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