Saturday, January 22, 2011

A New Year is Here...

Hope everyone had a happy new year. This new year is different than the ones before. Last New Year's Eve marked Ollie's first radiation treatment, shortly after his diagnosis of a deadly brain tumor. We were in a fog almost at that point. Hearing the horrific news and coming to terms with it, while getting him to his radiation therapy and appointments with several different doctors down in Iowa City, trying to take care of the other two children, plus a 3 week old infant. Such a whirlwind of life changes happening in such a short time. Oliver had come home not feeling well, vomited and complained of a headache. Ed and his brother gave him a blessing (a special prayer) and he felt well enough after that to play with his cousins that were visiting us during this difficult time. Such a cloud was over us at that point.

The year went on, not knowing how much time we'd have with him. Trying to create many memories and taking many photos of him with the other kids. Like a fellow mother of a child with DIPG just said that we've been smiling through the holidays not knowing if it would be our child's last one. Feeling vacant in our own skin. We've been lucky to be able to talk via a DIPG support group online and meet others who have lost their babies, as well as parents of children in the fight like Oliver. More and more children are diagnosed every day with this disease. It makes me sick thinking of the children you hear about passing away. More parents questioning when to get hospice involved. Children diagnosed after Oliver passing away before him. It's a horrible place to be... I sit and just bawl when I think of what the families are going through. I read their words and feel as if I could have written so many of them. We are all at different points in our journey, but we have a love and connection that is such a support to me, even via the internet. It is so strong and I appreciate their love, support, kind words and prayers for Oliver as well as our entire family.

I was planning on being a part of a pediatric cancer awareness group through St. Baldrick's foundation, the '46 Mommas' (46 children are diagnosed with cancer each day) and was going to be shaving my head with other mothers to raise awareness and funding but have since bowed out due to several recurring thoughts and prayers. I figure since I can't give 100% to Oliver and the rest of my family and 100% of my time and energy for St. Baldrick's, something's gotta give. Since my family is my number one priority, I have to wait until the time is right for battling this beast, childhood cancer, on a higher level. It's hard to feel like I'm 'quitting', even though I'm doing what is best for me and my family. NO ONE has traveled in MY SHOES and so I have to remember that and not worry myself with what someone else think I should do. *SIGH*... easier said than done. I'm sure another momma is waiting in the wings, ready to start planning and fundraising so my stepping aside won't be in vain! :O) Many well wishes to the other mommas and hope that they can meet their personal goals they set! If you'd like to check out the mommas for 2011 and their stories go to the 46 Mommas website! There are many mothers that are honoring their children that have battled DIPG, like Oliver. I wish I could have shared this experience with them. Oh well... I'll be there in spirit. :O)

The Dance Marathon in Iowa City is coming up this next weekend and the kids can think of little else! I still need to make a poster honoring Oliver. The posters are one way of keeping the students focused on why they are dancing and doing what they are doing. It makes it more personal to see photos and read about the children. They also have families on stage sharing their stories to keep up morale during the 24 hour event. They can't sit for 24 hours! It was so much fun... so much energy... so much commitment, selflessness and love. I thought of how awesome it was that the young kids, who you would think are completely self absorbed at that age, would do this for our children and for our families. I couldn't help but think that they are dancing for us today, but it may become a reality for them in the future if one of their children is diagnosed. Words really can't describe the feelings I felt there. It was an AMAZING experience.


I'm still playing catch up on the blog. So if you have time you'll have to keep checking back in and reading about what fun things we've done the past year! We hope to make many more memories together! Again... thank you for your prayers for Ollie and our family.