I have been thinking lately about how Kevin's cancer has changed me for the better. I finally sat down and starting writing it down. I thought I would share it.
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In 2008, once I made it over the hurdle of Kevin's diagnosis and through the initial shock, fear and heartbreak something slowly and amazingly happened to me. I was able to smile the way I never was able to smile before.
Before Kev was diagnosed I had been trying to find my voice as his advocate. I was having a tough time getting any family member to appreciate my view and that was very true when I started to notice something going wrong with Kev. There was a point I seriously considered going on meds because almost no one saw what I saw. Luckily a friend came over and experienced one of Kev's 'episodes' and agreed with me something was wrong. I needed to push harder to figure it out. I think it was within a week of Kev's surgery to remove the tumor in his cerebellum something deep inside of me became free. I took control of Kev's treatment and finding care. I found I was smart enough to learn quickly what I needed to know to talk the medical jargon needed to discuss options with the doctors (with help of some parents who had already walked down this road before me and my obsessive need to read).
When the opportunity for a more successful treatment Before Kev was diagnosed I had been trying to find my voice as his advocate. I was having a tough time getting any family member to appreciate my view and that was very true when I started to notice something going wrong with Kev. There was a point I seriously considered going on meds because almost no one saw what I saw. Luckily a friend came over and experienced one of Kev's 'episodes' and agreed with me something was wrong. I needed to push harder to figure it out. I think it was within a week of Kev's surgery to remove the tumor in his cerebellum something deep inside of me became free. I took control of Kev's treatment and finding care. I found I was smart enough to learn quickly what I needed to know to talk the medical jargon needed to discuss options with the doctors (with help of some parents who had already walked down this road before me and my obsessive need to read).
I found that some of the preparations for crisis I had made helped my family make it through. I found my experience watching other families deal with cancer helped me to make the very tough decisions we need to make to try to save our home with the onslaught of unexpected expenses. We were all so lucky that there are some really amazing people in this world who sent cards, prayers and put together and attended fundraisers. I saw first hand what sending a card can do, and how simple acts of kindness can have the power to help heal. Some of people that helped to heal my son I am so blessed to call good friends, some are still complete strangers I am very thankful for.
As I packed my car to head home for a short break between radiation and chemo that alone feeling hit me hard. I so missed my mom. I noticed, with envy, the moms who surrounded me who had their moms (or mother in laws in some cases) by their side as they faced the uncertain world of having a child with cancer. I didn't miss my mom that exists now, but the mom she was when I was 7 before her illness kicked in. There in the warm Memphis spring, as I tried to efficiently pack my Taurus X trying not to leave Kevin and Jake alone in our Ronald McDonald House room for more than 5 minutes, I found my way to accept it and the inner strength in knowledge my kids have a mom who won't break.
I made the drive from Tennessee to Michigan with my sick nauseated, dry heaving oldest and his infant brother without fear; riding on the knowledge I could really do much more than I realized on my own.
I got home for that short break to be surround by friends offering what they could in support and help. It was exactly what my soul needed as I prepared to help Kevin face the next challenge of chemo while juggling maintaining a life for my other two children.
My extended family is not incredibly close but my step-mom took a couple of weeks off without pay. She is the one who insisted her and my dad make that initial February drive to Memphis when I was given 72 hours to pack up and get to the hospital so Kevin would qualify for the protocol. Lucky for me my step mom came through because we hit an ice storm on the way, I got lost when we got to Memphis and was beyond exhausted once we got checked in to the Grizzly House. The lack of sleep had finally caught up and adrenaline had run out. Later during chemo, my sisters both came to help for a couple of days and my Aunt, who I hadn't seen in years, came out for a week to help during those terrible months of chemo. I felt so lucky to have friends who took time off from work during their summer and broke from their obligations to come on their own expense to help. I found that there is more good in the world than bad. That the human spirit is mostly good.
Mike came once a month to help for a week and almost every weekend during chemo. He would spend hours reading to Kevin has he laid in the hospital bed or playing their DS's together when Kev had more energy. Kev's dad, Eric, stayed the whole time whenever Kev was admitted inpatient. I got to see how amazingly lucky my kids are to have the dads that they have, to have dads who are there when times are really tough. I sometimes wish they both understood me little more than they do but overall in the grand picture they are good dads. They show up for their kids. I might not easiest woman to be married to but they both are good dads. Maybe that is just how God planned it and I needed to be okay with it. Now I feel more free to be who I am as a mom, as a woman, and not let either man's views hold me back like I used to.
During our time at St. Jude I saw some really sick kids and have experience horrible deaths that these children go through when they don't win there battle with cancer. I have experience kids overcoming the terrible 'late effects' some of the chemo causes. I am now experiencing my own child overcoming the late effects of radiation and chemo. I watch in awe Kevin's strength to not let this beat him. He reassures me its not ever coming back. I have experienced my two older sons becoming my heroes as I watch both Kevin and Scotty deal with this world they got thrust into and not let it steal their childhood.
I have the experience of having to agree to make my son so sick for so long to try to save his life not knowing how badly we were going to damage his little body or if it even was going to really extend his life. It still isn't obvious all of the ramifications. It scares me during the times when I think about the long term, but I feel blessed to have Kev here today on the mend. Fighting with the same determination he used to walk that first time after his brain surgery just so he could get down to the library to check out a book.
I do have moments of complete sadness for those parents whose children didn't make it. And there is a little guilt for getting my son out of treatment alive every now and then. I know it is completely random who gets to keep their kids and who doesn't. I know we are not out of the woods completely yet. I have seen this cancer comeback and if it does it is even harder to win that battle.
I have realized that each day is a gift, that life is to be lived in full color. To tell those around me I love, just that, I love you. And...still despite this realization I do get frustrated with loved ones from time to time but it isn't nearly as often. I see things in other people I have never been able to noticed before. I appreciate my friends more who are positive and encouraging. I find life to be far from black and white, there is so much gray area. I hope I show more understanding of people who are caught in the gray area than I have before and to be okay with it when it is me caught in that area when answers don't feel simple.
Now I find myself wanting to make more quality time for my kids and my friends. I make more of an effort to 'show up' for loved ones than I ever have, this includes myself. I have made time to train for and run a marathon. Something I had wanted to do before but had never had to courage. I sing and dance with my children more often when it is just the 4 of us at home and we are making dinner. We make up crazy songs as we go through our daily tasks. It is probably why Jake sings so much. I rarely did that before. I have found new joy in moments of peace.
Probably the most important thing that started that first week of after Kev's surgery is I heard God's voice. It feels crazy when I say it but I can't not acknowledge it either. The experience has strengthened my belief that there is something more than just us trying to get through each day. I don't have it all figured out, may never, but now I know that I am not alone on this journey. We are all in this living experience (or experiment) together, with a little outside help, and it is better to like it than not.
Through it all I have learned a smile eases the pain, there is so much more to smile about than not. It is especially easier when you realized you have been equipped with what it takes to make it over mountains, no matter how tall or steep.
Rachel




