April 15

What does grieving the death of your child feel like? How can I possibly express the emotion that fills my soul and occupies my mind? The depth of raw pain is something I didn’t know existed until January 14, 2013. The feelings that overcome my heart are not describable with our human language. To say it is painful doesn’t do my heart justice. I heard a poet describe the loss of a child as “put my bones on the outside of my body”. It is wrong. I sit here and try to think of things that could be worse than watching your child suffer for two straight years through some of the most awful things I can imagine. That when medicine has failed them and there is no more hope in man, we watched him slowly die. I watched my five year old take his last breath. Then I held his skinny body that was grossly swollen for two hours until the doctors had to take him away so we could donate his tumor for research. There are no words to describe this kind of experience, this kind of emotional trauma.  The question now is how do we heal? How do Chris and I find purpose in our days?

Someone told me that I should focus on the things that made Christian special and different. How is it that Christian didn’t seem to be affected the same way that we were? Why wasn’t he upset and sad when things sucked? My most difficult moments as a mommy are thinking of the times he suffered. Thinking of the pain he endured, over and over again. Recalling the last two weeks we spent in the hospital, while we prayed against his demise. These are the moments I have a hard time letting go of. I know and understand that we were fighting for his life – Christian was fighting for his life. I wouldn’t have made any different choices for him. Everything that was done was done in an effort to save our sweet boy.

Reliving the trauma and suffering Christian endured brings on my worst days, hours and moments. I can still hear the screaming, see the sadness in his eyes, and feel the pain in his body. Some days those memories are more than I can tolerate.  Christian was so unique. How does a little year three year old bear the load he was given? God is the answer. Christian developed an amazing connection and spirit during his treatments. I came to realize this again a few weeks ago when I ran into a friend while wasting the day away at a mall. For some reason we started to talk about Christian’s last two weeks (why I am not sure as I try to avoid speaking about him to anybody as I usually end up bawling and heaving uncontrollably) and I spoke about how horrible those days were for Chris and I. Yet Christian never seemed too upset and he was the one who was deathly ill. He of course constantly asked for food (which of course breaks my heart) but he never seemed defeated, he never asked to go home, he never asked for different toys, or when would this be over? My friend reminded me that I often spoke about the peace of his hospital room, how other people would comment about the love and warmth felt while in his space. It is a scary place to go and visit a person who is dying. But everybody told me that Christians’ room was relaxing and full of love. Then it absolutely donned on me that Christian was home, he was home because he had the love of Chris and I who rarely left his side. One of us was always sleeping beside him or sitting nearby. People he loved constantly surrounded him and touched him and spoke to him. He had his favorite toys and movies. He had what he needed to feel loved and complete. As long as he had the physical contact he craved and the attention of Chris and I he was at peace, wherever he was.

I believe that the time he spent in an unconscious state, or just simply sleeping, God was ministering to his heart. God was helping him to comprehend what was going on. I believe that Christian knew exactly what was happening to him because God explained it all. It is why he wasn’t scared or afraid. He was at peace because he understood. And I believe was most certainly given glimpses of the glory of heaven, of God’s greatness. When I am at my most weak, when I am so sad that I can barely function, I like to think about what Christian knew, what he felt in his heart. His spirit grew, changed and connected to God and to other people when his body didn’t have any other choice.

He learned love, a deep soulful type love that most people never get to experience. He loved, as an adult understood love. He understood the implications of showing or not showing others love. He could look a person in the eye and immediately you felt a special connection with him, he made you feel special. He wanted everybody around him to have a smile on his or her faces and had many little tricks up his sleeve to do it! It might be with on of his silly tongue tricks, making a goofy face for his brother or sister and sharing whatever he was playing with to keep the peace. For adults he had a soft hand across your face, the gentlest kiss on your check (or if you were real special – your lips!), a rub on your back and the most amazing hugs. Anything to let you know that he cared about you and wanted you to feel comforted by him. He craved physical contact, right from the day he was born, but it most certainly blossomed during his treatment. Any kind of physical touch made him feel secure, at home and loved. I relish the moments we lay in bed together, back to back or with his legs across mine. I love the moments he asked me to “count his back”, meaning to count the vertebrae from top to bottom and back again. These moments our souls connected and became one and any other person who had the amazing opportunity to spend time with him also felt this same union. Even though he is gone I still feel this bond. I know his desire is for peace and joy in my heart and if he could hug me, he would. So in hopes of my intense grief fading I allow those moments to come, and hopefully go, then I look to his smile. I ask God to help me and fulfill his promises to our family. I ask for strength for each day and each hour in the day.

Always behind you, even in death, protecting you....

Sweet Christian I pray one day I understand and embrace God the way you did. I pray that you stay with me and I can keep you in my presence. That you guide my walk with God and show me His glory. Tomorrow is Evelyn’s fourth birthday and I know you would have wanted to make it special for her. You would have loved to make her a cake and sang her happy birthday. You would have picked out a toy from the store that you know she would have loved and wrapped it with great joy and anticipation. I can see your smiling face now as you watch her open your gift and then you guys would run up the stairs to play with it. Please visit her in her dreams and help her to not miss you so much. I know she dreams about you and loves you like only a little sister can love their big brother. I will see you tonight in my dreams.

Love Mommy