"Is Jesus going to save me?"

Dear Christian,

Its Friday morning and the kids and I are just sitting around watching Disney Junior. Everything reminds me of you this morning, well really every morning my thoughts are constantly on you. This particular morning while Ryan and I were cuddling in the chair he said, “I miss Christian, he is not here to play hockey with me”.  I constantly look over at your shelf and wonder about you, I stare at your beautiful face and desperately miss the sparkle in your eyes. Days come and go, weeks seem to slip away and the months run into one another. I have realized that my grief has made time stand still and I am shocked to realize that its almost May.

Evelyn is growing like a weed and it makes me wonder how tall you would be now. What kinds of things would you be doing? I try my hardest not to dwell on “what could have been” and instead accept what is. I am choosing to believe that God knows best. That he truly loves us beyond comprehension and has created things to exist just as they should. It doesn’t mean I love or miss you less – it means I am trying to trust that what God has chosen for our lives is best thing for us. Christian I am trying my hardest to open my heart to God's plan for us. I am trying to see how some good could come out of this – but some days this just seems so bad, it seems as though all the joy as been taken out of my soul and I am not sure if or how it will return. Evelyn and Ryan bring me moments of pure delight but it seems as though your death turned off my ability to experience pure joy. I listened to somebody on the radio yesterday describe the difference between happiness and joy. The joy was within our souls, God given and created. And happiness was an emotion that came and went with different environments and situations. Things can bring about moments of happiness or events can take place that take away your happiness but if you have God in your heart then pure joy exists no matter what the situation. Well I feel as thought I have moments of happiness. Ryan and Evelyn say and do things that bring me a lot of happiness but I pray for the return of joy into our lives, into all our lives. That God would fill the void in my soul so that I would have the ability to know joy again.  

The other night daddy put Ryan to bed and as per normal he fussed for a while then got quiet. I went to check on him before I went to sleep. He was awake and turned and looked at me and said, “Mommy is Jesus going to save me”. I was so shocked at his statement since he is in the habit of repeating things said to him but neither your daddy nor I had spoken to him about Jesus lately. He was so sincere and waiting for an answer. I had nothing to say since I was so unsure about what he could possibly mean. Then the thought came to me that perhaps you have been speaking to him, perhaps you told him that Jesus saved you. You told him how wonderful things are for you and Ryan was wondering if Jesus would do the same for him. I can only hope this was an answer to a prayer that you are safe, happy, healthy, free of worry or concern and even though worlds away – caring for your family as you have always done. I know that Jesus is going to save us all and I accept that He will meet me right where I am in my despair and sadness. I thank you so much for the beautiful message that only innocent little Ryan was able to relay. I desperately want to open my heart to knowing you in an amazing spiritual way. I love you so much and my love for you will continue to grow even though your body ceases to exist. I know your soul is loving and protecting us. Please stay with me and show me heaven. Show me the glory of God and the peace you relish in. I love you.

Mommy

April 19

Our Hero....

Hey buddy

I have been sitting here at the computer for a while now staring at the screen. I don’t know what to say. Your daddy says, “I miss you”. He went to the driving range tonight and said he missed having you there with him. I know you used to love to go there with him, just the two of you. You loved to take your clubs and “hit it on the screws” and practice your putting on the green. It is so hard to push through and do these things now without you. My only solace is that I know that you are constantly walking with us. I read a poem today that said that you are closer to us now that you ever were when you were here on earth. So I spend moments in the day, mostly when I feel as though I am going to break apart, and try to just sit and be still. I try to imagine what you would be doing in that moment, how you would comfort me. And I know that you are. I know that you are listening to me and hearing my conversations with you. Evelyn and Ryan have been having so much fun playing together and I am sure you watch them with joy in your heart. It is such a catch 22 because I know that you would have loved to played imaginary games with them. Tonight Evelyn had on your Batman cape and flower glasses and it reminded me of the day you dressed up exactly the same. They get out all the instruments and their new microphone and have a little garage band together. Oh the music you guys would have made!

I know that you already know this but it has been really hard for mommy to talk about. But you are going to be a big brother, again. We found out we were going to have a baby almost a month before you left us. I was so excited at the thought of new beginnings. I knew your nurturing, caring and loving spirit would have been so excited to have a baby around the house. I can still see it. I imagine you holding the baby and looking lovingly into their eyes. Wanting to help in everyway possible. The thought now that you are no longer able to be a big brother to this baby is more than my heart can endure. We have not really told very many people, yet, but my tummy is getting so big now I can’t hide the secret anymore. I have a difficult time explaining to people how difficult it is to be joyful about new life when yours was just taken away. I find a lot of comfort knowing how close you are to this baby. That you can already speak to it and tell it stories. You can introduce yourself and Jackie and let them know what a ride they are in for. Oh how I pray that you could be there with us.

Well I just wanted to send you a note and tell you how much I love you and miss you. How much I appreciate you calming my heart when it feels as though it is going to pop out of my chest. I pray you stay close to us and help us to understand.

Love Mommy

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

April 8

Dear Christian

It snowed today, it snowed a lot. Evelyn was so excited about the snow she asked if we could get out the Christmas decorations. It instantly made me sad because I didn’t want to think about another holiday without you. Christmas is so far away that I didn’t want to think about facing the challenge of decorating the house without you. Will I be able to watch Home Alone ever again? Thankfully I have a few months before all this will be determined.

I have finally been able to put some of your pictures back out, you ‘angry’ face now greets me every time I turn on my phone. I love going through old pictures, cropping them and making them new around you, around your sweet face. Trying to make some new pictures to hold onto.

Each morning when I wake I instantly try to remember every dream that passed through my mind incase you were there to visit me. I try to remember if I spoke to you or got to hold you. Most mornings I wake up and instantly feel disheartened and a little sick to my stomach when I remember you are no long beside me. I try to talk to you a little, tell you how much I love and miss you. I try to live each day thinking of the things you want me to do. But sometimes Christian, the pain is just so intense and real that I can’t even look at your face.  I find most of my joy knowing that you are walking with me, smiling with me and rejoicing over our small victories. I try to think of you enjoying the days with us and trying to keep us safe. Today daddy pulled out your light saber and swung it around making your favorite star wars light saber noises. Immediately I had a vision of you standing in front of him swinging back at him with the vigor with which you attacked your enemies. You would scrunch up your nose and burrow your eyes as if to say “watch out” I am coming for you!

I am trying to keep busy by cleaning the house and organizing all the toys and clutter. I have been doing a little painting and fixing things, thinking of you the whole time and how much you loved being a helper. How much you wanted to have your own tool belt, your own jobs to do. You were so clever and determined to follow through. I wish you could help me paint your bedroom for Ryan. He tells me he wants to sleep in your room. Even though it will eventually become his room he always refers to it at “Christian’s room” and hopefully you too can share it.

Some days I worry because I feel as though I am starting to forget the little things about you. The way you looked when you walked, how you sounded when you asked me for breakfast (sometimes hot cereal, sometimes French toast). I want to put you in my pocket, every memory and every fiber of your being. I just want you to grow with me and change with me so I can always keep you close to my heart. You got sick over such a long period of time and things changed so slowly that I seem to dwell on the bad times, the times you were in pain, when you screamed in our bed at night, being hungry and wanting to eat but not having any room in your tummy. I remember watching you lose your energy and your desire to play, or to go outside. Thankfully I have been able to ‘forgive’ myself for these times, knowing that you were at peace, that you were not upset or angry about what was going on. I know you understood the way a five year old shouldn’t understand, and I know that God gave you peace and reassurance. I rest on these thoughts and on the thoughts of you playing in heaven. Of your energy, your strength, your size, your love – they dominate my thoughts and bring me peace in the day. I love you and miss you so much. What I wouldn’t give for one of your squeezy hugs and to start counting our kisses again. I am sure we would get up to a thousand or more. I kiss my phone each morning – right on your grouchy face and know that it would make you laugh. Stay with me and walk with me, hold my hand and rub my shoulder when I cry. Lay with me at night and keep me company when I am sad. Talk to me in my dreams and help me to feel your presence. Guide my heart as I look for a new purpose in my days. I love you to your star and back.

Love Mommy