Friday, October 23, 2020
Almost 14 horrific years....
Fourteen painful years, who would have thought that the human mind could survive such a loss, the tragic loss of a child, yet empires continue to be built. Yesterday, my therapist asked me to speak of the details from the very beginning of Evan’s Journey. The tears flowed profusely as the emotions were overwhelming, as I recalled those early months.
I decided that I would go back and read through the CaringBridge journals so that I can actually recall the sorted details of the journey. Many of which I'm sure that I have suppressed and likely need to be dealt with. As we looked back in the months before Evan’s diagnosis, we knew from about August of 2006 that Evan started to not feel well. I have a picture in particular from our very first cruise together, and last as a family, when we were on a boat and he was sitting under a counter looking very unhappy. It is now that I know that he was suffering head pain, as his brain had started demyelinating due to this horrific genetic metabolic condition that I unknowingly gave to my son. Not that I could have done anything about it at that point in time as we did not have newborn screening as we now do today to alert us, but we were simply victims of circumstance at the time, and as the months went on the disease began to ravage his brain and steal his very life from us.
Over these few months, my typically happy-go-lucky joyful boy had more bouts of unhappiness, again not being able to put my finger on what was going on, and of course his being unable to vocalize what was going on as well.. In January, I made a decision to leave the Catholic school we had been at for years due to an issue with the administration, and both Evan and Alaina had to be tested for their new school. Even in January his brain was still working perfectly well and scored normally on all of the testing that was necessary to place them in the appropriate groups in school. We had no idea what was the come.
On March 18th, Evan had what we thought was a very severe migraine, as we have migraines in the family and it looked very similar to what I personally and others had experienced. As a paranoid / proactive individual, I did ask the pediatrician for a MRI and he suggested that we see a neurologist and allow him to lead the way with testing.The neurology appointment was not for 2 months. Around the same time we had parent-teacher conferences and it was then that we started to see what was happening in real life due to the demyelination of Evans' brain. As we looked at his work, we could see that all of a sudden he was unable to form normal sentences and his handwriting began to look illegible. In the ALD world, we know this is the classic sign of disease progression. In normal society, it was simply a young boy who perhaps had ADHD and was not focusing.
Time went very quickly over the next 6 weeks where I was trying to set up appointments, get him neuropsych testing to evaluate his ADHD, dealing with additional headaches on occasion, but lots of normal life as well that helped to quell huge concerns. That was until April 30th. Our lives were crazy, busy, wonderful, joyful, and I would not have wanted it any other way. Part of our everyday life was running up to Irvine for swim practice and then to water polo every weekday afternoon. The kids would do homework in the car and have snacks, and as one group might be in the water, that would give me an opportunity to spend time with the other, particularly Evan, as he was a rambunctious boy who loved to play. In the back of my Yukon XL I had a big duffle bag full of toy options, which still sits in my house today waiting for the opportunity to share all of those items with his nieces and nephews. Whether we were hitting baseballs, throwing footballs, playing frisbee golf or tennis, I enjoyed every minute of activity that Evan brought to my life, perhaps knowing that I would only have him for a short. It's funny thinking back on it, because I always had two thousand things going on and not necessarily every moment to spend with the kids, but I really have no memory of not wanting to play with Evan each and every time he asked me to, and always making the time to do so.
I don't know if it was on this particular day, but I can remember sitting in the car with Evan working on math with him and unlike my other kids or even Evan, he struggled with a concept that he could not understand no matter how I tried to explain it to him. I think it was at this moment in time that I really knew we were in trouble. And I seem to recall calling Mark about it with significant concern. As usual, when the kids were all in the water, I would run to the grocery store or run errands, and it was at this point that I got a phone call at the grocery store that Evan was not feeling well. When I got to the pool deck he was laying on the cement with a towel wrapped around him and a coach comforting him. I was weeks out of shoulder surgery and was not able to carry him, so a coach did it for me.
My goal was to get him in the car, gather the other kids, drop Derek at Water Polo practice and head home. As soon as we got in the car he began to vomit and I believe had a seizure at the same time. Of course we're in a moment of panic, Derek hopped in the backseat as I requested, to help him, and as I'm driving down the freeway I called 911 with it ringing incessantly and no answer ever. It was that point in time I pulled up to the next pool deck and had Coach Jeff hop in the car with us as I drove crazed to Mission hospital just a few minutes away.
As a 40-something year-old woman I had been to the ER multiple times in my lifetime, but never when they took your child from your arms and rushed him immediately to the back to evaluate him. But I remember very clearly was him laying on that hospital gurney looking incredibly frail and in a ball after the severe stress that the seizure caused to his sweet young brain. I don't remember any details, other than going with him to get a scan of his brain. I remember at one point in time being in the waiting room, though I don't know why I wasn't with Evan, as Mark was up at USC with Mary at a water polo banquet.What I do recall is how so many people I knew had gathered in a short period of time because of sweet Evan.
While I didn't know it at the time, the emergency room doctor found a heart for Evan. For years I would get an email telling of his meeting Evan that day and following our journey and the impact it had made on him. At some point late in the evening we were told that we needed to be transferred to CHOC in Orange. They would not allow me to be in the back of the ambulance with Evan, and I remember sitting in the front seat continuing to try to look back to see what was happening, not knowing if my son was even going to survive the night, for what was the longest ride of my life. At that point Mark and Mary had definitely made their way back to Orange County, Mark must have taken the kids, and the groceries that were in the back of the vehicle, home, and Mary followed in the Yukon behind me. We were admitted to the ICU where Evan quickly stabilized, thank God, and then moved down to a bed in a room that we shared with another child in trauma. The only thing I remember that night was learning that the young man had broken his neck jumping on a trampoline.
Friday, November 4, 2011
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
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
Wednesday, November 2, 2011
Evan's Four Year Angel Anniversary
Back to the land of the blogging. Read my post today on CB....www.caringbridge.org/visit/evancousineau
Sunday, June 19, 2011
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
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
Sunday, June 5, 2011
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
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
Wednesday, May 11, 2011
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
Sign up for my new blog at moderation4life.blogspot.com
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
Sign up for my new blog at moderation4life.blogspot.com
Wednesday, May 4, 2011
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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