Monday, October 13, 2008

And the rain came down

Starting Saturday night the rain came down. It pored, most of the night, and then all day Sunday. I was soaked at church Sunday morning, but we needed that rain so I can't complain. Ackerman's got over 2", just under 2" at Smith Ground, and here at the house we had an inch and 8/10, and it was about the same on the fields out on the 7 Mile Road. Luke said it's just what the wheat needed and it should take off now.

Marie is doing pretty well. It's like stuff just gets caught up in the back of her throat and she can't quite bring it up. Hospice came and checked her lungs Saturday and they were clear (thank you Jesus!). Our nurse actually thought the cough sounded a little croupy, I've never encountered that before, so she suggested getting the bathroom steaming and sitting with Marie in there. It helped so much! After we did it Saturday night she didn't cough again until mid morning Sunday, and we've been doing it every night since. Hopefully this passes, and it's not a new normal to adjust to. I really hate it when it happens when she's eating. It's like she needs to clear her throat but can't, and in the attempt it's scary that she could choke on and inhale her food in her mouth. She's choked really badly a few times, tonight after dinner I pulled her out of the high chair and thumped her back to try and help. Still, she's a fighter and a happy girl. Really, as long as she's happy what more could I ask for. She had vanilla pudding tonight and it made her day. I hope that we can continue things like that.

Josie and I had a tough talk today. I often worry about her, she just doesn't talk about anything that goes on much. Occasionally I'll get "Bunny says he's sick" or "my Bunny is sick like Marie" but that's about it. Tonight though, she opened up to me and it broke my heart.

She had a picture in her hands of Marie in her walker, taken over a year ago now. Her eyes are bright, she's holding a teething toy in her hand trying to get it in her mouth, and smiling at the camera. She is standing, she is holding, she was so much stronger then.

Josie looked at me and said "I miss when Marie could hold things in her hands, I want her back that way". I gave my standard answer, that Marie is the way God made her. She is beautiful, and perfect in her way, and our gift. Josie then said, "I will pray for her every night when she is in Heaven, I will miss her so much". I HATE that that is my little girls reality. This is something I struggle to wrap my mind around, and to have the responsibility to guide her through it, to try to comfort her... sometimes it's just too much.

Our conversation went on, but the part that stuck with me most was when Josie said "I don't like the choking, the slumping, the seizures, I don't like that stuff happening to Marie". "Bunny told me her medicine won't make her better, I don't like that she has to take medicine". I told Josie it was to keep Marie comfortable, that when her body doesn't work right it helps her to relax. Josie is such a good big sister, she just doesn't want to see Marie suffer. It's Luke and I'd biggest fear too. Josie then asked "The sickness in Marie's body, can we get that in our body too?". My heart breaks watching her struggle to understand, Marie's disease is so complex that I struggle to recall bio chem that I took in college so that I can understand.

Lord, I am so lost sometimes. There are times I don't know why you picked me for this job. I am struggling to understand, and I am trying to guide a child, and comfort one who is sick, and try to create a happy environment. I know I am never alone in this, but sometimes.... sometimes it just sucks that this is our reality. That my daughter is learning about death not because our dog died, but because her sister is so, so sick. My heart breaks, that Josie must go through this. That Paige is a big sister with a little brother in Heaven, that my sweet little cousin never got to rest in my arms. Sometimes I am very, very angry about it all.

October 16 is the day that we learned something was wrong with Marie's body. She had that tremor, we went for an EEG in Denver, it was normal. The neurologist was worried about her eyes twitching and ordered an x-ray. She came back after we sat in a tiny grey room forever waiting, starving because it was now 2pm and we had been in that office since 8am. She came in and said that we were to go to the main Children's Hospital in Aurora. She didn't tell us what was wrong, just that Marie had a serious problem and they would be waiting for us at emergency.

Do you know what we did next? We went to Taco Bell. After we left the clinic Luke and I were so shell shocked we had to regroup. We ate, although it tasted like cardboard, and we drove south. Sure enough, they were waiting. A full ER and they ushered us straight back like we had VIP reservations. At that moment I was terrified, the fact that whatever was going on with Marie was serious enough that we jumped the queue in the waiting room and went straight back was a completely frightening thing for me.

There we sat a few more hours, I begged to nurse her. She was starving, but everyone had told us not to feed her because they may be running tests. It was 6pm, I ignored them and nursed her anyway. She got an IV, we were so terrified and lost, and then the Oncologists came. They were 99.9 percent sure she had Neuroblastoma, a form of cancer. The prognosis was good if detected under one year of age, they had a very clear cut plan. The checked us in to the hospital.

The next evening we learned that's not what Marie had at all, and the day after that we learned what she did have was much worse, there was no chance of survival. My baby was 6 months old and they told us we'd be lucky if she lived to be 5.

Sometimes, its all to much. As October 16 approaches I'm trying not to think about it. That day I'll be busy. We have to see the accountant, I am snack mom at preschool. It will be just another day.

The truth is this, it is not just another day. It is the day some dreams died, they were replaced by new ones, and an appreciation for small things, seeing beauty where many probably don't. Optimism in the face of tragedy. That is the day that my life as I knew it was over, it was replaced by a newer one where the paths are not clearly marked. It was the day I stopped being so naive.

It's been a year... and as much as I hate it I cannot stop thinking of where I was a year ago. I'm terrified of where I could be a year from now.

Lord, please give me strength.

post signature

From "The Rain Came Down" by Steve Earl

And the rain came down
Like an angel come down from above
And the rain came down
It'll wash you away and there ain't never enough


RC said...

Oh Shan...I am so sorry for all of the pain. It is not fair. I know that we all will all, and have, learned so much from Marie. I just pray for peace and comfort for her, and for you, Luke, Josie, and everyone else's lives that she has and will continue to touch.

I <3 Marie. I hope that she can feel that.

The VW's said...

My heart breaks for you! For all that you are struggling with and having to be responsible for! And, that your daughter is struggling with understanding it all! I often worry about my older children's worries as well, it's very difficult to understand it all ourself, as adults!

WHY?! This is a good question, but only God can answer that question. I do know that He has a perfect purpose and plan in Marie's life and yours too!

Please know that I'll be praying for you and thinking of you often! Hang in there! You are doing a WONDERFUL job!

Michaelene said...

You are not alone as you take this journey. Josie will be given understanding that far surpasses anything, we as adults, have ever known. Your babies are so close to God that one of them still gets to see Him, the other one can hear Him. And you, their amazing God fearing and loving Mama, have already assured yourself a place in the Kingdom. My Prayers are surrounding you as you face this week, I didn't realize it was the one year mark. But guess what! It's one year that you still have HER! And you are doing an incredible job of savouring each moment with her and Josie, together.
I'm grateful for the rain and the weather we have had, also. It is cleansing and renewing ... I've always considered rain and snow gifts from God to remind us to stop and give Praise. I'm glad the wheat will flourish from the rains - maybe the $$$ will come down now?! :o)
blah, blah, blah (dang, I should write a book)- my love to you laced with precious prayers!

2awesomekidz said...

Oh I so feel you and like you said on my blog, you are not alone! God gave us this journey to walk together. The same very rare Diagnosis within 1 week of each other, at the very same Hospital, we both have older daughters within 4 months of age. We live 2 and half hours away from each other, we are both faithful mommas with strength that will not be broken! Coincidence, I think not!
Thank you for being here for me!!
Josie and Paige are gonna be the best big sisters and grow up to be the kindest, strongest young women ever!! They will always have special angels looking over them!!
Love you guys!!

Susie said...

Dang you! I cried through that whole thing. Jared's questions about Daddy have broken my heart many times. I hate that such little people have to learn such hard lessons so young. They're lessons we're trying to learn, too, at our age! It's not fair that they can't stay innocent longer.
On Sunday, we had a lesson about the trials that come into our lives. And the thing that gives me so much comfort is to know that the Lord will not give us a challenge that is too hard for us, with His help.

ANewKindOfPerfect said...

Oh Shan, I am so sorry to read this. I can relate in so many ways, but not completely. My Peanut is not considered terminal, she is considered chronic. Words are just that - words. I hate that Josie has these fears and sadnesses, just like I hate that my Monkey has them about Peanut.

It's hard to be brave and explain things to them, when you can't even explain it to your self.

Oct. 16th is my Peanut's birthday, she'll be 5. I will definately be thinking of you and Marie that day. (((hugs)))

BTW, in response to your comment on my blog, my Peanut has had a fundoplication done twice. She now refluxes and throws up right past the second one. :(

Holly said...

Shan I am so sorry I will be praying so hard for you tomorrow!! Marie is beautiful and she has changed lives, I know Marie and Landon's story has changed my life and brought awarenss to a disease I knew nothing about!!
I feel for Josie, it is heartbreaking what these sweet sibiling have to go through. Adults have a heart enough time wrapping their minds around it but these sweet children... it breaks my heart. ;)