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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Continuing to miss my sweet boy....

Never gonna believe this, but I am on a plane again. Thanks to the generosity of our NY cousins, their extra timeshare week anywhere translated to a week in Kauai for our family. And while we are super disappointed they can’t be with us, the only things missing that will make this week a little bitter sweet will be Mary and Evan. I haven’t talked about the grief journey in awhile, but this week for some reason has been a bit overwhelming.

After having a wonderful week with my girl, I did feel a little bit of “postpartum” depression, which is not something I usually have to deal with. Perspective is easy with Mary though, as we will see her in about 6 weeks when Derek and I hop back on a plane and head to Mary’s graduation ceremony. While she doesn’t officially graduate until the first week in August, we would not miss this monumental moment in her life. Mark and Alaina unfortunately have to stay back as Alaina has the Junior Olympic water polo qualifier tourney that same weekend. Derek and I never get to have a trip together, so I am looking forward to our time. And then about six weeks after that, my girl will be home for good. Might actually get in another trip to Illinois, which will allow me to spend weekend with her again in mid-July, if I attend the ALD conference there.

I always tell people that while my kids on this earth keep me more than busy, Evan and I get to go to work every day, and I do believe this time together helps alleviate my every day agony. I see or talk or read the words of grieving friends on a regular basis and most of the time I am “shocked” at how good I am compared to the words they share about their life after the death of their child. It is very clear that the work helps distract me every single day, along with my other kid’s activities., for which I am grateful.

When I was with Mary in Indy, Evan is all over her room. Pictures on the dresser, on the wall, on her desk, on the bathroom counter, and as we would sit daily and do our Novena together, it pained me to see his perfect face. I had to literally force myself to look anywhere but at him, as the pain was so real and current. When I came home, I realized while Evan is all over our house, I don’t look at him eye to eye very often, those pictures are so that others will be reminded of how much I miss my boy and I don’t want them to forget. And I did notice this week, that when I looked him in the eye, I have no choice but to use words that are not appropriate to write here. Almost four years from that horrific day when we learned of Evan’s disease, the feelings are still so overwhelming. It is so hard to believe what has transpired in that time, that I am still here on this earth, and that I do love the life I am forced to live.

There is a banner that was made for Evan’s memorial that has hung off the balcony in the front of the house for 3 ½ years now. Yesterday I noticed how weathered it had become and this morning cut it down. It was so difficult, and I wondered if I was ready to let it go, but I am not. When I return home, I will be replacing it with another banner of my perfect boy, so that no one sees our house without being reminded on the agony we must all live with while here on this earth.

And the piece de resistance was on Thursday when my compadre, Diane and I were saying our Novena on the beach, and as we were approaching the end, Diane says, “look, there is Evan and Lou (my sister), I asked them to come”. And what she didn’t notice until a few moments later, was that there were three dolphies, as Evan would call them, and we both knew that third one was Diane’s perfect baby boy Matthew who went to Heaven on the day he was born at full term. God is amazing.

People always say that “God doesn’t give people more than they can handle”, which by the way was said by Mother Teresa, but people all the time are given “too much” and we see the repercussions of those tragedies with suicides, addictions, mental illness, and other self-destructive behaviors that hurt not only that person suffering, but the circle of others in their lives. What I believe Mother Teresa, an amazing human being, most likely meant was that when tragedies inflict themselves in our lives, God will be there to carry us, support us, distract us, and love us unconditionally thorough that tragedy.

I start all my presentations with the words, “every single one of us will have tragedy in our lives, some more than others, the question is, what will you do with it”. And I start this way because I don’t want people to think that I believe that my tragedy is worse than theirs, I do not.

A lovely college girl emailed me the following words the other day,… I wanted to send you an email rather than posting a comment. I have been following your story since day one. I went to Santa Margarita and played water polo and helped out with a couple of bone marrow drives in San Diego with a mutual friend. I remember I was a sophomore and Mary was a senior. I did not know your family that well, but my favorite memory of Evan had to have been at the water polo banquet. He and Alaina were really small and they were running around on the stage playing together. I remember how cute they were together and Evan's smile was so radiant.

While reading your story, my worst fear was that something would happen to my family that would be incurable and there would be nothing I would be able to do to stop it. Well it did. My mom, my best friend, passed away two weeks ago from inoperable pancreatic cancer. Reading your journal has given me hope and understanding. Seeing everything that you do has inspired me and I know that losing my mom isn't even close to losing a child, but you give me strength, hoping that I can be where you are today.

Thank you for letting me follow you in your journey.

I told this amazing young woman that the most horrific loss for someone her age would be the loss of a mother, same with this mother losing her son. They are equal and just as painful, and I did not want her to minimize her horrendous loss. It is my hope to meet this young lady in a few weeks to hug her, and hopefully offer her some additional words of wisdom and thoughts for helping her work through the grief, not run around it. I know full well, and took the advice of many before we lost Evan, to embrace the grief and tackle it head on. Between that mantra and God’s grace, we are doing amazing things in honor of our boy and every patient we have met on this journey we call life.

Aloha,
Evan’s Mom

I'm Leaving On An Airplane....

I’m sitting on a plane, again, knowing I have flown more since Evan’s diagnosis and loss than perhaps I have in my entire other lifetime. I have been wanting to write for weeks, with so many topics to share, and now that I am finally ready, I am not sure what to share.

I will start with a few special moments in the life of Evan’s family since I was with you last. On March 2, Derek and his club at the high school put together another awesome blood drive. With 175 donors coming out that day, they collected their highest number ever, 135 good units, and one of those units was my sons. Derek has been anticipating his first donation since before he turned 16 in December. We thought we would get to do a family donation when Mary was here that month, but someone always was a bit under the weather. When the big moment finally arrived, he admitted being scared to death of the unknown. I have no doubt the harem of girls that surrounded him surely took his mind off the fear factor, and after it was over, he couldn’t believe how easy it was and said “next time platelets”. This young man will donate a lot of blood product in his lifetime no doubt, and perhaps he will be the lucky one to donate marrow in his lifetime as well. So proud of my boy on so many levels.

Alaina baby had a huge moment in her life, where she had the opportunity to try out for water polo national selection camp for 8th grade girls. While she is one of the younger ones, 7th grade, she had the skills to be selected to our zone team and has been preparing for this weekend since September. When the 30 girls were called, she was not one of them. I didn’t think it was the end of her world, until she got to me after for that hug. And along with her shock, her coaches and other powers that be expressed their shock too at her not being chosen. While we spent over a week trying to help her reason life’s unfairness, I was not concerned, as once again this mother had a feeling. Soon after, we got a phone message from the National Cadet team coach for Alaina to please return her call. I knew deep down what the call was going to be from before it was made. I knew that they knew they made a mistake but I wondered how they were going to fix it. And when Alaina came to me after the call sharing that they asked her to be on the team because another young lady could not attend, whether this reason was the truth or not, they fixed the problem and life is good for my 13 year old, you know what I’m talking about, teenager.

My hubby, who likes to procrastinate when it comes to his health, allowed his ulcerative colitis to flare up to levels what were just shy of hospitalization. I will never understand the “maybe it will resolve itself” or “I’m just gonna google my symptoms and try to fix it on my own mentality”, and once again I knew best, but thankfully I didn’t have to say it too loud, his female doctor took care of that for me. I, on the other hand, especially since Evan, have me or my kids “in” the moment something doesn’t feel right. Better safe than sorry my friends, as knowledge is power in all aspects of life. Well, I wish I could say Mark is on the mend, but I think it will several weeks before he is actually in a pain free zone. Guess momma Gina will have to keep a better eye on her oldest child.

I just posted on FB before the plane took off that I had to stand in line at check in with no joke, probably a 1000 other people. I have NEVER seen lines like that ever, even in the security section. Bad planning by Southwest with spring break in the mid-west I suppose, but I made it to the plan with 8 minutes to spare. So along with the stress of standing in line and wondering if I was going to make my flight, by the way, the stress was over once I was on the plane, I lost my internet card at some point on the trip, $85, and we got a parking ticket after having lunch in Chicago right before we headed to the airport, unjust I will tell you, $60, but all in all, the trip to see my girl was PRICELESS$$$$.

We are so much alike and have so much in common, it is scary. If I treated my husband the way I treat my girl, we would live in paradise, but for some reason I am just a pain in his ass on a regular basis. Something I am working on as we speak, as acknowledgement of a behavior is step on in being able to correct it, right? But back to Mary. She asked me a few months ago to come out to run a marrow registry with her student nursing association. She had much difficulty initially getting them on board, but once the wheels were turning, all was good. I spoke to over 60 student nurses on Tuesday night, and then gave them an opportunity to join the registry. I must tell you that when I asked my normal question to this group, “how many of us are on the registry already” and only Mary and I raised our hands, I was shocked once again. I will tell you I am shocked on a regular basis in my new life, and I don’t think this will ever change. But the good news is that 55 of those individuals in that room joined that night, and a few others joined in the next two days. There were two for sure that were medical deferrals, and bottom line, on that day in Indiana, Evan and God made a difference to this population of future medical professionals. I then asked for volunteers at the student union while I ran a drive for the next two days for the “regular” student community. While Mary and I were concerned for the first hour after setting up next to the cafeteria, once a few students showed up to help, we ended the day with another 65 individuals and a group of student nurses that were empowered with the cause and the messaging. They too were shocked at the lack of enthusiasm when they asked their fellow students walking by “if they would like to learn how to save a life”. I had to get them to get rid of the “want to join the BONE marrow registry” spiel, and give them something they could not easily say no to. The “not today”, or “I have class” responses bugged them, but when a young lady called them out for “guilt tripping them”, this momma stood up for her brood. While I bee lined my way past my volunteers who had open mouths in response to this girl’s response to them, I stopped her in her tracks with a very strong message of why we were there and left her with one big fat bowl of guilt. She deserved it and my kids needed to see that I would not allow this ignorance. I will share that I do believe she came back later, or her teammate in the same jacket who looked very similar, hmmmm, and signed on.

The next day, back to our post, we signed on another 72 on, with the help of an African American Valpo football player who heard my message and joined first thing that morning. He asked me if I could let his coach know what he did, apparently he doesn’t feel like the coach sees the good side of him, and I took that ask and ran. A phone call later to his secretary, who initially seemed like she was going to try to screen me out, but once she heard why I was calling she put me right through. And while I asked if he would allow me 5 minutes to speak to his boys, he didn’t think it would work that day as they were not together and meetings were happening throughout the day. But he did promise to share the facts with the boys and coaches and encourage them to head over to the union that day. Of course, I did ask him what he knew about the registry and if he was familiar with Coach Talley and his work with his football players at Villa Nova. He was familiar and that did it for him, a challenge to get his boys involved works well with any athletic community. Little by little, all day, the boys and even a coach came to join, and this picture was one that I just couldn’t resist taking. The only thing missing is the boys being in uniform. I LOVE football players!

I am hopeful that you all received our first Be A Hero Become A Newsletter at the beginning of the month via email. If not, view NEWSLETTER here. Sign up to be on our MAILING LIST here, so you can keep up with our efforts to save lives. You never know if you might want to get involved on some level in the future. I will also ask that you “LIKE” us on our FACEBOOK PAGE. This will allow our info to come up in your newsfeed so you can see what we are up to on a regular basis. Some pretty cool stuff we are part of.

We lost a great volunteer earlier this year, who needed to focus on her family, which was devastating for me because Carolyn and I were two grieving mammas on a mission. I wasn’t sure how I would do it without her, but thankfully God opened the door for our board to make the decision to hire a part time employee. We had several very qualified, perhaps overqualified, individuals step up, and I was positive we would hire a 20- something-year-old college graduate who was waiting to find their ideal career job. Instead, welcome Chris, a San Clemente resident, who happens to be a year younger than me. Her resume, topped off by her follow through, made this a no brainer, and between her and my administrative assistant, Mary, they will keep me on my toes.

The rest of spring looks packed with donor events. I am still actively seeking volunteers who are interested in helping once a year or once a week, so please be sure to connect with me so I can include you in our Facebook group for BAHBAD volunteers.

On the grief front, today we met up for lunch in Chicago with a dear friend who lost her brother a few months ago. Her pain is so new and raw, and Mary and I are grateful that time has allowed us some relief from that daily agony. For me, the work of the foundation is my salvation here on earth having to live without Evan. It was interesting while at Mary how difficult it was for me to see Evan’s face all over her room. I guess I am just used to the pics I have at home and they don’t affect me, but I had to constantly force myself to not look, as it brought back the agony with a vengeance. One thing I have learned, don’t judge how another grieves, this pain is all their own.

On a religious front, I am in the best place I have ever been in my almost 48 years as a Catholic. The journey has been a rocky one, but I’m in such a good place, that I know for a fact this is the reason I am doing so well without my boy here on earth. We started another 54 day Novena on Ash Wednesday, which has been wonderful. We are working to bring Immaculee Ilibagiza, a Rwandan genocide survivor, who has allowed thousands to learn to embrace the Blessed Mother and her promises to us through the Rosary, here to the youth of Orange County, something we hope to do this fall. www.Immaculee.com And I have gone back to church, which wasn’t the hardest part, but am able to go to our family’s church, which was. I have been taught by a few amazing spiritual mentors in my life the reason for going to church in the eyes of the Catholic faith. And going from a cradle Catholic, born and raised with no real true understanding, to dipping in head first to learn about my faith, has been miraculously healing in itself. One huge thing I have learned in this arena is this….there are countless religions on this planet. None is better than another. Most of us were born into our faith, while others chose theirs. As believers in our faith, how dare we judge another for believing in theirs. Even for those I know who are non-believers, or aren’t sure? All I am interested in doing for them is to pray that they can someday find faith, as without mine, I would not survive this earthly life I have been blessed with.

Love to you all,
Evan’s Mom
PS Since no one can figure out how to comment on this blog, go right to CB and write in our guestbook please. I need the motivation from you that my words do make a difference.
CB Guestbook I love the ability to have pictures and videos here, so this is where I will continue to write, but will notify you through CB, so be sure you get notifications there.

Thankfully you can only imagine....

I have been trying to write this blog for over a week now.
This part was written over the weekend…. Mary is in the ER, once again, thousands of miles away from her momma, with what is hopefully an ovarian cyst. The severe pain is being handled by morphine and zofran for the accompanying vomiting brought on by the extreme pain, but the distance between us is overwhelming for his momma. Alaina is with the Tiemans for a surf competition up the coast for the four-day weekend, and Derek is with friends until his 11pm curfew, and how I wish my kids were home under my watch on this windy, stormy night. These feelings of uncertainty are the finish to what was a beautiful day. Keeping my “eye on the prize”, knowing that tomorrow is another day, and perhaps just as good a one as yesterday. Strange thought to have as I know the morning will be spent at the celebration of life for a CB friend who lost her battle from complications from his BMT two years ago, but I know that I have come to love these events, hearing all the loving thoughts and memories of another hero in my life. I will keep you posted on Mary for all those as impatient as myself. Now on to my thoughts….

Thankfully you can only imagine….

I have heard these words more times than I can count, and my reply is always the same, “I am so thankful you can only imagine!”, as the pain we grieving mothers feel on a daily basis is not an easy burden to carry, some days overwhelmingly “heavy” and others are remarkably “feathery” light. I do know that circumstances behind the death of a child, feelings of guilt and regret, how the child died, is it any only child that passed, the age of the child at death, etc. are all factors that dictate what the grief journey might look like, and no two are the same, but what we all have in common is the permanent hole in our hearts in the shape of our children.

If I was to rate the top two fears of a “mother”, or at least this mother, they would be first, of course, the death of your child and second, the death of yourself. You may challenge my thought process, but this is my blog, so if you wish to hear my thoughts, continue on. I am living the worst fear. And my friend Elaine is living the second. I can “only imagine” the fear she holds knowing that the tumor that invades her liver and lymph node(s) can potentially kill her. She has extreme faith which will carry her no matter what the outcome, but at 51 she is not ready to end her earthly life, and we, her community, will do everything we can to help her continue the fight, despite the fact that her insurance company has abandoned her. Yes, you heard me right; they have denied the treatment her doctors feel is the best shot for treatment/cure. As Elaine fights the powers that be, we her community help in any way we can, and for me it is helping take some slack by teaching classes for her, and then hosting the first of what will be many fundraisers to pay for what the insurance refuses.

My feelings about who I am and what I have become make me that much closer to my God. While I will continue to debate the majority of you that want to believe that your God allows the pain and suffering in your life, I on the other hand continue to stick with my belief that if you believe in good, my God, then you must believe in evil, the devil. And I believe that there is horrific evil in this world that wants to win the war. I have seen over and over again families like ours that continue to get hit after hit, suffer more and more, and there is NO WAY that my God would cause this pain. On the other hand, God is there and for me, has given me so much comfort and support while allowing me to fight the evil warfare that ultimately took my son, and has threatened to cause further harm to my family, but we stand strong, because of our faith, and refuse to allow him to win again. Even though we lost the fight for Evan on this earth, Evan kept his eye on the prize and is living in nirvana, disease free, pain free, and perfect in every way. And as his mother, I am thrilled to know he is safe and warm and where we all will ultimately meet one day. And until then, I will continue to live this life, with all the vistas and valleys, good and bad, and know that I have my “eye on the prize” and that I am forever changed because of my perfect son, his journey, our suffering, and my amazing God.
A CB friend posted this just recently….

The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.
-- Elisabeth Kübler-Ross

Elisabeth Kubler-Ross is an amazing human being. She delved into areas of research that no man dare cross, death, and has given us great insight to this very real part of life. I remember clearly reading her book when I knew my sister was dying and placing it very clearly on my little bed in the corner of her hospital room to make sure people knew where we were at in the journey.

I find myself wanting to share so much and not having the time to do it. I need to write several times a week, and instead write to you in the middle of the night in my mind and never getting it down on paper.

After a four-day drive last week at Cal State Fullerton, a weekend of water polo, which you know we love, and a week of presentations, I did three separate ones today alone, and there is no relief in sight. I am thankful for my ability to multi task, to have good health to work out, to have the knowledge to fuel my body healthfully, to give attention to those in my life that need it, and to know the impact our journey with Evan is having on other people.

In the midst of all the tragedy I have witnessed in the last (almost) four years, and so much in the last few days, I find it remarkable to be able to move forward instead of being paralyzed by it. I am very aware of how fragile life is and am hopeful that I will never ever forget what I have witnessed, as I am forever changed for the better. As I told the 100 swimmers I spoke to today at an OC high school, I do wish I knew what I know now and could share the message with Evan by my side. Since I can’t, instead Evan and I go to work every day inspiring individuals like yourself to make a difference in this lifetime by sharing your vital resources and giving life.

I leave you with these lines from our friend Julie who is grieving the unexpected death of her younger brother….

"We can cry with hope,
We can say goodbye with hope
Cause we know our goodbye is not the end
And we can grieve with hope
Cause we believe with hope
...There's a place where we'll see your face again..."

Love to our entourage,
Evan’s Mom

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