This is the ongoing story of our five year old son's battle with stage 3 Rhabdomyosarcoma in his abdomen. He recently earned his wings and entered the kingdom of heaven. He is full and surruonded by God's glory. He is our little hero and an amazing example of the adversity that children can overcome. God is our Healer, now that medicine is done, GOD will begin. All the glory belongs to HIM
Monday, April 16, 2012
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.
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