Goodbye and Hello

Cape Breton July 2012

To the great unknown, the abyss, the dark hole. I don’t know whom I write to. Maybe for Christian maybe for myself, most definitely therapy for my fractured soul. Fractured in such a sense that I cry on a whim, feel uncertain of each day and soulful songs send me back to the days of the hospital and times of ‘what ifs” and then the tears really fly. So here we are more than a month since my last posting and for all I know it could have been a year. Time seems to have hit a stand still I can’t tell if we are moving forward or just sitting here like a bump on a log.

Over a week ago I wrote a blog and didn’t get time to post it. The very next day my dear aunty Shirley suddenly passed away and my writings no longer seemed adequate. I was so full of sorrow for a life so suddenly gone. She was a true family woman and woman with a heart for God. I am so thankful for peace, faith and imagining the glory she lives amongst now. It is a harsh reminder for me to love hard and honestly. To hug and hold today the people I would miss the most tomorrow. Have I told everybody who means the most to me that I love them?

Aunty Shirley and Christian during our spring getaway

Captain Christain?

We have been in Nova Scotia for the better part of a month and it has been so wonderful for the kids and a big breath of fresh Atlantic air for me. An abundance of people who seem eager to spend time with my kids, beautiful hot sun, warm beaches, lush parks and sweet to the bottom of my tummy ice cream! We have had such a great time with Chris extended family here in Truro, NS. It has been an amazing blessing to watch Christian prosper and develop confidence. With each day he seems to feel more sure of him self and his feet! He runs quicker and with ease. He seems taller, stronger and hairier! He no longer shrinks away when somebody asks him a question and willingly goes with whomever wants to take him to get ice cream! I have such an immense sense of pride watching all of my children play together and enjoy being outside and just being kids. Playing at the beach, running around the parks and swimming in the pool. 

Box Red Sox!!!!

Chris and I have been blessed to spend a good amount of quality time together. We even took a quick road trip to Boston to watch the Red Sox play – I feel almost ashamed to have these amazing opportunities but we are so grateful for our blessings. Boston was such a calm and cool city to walk around. An endless amount of history to take in and waterfront to sit at. It was the first time in 6 years that Chris and I have gone away together and it felt like a million bucks to be together and eat at a restaurant without looking at the kid’s menu! Just today we came back from a quick family outing to Cape Breton. The kids had a blast at the resort throwing rocks into the ocean, exploring the grounds and getting rides in the golf cart. Some very memorable moments as Christian became the fish we knew he was, swimming around the pool in his life jacket and Evelyn being Evelyn asked daddy, “Why do you have all that seaweed under your arm pit?” Got to love the look of wet armpit hair and even more so love more the thoughts that pass threw her mind! 

So even though I am finding difficult to fathom how September will feel to me when life resumes in a few short weeks I am also optimistic and excited about what a normal life should/could be like with three young children and no hospital. We have some pretty huge days coming up with Ryan’s 2^nd birthday and four short weeks later it will be Christian’s 5^th birthday. It feels to me just like last week when we celebrated his fourth birthday here in Nova Scotia. We were so proud of him and what he had accomplished up to that point. What a change in plans that was in store for us. Who knew the power of possibility and the things he was still to overcome and battle. Who knew what Chris and I would have to face as we entered into that September so who knows what will face us this September. I have so many questions as I struggle to write these blogs. Will I be able to remember and cherish this year and a half? What is our new ‘normal’ going to look like? Will I personally be able to let go of the past and grab onto the future. Can I be humble and honest enough with myself to let God guide the rest of my life even when I am not in panic mode?

Christian, Ryan and Evelyn loving each others company

Sibling love and fun

Cape Breton 

God I pray that you would continue to be the lamp to my feet and the light of my path. (Psalm 119:105). I pray that You will stay the focus of our household and the vice grip of our marriage. I pray that you give me the ability to live each day so full of love, joy and optimism that people will have no choice but to ask me what’s up. I pray for peace in my heart as each scan comes closer and my thoughts start to tread to a darker color. I pray for patience as I learn how to become a stay at home mom of three children. I pray for guidance as we slowly lower Christian back into the real work of school and play, that we would dip him in the right pool at the right time and he would blossom with the opportunities presented and not shrivel with fear or self doubt. I pray that you remove the fear from my heart – fear not just for Christian's long term health but fears about my own inadequacies of being a good mother, wife and follower of Christ. I thank you for your blessings that continue to fall upon us and follow us wherever we go. I feel you saying to me more and more to let go of the past, remember it but let it go, and move to a better and brighter future. Praise God and thank you for loving me so much.

Today I am thankful for:

1.Hugs from strangers

2.A cheesy romance movie that warms your heart

3.Christian learning to swim again

Washers at Papa Norms

Ryan and Nanny Lou

THING 1, 2 AND 3

Dear Christian

Once again I begin a blog by starring at your sleeping face. Cheeks pink from the heat of your tub, newly grown hair sweaty from being bundled up in your nicey. Late June means beautifully bright evenings and the sun just happens to be shining through the blinds and illuminating you like you are a piece of art. The soft glow of light makes you look angelic, peaceful.

Fun at the waterpark

Yesterday we returned home from our amazing trip to Panama City Beach in Florida. It was a two weeks full of sun, beach, pool and enjoying being together as a family. That was until you, Evan and Ryan all got sick in the same evening. I was angry at first but then I thought, “well if we have to stay inside and nurse fevers, sore throats and coughs – at least we can watch and listen the ocean roll in and out while we do it!” So here we are at home – still sick but enjoying our beds and toys. There were so many great moments from our trip. Starting with watching you in the ocean. You loved to kick and punch the waves as they rolled in. You became so brave with your lifejacket on as you openly swam around the pool. Remembering what a little fish you used to be before you got sick. Listening to you and Evelyn play hide and seek around the condo when you didn’t feel like going outside. Evelyn lost because she would always hide in the spot you had just hid in, so funny and innocent. Watching Ryan, Papa Norm and you play mini hockey for hours on end on the living room floor. Getting stuck in the elevator was a first for us and something we will always talk about. Watching you develop more and more confidence with each day, doing things independently and proudly like a big brother should.

Panama City Beach at sunset 

Walking on the beach - my fav

Today I seemed to get sicker and sicker as the hours waged on. A sickness I can’t seem to shake. Now that we are at home and I have no ‘medical responsibilities’ I feel a little empty and unsure about my days. Today I burst into spontaneous tears at the thought of my uselessness. You came over to me and brushed your hand across my cheek and held my chin and told me how much you love me. I seem to lose my patience so quickly and anger at things that don’t normally bother me. I worry about things that are not mine to worry about. I wonder about what other people think of me and the decisions we have made as a family. Then I looked at your face tonight and I felt God saying to me, “I love you” and I remembered that I don’t need to please anybody or satisfy somebody else’s agenda. You reminded me that my purpose as a mom is to teach you how to develop a relationship with God, trust God and trust your family. And I know you will learn these things by watching me and Daddy model them to you. So my fears and anxiety about my shortcomings can blow away like the sand on the beach. I know how much I love you and God loves you SO much more than that, and He loves me and your daddy and Evelyn and Ryan just as much. So thank you for reminding me how to be a good mommy. Thank you for accepting my apologies and telling me, “its ok to be sorry because I love you SO much” (stretching your arms and legs wide open so I know just how much you love me).

Like your footprints in the sand you have left a permanent impression
on my heart 

I am already thinking about your next scan, and the next and the next. I feel confident in your healing but that horrible little voice on my sore shoulder says to me, what if? The night sweats when you first fall asleep, the sore tummy, you not wanting to eat and crying in your sleep. These things scream at me, “see? Its possible.” But satan has no place in my home or on my shoulder. I rest in God’s plans for you and for our family. We got your end of treatment road map (a schedule of your appointments, tests and scans for the next five years) and a letter indicating the official end of your treatment. I am sure this is going to sound silly to everybody but your dad, but I feel such sadness. Not because you are done but because I feel alone, I am no longer surrounded by people who are experiencing the same thoughts and feelings that I am. I can no longer stand in the kitchen on Unit 1 and listen to another mother cry her frustrations and reciprocate my insecurities with complete understanding. So I am going to work very hard at letting this part of our life go. Yet I want to remember it all; I want to remember the fear I felt the nights I wasn’t sure you were going to make it, the exhaustion I felt during your stem cell transplant, the terror I felt the first weeks after your diagnosis, the horror of seeing you asleep in your body cast for radiation, the heartbreak I felt upon learning of your cancer regression, the joy I felt at hearing the amazing outcome of your surgeries, and the unabashed love I felt each time I watched you struggle with your chemotherapy. The love of the Lord endured throughout this 15 month fight. The light of God kept our path clear and our hearts full. Letting go……  so tough.

Sunset walk with grammy to look for shells

The words are clear to me today, Christian, I love you and your daddy and your brother and sister so much – my heart is full with the gifts I have been given. Not the physical things I can touch but the gifts that only the heart can feel. My heart beams with pride at your fight, your ability to love. My heart beats wildly for your sister’s passion and curiosity. Her cleverness and honesty, “Christian, come into my room and play dress up with me!” My heart swells with each day of Ryan’s developing personality. He is so cheeky and firm. He will truly be a force to be reckoned with in these coming years. And my heart just knows that he will protect you and Evelyn with a loyal fieriness only brothers and sisters know. Once again I want you to know how proud I am of you. You are a strong, faithful and Godly little man already; I wonder when my heart will finally burst?

So much love,

Mommy

Ready for the flight home

Hello ? Could i be any cuter?

Enjoyed the waterpark more than anyone!

Full Circle

Rocking the waves

On the way to the beach

Only a few words are needed - a picture is truly worth a thousand words. After so many long days, weeks and months. We are here. Praise God for his faithfullness in leading us to this glorious place. 

Pool time

"CHEESE!"

Chillin' on the beach after our night swim

HELD

Lyan Marshal and Christian at the Hockey marathon

Dear Christian

I sit at the computer today amidst stillness and silence in the house. It is weird to find myself alone on this long weekend Monday while you, the kids and your daddy have gone off to see a bee farm. Pretty funny actually when you dad told me that you had been invited to a beef farm – imagine his surprise! Anyways I am super sick and your daddy thought he would give me some reprieve and let me stay home alone and get some rest. I don’t know how much resting I did but it was nice to spend some time alone with my brain. You are doing so amazing, each day your dad and I exchange grateful, happy smiles as we know each others thoughts about your progress. Each day you seem to get bigger, stronger, more confident and hairier! I watched you sleep last night (while I was up blowing my nose, coughing and rubbing my aching head) and couldn’t help but think about what you had been through. You are so calm when you sleep and I worry less and less each night that you are going to wake up sick to your stomach, screaming about bone pain or terrified by nightmares. But part of me is terrified that I will forget this past year.

As I walked today I listened to a song by Natalie Grant called “Held”. Her words spoke deep to my heart today as they did the day of your huge resection surgery.

“This is what it means to be held, how it feels when the sacred is torn from your life and you survive. This is what is it to be loved and to know that the promise was when everything fell, we’d be held”.

Two days after surgery - being HELD

 I do not want to forget how it felt to be so completely out of control. I want to remember how it felt the night when you had to have an emergency surgery to decompress your bowel, I completely gave everything over to God and said, “This is your deal – we completely trust You and Your plan for our lives”. But the problem is that when things are going well we forget to continue to give our lives over to God and ask for help and guidance. I still remember looking into the face Dr. Mahoney – your PICU doctor that day – and she told me how scared she was for you. Her eyes were very serious and it seemed as though she was readying us for a battle of epic proportions. And I remember thinking this isn’t how things are supposed to go. This isn’t really us in the hospital and this isn’t really me in the PICU praying my son doesn’t die. This is something we watch in the movies or on TV. This thought was brought on by a movie I watched today that had a scene with a young boy obviously struggling with cancer. I looked at the picture and thought I can’t believe I have been there. I can’t believe my son got cancer. I can’t believe we made it – we were held.

Enjoying play time with Evelyn and her "Tayto"

Everything we hold dear and sacred as parents can be ‘torn from our life’ in one second. Whether it is losing a child tragically, shortly after birth or from cancer – these are things that are not supposed to happen to kids. But they do – they happened to you. And I feel God saying to me, “I am here – always”. And as Pastor Doug reminded us on the weekend, “The Lord has promised good to me” so we must hold on to his words and promises for a good things. You need to continue to remember your struggle and how we were held during your darkest days. The days we didn’t know if you were going to live through the day or night. The days after chemotherapy when you would be feeling so sick and throwing up. The times you were so scared to get sick because you didn’t want to lose your NG tube. “My tube, my tube!” you would scream to me. So much fear and anxiety. So much sadness and fatigue. The days while we waited for you to engraft after your stem cell transplant and the days we waited for you to return after your intense bout with withdrawal.

But once again we were held. The things that were supposed to be sacred were taken away, your innocence as a small child running up a soccer field changed to a warrior battling a horrible disease. But the lesson I want to make sure I remember as your mommy is that we won. We were held – so I don’t want to be afraid to ask the question, “what if?” Don’t ever let that question stop you from doing something. Don’t every be afraid to ask and then answer that question. Because even the scary answers God is apart of. What if I look silly in class? What if I don’t make the team? What if nobody likes me? These are not sacred things but God is not just responsible for getting us through the horrendous times in our lives – He is there always. And He always is the answer to “What if?” God will get you through whatever is going on and He is always brining us good things. So Christian when life gets really tough make sure to ask God what his plans are for you, what does He want you to learn from the things going on in your life. Because he allowed you to get cancer so that your life and your families life could be awesome, amazing, life changing and forever awe-inspiring to the people who know you and know how hard you fought. You changed people and you change your mom and dad.  

As a mommy I am ashamed to say that I have lived a lot of my emotional life behind a pane of glass. Afraid to smash through and put myself out there for fear of getting hurt. In fear of the question, ”What if?” When your little brother died shortly after birth I didn’t deal with it properly and now I pay the price with my feeble efforts at emotional attachments. God taught me how to let go, and now each day I feel my heart swell and grow as I look at you and Evelyn and Ryan. Now I know the answer to “what if” and although it might take time to work through the answer the end result is always a gift. Because death is not the end of life but the beginning of something great, and Jackie is waiting for all of us – to run to us at heaven’s gate and give us a big hug.

Can't get enough of those beautiful eyes

So once again, as I have done 100 times before in this blog, I just want to say thank you for being you. For being such an amazing, strong little boy, for being resilient, for being sincere and full of heart. Thank you for helping mommy and daddy be better. Thank you for taking on such a huge task so that our family could be whole and complete. You are in the palm of God’s hand and you are safe. I love you.

Love Mommy

Today I am thankful for:

1.Evelyn telling me the other night that we were best friends, “Right?”

2.Hot baths in the afternoon when you are not feeling well

3. Songs that speak to you heart right when you need it

HOCKEY MARATHON

I have been writing this particular blog for 4 days now, as per normal I struggle with expression. I struggle with putting words to the feelings in my heart. Thankfully today, nothing short of jubilation can describe my emotions upon hearing that Christian continues to be in remission. Yesterday we spent the day at the hospital while he went through the gamut of tests, scans and multiple needles. This morning I called our primary nurse and waited on the line with bated breath while she silently read the report. She lets out a long breath and says, “Its all good”. Can I express the anxiety that I have been feeling these past few days? I don’t think so. I try to imagine what I would feel or think if something showed up on his tests. I purposely have been trying to not make plans or have expectations for the near future. Now today I feel so light and rejuvenated with hope for Christian’s immediate future. There have been a few families in our oncology world who have received some bad news and I cannot help but wonder if that could possibly happen to us. I don’t want to let the thoughts creep into my brain but it is impossible to stop them. I watch their faces as they move about and wonder how they deal with the news, how would I deal with the news? All I am going to think about right now is what clothes I am going to pack for my kids when we leave for Florida in two weeks. I am going to dream about our days in the sand and the sun. Praise God. Now for the rest of the blog I have been trying to write this past week…

Christian and Evelyn hang'

I woke up to fresh Tim Horton’s coffee, breakfast sandwich and Christian’s skinny little arms wrapped around my neck. What a way to start Mother’s day. Mothers day….I have been trying to work out in my head what it means to me, what do I want from mothers day? Without my amazing children, mother’s day would be moot. So for my gift this year I just want to wake up each morning with my children, with Christian. I want to feel confident that he is going to be around to bless us each Mother’s day with home made mothers day cards and construction paper flowers.

Today I am volunteering at the Hockey Marathon in support of the Alberta Children’s hospital (Oncology and NICU departments). I have spent the day trying to nurture the wounds of these men who have soldiered on for nine days now. Getting only minimal hours of sleep each day, fighting blisters, sprains, strains, flu, pneumonia, infections and fatigue. Yet each of these men, I think, would do it 100 times over if they thought it would save one more little person from the vile clutches of cancer. With only one day to go they are over half way to their goal of trying to raise 1.5 million dollars to support Cancer treatment and research. So right now Christian and I are sitting in the treatment area where us therapists are working on the players. It is dark and quiet so the players who are not currently on the ice can sleep and rest in peace. The valiant quest is so honorable and my fragile state of mind has me spontaneously breaking into tears when I think about the children, my child, fighting for their lives. These men battle to honor the kids fighting at the Alberta Children’s Hospital and I pray that their hard work will help the staff at the ACH give these kids the best chance of survival. If you want to make a donation to the hockey marathon or just check out some pictures, the link to their website is below.

www.hockeymarathon.com

Going for a ride out to visit Oscar

Getting some tape on my wrist

Stretching out those tight legs!!!

It was such a fun day for Christian as he got a ride out on the ice with one of the boys to visit the players. He helped me to wrap up some of the guys and gently applied tape to their sore spots. I hope he was able to provide them with some inspiration and motivation to keep going. I am so thankful for the opportunities we have been given by the hospital and the people in the community. I wish I had more words to express but I don’t so all I can say is thanks.

Christian's oncologist, Dr. Lewis checking out Christians tummy

Today I am thankful for:

1.Watching Christian sitting in the tub without any dressing

2.Rubbing my cheek on Christians soft fuzzy head

Written on the board at the rink

3.Lyall Marshall and the boys of the hockey marathon (special thank you to Oscar for making Christian feel special)

Long day at the ACH

DEAREST CHRISTIAN

DEAREST CHRISTIAN,

Having a blast on the ferry to Victoria

It has been many days and weeks since I have last written a blog for you. And today I write this blog, watching you sit in daddy’s lap waiting for surgery to remove your central line. It has been such a long time coming – I have thought about this day but didn’t want to hope for it. This way I wouldn’t be disappointed if it didn’t happen when I wanted it to.  Today is 15 months to the day that you received your first dose of chemotherapy. And now we get to say goodbye to this constant part of your life. I know you are so excited to see them go but at the same time they have become part of your body and like everything else that we have become used to, it will be weird to not see them. You told me today, “Good bye noodles….see you when I get cancer again….” I pray this isn’t true and not some sort of weird patient intuition. Just a slip of the toddler tongue.

Last time to see the lines

GONE!!!!

I haven’t written to you for a few reasons, one being that we were on our first family vacation since you finished your stem cell transplant. I decided that a blog hiatus was the best way to completely leave our past year behind while we drove to the west coast. The second reason I haven’t written to you is that is has become increasingly difficult for me to explain how I have been feeling. It doesn’t make sense that our world seems so much more upside down now that you have finished your treatment. I just don’t know how to put the feelings of my heart to paper. I hope I don't seem ungrateful for where we are in your treatment, as there aremany  families that would love to be in our position. You continue to struggle with your emotions, as do your dad and I. We have a hard time saying goodbye to the friendly faces on unit one. The other day you told me how much you missed Marc (music man) and asked me if you would ever see him again. Again I feel such a horrible sense of loss for things that you have come to rely on and trust to bring you comfort. Things that made you feel good in your week are gone like a flash and now it is our job to find new and great things for you to look forward to.  Tears fall from my face while I am typing this and I have no idea why. I have no idea why I feel so sad and lonely.

Ryan loving his bingo prize won by his big brother!!!

Despite mommy’s heartrending thoughts we have so many good moments. I love watching you and Evelyn play together. While we drove for many, many kilometers you guys would play with your stuffies in the back seat – pretending to be somewhere and something you were not. I love watching you become the big brother you are and display such an earnest desire to help your little brother and sister. Helping with shoes and clothes and toys. I love watching you get bigger, bum checks get chubbier, ribs and vertebrae start to disappear. I love to watch your hair get longer each day. You have almost lost your cancer patient look. Soon you will no longer be judged by what you don’t have.  You have become such a kind old soul and you are so thoughtful of other people’s emotions. Every time we left somebody’s home while we were travelling you were very sure to say goodbye and give kisses and hugs.

Rainy day at Bear Mountain

Pool time with mommy

Waffles with Marilyn

Monday night we returned from our holiday on the west coast, only to have to drive straight to the Children’s hospital because you started having fevers on our drive home. We have been there everyday since but I am praying that soon there will be an end to our days here. You had so much fun being away from the hospital and just acting like a kid. Jumping on the hotel beds and swimming in the hot tubs late at night. Even though it rained a lot we walked on the beach and you had a big bubble gum ice cream that you decided the birds could have instead. At low tide on White Rock beach we raced each other out to the waves – of course you beat me! We let the water hit our feet and jumped waves. At ‘aunty’ Marilyn’s you made batch after batch of waffles and French toast. We watched Ryan and Evelyn chase the puppy around. In the states you picked out cool blue suede shoes and a Boston Red Sox hat. You, Evelyn and Ryan couldn’t get enough of the toys at Target and somehow we ended up with a horse in a shiny pink purse and Bobba Fett’s Blaster gun in the car. This was of course after you gobbled down many helpings of the bread sticks at Target. “Uumm excuse me mom, it’s MY favorite store”, you told me yesterday. Then onto Bear Mountain in Victoria where I found the most amazing run that turned in to a full on scrabble to the top of a mountain. Many rounds of golf for you and dad and some serious hot tub time. I believe you and me even swam in the rain. Evelyn was such a little cutie – anytime we drove in the mountains she would look out the window and say, “Mommy can we go and climb that mountain?” Needless to say I think we had such a good time and I loved watching you, drinking in your different expressions and seeing become more confident each day.

Pool noodle lightsaber duels on the patio

Loving breakfast with Aunty Shirley!

As of right now I am, once again, laying beside you in our unit room while you sleep. It was a very tough evening for you as your penis was really sore from your surgery. You can’t seem to keep your hands off your chest where you lines used to be and I wonder what is going through your head. I can’t wait to go home tomorrow and turn on the shower for you, nice and hot, and just let you walk in. Then when you are done I can wrap you in a towel and place you on our bed where you can watch your favorite shows and I won’t have to pull of your central line dressing cover. You are one step closer to feeling like a normal little guy. I love you so much, I am so proud of your fight, your maturity, your honesty and your heart. I am so excited to hit the beach with you in a few weeks time. My heart is huge with the anticipation of sand castles you and Evan will build and the waves we will jump. Just as you proclaimed to me last night when we jumped in our soft comfy bed, “Thank you Jesus!”

No words needed!

Ice cream on the beach

Today I am thankful for:

1.     Dr. Mary Brindle

2.     Quiet times in the hospital room watching TV

3.     Ryan