Today marks 2 months since I lost my Abigail and our lives were sent into a tailspin. During my journey with her and our fight against this awful cancer, people always were ready to give us advice on a variety of topics that ranged from the crazy to the helpful. We had people reaching out to us weekly with articles and treatment options to consider and towards the end we even tried a holistic approach in an attempt to slow down the tumor and give us more time. It was a whirlwind of information, data and advice. However once the battle was over and Abigail had left us for a better place the communications stopped. All of the positive thoughts and prayers were replaced with condolences and sadness. Friends and family kept reaching out, but the numbers dwindled until only a few remain in constant contact. Advocates who helped you brave this lonely disease moved onto other kids who were still fighting and your child just becomes a face on a poster or a name on a t-shirt. You go from being surrounded by people wanting to help to being a family left alone trying to pick up the pieces.
I don’t carry bad feelings towards anyone over this and know it’s a natural condition to want to leave people alone with their grief. What can you say to a family that just lost their previously healthy 8 year old girl? People always ask how we are doing and most of the time I say fine or OK or we are getting by. I know people don’t want to talk about how hard it’s been for our 5 year old daughter Emma as she adjusts to being an only child and dealing with loneliness and loss at such a young age. The fact that she hasn’t been able to fall asleep by herself since Abby died. People don’t want to hear about your anxiety over your daughters gravesite not being clean or how you need to do more to celebrate her or how your biggest fear in life is forgetting her and her memory just fading away. It’s easier to just say fine or OK or we are getting by.
I also understand that a big part of this is me and what I want to share with family and friends. I don’t want to talk about having to deal with this awful depression and painful loss. How certain days it’s an effort to even get out of bed and put clothes on. How juggling this depression and still trying to be a good dad is one of the hardest things I have ever done. This is stuff that I don’t want to talk about when I am over at a friends house or out to dinner/at the bar. I want to talk about the Bears and our new QB, I want to talk about politics and Trump, I want to talk about music, movies and Game of Thrones. The desire to get back to some sort of normalcy is strong and the need to move on is something that pulls at your daily. But I need to get better about talking about the things that I am not comfortable with, because they need to be said and I am not doing myself any favors when I keep them inside.
I feel guilty talking about wanting to move on and finding a sense of normalcy, because I should be spending all of my time and energy fighting against DIPG and working towards eradicating the worst thing that has ever happened to me and my family. A disease that is going to kill 300 kids this year and next year and the year after that until a viable cure is found. But the sad truth is that I don’t have that in me right now, the fight to save my daughters life has taken everything out of me and my focus now has to be on bringing my family together and figuring how to rebuild our lives. I hope to one day rejoin the fight against DIPG and work with so many great charities and organizations that are working towards finding a cure. But for right now my efforts have to be focused inward and on myself, my wife Rachel and our precious Emma. I hope to return to work soon and start working on our charity Another Day with Abby and getting that project off the ground. Our focus will be on providing financial support for other DIPG families as they start the hardest fight they will ever face. I hope to one day expand that support to help provide fundraising assistance for families who are struggling to raise money for extremely expensive treatment options that are only available outside of the USA.
I hope to commit to writing more regularly as it’s been very hard to return to it since all it does is remind me of what I have lost and how hard her not being with me really is. I have been writing a blog post off and on about Abigail’s life and what she meant to me and our family. I put in over a month of work and a thousand plus words before I realized that it was something that I wrote for myself and was not something I wanted to share with the world. But I need to get back to writing more regularly, because I enjoy it and I feel better after I do it.
So feel free to ask how we are doing and we might tell you fine or OK or getting by. We might talk about TV or Childhood Cancer, we’ll be fine with it and just happy to hear from you.
Another Day 
Adam and Rachael please call me anytime you want or need to talk/vent. I would love to talk with both or either of you anytime. 843-816-0256
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This just made me cry!! I pass your house all the damn time and this is so true! I think about you, Rachel and Emma all the time but why don’t I ask how you’re doing? I get it. I’m going through things and wonder the same if why people dont ask how i am. I’m sorry, but I do think of you often.
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We lost our 12 year old son to a very similar brain cancer that was also untreatable. While I still consider those who rallied around us during his lifetime to be friends there are few who call now, & wven fewer who stop by or invite us anywhere. Some of them have remained very true and very sincere and very much in our lives but that is just a small handful.
It is exhausting going through the fight and exhausting living after. We dance a Tango between grief and happiness. They become entangled. I applaud you for your openness. Keep writing whether it’s for yourself or for others.
Our family also started a foundation to help families battling pediatric cancer. I send you all our love from one grieving parent to another.
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Thank you for your perfect, beautiful words. I’m so sorry you lost your precious girl. My cousins seven year old daughter has just been diagnosed with dipg. I will keep your words in mind as I reach out to her family through their fight, and after…. a long time off, I hope.
I wish for you and your family the strength and peace you need to move forward to find your new normal.
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God bless your courage for being able to share this much! I’m glad you want to get back to doing what you do-being a dad, a husband, a writer…While the effort alone is huge, the desire is there so that in itself is a huge step.
I so remember feeling this way as I was raising my living children while trying to work and grieve for my son who died from his tumor. I wasn’t sure what to do with myself after he was gone! I had been relieved of the role that has become so familiar, albeit, crushingly painful. And I wasn’t sure in my heart, if it was okay to want to do ‘normal’ things again-as if I might forget and dishonor my son in some way. I think that was grief speaking.
I wanted to convey my deepest condolences for the loss of your daughter. And to let you know that you’re not alone in your feelings about all of this. I could relate to it all. I commend your desire to get back to ‘normal’ again.
From one grieving parent to another, God go with you on this journey down the grief road. It’s a good thing there’s no exacted route. Sometimes we veer off course and come back to the path, and sometimes we need to stop and take a rest from it all while we process. And for what it’s worth, the year of ‘firsts’ was, in my experience, the most difficult. First holiday, birthday, family photo, etc.. After that, the heart-stabbing starts to ease a bit and while it may still always be there, it doesn’t knock the breath out of you. You start to remember with love and fondness, the good stuff. The stuff that warms your heart instead of the sharp jabbing. It creeps in slowly, and can surprise us as it happens. It feels something like honor to me-as if they grief starts to lift a bit and warm love and honor takes its place.
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I understand the need to be a family ! Once the pieces fall into routine you can then decided then next path. Bless your heart !
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Hi Adam, Rachel and Emma . I just want to tell you that Abby will never be forgotten. We will remember that pretty smile. Maybe there are many people around you that you don’t even know, thinking on your family, how you are doing and hoping that you are doing ok and with time your pain ease but sometimes we don’t know how to approach , what to say, I think you know what I mean . For now I just want to say Hi! Maybe one day we can meet and Emma and my girls can play together. They will loved that.
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Thank you for sharing your heart in your blog. It touched mine in a way I didn’t expect. You see I am also a grieving parent. I didn’t lose my daughter, Ariel to cancer but a horrible car accident.
I would like to say I’m so very sorry for your pain. It’s undoubtedly the worst pain in the world and no parent should have to feel this emptiness.
I have connected with a group on FB called Grieving Mothers which is something your wife may like. For you there is a group called Ellie’s Way that is for anyone that has lost someone. The man that started the group lost his little Girl Ellie at about the age of your beautiful daughter.
I just want to send hugs and warm thoughts to you, your wife and your daughter. You will all be in my thoughts and prayers 💜
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