moon, stars and water guiding her every move. I didn’t know any of this when she offered me tea and we sat to chat. I was not about to bring up Evan and the cause, but after telling me all about themselves and their causes, she asked what I did. In not so great detail I simply stated that my days were kept busy with my kids and their activities which I feel so privileged to be part of, that we were overly busy but that is our mantra and we love it, and that the rest of my time was spent with the work of the foundation and dibbling a bit once again with my old life’s passions of fitness and nutrition.

I thought I had a captive audience as this gal probed a bit more about the foundation so I began my spiel, and that was when “he” walked in and sat. By this point, she was in the kitchen put sing around and “he” was right in front of me when he states very calmly and quietly, “ I don’t think you want to discuss this with me”. Now, remember, I know NOTHING about ‘him” at this point. But this is what I found this morning on his FB info….

his favorite quotes:
No Compromise for Mother Earth!
Constant Pressure, Endlessly Applied!

his activities and interests:
• Environmentalism
Meditation
Spirituality
Philosophy
Tantra
Nature
Zero Waste Kaua'i
Vegetarian Society of Hawai'i
Yoga
Sacred Sexuality
Tibetan Buddhism
Non-violent communication
Surfing
Cosmology
Backpacking
Waipa Foundation
Deforestation
Colorado River
Nuclear Waste
Great Pacific Garbage Patch
Earth first
Wetlands
Kalalau Valley
Veganism
Goddesses

And what I want you to know from the ensuing conversation and my several hour stint in this house, with these people, is this blanket statement….”when you read “his” words about his passions you will see nothing about the human beings that exist on this planet. And it is very clear to see how this person exists with this very screwed up mentality and how I will never every attempt to coerce anyone with this thinking to come to the bright side. I am very happy to let these types of individuals stay right where they are and let them “think” they are better than the rest of us. I will let my God take care of them on their judgment day, as I have told you many times over, I have my eyes on the prize and I intend to get a free pass right into those pearly gates because of the life I have chosen to lead on this earth.

I have shared on more than one occasion, that do to the nature of what I advocate for, the ignorance and lack of facts that individuals have in regards our work, will never go away. We will continue to encounter individuals who need to be taught, and because we are passionate and believe in the cause, we do most of the time take an individual from “no way that is scary and painful” to “I want to sign up”. I do not believe I will ever encounter the ignorance or thought process that this retired “general practice physician”, gone “granola” decided to share with this grieving mom for two reasons, one, I will never every place myself in that circumstance again, and two, I will never allow myself to be around individuals who will make the decision to be hurtful instead of just keeping these thoughts, and believe me they were thoughts as he had NO FACTS surrounding his rants, to himself. He must not have watched Bambi, when his kids were young, as who can forget Thumper saying, “if you can’t say something nice, don’t say nothing at all”.

Got to hop in the pool now, I have sweat dripping from every pore in my body!!

FYI, I am lounging in my own private paradise. It seems as this timeshare was just built, our building the only one occupied by maybe two dozen rooms if that. My fam is out scuba diving, not my thing, so I finally get some much needed alone time. Just hung up phone with Mary who asked my why I felt the need to write about last night, and I told her, this is part of the journey. I have been sharing my heart for almost 4 years now, and while it is cleansing for me, number one, I know that I will teach you all a bit about human nature and that I will get the much needed support after an attack of this nature from Evan’s entourage.

This man who worked his entire life for a prominent HMO in Los Angeles, has obviously been tainted by his experience. While I have never been a fan of HMOs, because early on I understood the importance of being able to make my own medical decisions in terms of who would care for my family, and it came to prove itself out for us as our PPO allowed us to take Evan where we needed to be for his best treatment option. I do also believe that HMOs do offer great services and that while you might have to be the squeaky wheel to get what you need if you fall into life challenges like us, you will get the care you need. And I also know that that same HMO in LA has one of the best palliative/hospice care programs offered in the entire country, so just this alone shows HMOs can be on the cutting edge if they choose to be. Anyway, I digress, this man did not have a good experience it seems. And while “he” remained in that job for his entire career hating it, and then for three years worked on the islands traveling to clinics where he was needed, he has now retired with a big old can of hatred for western medicine in his mouth. And he decided to beat me over the head with it.

I am not sure that I asked him why he felt this way, or if he just decided to tell me, but I knew this was one person I didn’t want to spar with from the get go as I didn’t get a good vibe from the moment this mother pulled in the gravel driveway. “he”, note that I am not even going to give this person the privilege of a capital “h” at the beginning of a sentence, and that is because I truly believe this person is evil and I am not sure that I have ever truly encountered “evil” in the form of another human being in my lifetime, and I surely hope that was the last time. he said “oncologists and transplanters are only out for the money. That they single-handedly have ruined the health care system, and that transplant is barbaric and that no human being should ever have to be put through it”. he went on to say “the cost of transplant and the outcome does not justify the life saved and that it should not exist”. Wow is all my little mind was saying as he was on his rant. I am not sure when I interjected, but I did tell him that I did agree that transplant was barbaric, that if tomorrow I was told I needed one to survive, my answer would be an unequivocal NO. I also shared two stories for him. That we had one friend, who just celebrated his 10 years cancer free from his stem cell transplant which was made possibly by his sister, sit down with us and say “don’t do It, don’t take Evan to transplant”. While we knew nothing of the reality of transplant, we knew two things, that without it Evan would die a horrific death, and that with it, Evan could be cured. There was NO choice for us. Others do have choices to make and guess what, thank GOD they have the options to go forward if they choose to. I did not share this thought with him. I also shared the story of our friend, who was in middle school at the time, who had gone through transplant a few years early, made possibly by this sister. Not an easy process for him, 101 days in the hospital which means he had a hell of a time, BUT Gannon told me he didn’t remember much of any of it and if he could go on another “make a wish” trip, he would do it again. Ahhh, out of the mouths of babes. I was thankful and still am, to know this young boy had very little memory of the process. Gannon and another friend Kevin, who had an autologus transplant meaning he used his own cells, were the ones to get Evan to comply and say yes to transplant. I will be forever grateful to these two boys.

“he” went on that no good comes out of transplant, hmmmm, should I send him some pictures of all those families and patients who would disagree with him, And by the way, he had no stats to quote, he knew nothing of transplant or the process, just that too many lifesaving efforts were available to people in general who should just be done with their lives. So it is at this point that I agreed with him. That I asked if he knew what an amazing palliative/hospice care program his HMO was part of, and that I had seen way too many patients in ICU whose families refused to stop treatment because the ICU docs always had another option for them. And that we are making headway in our medical system to start allowing families to be part of the chronic care/ end of life care options with palliative care coming into the picture more and more around the country. And then at some point, my phone vibrated on the ottoman in front of me and I let it go. But moments later I asked what time it was, calculating the time in Indy with Mary and stepping out to call her back to say goodnight.


As I walked calmly toward the beach, which by the way was disgusting, I won’t even go into what these people told us about the big companies in the area are doing to ruin the environment here and I do believe they are probably right on here, I could not call Mary soon enough and just start my conversation with I had just dabbled with the devil himself. I cried for a bit and then shared in detail what had just transpired. I made her stay on the phone with me for at least an hour, until the family arrived back, and then I had to just keep it all to myself as we listened to these people rant about how horrific this little piece of paradise they lived in was, but at the same time how they loved it here. WEIRD.

Thankfully being vegans, I knew I was getting a dinner I would thoroughly enjoy, even the kids managed to like it, two glasses of wine got me through, and then for some reason dinner ended on Derek’s migraines, where this piece of evil stated that if people would just nap when they had a headache all would be fine. That headaches were a product of stress and that if you didn’t allow yourself to be stressed all would be fine. And by the way, he did make a comment earlier with me that if we just ate properly, all would be fine. And of course that led me into the world of ALD and how food had nothing to do with the metabolic genetic disease which he had no comment for as he knew nothing about this beast that steals the lives of perfectly healthy boys, and which by the way, transplant is the only option for ALD treatment and if we can get these boys to transplant early, we have a 100% success rate that these boys can lead a normal life. Take that!! It was at this time that his wife, his third by the way, finally quietly disagreed with him that she had a headache for 3 weeks and that no a nap didn’t help. She then brought out the Hawaiian singing bowl, which she placed on Derek’s head and for the next 30 minutes, bonged his head and asked him to see the aura that it produced. Then we all had to try it, and while relaxing, I could not wait to run out of that house and all the way back to our timeshare. Oh, by the way, she had 14 women over the previous night to do a water ceremony, praying to the god of water to protect the ocean, and they prayed over a bottle of drinking water that she shared and insisted we all toast to and drink. Needless to say, I faked it as there was no chance in hell I was going to allow that idolized water to touch my insides.

Just finished my lunch, teri beef, brown rice and steamed broccoli (did my P90X workout this morning, by the way), have edited this journal and need to figure out how to sign off.

I woke this morning to Mark talking to Alaina about what happened last night. I didn’t realize the first thing they would do in the car, like me, was check FB. And they immediately were all over me with “what does that mean”. I asked Mark what great things he saw in this guy, and his response was apropos…..I have know his a long time, he is a serious activist, I don’t always agree with him, but he is a good guy. Well, that is when I told him we had just spent the evening with the devil, and I am sure he thought I was insane. I could hear Alaina this morning saying, but mom thinks he is the devil. And when he came in the room this morning, he could not help but ask again, what happened last night. All I could respond with was if you believe in God you must believe in the devil, and that that human being was evil. I told him I wasn’t ready to talk about and then I needed to journal later today. And here I am.

I now know why the Surfrider chapter that Mark presided over for 10 years could tell me that our cause had nothing to do with theirs. I now know that I will never partner with environmental groups, even though you would think it would be the perfect partnership, but I now know that these people are too involved in their efforts, to expand their efforts. Someone once told me that he loved “collaborative philanthropy” and I use that term now on a regular basis. I am interested in working with like-minded groups who understand our efforts singly will be better together. I hate that the LLS does nothing for raising funds and awareness to marrow registry even though 71% of their patients will need transplant. I hate the American Cancer Society refuses on paper to allow a marrow registry to be held at their Relay for Life. Some areas have allowed us in by choosing not to follow the written rules. We will just continue to do what we best, partnering with the American Red Cross at college blood drives and inspiring this population of potential lifesavers. And I will continue to keep my mind open to all causes, thanks to my encounter with the devil, who taught me multiple things in our session together, 1. Do something admirable with your time on this earth, 2. Realize how much suffering there is in the world and that you can help lessen it, somehow, 3. And don’t just talk about doing something, get off your ASS and just do it!!

Needing our entourage today,
Evan’s mom
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