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| 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.
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| 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.
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| 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
I think Evelyn just grew up alot this year and maybe with everything going on, she noticed that other people didn't notice.Now will be her time . When Christian starts school it will be her time to get more attention. Also it has done some good things she play well by herself she is so smart,and not shy. So sad to miss birthday no 3 was there for the first two,Evelyn love you so much and can't wait till you come to Nove Scotia . Christian talking with you this week I was so happy to see how strong you are getting and that you are eating ,have a great trip this week skype me before you leave love you all
ReplyDeleteHi Megan, I find it amazing how you can understand what`s going on - not everything, I know - but you can somehow stand back and see what makes Evelyn tick,what is happening for Christian re. the aftermath of emotions - the same for you and Chris - I`m sure there are thing happening with Ryan too. Seems to me you`ve been given a keen insight. Blessings! Patricia (Antigonish).
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ReplyDeleteHi, my name is Tara. I came across your blog through a mutual facebook group and stayed up all night reading the whole thing! I couldn't stop reading... my daughter was diagnosed with Stage 2 Group 3 Rhabdomyosarcoma in her bladder when she was 17 months old. (We are from Vancouver, so we were treated in BC, not Alberta). She was put on a clinical trial for Intermediate Risk Rhabdo (sounds like it was similar to Christian's initial treatment protocol). We were very lucky and she responded very well to treatment and has been in remission since last August (11 months treatment total, she now just turned 3). We also experienced an incredibly scary emergency surgery when her initially inoperable tumour prolapsed from her body. It was nothing like what Christian had to go through, but still very scary for us and it was a very tough recovery.
ReplyDeleteIt sounds like Christian is just an amazing, courageous little boy with a wonderful family! It sounds like he is very loved, and was such a little trooper through his treatment.
I felt like I had to respond because I think I've felt every single emotion you've described through this blog! You were able to write so beautifully and honestly about the awful emotions that are associated with having your child go through cancer. The first few months after my daughter was in remission I think were the hardest for me as well. It feels like you've been yanked from a comfort zone you never wanted to have in the first place and for me there was a lot of guilt that came with that because I felt like it meant I wasn't grateful enough that she was cancer-free. And, of course, there is the terrible anxiety that things won't stay "normal" for long. (I do agree that there is nothing "normal" about the situation and it surprised me how angry I felt when friends expressed thanks that this whole thing was over... I don't know if it's ever over!) I wanted to say that it does get better... I know people will tell you that and it doesn't mean much when you're in the moment, but as someone who's experienced it, it does get easier. My daughter has her 9 month scan in 2 weeks and I haven't started to panic about it yet!
I will pray for Christian, and you and your family, that you can work through this tough transition period and start to heal. I'll pray for clear scans and a healthy body and spirit for Christian, he seems like SUCH an amazing little boy!
Just close your eyes when you need to and breath Megan. You are only human and we can only fill up with so much stress and to-do lists and chores and children and worries before we overflow a bit. And your daughter is at an age where you think she's got it all together one day and the next day it's like nothing you've taught her has sunk in. They can also suffer from a wee bit of split personality at that age too. My Grace is about to turn 3 in June and reading your blog I was like, "uh huh!!! I know what you mean!!"
ReplyDeleteSo hang in there. You're doing your best. Some days you will feel like super mom and other days you will feel like a huge failure. That's just being a mom. Cherish the good days and learn from the bad.
With much love...Lise Wendt
Megan, Chris, Christian, Evelyn and Ryan,
ReplyDeleteI absolutely LOVE seeing all of the photos! And catching up to how all is going. Thank you! You have all been challenged and coping with so, so much! In moments of pain, exhaustion and frustration you feel as if you are not handling/approaching some of these challenges well -but in the big picture, you have handled so much so beautifully! You, Chris, the kids and God ARE working together to keep the balance. All parents/families can read your words and relate on some level/s to feeling helpless in fixing children's pains/anxieties, at their wit's end with toddlers needs of attention or competing for attention among siblings, and the manifestations of such through their behaviors-and realize, with the help of your writings, the exponential complications that cancer has added to these challenges. Many of us go to bed exhausted, dreaming of how to tackle the next day's challenges, working toward renewed energy for each day. No matter our challenges though, we all have to remember to take each challenge as it comes, take deep, deep breaths, rest as we can, praise when we can, apologize as we need and pray. You are all so giving, doing what you can. You have wonderful supports. Your children -and Chris -will always feel and know how much you love them and are giving your best. You will always seek out what you do not know. As you are ready for your times away with one another, we will all be thinking about you -praying that new surroundings/adventures give new focuses for you all! Give one another as many gentle hugs as you have energy for!
Thinking of you all- hoping and praying that your travels are happy and healing! gentle hugs to you all!
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