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