Thursday, December 15, 2011


Ollie's breathing has been quite labored over the past several days, which has been worrying me. The steroids he is taking are horrible for what they are doing to his body. He's ravenously hungry all the time and has gained a horrible amount of weight in such a short time. Poor kid. He still has sleeping issues, but hasn't been sleeping as much through the day as he was a few weeks ago. He's been saying a few things that just take my breath away. He told Ed and I yesterday... "I'm going to die soon aren't I?" How do you even begin to respond to that. Does HE know? Is the Spirit preparing him for it??

Last week my friend was over helping with dinner and getting Eden's birthday party off to a start and Ollie was sitting on the couch and just started crying. He said that he didn't know why he was crying and then said, "Cancer is strong." I told him that he's been so strong in battling it. He has so much on his mind and he doesn't speak much about it. He just keeps most of it in until he can't handle it and then breaks down in tears. He's been not wanting to spend the night anywhere lately either. I think it's because he's afraid to die anywhere else but home.

This whole situation makes me feel ill... absolutely ill. It has been two years of constant wonder... when is it going to happen? How is it ultimately going to take him? I know it sounds sick and hopeless to say that, but it is a sick and hopeless situation. We were given a death sentence when we heard the words 'Diffuse Intrinsic Pontine Glioma'. Do the research and you will realize that kids generally pass away within 9 - 12 months. We have had no hope. The only hope I've been holding onto is the hope that one day I will see him again. Even that faith has been shaken throughout this journey.

We've been trying to focus on daily things to do during the holidays and have had fun painting ornaments and decorating the Christmas tree, but I'm just not in the Christmas spirit this as much year. Now I understand why so many people dislike the holidays when a loved one is ill or has passed away. The holidays are supposed to be full of joy and gladness, but I'm just feeling like I'm holding on by a thread. While most people are fussing over getting their Christmas shopping done or Christmas cards sent out, I'm racking my brain with trying to figure out what more we can do for Oliver. I just feel like there is nothing more we can do. I've seen this journey played out in so many other children... too many other children.

I just feel lost... masking my pain with busywork around the house, trying to stay strong in front of the kids and everyone else. Pain and grief really do make a person a great actor. There is so much more that goes on behind the smile that I try and have plastered on my face. I can't hardly handle this pain that I am in and I don't think anyone else that I talk to can even comprehend it. I just feel like most people don't understand. They just can't understand. Life has brought on so many emotions which is utterly overwhelming, especially now. The other day I just sobbed until I was hoarse and my eyelids were swollen. Probably the worst cry that I'd had since he was diagnosed nearly two years ago. The reality of what is happening just hits you at the strangest times and spirals out of control. I just laid in my bed and screamed into my pillow. I thought my head was going to explode. Sometimes I feel like I just can't hold on any longer.

Everyone says that we are lucky we've had two years with him and although I agree that we have truly been blessed with that, it's been a nightmare living each day wondering when the tumor would start to grow again, because it always does. Will he live until his birthday? Will he live until Christmas? Do you have any idea what that is like?! That is the way that the DIPG story plays out. Everyone has their opinion or their advice to give, which I try and listen to, again with a smile on my face always trying to give everyone the benefit of the doubt because they just don't get it, when sometimes I just want to start screaming and say, "You have NO CLUE what the last two years have been like!!!" EVERY SINGLE PERSON'S JOURNEY IS DIFFERENT. I also have a mental illness that rears its ugly head on a daily basis and another child that won't eat and may need a feeding tube. Some days I just want to stay in bed all day long. "You've got to be strong for your kids." Yes... yes... I know that and when I break down sobbing??? Does that mean I'm a failure because I just couldn't keep it together in that moment? I just can't hold it all together all the time. I can't do everything that everyone else thinks that I should be doing. I can only do what I can do. I can only run as fast as I have strength and right now... I feel like I'm crawling. I haven't given up... I'm still here and haven't taken any drastic measures. I have just felt lost for two years. Up and down, up and down. My world is just spinning out of control and I just feel like I can never measure up.

TIRED * OVERWHELMED * SAD * WORRIED * SCARED * RUSHED * I just feel like life is in fast forward and we are just scrambling to get through the day and make memories. Rush, rush, rush. I want to slow down and just enjoy the time we have left with Ollie.


Anonymous said...

God Bless you Ollie and your family. I am reading your posts crying and wishing there was something I could do for you. Stacy - you are not a failure, you are a mom, a loving caring mom. I am reaching out over cyberspace and giving you big hugs. May God give you peace.

Anonymous said...

I cannot even imagine, Stacy. But you're so right, no one can know exactly how you feel. Pain cannot be measured, nor should it be. Just know that there are people here to listen and empathize with you and your family and to support you however we can. I pray you find some peaceful moments over the coming days. My heart breaks for you.

In my thoughts,

Debra Morrison
Edmonton, AB

Anonymous said...

Stacy, I know you asked for readers to let Oliver know how he has touched their lives. His bravery and generosity are the first things that come to my mind. But, honestly, as a mom, I am inspired by you, Stacy. The efforts you make to create joy with your family in the middle of this unbelievably stressful time are simply amazing. Your feelings are completely understandable, normal and you articulate them in a refreshingly honest way. You are a super mom not because you are perfect but because you are you. All of your children are lucky to have you. God bless. I wish for you and your family peace. Emily Hayes from Missouri

Just Me said...

I am so sorry for what your family is going through. My son's class just lost a classmate over the summer between first and second grade to DIPG. I miss him so much. His parents have such strong faith and their faith has helped those around them to become stronger as well. My son and I talk a lot about Caleb and how exciting it will be for him to celebrate his first Christmas in heaven with Jesus. You do whatever you can do right now. Don't worry about anyone else's expectations. If you want to keep the kids home from school, just do it. If you want some time with just Oliver, do it. Don't feel guilty about anything. Just love your baby boy with all your heart every minute you have him here on earth with you. And you will be together again someday. Hold on to that. Much love and prayers to you and your family. I just found this blog last week and Oliver has been in our prayers every night since. <3


smiliesar said...

My heart continues to ache for you. I wish there was a bandaide to fix it all. I think it's okay to break down every once in awhile around the kids. It lets them know they too can break down and not hold it all in. I pray the Lord will guide your family through this time.

Denise said...


I've been following Oliver's story only for a few weeks now but it has touched my heart forever. He is such a brave little guy and it breaks my heart reading about his fear and condition. Every night I pray for him to have a wonderful Christmas with you and hope he enjoys this short time he has left. I also pray for you, I have no idea how hard this must be for his family so I pray for you to be strong and make some more precious memories.

I am sorry if I don't find the right words to express my feelings properly. I'm from Germany and sometimes I don't know the right words. But I wanted to let you know there are people out there who are inspired by the way you handle all this. You're not a failure. You're actually the best parent a kid could wish for. You give him so much love and show him so many things.

I wish I could come around and help you with meals or whatever but it's way too far. So instead I will see if there someone around here who might need my help. I wish there was more I could do.


Marissa O said...

I wanted to reach out to you to let you and Ollie know how much he has touched my heart, as well as many others I work with. Yesterday I went into Hy-vee and saw a photo of Ollie and my heart broke. I work at Election Systems & Software and soon Ollie will be getting a package full of Christmas cards from all of us here at ES&S, letting him know he has touched each and every one of our hearts.
Our thoughts and prayers go out to you all.

Shirley said...

I am praying for your family. I have no idea what you are feeling right now. I just can not imagine. All I know is that it sounds exhausting. I have to agree with the post above, you have been inspiring me also. Your family has been in my thoughts and prayers. Mys on goes to Lou Henry, ever since we did that penny drive for Oliver, you guys have been in my thoughts. I want to thank you for this blog. I know if must be hard to keep up with it, but I really appreciate you sharing the Palmer family journey with us :)

Carrie Ann said...

I pray for you guys daily and that Oliver will know he will see you again and that he won't be scared. I can't imagine having to go through all he has at his age. Please please don't ever think you are a failure. You have done so much through this whole journey. I think if it was me I would have had a nervous breakdown and been in a hospital somewhere. You have every right now cry, and to scream and to just break down at times completely. I don't think you would be human if you didn't. I wish I was able to help so much. I know I will never ever fully understand what you are going through. But if you ever need anything don't hesistate.

Krista said...

you are absolutely right. Everyones journey and battle is different. But I want you to know that you are the only one who sees you as a failure! There are always going to ups and and in the future. Your struggles won't end once Ollie has gone home...BUT!!!! you are a success at have a unique bond and perpestive into your childrens lives. And although there are so many people out there that love you and Ollie and your is you that loves him most and he knows that...unconditional love....only one other love can compare..and that is our Savior who made it possible for you to be with your son again.
I love you stac!

Anonymous said...

I have been following your blog for a while. I check in periodically to see how things are going, because your family has become important to me. Your words give such a sense of the experience you are in: you have touched so many with your honesty and let Ollie's personality shine through, too. I have a 6 year old daughter, so as a mother, I try to empathize with your pain. These words seem hardly enough to express the depth of heartfelt empathy I have for you and your family! You are doing your absolute best in an incredibly difficult time. My heart goes out to you.

Amy Halterman said...

Hey Stacy,
No, no one has a clue what the journey has been like for Ollie, for you and for your family. All we can do right now is tell you how much your family is loved and that we are all continuously praying for you, and for your strength to continue through each day. No matter what you think, you are doing a great job, in incredibly difficult circumstances. I don't know anyone who could've done it better. Take care, be blessed.
Amy Halterman

Anonymous said...

You are not forgotten Kiddo....Much Love.