There is so much in this journey that is hard to comprehend for me; imagine being a child.
Imagine one day your sibling, parent, friend or close family member is gone and you don’t understand. Imagine this new world of missing, and all that comes along with it. The emotional and grieving adults around you that are your most trusted security. As an adult, I can only write and imagine what it is like to be much shorter, less experienced and more confused than I am right now…. I can only take from my experiences, with my girls, what grieving and loss looks like to a child. I can only look back at things that they understood or wondered, the way the talked about or felt their loss and the fact that they process this all so differently than most of the people reading this.
When Madeline died, her sisters Amelia and Lucy were there. It was a surreal, sad, beautiful and painful experience. It was the last time we were all together. At 3 o’clock in the morning were sitting on Maddie’s hospital bed, Lucy at her feet snuggled and being a two year old with two big sisters for the last time… Amelia was holding Madeline’s hand singing to her and understanding what was going on. She was so brave. It was so hard to witness, but she was right there- scared, sad, overwhelmed, heavy… she was there with Madeline. Matt and I were taking every bit of Madeline and our girls in, it was scary and different than I imagined. It was also peaceful and calm and just right, if that can make sense. My girl’s experience with death is very real, not only is it their sister that is gone, but they were right there holding her when she left this world.
Over the last two years I have observed and been shown by those girls how this has to be done. I am very used to hearing things that most parents would stop and not want to hear, but we must hear them. I must be okay with Lucy singing songs in Kohl’s about her sister dying and Madeline is dead and she had a brain tumor… all set to a cute tune. I must let that be her normal. I must love Amelia through her tantrums that can result in me getting a large bruised bite mark because she doesn’t know how to process being THE big sister. I am sure you all know that middle sisters are not created to be Big Sisters… it is a huge and dramatic role change. I have to be able to comfort my daughter when I am in a terrible place myself, I must hold on to her tightly and let her cry, the kind of cry that shakes your shoulders, and just let her let go of some hurt. It hurts. I also get to hear my girls recount stories and memories of their Madeline. I get to see them change people’s hearts… their faith is so real and tangible. I get to see them help other families and treat a child that is dying as a normal person. Most children do not see amazing and beautiful children with cancer as normal kids. I get to hear them tell their Grammie, when her brother died, that they can be there for her, their sister died. I get to bring them to my grandmother’s grave and talk to them about their family that is gone and about friends that are gone to which they respond that they are so glad Madeline has them with her. It can make them sad, but they get ‘it’, better than you or I do.
Here are some things I have learned along the way, I know there is more, but if these can help I would love people to carry them.
- Let your children grieve and come to terms in their own time. It may be much sooner, or longer, than you think they should. We all do this in our own time. Children process grief and missing like they do most feelings, they aren’t likely to stay in bed all day and think about it, but to have a thought, feel the feeling and maybe be off running and playing. Let them feel the feeling, even if it isn’t the opportune time. They need to know that it is good and safe to feel whatever they feel.
- Give them tools for comfort and understanding. Find books, movies and objects of comfort for them… let them guide you. We went through a lot of books. Some were awesome and others were boring or too analytical… Not bad, just not ‘us’. Let them choose a stuffed animal, an angel or something to bring along their lost person in a physical way. Give them tools like breathing techniques, journals, charms… whatever works well for your family and child.
- Let them be your guide as to what they want or need… sometimes they don’t want to visit Madeline and get out of the car and walk around. I respect that. Sometimes they would rather go to the playground or home… the same goes for talking about or digging into thoughts. If they don’t want to talk right then let it go… it will happen.
- Use your resources… find a good grief counsellor. I think most normal people would benefit by having a counsellor or someone to talk to. This is especially important in children dealing with grief. It is a safe person they can share the feeling that they don’t feel okay sharing with parents. They are trying to keep our crazy butts safe, children see us in pain and don’t want to cause more. They might not be able to share many thoughts, fears or issues with parents, but an outside person can be safe for them. Sometimes, just like an adult, they need to reassured that what or why they feel something is normal so they can understand and move on and maybe let that thought, fear or issue go.
- Do what your family wants to do to share, celebrate and remember your lost person… balloons, birthday cake, lanterns, trips, whatever it is that helps you all move and remember. Bring the good stuff back to remembering that person, the happy times. So often your child will be surrounded with people that are in pain missing, crying, remembering… bring back the love and happy that the person they lost evoked- so they can be in a place of happiness when they remember them. It is okay to have hard, heavy and sad times, but our lovely angels were not that. They were light, kind, bright, happy and amazing people, let your child feel that energy in this. Death is scary for everyone… try not to make it scarier for your children.
- Keep in contact with teachers, guidance counsellors, daycare, etc about life and how your child is. They need to know to be the best support that they can. Encourage them to let your child talk about their person- casually or not- and for them to make it comfortable and safe. They are great tools in this ‘new normal’… for you and your child. Talking to them often helps them know how you and your home is and lets you know how their time away from you is.
- Know that there will be changes in your child that seem like they are not related to this grief… they are. Processing this, just like in an adult, can look like other feelings or come out on other people. Sad can look like anger, sad can look like a stomach bug, anger can look like rage, jealousy can look like anger, denial can look like letting go or forgetting… and shock can look like a whole hot mess of numb, sad, forgetful, full of tantrums, not speaking, speaking… a bomb just went off inside your child and all the thoughts, feelings and organization are gone- their mind feels something and attaches a reaction to it and it may or may not be the right one… be ready to be ready. Be ready to calm and hold and support and sometimes freak out and say things you wish you hadn’t because you are in the same crazy state… but when the ‘BAM’ Crazy moment is gone, be ready to go in there snuggle and talk about it.
- It is a crazy ride… it is hard to think of all the ways things have changed and what tools or reactions the girls had. It is different for every child, parent and family. I will tell you this- Life is full of loss… how you handle, react, honor, share, put away, run away from, take care of or carry through will help or hinder your child as life moves. There will be more loss, we are not gifted lives with no loss. We are instead blessed with the ability to live, choose, enjoy, change and feel… with that, inevitably, comes loss. Life is full of loss, pain, grief, anxiety, stress and heavy but also of love, kindness, happy, joy, miracles and if you look hard for it peace. My advice to you is to seek those positive things, even in this loss, seek joy even if you cannot feel it, seek happy even though it looks different and seek peace somewhere you will find balance…
Support yourself and your children in this loss, show them how to live without…
Erin is wife to Matthew, mom to three lovely ladies- one of which just happens to be an angel, a real true angel. Her daughter, Madeline, became an angel in February 2012 just 5 days after being diagnosed with DIPG, a rare inoperable brainstem tumor. Most days she chases her lovely ladies, Amelia and Lucy, around as they grow, play and learn. She loves running, being with family and friends and writing.
Her family has worked hard to create Maddie’s Mark Foundation to honor her lovely Maddie and to help other families faced with challenging illnesses. In all of this Erin became the President of Maddie’s Mark and makes it her mission to share Maddie and her spirit forever. The foundation has helped her family start to heal, meet families they needed to meet in this journey and remind the world to enjoy a life of ‘best days ever’.
Erin loves to write. She finds much therapy in writing her thoughts and sharing what she has learned. She used to pride herself in knowing much about life and mothering… but feels that life and living and mothering have changed- that she has a bigger grasp on understanding life and living and parenting on her new journey accompanied with grief.