DEFLATED

It's never too late for halloween!

Dear Christian

Well my little man. Friday night and we are doing our usual – daddy has gone to hockey, the other monkeys are asleep and we are cuddling in mommy and daddy’s bed. Actually tonight there is not a lot of cuddling going on since we have all 17 of your hero factory men spread out on our bed. Regardless of how horrible you are feeling you still want to play with your toys and watch Home Alone (again and again and again).

We are doing chemo everyday, you get a small oral dose we can put in your G-Tube and once per week we go to the oncology clinic and you get an IV dose of chemotherapy. Yesterday we forgot to make sure that you got some anti nausea medication before they started your medication. And sure enough, almost as soon as they were done your chemo you did the classic grab your stomach, make kind of sick looking face and say, “Mommy, I don’t feel so well”. And we know from past experience that once you start feeling sick it is almost impossible to get on top of it. We got home from the hospital after a quick play at the play park (one of yours and Evy’s favorite places to go – you chased “cat lady” around the whole play park – putting her in your invisible handcuffs then leading her around like your prisoner!) and you were fast asleep. It sure does take all the wind out of you when you get your chemo. Like your sails have been completely deflated. I just pray mommy and daddy are making the right decisions for you. It has been almost 36 hours and you are still feeling so sick. Yesterday it was the ear-piercing headache and now today your tummy is horribly sick.

Please God tell me we are doing the right thing for you. And if we are not I hope You will grant us enough grace to provide for Christian what he needs to battle through our weaknesses.

Well it is now four hours later and we are still sitting in bed just hanging out. You are flying your piece of pizza around the room, shooting at imaginary villains and making the best machine gun noise I have ever heard. I marvel at your mind and wonder so often what you are thinking about. Sometimes you stare off into space and I wonder what you are imagining. Perhaps you are flying off to destroy some bad guys with your Hero factory guys. Or maybe you are flying off in a Pod racer with Anakin Skywalker. When you are done visiting that place, you look at me with this little goofy grin like I caught you doing something you weren’t going to share with meJ You climb across the bed to give me the biggest hug and tell me how much you love me. Earlier on tonight when you were sleeping I cuddled up behind and wrapped my arms around you. I prayed quietly in your hair, thinking you couldn’t hear me. As I was begging God for strength, peace, answers and healing I began to cry at my weariness and feelings of despair. Immediately you opened your eyes and wrapped both of your skinny arms around my shoulders and patted my back. As if to say, “it’s going to be ok mommy”.

I love to watch your face, you pick the lose skin off your lip and intently watch the pod racers on Star Wars, like you so desperately want to jump into the screen and fly right beside Anakin. Your big brown eyes and long eye lashes lull me into a calm like trance and I feel some peace.

I have to admit that every moment you wince in discomfort, or cry out in pain; every time you grab your stomach or tell me you don’t feel well I immediately have a horrible sense of doom. I can tell my weariness is growing by the day and I feel myself quickly losing control of my emotions. I yelled at Evelyn in the shower today because she was afraid to walk in the water. And then I immediately wondered what kind of person I have become. How much crap and uncertainty can one family take? How long before Evelyn doesn’t want to be my ‘best friend’ anymore. My prayer is that in the morning she won’t remember my harsh tone and will still think I am the greatest thing since slice bread. The thought that I could hurt my child’s feelings on purpose makes me want to puke. But I will cut myself some slack and apologize to her when she wakes.

It is now Monday night. It has taken me four days to write this blog. And in the past 72 hours I have gone through every emotion known to man. From Friday night on you got sicker and sicker. I wondered what was happening to you. I completely lost control of myself seeing you feeling so horrible, I have never felt so hopeless, tired, exhausted and desperate. I was desperate for anything and anybody who could help me. I went to church twice hoping that God would speak to me and tell me what I was supposed to be doing. How can I help Christian? Do we keep on the chemo that is making him so uncomfortable? Do I try something new? After speaking with the Oncologist numerous times we got on a regiment for medicine that seems to be helping him. But I have many many prayer requests…so get a pen a paper….

Christian's silly face

Please pray that Christian will not feel so sick from his daily chemotherapy treatments, please pray his mouth sores heal up, please pray his sensitivity to smells is diminished and he might start to eat again. Please pray he has more energy to play and be a normal five year old boy. Please pray that the chemotherapy is doing what it is supposed to be doing and his cancer is fading away inside of his body. Most of all please pray that the truth of God’s purpose for me and my family in the wretched journey is revealed so that I can continue to see each day with purpose and hope. And finally please pray that we would see an end to this trial in our lives, that the valley would open to a beautiful field of flowers and we can become a new family filled with the love of God and hope for an amazing future with all five of us together. Thanks for reading

Today I am thankful for:

1.     Putting up Christmas trees with my kids and my mom

2.     My husbands beautiful Christmas lights on our house

3.     People who are willing to pray for Christian and strength for Chris and I

4.     Watching Christian dance along at Zumba tonightJ