One way ticket

Dear Christian

Tonight as I lay in bed with Ryan we talked about you in heaven. He told me that you were coming back. But I told him that once you went to heaven you couldn’t come back, you stayed there with Jesus forever. He said we could take a plane and go and visit you but if we couldn’t come back then I had to go with him. Oh how I wish that was true, that I could jump on a plane and six hours later hold you in my arms. But the distance between us is so much greater, yet I know we are closer. The honest part of me has to admit that I just don’t believe it. Where others grieving see clouds and butterflies to remind them about their missing angels, I don’t see anything. I don’t see your face except in weird random dreams, so frantic to see your face that I try desperately to go back to sleep to try and experience it again. Every now and then I will feel a cool breeze come over me, like I did almost on a nightly basis in the hospital before you died. Or the other day I could smell the plastic from your GT while Evan and I were at the swimming pool, at first I was mad because I didn’t want to remember that part of your journey. But the smell seemed to follow me throughout the day and I did feel as thought you were walking with me but then I haven’t smelled it again.

Love the look on his face - so beautiful

Parts of me are already starting to forget what normal life was like with you. I guess we didn’t have much of a normal life, racing to the hospital in the middle of the night, constantly fretting over fevers and medications, watching every pound you lost or gained and praying for the day that ‘normal’ would crawl back into our home. I am worried that I will start to forget how you felt in my arms, what your voice sounded like asking me for food, and how you looked when you slept beside. I will never forget the feel of your leg over mine as slept, you rubbing my face with your skinny little hands and the way you made your brother and sister laugh with your silly faces and antics. Something’s in this world are priceless and unforgettable and you my sweet boy are one of those things.

There are so many great things about your brother and sister that make me smile; Evelyn is constantly meowing like a kitty cat (especially first thing in the morning), Ryan has taken to rubbing my arm and telling me he loves me. They love to make each other laugh (that is when Ryan isn’t screaming at her or biting her!) and truly love and protect each other. Ryan talks so much and is so busy I know that he would have been driving you crazy in all of your Star Wars toys and messing up your stuff. He pretends to be Darth Maul all the time and I think you two would have had many Star Wars light saber duels in his room. I miss you. There is nothing else to say but I miss you.

Everyday my prayer is, “God help me”. There are no other words I can utter or moan but I feel peace knowing He hears me. People you say, “oh you must be so strong, I couldn’t do what you have done”. But that couldn’t be further from the truth. Your daddy and I do what we are doing because we don’t have any other choice. Just like the seven other parents whose baby died from cancer today and the seven other children who will die tomorrow from cancer. To lay down and die, to not get out of bed, to walk around in a coma, to turn my back on Ryan and Evelyn these are not options, they are things made for movies – not real life. The real answer is that God sustains us when we are not sustainable and He carries us when we cannot walk. There is and never will be an answer to why you are gone, there is only faith that God has you wrapped safely in his arms. My faith tells me that one day I will see you again but this day will be the beginning of forever in paradise. Save a place for me.

Nova Scotia

Dear Christian

i will forever miss that joy in your face....

It seems as though it has been a long time since I have sat down and written you a letter. Sometimes I just don’t know what to say to you; sometimes I think I can’t handle the pain of missing you. The writing of letters to you always ends with me in sobbing and painfully trying to hold myself together. So perhaps instead of lamenting over my broken heart and the missing you so much that I want to vomit, I will tell you about how much fun your brother and sister are having in Nova Scotia. It has been difficult being here without you. Every house, every person, every park, every smell and sight bears a memory of you. To this end I am forever grateful for Evelyn and Ryan and their uncanny ability to always find fun and laughter. Daily, if not hourly, they make your daddy and I smile. Tonight in the car ride back from Nanny’s house Evelyn was telling knock knock jokes (which was of course your deal first – she learned from the best!) When she was done with her joke she looked over at Ryan and said, “ok its your turn to make me laugh now!”  

Ryan or ‘George’ as Rod as so aptly named him is absolutely loving being out at Nanny’s house. He is walking in your footsteps with his love of the dogs, his desire to ride on anything motorized and of course his endless pursuit to find somebody to play hockey with. Tonight Ryan and Daddy spent some time out on the grass in the back yard hitting the golf clubs. I know you were standing with them, I know you watch over your little brother and sister. Most days when I find myself in tears and having a pity party my belly starts to roll over onto itself and I like to think that you are telling the baby to give me a literal kick in the arse. I find comfort in knowing how close you are to your new sibling. How you can explain God to them, share love with them, and that they will in fact know their older brother in a way nobody else does.

We have spent a little bit of time at the parks but the weather has been so cold. I haven’t been able to take myself to the trails at Victoria Park where I spent almost every day last summer. I spent almost every minute of my runs and walks thinking about you and praying for you. And now I fear that the memories of you would haunt my time there. That being said I know how much you desire for me to be happy and at peace. I will try my best to go and walk and be with you and God and nature and everything that ever lead me to that park in the first place.

Evelyn loves playing in ‘her room’ at nanny’s house. They like to pull out your Star Wars tent and play inside together. How my heart aches with you not inside the tent with them. There have been no light saber battles and I worry that nobody will ever be able to teach Ryan as much about Star Wars like you would have been able to. I find myself constantly turning over Nanny’s pictures of you in her house because I can’t bear to see your sweet face constantly staring back at me. I feel your presence so strongly in her house and I know it was a place you loved to be, you felt at home, you felt normal and I know that Evelyn and Ryan feel the same.

Well sweet heart I cannot write anymore this evening. Please know I think about you almost every minute of everyday. My silent pain is constantly in the pit of my stomach and I find peace only in thinking of you in heaven, watching over us. I love you so much. And like Evelyn says, I love you to the clouds and back.

Mommy

Save a place for me

I am a grieving mother. We are the family that other things happen to, you know, you see it on television or hear about it in the news but it doesn’t happen to normal people. I am sitting here on my bed in Nova Scotia, one of Christian’s most favorite places to be. The place he had so many firsts, so many great days, so many great memories. Last summer was glorious and liberating for Christian, as he really became a young boy with the ability and desire to do all the things a five year old wants to do. And now all the things that never will be again surround me and my heart and soul feel as though they have been ripped from my body and the rest of me has been dropped in a deep well. There are many dark and secret things that a grieving mother and father never want to say out loud. Sometimes not even to each other. Mostly out of fear, fear of what other people will think, fear that somebody will want to check me into a hospital because they think I am suicidal but mostly just the fear that nobody will ever understand the pain grieving parents experience on a daily, hourly and minute by minute basis.

It is a horrifying experience to watch your child suffer through years of trauma, pain, surgery’s, disappointment, sickness, limitations, anxiety and the inexplicable emotional nightmares. It almost haunts me more than watching him suffer through his last breaths. Thinking today about the extended time he spent in the ICU intubated, I want to be sick to my stomach when I remembered the moment I saw tears coming down his eyes and we were desperately trying to figure out what was wrong without him being able to verbalize it because of his breathing tube. Finally I asked him if he needed a cuddle and he shakes his head, “Yes”. Forgetting that for the past 10 months he hadn’t gone a day or more likely an hour without cuddling us and here he had being in this ICU for almost a week without our touch beside him, my arms around him and his head on my chest. Moms and dads,are the gentle and ‘safe’ person for their children, we are the oncology ward specialists. We are the ones to administer the needles, change the dressings, calm the fears, hold the barf bucket, try to stave off the fear we see mounting in their eyes, attempt to answer the questions to which there are no answers. “Mommy, when will all this cancer business be over?” I wish I didn’t have the answer to this last question of his, but his physical battle with cancer ended on January 14 of 2013 and I fear that the emotional scars of these past two years will last until I am lowered into the ground myself. We have seen things that I will never be able to describe to another person unless they walk their child into the same unit and experience the same level of fear and torment. I do not blame anyone for not wanting to walk in these shoes, I don’t want to walk in them and I wish I could say, “thank goodness that is not happening to us, we are so blessed.”

What most people don’t see about the grieving process are the heart wrenching moments you would imagine a brokenhearted parent would have. The moments we hide away in a dark room and behind closed doors where nobody can see. Today I was reduced to absolute sobbing as I drove away from the golf course where I had dropped Chris off to play a round, a round of golf that didn’t get to happen for Christian. There will be no celebration round for him this year at the Truro Golf Club, at least not one here on earth. But the sight of Christian's beloved Eagle head cover on Chris’ driver was more than my heart could tolerate. I tried to keep my eyes opened as I drove down the street, cognizant of the groans escaping my lips and tears covering my face. You don’t see the times I hide in the bathroom stall silently balling or covering my mouth with my sweatshirt, hoping that the person next door won’t hear the intermittent sobs. Fits of anguish brought on by the slightest mention of a word; hospital, surgery, Star Wars and Hero Factory to mention just a few. The sight of siblings playing together and enjoying being ‘friends’ reminds me of what Evelyn and Ryan lost in their big brother going to heaven.

Most people wouldn’t understand the deep anger that rises at the most inexplicable times. Its not rational but it happens. Watching people with their children (usually somebody Christian’s age) and wanting to jump up in a rage and ask why they get to keep their son and I had to give mine back. How is it possible that everybody else’s world seems to keep moving forward and I am stuck here at the bottom of this well? How is it that time has not stopped to allow me to grieve? Don’t people know the pain in my heart? A pain so real and tangible that it takes my breath away and drops me to my knees. I want to grab people by the shirt and yell, “Don’t you know?” ............ ??????  I can hear the whispers of people so desperate for us to be “better”. Not because they are want us to “move on” but because they love us so much. Yet I am fairly sure that I will carry this intense pain in my chest for the rest of my life. Some days I feel ‘fine’ then a moment will bring Christian to the forefront of my brain, a word he would have spoken, a song he loved and I can feel that deep intense pain begin to rise out of my stomach, my chin begins to quiver and my face tries to turn away the tears, but they come. And they come with such intensity and ferocity that I am reminded about how deeply he touched me, how deeply he has affected my heart and how his struggles over these past few years have tattooed themselves on my soul. I cannot wash them off; I cannot cover them with another person’s love, a new baby does not fade them. They are there permanently to remind me.

I don’t think I will ever be “better” but I will learn how to survive, smile, enjoy my days with my children, spend quality time with my husband, laugh and remember Christian fondly; yet I know the concentrated torment deep down inside of me will never go away because nobody ever ‘gets over’ the loss of a child. There are many days I think about dying. I wish I could die, not because I don’t want to live but because my desire to be with Christian is so powerful. I can only imagine the glory that he lives amongst and I am anxious to share that with my family. I am anxious to see heaven and the “place that has been prepared” for me. I read the book called “ Heaven is for real – for kids” and it gives descriptions of what the little boy saw when he entered heaven, then it gave scripture to support what he was seeing. One of the last pages describes a little golden chair that was brought for him so that he could sit right beside the Father. This picture brings me a lot of peace as I know that Christian’s rightful home is with his heavenly father, just five years, four months, and eight days after he became mine – I gave him back.  I know this was God’s plan for him and our family. 

I can accept and try to trust in what has been given to me, but it is an endless project that will never be done. A bridge whose completion date is unknown and will forevermore need repair. I am perpetually grateful for Evelyn and Ryan, who speak Christian’s name freely. Who don’t worry about what I will say or do if they ask a question about him. Who could never understand how much comfort and sanity it brings me to hear them talk about Christian like he is still around us. They speak his name with pride that only a big brother can earn. Christian. Most people are afraid to say it, fearing the response it will bring. And they are right; sometimes the memory or statement is painful but never more painful than pretending he didn’t exist. Never more painful than not validating his courageous battle. Never more painful than pretending I only have two children now instead of three. Never more painful than when I say his name and people turn their eyes away because they just don’t know what to say.

I remember when we first learned of Christian’s relapse in the summer of 2012. I sat across from a dear friend who had just heard the exact same news. We held hands tightly and I asked her, “How does a person live the rest of their lives missing someone?” Well I am now immersed in that life and it is more painful and appalling than I could have fathomed.

Beaches of Nova Scotia

Bits of sunshine come into my day, rays of hope find their way to my innermost pain. I feel Christian speaking to me when I am most sad and despondent. He speaks to me then because it is exactly what he would have done had he been here with me now. He would crawl up into my lap and wrap his skinny arms around my neck and tell me that everything is ok. When I can feel the intense pain rising inside me I scream out to God, “Please help me”. And I know He is. I know His plan for our little family seems crazy, unfair, unjust, and wrong. But I do know for sure that God has opened his hands around my secure little world and allowed various things to happen, but not to punish me or teach me but because it is what is best for us.

My very good friend explained it like we are rowing in little dinghy’s lost out at sea, and a yacht glides by our ever waning little row boat as we struggle with the oars. Wouldn’t we all as parents throw our children to the safety of the boat above and yell out that we will join them soon? I am 100% sure Christian is enjoying his time aboard God’s yacht, while we painfully row our little boat out in the sea and wait to see what He has in store for us. I know He will calm our seas, walk out to meet us and pull us ashore when the time is right. Until then I know that Christian is in the hot tub on the top deck basking in the glory around him, saving a place for me.

Mothers Day

How we spent our last mothers day together.... 

Dear Christian

“Happy Mothers day” – I can hear this whispered in my ear this morning. I know you would have rolled over and rubbed my face and told me how much you loved me. I sat in your room tonight and tried to take in all of your toys and things that you loved. I just about pulled out your drawer of Star Wars guys, I can hear you asking me if I want to play with you. I wish I knew which guns went with which guy and whose light sabers was whose, I felt some sadness realizing that nobody will love your Star Wars toys with as much care and concern as you did.

I sit with Evan on my bed and watch her moving around and playing. She has so many of your facial characteristics – I look at her and Ryan and imagine you beside them. I really don’t know what to say to you today but I know in two days time you will have been gone from me for four months. Four months of the worst days of my life. I am so grateful for Ryan and Evelyn who keep me going and constantly bring smiles to my face. This kind of grief is very lonely and isolating. I cannot possibly describe to someone else the kind of pain I feel. By the grace of God the instances of intense pain have lessened but it seems that when it hits me I can barely breath. The air catches in my throat and I can’t speak. When I speak to people about you or even try to speak your name it is just like you left me yesterday and the pain comes rushing back to me all over again.

Ryan has come to join us on the bed just as Four Square comes on Tree House – Ryan looks over at me and says, “look mommy, its your favorite show!” He knows how much fun you had teasing me about those silly men in their blue tights and its like he is making sure I don’t forget. In two days we leave for Nova Scotia and I wonder if it will bring up a whole new world of emotion. I have never once in the last five years gone there without you, I have never walked through the gates at the airport without your excited little face leading the way. How will I walk thru the doors without you? Truro was one of your most favorite places and I know that every park, store, playground and loving family member will hold cherished but painful memories of your amazing little spirit. I pray for peace and God’s grace as we go to remember you in our Eastern home. I know you will not leave us as we travel and I pray I can remember to be still and wait to enjoy your presence. I love you so much and miss you like crazy on a day that you would have wanted me to feel so special.

A kiss for you today

See you in my dreams,

Mommy

"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

March 27

You and Evy in Mickey's House

Dear Christian

It has been a long time since I have written you a letter. I can’t decide if the days are getting easier or harder. One of the main reasons I don’t want to blog to you is because I don’t have any new pictures to choose from. I hate that your last pictures look so sick and unwell. I like to go back to the pictures from Disneyland when you were so healthy and strong. When your cheeks were full and your eyes sparkled. The color of your skin was a beautiful pink and smiles dominated your face. I want to remember these days and not your last days.

I seem to have the most difficulty when I think about you getting sick, it has always been my biggest fear – to watch you slowly die. I knew with where your tumor was that your death would not be pretty or fast. That you would suffer and would feel every ounce of limitation. Your last three weeks here on earth were the most difficult weeks of my life and I just can’t seem to get them out of my head. My only peace comes from knowing that you do not dwell on these things. And if you could speak to my ears you would tell me to let those horrible thoughts go and to not remember the pain and discomfort but to relish instead in our love. The times we spent lying together in our hospital bed. The times we laughed over the same parts of the movies we watched over and over. The last night we spent cuddled together I woke up to find you curled over onto my shoulder despite the fact you were unconscious – you found a way to me. And I can remember how your breathing improved overnight and I lay there in the morning watching the monitors and feeling your head on my shoulder. I remind myself that you never asked to go home or when this whole ordeal would be over. You never asked any questions, you just did what you had to do. And I like to think that God ministered to you in your sleep and in your unconscious state. That He spoke love and understanding into your soul so that you were never troubled.

Yesterday I clean up your room and put some of your toys away. I like to think that you sat beside me on the carpet and touched my leg while I slowly took apart your hero factory guys and packaged them away. I like to think you smiled while Evelyn enjoyed playing with Cat Lady like you guys used to do so often. At midnight last night the moon was full and shone thru your window and lite up your whole room. I layed on the floor and cried and asked God for peace. I remembered all the times we spent sitting in that same spot with your Star Wars drawer pulled out. We would organized your men into categories and put all the right guns and lightsabers into their hands. And all of this is still so surreal. I cannot believe that you are gone. That I can no longer play with you or hold you. We went to the pool today and it always makes me sad when I think about how much you loved the water. As Evelyn gets bigger and stronger I know you two would have been the best of play friends. She swims around the pool and jumps off the side just as you did.

We went for lunch after swimming and Ryan ate a toasted cheese bagel and I quickly remembered how many of those bagels the two of you shared. You would pull all of the soft stuff out of the middle and Ryan would eat anything that was left over. This morning I said to Ryan, “Do you remember eating bagels with Christian?” And he said, “I do remember eating bagels with Christian, in my dreams”. I pray that you are visiting him in his sleep so he will never forget you. That he will look at your picture and always remember you as his big brother. Yesterday he hurt himself in the toy room and he began crying, “I want Christian, I want Christian”. And I never thought that my heart could hurt so much. Not just for our loss but for theirs as well.

Well sweetheart when I have moments of missing you that are always followed by tears I think of the verse your papa shared with me from Hebrews 12:1

 “Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us”

And I find peace knowing that you are watching me and guiding my heart. That you dance around heaven and clap and sing when you see your family having fun and rejoicing. That the same things you longed for hear on earth you are earning for in heaven. That each of us is loved, smiling, happy and comfortable. I love you so much.

Mommy

March 5

Dear Christian

I am sitting here on the floor in our vacation house in Phoenix, in the corner of the room, and you are on my heart so heavy today. Some days are better than others – today was a struggle. Everybody grieves differently and in different stages. I have been trying not to look at your pictures or think of you too much as the pain is just so overwhelming and I don’t know what to do with it. But today your daddy was missing you so much. He told me he wished an angel would bring you back to us. This set me off on a sorrowful episode of missing you more than my heart could handle. I had a vision of the doorbell ringing in the morning and when I go down the stairs to answer it you would be there, waiting for me. I would ask you where you have been and you tell me, “I was with Jesus”. The vision only reminds me that I can’t have you any more, I can’t return your smiling face with love, I can’t hold your little body. So instead I decided to write you a letter and tell you how much I love you.

Most days when I am sad for you, or am feeling crushed by all that you had to endure over these past few years, I like to think of you in heaven. I find peace thinking of the glory you are amongst and the notion that pain is no longer a part of your days. I imagine you smiling and enjoying your freedom. I imagine you looking down on your family and loving us from afar. I wish there was someway that I could feel this love in a tangible way. Today your daddy and I went on a hike and we talked about you a lot. We talked about how much time we spent in the hospital over these past few years. When you were first sick you were just a little boy, so small and innocent. Daddy always stayed with you because mommy had a new baby to take care of at home. You always kept him awake till the wee hours of the morning. Playing DS games and watching old Spiderman and Batman cartoons. But as time wore on you grew up so fast. You became a little man, a wise old soul that touched my heart so deeply.  I try not to cringe when I think of the days that were such a struggle for you, I don’t want to think about them because I know you don’t consider them either. You are not sad they happened and so I shouldn’t be either.

The thoughts I try to get out of my head the most are your last few days here with us. We prayed and believed so hard that you were going to be healed that it was such a shock when Nurse Megan told us you were taking your last breaths, that I should get up into bed with you and hold you. I can see your skinny face covered by your oxygen mask, your whole body desperately trying to take in each breath. We had just finished giving you a bath and change your diaper. You were clean and ready but we could tell by the way you went limp when your daddy lifted you out of bed that your soul was already gone from your body before you actually took your last breaths. So I like to imagine that while I cried and prayed holding you those two hours after you passed away, that you were holding me. That you were stroking my hair and touching my face and trying to tell me that you were so good. That the pain was gone and you were amongst glory and greatness. That Jesus himself carried past the pearly gates and welcomed you. That you felt nothing but love and pure joy, like no love or joy I could ever imagine.

Now I am trying to find a way to reroute the love and affection that I had for you into something good, into Evelyn and Ryan. I am trying to find ways to remember you without breaking down into a million sobbing tears. Your daddy and I talk about you every chance we get, to anybody who will listen. We want everybody to know how proud we are of you, how proud we are that you fought and fought and fought. It helps to talk about you to other people, even if it makes me cry it feels like you are still around when we speak your name. Evelyn often tells me of things you guys have done or places you have gone even though you are not here so I know that she plays with you in her mind. The other day she told me you were far away in unicorn land and there were so many games that you guys didn’t get a chance to play. I pray you are watching over her, easing her pain that she doesn’t understand or have the emotions to express.

I miss you Christian, to the million stars in the sky and back.

Love Mommy