Friday, January 6, 2012

The Truth

I am writing this post so that I can get it out of my system. I am feeling quite cheery and grateful, so don't let this make you think any different or worry about me, I really am fine, I just want to share my feelings. So here it is...the truth about my life as the mother of a cancer fighting cutie:

I am in a good place as far as accepting what trials have been given to my family. Being thrown into a situation you swear you never would have chosen for yourself forces you to really think about things and learn to accept whatever plan Heavenly Father has for you and your family. I have been so flattered by all of the people saying how happy and optimistic I am. Some days it cracks me up! I guess I somehow manage to sound cheery despite the horror of the reality. I know that my peace of mind comes from my deep belief in eternal families and knowing that we can be together forever, so I'm pleased that many have been able to feel that through my writing, but today I am going to share some of my other inner feelings (fears).

I hate Ewing's Sarcoma. HATE it. It has taken up so much of my sweet daughter's life. It took away her beautiful hair. It has made her grow up too fast. Never should a 5 year old half to know the stuff that she knows. She shouldn't have to be so sick, so medicated, so tortured by the awful poison called chemotherapy to even have a chance at surviving. I hate that she has to come so close to dying, just to be drug back to life again, and then have it repeated every few weeks. When some parents are at home and annoyed with their kids and just wish they would leave them alone, I'm in the hospital pleading that Annabelle will feel well enough to wake up and need me. There have been times where I have even considered pulling her from treatment. One time she was so sick and I wasn't sure she was ever going to get better. For days she hardly woke up and when she did it wasn't pretty. I imagined I'd be pushing harder than ever to beat this awful disease but I actually found myself crying on the phone with Josh and telling him to consider allowing her to stop treatments. I hate to think of having my girl taken from the Earth at such a young age, but I hated even more being there every minute of every day and watching her suffer the way that she was. I just wanted to keep her comfortable and let her go peacefully if that was God's will. Of course she recovered from that and it seemed silly I had ever thought those things. Then a month later I found myself in the same position thinking the same things and scouring the internet researching alternative treatments and studies. It's a vicious cycle.

I understand that everybody's hard is hard. And by that I mean that when your child isn't feeling well, it's still hard. It doesn't become easy just because you know somebody who has a child with cancer. Your financial struggles are still difficult. Your family situations are still tough. Your health problems are still miserable. Everyone's trials are still hard. But I have to say, having a child with cancer is pretty close to the top of the hard list. I don't mean to brag (haha) but it's pretty much the worst. I'm dealing with the worst thing I think a person should ever have to. Falling absolutely in love with a sweet child and then watching them suffer the way that these cancer fighting kiddos have to is beyond heart breaking.

Sometimes when Layla is sad, she'll choose someone else over me. She is growing and changing so much and I only see half of it. It breaks my heart. When I see her I just want to snuggle her and hold her the entire time, but most of the time Annabelle's needs take priority. I don't even live with my own husband. 90% of the time we are over 400 miles apart. He's home in Montana working and I'm living with his family in Utah. The Yates family is SO good to us, but I miss Josh. I miss having my own space and running my own home. And yet at the same time, I don't know how we're going to go back to it. Our tiny 2 bedroom rental house is going to be an even bigger challenge simply because of the massive amount of medical supplies Annabelle requires. So what do you do? We'd love to build a house and stay around Drummond. But.....what if Annabelle's cancer comes back? What if she isn't "cancer free" after she finishes this protocol? We have private insurance and it's only good if we live in Montana. They won't cover us if we move out of state. So if Annabelle needed more treatment here, we couldn't just decide to move our family down. It's not an option. So really, staying in MT is our only option, but how do you do it? I am already very nervous about sending Annabelle to school next year. The only thing that is making it even close to bearable is the fact that Drummond is a super small school, my cousin's wife is the Kindergarten teacher and I know that the school would be very understanding and accommodating of Annabelle's needs. But still, it scares me. So, stay in Drummond it is, which is what we want to do anyway, but it's difficult. It's not like you just search the listings for a 3 bedroom rental and then take your pick! But how do you commit to a larger mortgage payment when you have the fear that Annabelle's cancer could come back at any moment requiring treatment far away from home? I just can't stomach the thought of having to be away from Josh so much again because he would need to be home working so we could make our higher house payment. Of course this is all hypothetical. We hope that Annabelle is cured and her cancer never comes back. But we also know the statistics and have to be prepared for what may happen. So that's my stress over housing. Since Extreme Makeover Home Edition is off the air, anyone else want to build me a house? Just kidding...kind of. :)

I really just want to be back home where I am able to give back to the community that has given so much love and support to my family. I want life to continue on, and for my girls to have experiences like I've had growing up in Drummond. I'd love for them to work on a ranch during the summers like I did, and learn what it's like to work hard and come home filthy with grease in your hair. I want them to be able to spend time in the outdoors and not sitting in traffic. I want them to be able to walk outside and take in a breath of fresh air, not nasty polluted inversion air. I want them to experience being part of a community where everybody knows everybody and you run into your friend and neighbors at the post office or the store with mud or manure on your shoes. I want them to be surrounded by good people of all faiths and walks of life that truly care about each other. I want them to grow up around Drummond. I want to go home.

I make friends with other cancer moms and it is wonderful to have people who truly understand my situation. At the same time it is so heart wrenching to see their kids suffer too, and many ultimately pass away. Some days it is so frustrating dealing with the outside "normal" world because they don't understand how critical it is that Annabelle not be exposed to germs, or what it's like for me to get up multiple times every night to give medicines and feeds, or the extreme emotional toll it takes on a mother to not be able to take away the pain. And other days I almost wish I didn't know all these other cancer families because I feel their pain as well and it's overwhelming.

I hold my child down through scary/painful/harsh procedures and tell her I only do it because I love her. I voluntarily take Annabelle to the hospital for chemo treatments that I know will have harsh side effects and pray that this isn't the round that kills her before it cures her. And you think I'm strong? Another mom put it this way..."I am not strong - I am numb, if you say I am strong, it feels like you don't see me!"

Just a few little bits of my reality to share. Ahhhh, I feel better already.

14 comments:

Crystal and Skyler said...

You just said everything I hold deep in my heart. Thank you for this post. It makes me so sad that you are feeling the same things I have felt because its pure torture, but then again it helps to know I am not alone.

mandy moody said...

Hey Sally,
I am glad to see your post and my heart breaks for you as a momma also. Girlie you are strong...you are not in denial...you are there every day giving encouragement to your baby....your family...you may have been broken down a little bit by life BUT you are still there....being a great mom...that has to count for something....peace is strength...strength comes from hope....hold on to the hope and know that we pray for you...Annabelle...sweet cheeks...and Josh everyday! Hang in there...your strength must be wearing off on Annabelle! She has been fighting for so long because of her amazing support system! Love you all

Anonymous said...

I love the ending statement. That is exactly how I felt 6 years ago. What is strength? Numbness is a good description for now but you will see down the road you are strong because you are doing what needs to be done and being a blessing in the life of your family despite these horrific challenges. You have beautiful insights Sally. You need to write a book! We are still praying for you each and every day. We love you and pray the Lord to bless and keep you...

Laurie said...

Sally,

It is hearbreaking to hear what you and your family are going through. I wish nobody, especially kids, and especially your beautiful little girl, ever had to go through this. We are waiting for the day that you post Annabelle has been cured!! We will rejoice with you!

So much of what you said hits so close to home. I know I haven't went through exactly what you are going through, but I do know what its like to have an extremely sick baby. I know that feeling when people are telling you how strong you are...like you had another option. When we were going through everything with our little Carson I seriously wasn't sure what was keeping my body from just breaking apart and flying out in every direction. It was unbearable. However, as a coping mechanism, I too became numb and I was thankful for that because I was able to hold it together when I had to.

Carson was in the hospital for 6 long weeks. It seemed like an eternity. I can't even imagine how long Annabelle's treatment has been for you. I think you are doing an amazing job.

I really wanted to share with you
something a nurse told me in the NICU...Carson was extremely sick. It seemed it was one major medical issue after another. One day one of the nurses told me that she has seen any one of those issues quickly take the life of a baby, but not Carson. He fought so hard. She said he found his strength in the love and prayers surrounding him. Without that he never would have held on so long and I truely believe that.

So just keep Annabelle surrounded by love, prayers, encouragement, and positivity. I am sure you already do, but just know how much it helped our little Carson. I wish I could give you a big hug...you are an amazing mom!

Sending all our prayers,
Laurie White

Shannon said...

I love you! A whole lot!

j11yates said...

We're going to buy you a big inflatable punching bag and stick the word "cancer" on it and just let you at it! : ) I don't know how you feel, Sally. I've never had had your experiences, and I know sometimes we don't see eye to eye. However,I want you to know that I love you so much. I pray that God will answer all our prayers and let Annabelle go from these painful chains. I don't know what's going to happen and often times I don't know how to contribute or help. I feel like nothing I could ever do would be enough to show you how much I care, but just know that I do care--even if I don't say it. You have your family with you and we will be your strength, even if you don't feel you have any. : ) You know one of the greatest blessings you and I both have are our amazing in-laws. Not only do they provide shelter and love, but they provide spiritual strength and genuine friendship and understanding. We are SO stinkin' blessed to have them.

SuzyYates said...

That comment was me, Suzy, by the way.

Anonymous said...

May all your wishes be granted my brave, strong, beautiful girl! I love you. Love, Auntie Penn

Anonymous said...

All of Drummond is praying for you and Annabelle ..Kick Butt Sally

Judy Davis said...

Hi Sally,
When I bear my testimony, not every month, I ask my ward to pray for you and Annebelle. So people are constantly asking me how Annebelle is and my whole ward is praying for you. I am here if there is anything I can do I would be more than happy to do anything. You are welcome to stop by and let me give you a hug, spend the night, have dinner (I will cook anything you want) just let me know. If you and the kids want to come have a chance of scenery and you have to keep them from germs come have sleep over and we can watch movies and let you veg out. Or if you want to stop on your way back to Tremonton for awhile or dinner that is fine too. I was reading a book called Love Life and See a Good Day. I just read a part I thought that made me think of you. Let what you see be governed by a desire to uncover something better, to recognize the concealed good that is inherent within. To see a good day, change your perspective. Look at things in a different light. Laugh. Uncover the good that maybe concealed. Let your perspective allow you to focus on the Lord. Through Him, understanding will come. My prayers are with you and Annebelle. Love Judy

Amanda and Cody said...

I can't imagine that pain that you are all going through. It makes me cry that you all must go through this. Sally you may think you are numb, but anyone who has seen you since Annabelle has started this journey will tell you, that you are exceptionally strong. Never forget that everyone who knows you is thinking, praying and pulling for you guys. Love you!

Rachael said...

Prayers and Love to you and your cute family! LOVE your new header!

Davey said...

Sally, I've been thinking about this post since I read it last week. I can't get over how so much of life is a paradox, how strange it is that letting ourselves be weak is the only way to ever find real strength. I love the imagery of Christ's words when he tells us that the requirements of heaven is "a broken heart". Not a strong heart, or a brave heart or a competent heart. Thank you for sharing all your experiences and for letting us see a tiny bit of your broken heart.
Much love from Arizona, Rachel

Brooke said...

We've been praying for you and your family. For a lot of peace, a whole lot of comfort, and a ginormous does of health for all of you.