As a popular song says- let’s start at the very beginning.  The start of grief- diagnosis day.  That fateful day we had naively started by worrying that Mary might need surgery to correct an eye cross (how would we afford that?) and ended with us being told our beautiful, spunky 4.5 year old had terminal brain cancer and likely 9 months to live with treatment.

I have lived with the letters DIPG for over 4 years now and my brain still doesn’t understand how that toddler who was so full of life and sass was dealt this fatal cancer.  I remember living in denial until the biopsy came back and even then not grasping the reality of that diagnosis; constantly thinking “no this isn’t my child who is going to die”.  I like to think I am a fairly intelligent woman, but my heart and my head couldn’t wrap around the truth that my daughter was going to die at a young age from cancer.  How can any parent, or anyone for that matter, truly understand that. In her final days I still couldn’t grasp that and was in fight mode still.  This is OK if this is you.  Hope is important, hope is necessary to do hard things, and this is the hardest you will ever do. Give yourself grace to feel whatever you need to feel.

Diagnosis day changes you- life begins to be defined by “before diagnosis” and “after diagnosis”.   From that initial day when the mass was seen on the MRI life changed- we slowed down- we sat with the kids more and played, I took more photos and videos than ever before, things that took us away from our children were no longer deemed as important.  Every second mattered that much more but every second was shrouded by this all-consuming grief, at least it felt all consuming at the time.  4 years later we now know this was just the beginning of a lifetime of grief that changes you to your core.

I started this blog not only to hopefully help you feel less alone by sharing our experiences but also offer some help. These entries will not be in order of our journey because our brains don’t work linearly anymore. Time of year, a song, a toy, a photo brings up thoughts and feelings. They bring us back to a time or jerk us into the present and those are important things to share.

If you are having trouble sharing with people your journey- journal or share this blog with friends when something connects with you but also know it is ok if you don’t want to share. Sometimes just living with your own feelings is too much- let alone trying to articulate them to others.  It is ok to tell people “I don’t want to talk about it”.  You owe no one an explanation but I am sure you feel you do. So, if that is the case and you want to share anything Carebridge is a great free source to be able to share and update people.  These types of sites are a great way to do this when you feel up to it as people can subscribe for updates and you can easily paste it on your social media- instead of the endless individual calls, texts and Facebook posts. Just remember- these “free” sites are free because they will ask your followers for donations. It will often seem to followers like the sites are fundraising for your needs so definitely let your friends and family know you appreciate them following your story, and respecting your boundaries, but that anything donated to the site does not help with medical bills/family needs. Something we discovered months into our journey was a big misconception by people.

Sharing your journey isn’t for everyone and not sharing it is okay. We shared a lot because we hoped it would help others, but it did come at a cost. When we lost Mary we realized we had shared so much of her we had lost control over controlling and sharing how her memory was honored because so many people fell in love with her.  This is not wrong and we are so thankful so many people loved her but when you lose a child you cling to everything that was them- their scent, memory, photos.  It is ok to turn around and reign what you share and allow others to share at any time.  Those things are what you have left and they are always yours.

Until next time- hug your kid and those you love a bit more today and Mary- love you, miss you, mean it.