Wednesday, May 29, 2013

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.

Tuesday, May 21, 2013

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.

Sunday, May 12, 2013

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,