Wednesday, October 20, 2010


We have been blessed with how well Oliver is doing. He is able to run and play, wrestle with his brother, even dance with his light saber! He's able to use his left hand again and throw and write. Every day is a gift. It truly is. When your child is diagnosed with cancer you are immediately part of a larger family. We have had the opportunity to meet a few others who have children who have passed and children who are now battling for their lives. Shortly after Ed and I received Ollie's diagnosis we searched out support groups and found a DIPG support group online. Since then I have read through countless blogs and looked through many pictures of other children and families affected by this horrific disease. We are scattered all over the country... all over the world, but we are brought together by our children, by our need for information, support and prayers. It makes me sick to know that so many young kids are struggling so much. I just cry at my computer seeing the blogs or the emails that say another child has passed or is very near to it. I know that it is all part of the plan, but I just can't help the hurt and pain that I feel. Please keep the families that are dealing with this disease in your prayers. No parent should be told that their child has cancer, especially one that is so devastating with such a poor prognosis. Life is... well... life just is... some days. I never know what mood I will be in on any given day. I'm happy, I'm sad, I'm jealous, I'm angry, I'm frustrated, I'm blessed, I'm hopeful, I'm helpless... it comes... and it goes... I'm sure I'm just a delight to be around! I've learned a lot about the grieving process and it doesn't just begin at death. I've been grieving ever since Ollie was diagnosed. I feel like my heart was broken into a million different pieces and each time I hear of another child being diagnosed it's like one of those pieces is shattered all over again. I know the pain of hearing the news for the first time. Being a zombie for the next few days while you are trying to let the reality of it all sink in. Breaking out in crying fits and trying to keep it together in front of the kids. Some days I just want to scream!!! I want to scream for all of the mothers out there who have visions of the future flying through their heads and wondering if these dreams will ever be realized. I know the questions that are asked out of the blue and the shocked looks that I give back with nothing to say. HOW do I explain things in a way that they will understand... that won't be too scary or confusing. I want to be honest... I want to protect them... I HAVE to protect them. Ahhh.... another day is done. Time to go to bed and lay there wide eyed for several hours, thoughts rushing in and out. Tossing and turning... I am honest in this blog. Some people may not like it, but it is what I feel, when I feel it. I would want to know that I am not alone in the feelings that I'm feeling. All too often people don't share their feelings... their TRUE feelings because they are scared of what people will think. They think that they are weak or less of a person because they may seem out of control. Well... sometimes you have to lose control so that you can find it again. Anyways... this is MY blog, but it's for EVERYONE. Not for those to judge and criticize, but for those that are looking for courage to be honest and of course to find out about our special family and Ollie. We are grateful for all of your continued prayers for us all. THANK YOU!!!

1 comment:

Shelley Lanz said...

I know your pain... I know your fears and I am so sorry that both our families and all other families are going through this. I appreciate your true feelings because I know them. It is a terrible world we have been thrown into and I want you to know that I stand with you and step with you as you fight through each day, the good and the bad. Love to you and your family. I am so glad to hear that Ollie is doing well and that things have improved, I know it is great for him to get his abilities back and for you to see that and I also know that unfortunately the fear doesn't go away because the child is feeling well (thou I wish it would) I know the fear still lives so strong of what tomorrow might bring. I keep you all in my thoughts often and I will be back to visit often as well.
Always with love and hope
Shelley Lanz
Mom to Caleb dx DIPG Jan 28/10