Fallen

Christmas 2010 (three weeks before diagnosis)

Sitting here at my computer tonight, I am trying to find the words to express the events of this past week. I guess a few words that come to mind are frustrated, exhausted, sad and scared. And every single one of these emotions Christian is feeling to the utmost degree. I feel as though as a family we are just hanging on by a thread. All five of us holding onto each other, dangling over some theoretical ledge, just waiting to fall into the depths below. I can picture us and I see the scared look in our eyes – my kids looking to me for support and assurance and I don’t know if I have it in me to give anymore. Each day Chris and I get a little more frustrated and a little less focused. The only peace left is knowing that if that string does snap and we fall, we will land gently into the hands of our Father who has promised to snatch us up when we plunge.  Perhaps we have already fallen and this is what if feels like to be held up by those we love and who love us in return. So many people came to our rescue today. Dianne, my sister in law, showed up with coffee AND Christian’s favorite play friend – Isabelle. What a combo! Followed up with Louise, Tracey and the whole gang who showed up at our door this evening bearing food and tools to help finish my mom’s suite. An AE Bowers family bringing us a card and message of hope. My brother Peder who went to the hospital so Chris could run around and find food that Christian might eat. I think Peder is Christian’s second favorite play friend because, “Uncle Peder makes good star wars noises”. He said to Chris tonight after my brother had left, “Do you think uncle peder could come back again, when I am not so tired?” My heart is aching. Aching for this little guy who is at the end of his rope. Chris and I are so frustrated with all that is going on with Christian – I can only imagine how a 4 year old deals with the same feelings and insecurities.

We were discharged from the hospital over the weekend after our six day chemo stretch and the roller coaster began. Christian battled the NG tube like a ferocious beast. He is so stubborn and refused to swallow with the tube in his throat. Which means he carried around a tub and spit into it whenever his mouth got full of saliva. And when he gagged on his spit he would throw up and out came the tube and life was good again, for him. Unfortunately that tube is essential to him right now. It is the only way he can get enough nutrition into his body. But we can’t seem to get him to keep the NG tube down long enough to give him any feeds. We are on our 5^th tube and each insert is traumatic and terrifying for Christian. Today our oncologist told us that Christian is literally starving. Wow. It sounds easy enough to fix. Eat some food. Except Christian is plagued by constant stomach pain that we cannot seem to get a hold of. Tonight while in hospital he got some morphine and he seemed much more comfortable, so perhaps this is what he needs. I don’t know what Christian’s immediate future looks like but we pray that his tummy is pain free, he gains some good weight, his feet stop hurting, he gets better balance and strength and most of all I want to see confidence and assurance in his eyes. I want him to be hopeful and not so disheartened. I want him to know that things are going to get better and he is not going to be sick all the time. There will be a time when he won’t have pain and he will be able to eat the foods he wants. I just want him to be able to be a four year old boy. To be excited about Santa Clause and decorating a Christmas tree.

Christian, Grammy and Ryan Christmas 2010

Christmas really is very different this year. The things that I used to be so excited about are not so exciting anymore. Whether I have lights on my house or a real tree in my living room, don’t seem to matter when we are not all together as a family. I hate being separated. I don’t like going to bed at night and not having somebody on the pillow beside me. To be honest I am glad when Evan comes running out of her room because she is scared. Because this means I have somebody to keep me company. And I don’t spend so much time thinking about how much I miss sharing my bed with Chris and Christian. How much I miss feeling his skinny little leg cross over mine. I miss when he will randomly grabs my neck and give me a squeeze. Making sure mom is ok. But for now he will live at the hospital until he can get his nutrition and hydration stabilized. He needs to be able to gain some weight and get stronger. Hopefully by next week we will be safe to bring him home and spend a few nice days together with Papa Norm who arrives tomorrow. It will be so nice to have some extra help around the house.

So for now the trials continue and each day is a new venture and brings hope of healing and health for Christian. Pray for healing, weight gain, a pain free body, confidence to keep fighting and peace in our hearts. Thanks for reading.

Uncle Peder making us Christmas Eve pizza's!

Today I am thankful for:

1.     Laughter with friends at 10pm at night

2.     Watching Christmas movies with Evy at midnight

3.     Louise’ amazing chocolate chip cookies!!!!