It's been hard to blog and relive everything that has happened since Oliver passed. I've been working on the same blog post about Oliver's visitation for over a month now. It's so hard to go back there and bring up the emotions again. Life has been difficult. I've become more of a hermit because I just can't be around people. I feel like I'm going to explode on some innocent bystander because of the intensity of all these mixed up emotions raging inside my head. My fuse is shorter than ever and I just can't stand people's trivial crap. I don't want to snap at anyone so I just tend to stay home where I am protected from hurt and I can't lash out at anyone... even if they do deserve it!
People just don't understand death... especially the death of a child. There are well meaning people out there that have been supportive and I cling to those people. I think the only people that truly get it are those that have lost children, especially losing them to DIPG. We share an unfortunate similarity in watching our beautiful children being slowly robbed of their ability to function in every aspect. It is heartbreaking to know that you have absolutely no control whatsoever in slowing it down or stopping the progression altogether. To witness your child start to stumble and fall and then lose all ability to walk, sit up and move. To hear them start to slur their speech until you can no longer understand what they are trying to say, all the while watching them get frustrated because you can't understand them, until finally you hear nothing as they no longer can speak. To see them choke on food, liquids and eventually their own saliva and then start to drool as they have no control over their functions. To see their skin stretching all over their body and eventually ripping open and causing sores that won't heal because of the steroid that they have to take to keep the symptoms of the tumor growth at bay. We had to watch them struggle, watch them be humiliated by having to wear a diaper and crawl on the floor to get around. We had to turn our homes into make shift hospital rooms and watch as they breathed through oxygen tubes and wiped off seeping eyes that crusted shut. Slowly... we had to watch them sleep more and eat less, knowing that they were soon to pass away and there wasn't a thing we could do, but to watch and pray that they weren't in pain and weren't scared. It is sick. I am heartbroken. I am angry. I am confused. I am not the same person I was... nor will I ever be. I have to endure a life of people trying to rush my grief. I will NEVER get over this. I can't. My mind replays this journey and I have to relive some horrifying things. I'm sick of people diminishing my grief by trying to fix me. They trivialize my loss by saying the most offhanded things. Don't try and FIX ME, just be there for me... listen to me... support me. If I want advice I will say, "I need some advice..." Everyone thinks they have the answer. Everyone's journey through grief is different and I happen to have a mental illness which makes my emotions like 100 times more intense than normal. A fellow DIPG mother recently said that when she is around happy people she feels herself withdraw even more. I completely understand that. Most people have no clue and tell you to just get out there. They are what I like to call 'blissfully ignorant'. We want to be positive and find the silver lining, but WOW... give us time to get there!!! There is no timeline for grieving. I will be grieving Oliver's death for the rest of my life. Don't get me wrong... we celebrate him and think of him and talk about him every single day. We know he's here... but he's not HERE. I know that his spirit is around us, although I don't feel him near. It is extremely difficult that I don't see his smiling face each morning. I don't read to him or play games with him. I don't hear his laughter or his silly one liners. I don't see him sitting across from me at the dinner table. I don't feel his soft skin or the weight of his body as we cuddle on the couch. He was always my cuddler. He's not here to participate in holidays -- which he loved. Holidays have been really hard. I've been trying to go back to church, but it is horribly difficult sitting in the same room where I saw my son's face for the last time and being around people who are so 'blissfully ignorant'. It's hard to go anywhere... not just church because there are 'blissfully ignorant' people everywhere. I used to be one of them. Our society does not know much about death and grief and what life is like after you lose someone, especially a child. It saddens me because so many people are grief stricken and are rushed to get back to normal. There is no 'normal' anymore. You can feel fine one minute and be a complete wreck the next. Your mind becomes mush and you can't remember anything because the sadness takes up so much of your brain. It's so hard to explain... I know other DIPG parents will 'get it'. I hope that by sharing our journey, more people will 'get it' in a way that they can be more of a support to those that are suffering so much. It's more gut wrenching than people can possibly fathom. It really is.