HAPPY 3rd BIRTHDAY EVELYN!

Evelyn loving her bunny cake!

I find it very difficult to write anything down these days. It is certainly not for a lack of thought. In fact I can’t seem to stop my mind from running. My emotions are constantly getting the better of me, I seem to have lost my ability to control any emotion that my brain or heart feels. Many times a day I lose my temper with Evelyn and often do or say things I regret. I spend the better part of my day feeling so guilty about the way she has been handled lately. She is so vibrant, full of energy and brimming with life. My thoughts are that Chris and I are not the only ones who are struggling to figure out a new way of life with everybody at home. Evelyn is constantly getting into trouble and being ‘naughty’. I look at her in amazement at some of the things she does and wonder what she was thinking. But I am sure my reaction to her behaviors is exactly what she is after. She needs some serious attention and one and one love from Chris and I. Today for her birthday Chris and I took her for lunch (at Costco – her favorite place!) and she behaved like a charm, golden. It was so great to spend some quality time with her and tell her how much we love her and how much she means to us.

Just being a little silly!

This is the second time I have blogged about Evelyn’s birthday. The first time was one year ago when she turned two. I thought she was so big then and her birthday came roaring at us when Christian got sick. The days go by so quickly and I have very vivid memories of her toddling into the oncology ward, barely able to speak but charming the pants off everybody around her. Now here we are 365 days later and she races around us like the wind. Full of life and spirit. We had a fantastic, if not a little frenzied, birthday party with a houseful of people, pizza and fun. It was great to be amongst a group of friends and feel ‘normal’.  Because life feels anything but normal right now.

Hello...could she get any cuter?

We are days away from our west coast adventure and I can’t even seem to get my brain on board. I feel angry and frustrated for most of my days and I don’t have a good answer as to why. Its like somebody reached inside of me and plucked out my cheerful and energetic self and replaced it with a grumpy, tired and frustrated old bear.  Sigh. Christian has really been struggling with his emotions as well – “normal” everybody from the oncology world tells us. A diagnosis of posttraumatic stress disorder seems imminent because of his middle of the night screaming episodes. The other night I thought he was possessed by a demon when he eyes were alight with fear and he kicked and screamed. He grabbed me by my throat with a strength I didn’t know he had and two seconds later is begging me not to leave him. His body and his brain are so beat up they have no ability to process all of the emotions and fears he has been harboring this past year. He incidents seem to be triggered by episodes of pain – mostly in the middle of the night when he isn’t expecting it. Like we are tricking him and he wakes to a nightmare.

As I am typing this in bed beside him he is watching an episode of the Backyardigans and singing away with the dance moves and all. It makes me wonder how the switch is so easily flipped from this courageous and smiley little soul, to the angry one that meets us in the middle of the night. Needless to say these scary episodes have literally tapped Chris and I clear out of energy and fight. This all being said and sounding horrible he is doing so much better. He is getting chubbier by the minute and watching him stuff 4 and 5 cupcakes into his mouth tonight brings some peace into my heart. He limps around less and runs better. His laughs more often and, as always, his old soul makes Chris and I smile on a daily basis. So I pray for peace in our hearts and strength for this upcoming trip.

 Today at Church we listened to a sermon about marriage and it was exactly what Chris and I needed to hear.  Pastor Doug’s words will give us something to extrapolate on while drive and drive and drive. That God is for us even if many forces are against us but if we can stay united as a team and attack our problems together instead of attacking each other, we will be victorious. Christian has his plus 100 day scan in 30 days. And already I am trying not to allow negative thoughts fill my mind. It is done and God has cleared a path for Christian to be triumphant. He has held us for the past year and a half and I know that He will continue to hold us up during these next weeks and months.

Jeremiah 29:11

For I know the plans I have for you," says the LORD. "They are plans for good and not for disaster, to give you a future and a hope.

Today I am thankful for:

1.     Listening to Chris laugh

2.     Listening to Christian sing along with the Backyardigans with his ear phones on

3.     Listening to Evelyn say, “tha-anks” for her birthday gifts

4.     Christian going swimming for the first time in a year

God's Not Dead

Happy Easter!

This transition between cancer and no cancer has been one of the hardest things I have ever done. I often refer to the situation being like watching a horror movie. During the day when scenes are sunny and the lights are up, it doesn’t seem so bad but when dusk settles and the lights dim, my anxiety levels skyrocket and I am scared to put my head down at night. During the day we jump around and play, we laugh and make jokes, I tickle the kids silly and Chris and I shine as we watch Christian running to the park or jumping in to play with his siblings. But at night when he falls asleep a whole new world brews. He starts to moan and cry and often will say to me after a few hours of sleep, “I don’t feel so well”. And I don’t care about much you’ve gone through or how much we trust in God’s plan – when he clutches his tummy and says he feels sick – my brain instantly narrows in on cancer. I have to take a deep breath and talk myself out of this frame of mind; but the thoughts linger on until the sun comes up and he feels better. I don’t know if I can describe the anxiety of post treatment. Of waiting for his first set of scans. Of wondering how the next few months will go. Of trying to find a new normal for our family. Or just trying to learn HOW to be a family again.

EASTER MORNING

I have been informed that 80% of families in post treatment end up in divorce or separation (a studied fact) and now I understand why. When Christian was in the hospital getting chemotherapy or when he was sick, there was a reason for anxiety and stress. But it seems that once you are at home all of that stress and fear should be gone – but its not. In fact I am going to say it’s almost worse. I wish I could put my fears and frustrations into words but there are none to describe how I feel. A constant 'sick to my stomach' feeling that never really dissipates. We have planned a few road trips and vacations in hopes that some time together away will help to mend our spirits. I pray that it brings healing to us all to have a few fun days on the water. I pray that driving through the mountains, walking the beach, driving the golf course, eating at a random McDonalds, watching TV together on a hotel bed and continental breakfasts in the morning might help us to feel like a normal family that hasn’t been ripped apart over the past 16 months. 

Checking out the Easter Bunny haul 

Funny that I am having these deep, heart wrenching moments on Easter Sunday. The day our Lord rose from the dead. There has never been a stronger case for faith than this. That Jesus would pay the ultimate price so that I can talk to God, trust in God’s faithfulness, hold on to His hope, and know His peace in my heart. And I do – everyday. In fact I think this is probably the reason that Chris and I are still together. That despite all the horrible things that are going through our minds and the emotions we are trying to cope with, we can look at one another and gently remind each other – we need to pray about it. Our reminder to each other that this isn’t a burden we need to carry alone; in fact He wants us to ask for help, He wants to carry us. I need to be carried. I need somebody to show us how to be a family again, how to implement rules, how to show unabashed love, how to cope with the small things (a spilled cup of coffee or muddy shoes on the floor). I crave the open road and a late night hotel. I crave the smell of the salt water and the feeling of zero responsibilities (except food and sleep!)

Rolling the head!

Providing Christian can stay healthy we will depart for Vancouver in a little over a week and the time is just ticking away.  At night when he wakes up screaming, either from nightmares or pain I wonder if I even have the strength to leave the house into the great unknown. So I would ask that you would pray for an incident free vacation. The Christian would be freed of his nightmares and pains and the he would rest comfortably without any demons chasing him. He told me the other morning (after a great amount of prodding) that his most recent nightmare involved me shoving something black and brown up his nose (like a tube) and he couldn’t talk or move with it in. He couldn’t ask me to stop or ask for help. And I wonder if this is how he has felt for the past few year. That he has had no choice about what has happened to him. We drive him to the hospital. The nurses attach him to lines and the drugs run in. Somebody shows up in his hospital room to shove a tube down his nose – and he never gets any say. And he always looks at me and says, “mommy, no”. And I don’t stop them. I think this might be a nightmare I will have for a long time. I often wonder, if I am feeling this way, how does he feel? How does a 4 year old express anxiety, anger, frustration, fear? How does he deal with all of these pent up emotions? How do I help him to heal? I don’t know.

Nothing more healing than building a snowman!!!

I thought it was a bit of a stretch when I was reading online about parents and grandparents suffering from post-traumatic stress disorder after cancer treatments. But now I understand. I have a heart attack anytime loud noises erupt. I have anxiety attacks when I think Christian is in pain or getting sick. I can’t sleep and I have zero energy. Thank you Jesus for giving me strength when I have none; hope when I am tapped out and for loving me when I am unlovable. You are the best Teacher, Father, Confidant and you are the source of the peace in our hearts.

let them eat cake!!!

Inspired by my friends Andrew and Sophie....brought to life by Pintrest!!!

Today I am thankful for:

1.     Watching Bubba win the Masters.

2.     Recipes that turn out the way you hope

3.     Listening to Christian sing out the words to “God’s not dead”

Loving all the cousins together!

Long Time Coming

Love those eyes - bald or not he is beautiful

It has been a struggle these past few days. I feel like I should be joyous all the time but to be honest with you it just seems like there will be no end to these trails. This morning I woke up with my back completely seized up again and felt so defeated. Despite the fact that I feel like “kaka” Christian does seem to be getting better each day. Yesterday we were at the park and he hit his face on the slide on the way down and it tore off the tape, which holds his NG tube down. He screamed in agony – not because he was in pain but because he was fearful he was going to have to have another one inserted. We yanked it out praying that he eats enough to sustain himself and hopefully even thrive. I pray that every crumb he eats has a 10 fold calorie factor (and minus 10 for me!) He limps around on his right leg quite a bit, as left leg is extremely tight and sore. Other than these small conundrums, he seems to be getting brighter each day. I type this then sure enough he awakes hours later screaming in pain and I feel like all patience and energy has left my body. I scream back because I have no idea how to help him. “Please tell me how to help you, Christian!” "I don’t know mommy", he says. And we both sit there sobbing because I have no idea what I am supposed to be doing. I am assuming they are growing pains or pains from having tight muscles. But of course the devil on my shoulder is telling me that it is cancer. I try to catch my breath and not throw up because I am positive I have just won the worst mother of the year award – who yells at their sick child because they don’t know what to do? Not a proud moment in my life.

All of our children have grown and blossomed so much since we have been able to spend time together. We sit down at the dinner table and eat as a family (that is when Evelyn hasn’t decided to sit under the table pretending she is the family dog!) Last night at dinner we discovered when counting the peas on his tray that Ryan knows how to count to 10. My mother was counting the peas as he was placing them into his bowl. And to our amazement he started counting along with her. He puckers his little lips and says, “twwwwoooo”. Then he spouted out the word nine and Chris says, did he just say nine?  Ryan thinks its funny and claps for himself.

WHO ME????

Evelyn keeps getting herself into trouble by making a mess or tearing up her books – thankfully she just blames things on her hands or her feet. “Mommy it was just my hands – they didn’t know what they were doing”. The other day she told me her bum wanted to out and sit on the swing. This evening while trying to lay in bed and read her some stories her resident bed giraffe was stomping on my neck and she says, “there mommy – do you feel better? My giraffe stomped off your sore neck and now it is on his paw – and he likes it!” Does it get any better than that? I love her so much.

This morning I worked my way downstairs to the lazyboy to ease my back and try to rest more comfortably. The sun had just come up but Christian knows immediately if his ‘skin’ has left the bed and he shortly follows me down. He comes and tries to sit on my knee but my back so was so sore he just sat beside me. A few minutes later he looks up at me and says, “Mommy don’t you think you should be icing your back?” He is so grown up and it made me realize how close attention he pays to everything going on around him – even when we think he is not listening. Either that or its what happens when your mommy is an athletic therapist – time to take some of my own medicine!

Christian and the Phaneuf boys enjoying some playtime

So this week brings Christian’s monthly dose of antibiotic as well as his surgery to fix his ‘pee issues’. Hopefully he will not be in too much pain and we can move on with planning our road trip to Vancouver, his cousin Grace coming to visit and our long anticipated beach trip to Florida. I have been a crazy woman running around trying to organize and fix things up in the house. I have been trying to de-clutter and get rid of the extra ‘stuff’ in our home. I am of the opinion that the ‘stuff’ is taking up room in our house and in our minds so better to free up the area and breath a little easier. And double bonus – make some extra spending money for our trip! Christian is convinced the States are full of Star Wars men he has never seen before – hopefully Target it not too much of a disappointment for him! Thanks for reading.

Our beach getaway in 8 weeks time

I can't wait to walk along this beach with Chris at night and praise God for all the gifts we have been blessed with

Today I am thankful for:

1.     Airdrie Sway and Buy

2.     Harry Potter

3.     Overcome, by Jeremy Camp

Beach, here comes the Crowells