While we were driving around the other day I heard Oliver and Eden having the following conversation...
Oliver - "Eden, do you know how to get a boyfriend?"
Eden - "How?"
Oliver - "You have to shave your legs. And then when you get a husband you don't have to shave your legs anymore!"
This was certainly triggered by them witnessing my unusually lengthy leg hair! Spring is coming and with it... new razors!!
Wednesday, March 30, 2011
Out of Town
Oliver went out of town today with my brother to go and visit his great grandparents in Clinton, Iowa. It's hard not having him here. It's strange not having him here. I know it's only been a few hours, but it feels strange not to tuck him in at night and to leave him in someone else's care 2 1/2 hours away. I think he'll have fun. Bry was telling me that he and my grandpa may take Oliver out on the river to go fishing. He will LOVE it. I told him to take some pictures of any big fish he catches!
Saturday, March 26, 2011
Angry...
One of the many emotions I have been dealing with lately is anger.
I am angry at God, because I don't understand why it is Oliver...
I am angry at myself because I feel as if I SHOULD not be angry at God.
I am angry that this is my life right now.
I am angry at people that act like Oliver is already dead.
I am angry at people that act like I've fallen off the face of the planet.
I am angry that I feel like withdrawing from the world because of the hurt that I've felt.
I am angry because of my trials.
I am angry at myself because I should be grateful for my trials.
I am angry that Eden feels like no one cares about her.
I am angry that if Oliver passes, his 1 year old brother may never truly know how much he loved him.
I am angry that this is changing who I am.
I am angry that this is changing who my children are.
I am angry that I have a mental illness on top of this.
I am angry that people don't realize how horrific this is.
I am angry that I can't just shake it off or smile it away.
I am angry when people judge me and think they know what is going on in my life.
I am angry when people say they care and don't call or talk to me in person.
I am angry at this disease that is killing children and no one seems to care.
I am angry that there is no cure for this disease.
I am angry that more children have just passed. Three within 24 hours of one another and I just heard that two more kids passed. These aren't just faces you see on the TV. These families can't just turn the channel. These are our BABIES.
Today I am angry.
I am angry at God, because I don't understand why it is Oliver...
I am angry at myself because I feel as if I SHOULD not be angry at God.
I am angry that this is my life right now.
I am angry at people that act like Oliver is already dead.
I am angry at people that act like I've fallen off the face of the planet.
I am angry that I feel like withdrawing from the world because of the hurt that I've felt.
I am angry because of my trials.
I am angry at myself because I should be grateful for my trials.
I am angry that Eden feels like no one cares about her.
I am angry that if Oliver passes, his 1 year old brother may never truly know how much he loved him.
I am angry that this is changing who I am.
I am angry that this is changing who my children are.
I am angry that I have a mental illness on top of this.
I am angry that people don't realize how horrific this is.
I am angry that I can't just shake it off or smile it away.
I am angry when people judge me and think they know what is going on in my life.
I am angry when people say they care and don't call or talk to me in person.
I am angry at this disease that is killing children and no one seems to care.
I am angry that there is no cure for this disease.
I am angry that more children have just passed. Three within 24 hours of one another and I just heard that two more kids passed. These aren't just faces you see on the TV. These families can't just turn the channel. These are our BABIES.
Today I am angry.
Friday, March 25, 2011
Dark and lonely
This is a dark and lonely place to be. This is not going to be a cheery post. So... if that bothers you. Stop reading.
THIS is my life. This roller coaster of emotions that comes with having a terminally ill child trying to stay upbeat for the sake of my child, my family and for everyone else around me is exhausting. IF... someone asks me how I am I usually answer 'fine' as to not have to burden them with any depressing issues and appease their conscience to ask how I am in passing as if it's a duty, a small duty to ask and then be off the hook. As you can tell this journey is making me more bitter toward people. People can talk the talk, but RARELY do they walk the walk. This is mainly coming from the fact that I have seen more kindness and love in absolute strangers than I have in friends and aquaintances. Now... you think... oh no... that's going to piss someone off, but in actuality, I don't think I could be ignored and forgotten about more than I feel at present. I'm just being honest with what I feel and what I've seen. I am utterly grateful for the kindness of the few friends that I have and the kindness that strangers have shown to Oliver and our family. This post is in regards to the feeling that nags on a daily basis of why I feel so alone.
I admit I have withdrawn from others because you don't want to be a burden in everyone else's happy day. I don't want to suddenly go off on someone that is going on about how rough their day has been when I'm struggling with the fact that my kid is dying. I don't want to be around people that are talking about death and dying not realizing what it is causing me to feel always having that on my mind. Also, I don't want to talk with people that really don't care. I'm not going to confide in someone who wants to look like they are there for me around other people and then are no where in sight when I need them. I'm always wondering what people will think of me and scared that people will think less of me if I honestly share this side of this journey... the dark and lonely side that accompanies what we are going through. I don't want to be the weak one that has lost their positive outlook and hope but it is what it is. I guess the time has come where I just don't care. This is MY journal. People will think what they want to think and judge me based on what they THINK they know. This is for me and hopefully to help others that are going through something similar to know they they aren't alone in feeling lonely and forgotten about. For me, it's even more difficult with the dreaded mental illness to go with it, feeling emotions 100 times stronger than 'normal'. That's another post for another day.
I'm so sick of giving people the benefit of the doubt... "They just don't know what to say", "people don't know how to handle grief". Well... guess what... if my grief is difficult for you... guess how I freakin' feel when you don't even acknowledge my existence anymore!!!!! *insert frustrated scream* I'm to the breaking point. No one wants to talk about it, like it's not happening. If I don't look, maybe it will just go away. Serving others and loving others is drilled into our fibers every Sunday at church. Hmmmm... maybe I'm not the right type of person to deserve that love from my fellow church going crowd. I'm not a squeaky enough wheel? I'm not in a certain cliche? Who knows... I've been struggling with people. I've been struggling with God. I've been struggling... period. I just don't get this life. 'The gospel is perfect... the people aren't". If I hear that quote one more time I might just vomit a little. So... that is the answer for everything. I don't know. I want to believe in 'the plan'. I want to believe in the good of humanity. I REALLY WANT TO. I hate feeling this way. I hate being so lonely and feel like people just don't care. I'm usually a more outgoing person, but this is making me more of a hermit. Not wanting to put myself out there to be hurt, because I am hurting so much right now.
Life changed the day Ollie was diagnosed. I've been grieving ever since. I've been dealing with the thoughts of wanting to get in a car accident and other harmful things because if he dies... I don't want to live. I don't want to live with the pain of not having him hear. It's already almost too much to bear having the knowledge of his diagnosis and if it were to ever come to fruition I honestly don't know how I can live every day. This is my reality. I KNOW that I have a husband and other children to live for. But... that's really about it. I'm not the same person I was before he was diagnosed. I hope that someday I can get some of me back, but I will NEVER, EVER be the same. This year has taught me a lot. It has opened my eyes to how people are. The good and the bad. I honestly feel some days that people act like he's already dead. Out of sight, out of mind?! Who knows... but, that's how I feel. If he does pass I really don't care to see people at his funeral acting like they care when they weren't around during THIS difficult time. It makes me angry and so hurt. I just shake my head. You try to be a good friend when you can and then expect the same in return when life gets hard for you and when things aren't reciprocated... well... it hurts, it makes you angry, it's confusing. This is where I am right now. Not a happy place to be. I am learning to be an island. Well... an island with my husband and little children islands... although sometimes I need more. But... sometimes you can't get what you want no matter how much you want it.
THIS is my life. This roller coaster of emotions that comes with having a terminally ill child trying to stay upbeat for the sake of my child, my family and for everyone else around me is exhausting. IF... someone asks me how I am I usually answer 'fine' as to not have to burden them with any depressing issues and appease their conscience to ask how I am in passing as if it's a duty, a small duty to ask and then be off the hook. As you can tell this journey is making me more bitter toward people. People can talk the talk, but RARELY do they walk the walk. This is mainly coming from the fact that I have seen more kindness and love in absolute strangers than I have in friends and aquaintances. Now... you think... oh no... that's going to piss someone off, but in actuality, I don't think I could be ignored and forgotten about more than I feel at present. I'm just being honest with what I feel and what I've seen. I am utterly grateful for the kindness of the few friends that I have and the kindness that strangers have shown to Oliver and our family. This post is in regards to the feeling that nags on a daily basis of why I feel so alone.
I admit I have withdrawn from others because you don't want to be a burden in everyone else's happy day. I don't want to suddenly go off on someone that is going on about how rough their day has been when I'm struggling with the fact that my kid is dying. I don't want to be around people that are talking about death and dying not realizing what it is causing me to feel always having that on my mind. Also, I don't want to talk with people that really don't care. I'm not going to confide in someone who wants to look like they are there for me around other people and then are no where in sight when I need them. I'm always wondering what people will think of me and scared that people will think less of me if I honestly share this side of this journey... the dark and lonely side that accompanies what we are going through. I don't want to be the weak one that has lost their positive outlook and hope but it is what it is. I guess the time has come where I just don't care. This is MY journal. People will think what they want to think and judge me based on what they THINK they know. This is for me and hopefully to help others that are going through something similar to know they they aren't alone in feeling lonely and forgotten about. For me, it's even more difficult with the dreaded mental illness to go with it, feeling emotions 100 times stronger than 'normal'. That's another post for another day.
I'm so sick of giving people the benefit of the doubt... "They just don't know what to say", "people don't know how to handle grief". Well... guess what... if my grief is difficult for you... guess how I freakin' feel when you don't even acknowledge my existence anymore!!!!! *insert frustrated scream* I'm to the breaking point. No one wants to talk about it, like it's not happening. If I don't look, maybe it will just go away. Serving others and loving others is drilled into our fibers every Sunday at church. Hmmmm... maybe I'm not the right type of person to deserve that love from my fellow church going crowd. I'm not a squeaky enough wheel? I'm not in a certain cliche? Who knows... I've been struggling with people. I've been struggling with God. I've been struggling... period. I just don't get this life. 'The gospel is perfect... the people aren't". If I hear that quote one more time I might just vomit a little. So... that is the answer for everything. I don't know. I want to believe in 'the plan'. I want to believe in the good of humanity. I REALLY WANT TO. I hate feeling this way. I hate being so lonely and feel like people just don't care. I'm usually a more outgoing person, but this is making me more of a hermit. Not wanting to put myself out there to be hurt, because I am hurting so much right now.
Life changed the day Ollie was diagnosed. I've been grieving ever since. I've been dealing with the thoughts of wanting to get in a car accident and other harmful things because if he dies... I don't want to live. I don't want to live with the pain of not having him hear. It's already almost too much to bear having the knowledge of his diagnosis and if it were to ever come to fruition I honestly don't know how I can live every day. This is my reality. I KNOW that I have a husband and other children to live for. But... that's really about it. I'm not the same person I was before he was diagnosed. I hope that someday I can get some of me back, but I will NEVER, EVER be the same. This year has taught me a lot. It has opened my eyes to how people are. The good and the bad. I honestly feel some days that people act like he's already dead. Out of sight, out of mind?! Who knows... but, that's how I feel. If he does pass I really don't care to see people at his funeral acting like they care when they weren't around during THIS difficult time. It makes me angry and so hurt. I just shake my head. You try to be a good friend when you can and then expect the same in return when life gets hard for you and when things aren't reciprocated... well... it hurts, it makes you angry, it's confusing. This is where I am right now. Not a happy place to be. I am learning to be an island. Well... an island with my husband and little children islands... although sometimes I need more. But... sometimes you can't get what you want no matter how much you want it.
Chicago
Thursday, March 10, 2011
We headed to DeKalb, Illinois to spend some time with our good friends, the Gillespies. Before we went I wanted to set up a time to get together with some other DIPG families in the Chicago area. Kody was diagnosed several months ago, Octavio was diagnosed almost a month before Oliver, on Eden's birthday, November 27. Through many emails we set up a time to meet at a pizza place in DeKalb. I was very excited to meet other families going through this, while at the same time saddened at why we were meeting. It was nice to get together and talk with the families to get their perspectives on treatments, life after diagnosis and how their boys are doing. Thank you so much to Kody and Octavio's families for driving to visit with us. We are so grateful for the support that we have with one another and I'm always praying for all the kids and their families. Thank you to my good friends for indulging my need to meet with these wonderful people during our visit. Also, I was thinking of the Fuller family who was mourning the loss of their sweet daughter, Hope, one year ago tonight. They weren't able to meet with us, but they were in my thoughts all weekend.
Friday, March 11, 2011
Today was a chilly day, so we bundled up the kids and headed into the city. We stopped for lunch at Gino's East before heading to Lincoln Park Zoo with the kids.
I loved all the writing on the walls! Jaren being a pill.
Our crazy family
Ed and Jaren. I LOVE that smile!
Saturday, March 12, 2011
This morning we got up and ready for the St. Patrick's Day parade. I was excited to see the river turned green. There were so many people there it was unbelievable and it was COLD! We bought some stocking caps from a vendor and tried to find some mittens but we couldn't find any so we bought a bunch of socks from Macy's. Hey... it did the trick! A mom's always gotta be creative when trying to solve a problem! We stopped by Dunkin' Donuts for a quick breakfast and hot chocolate to warm up a little, walked around for a bit - I loved all of the architecture, and headed toward the parade route. IT WAS PACKED!!! We stood and waited for about an hour when people kept pushing their way in front of us and we couldn't hardly see a thing so we decided to head to Millenium Park and see the bean. I thought the parade was packed... holy cow it was like we walked into a frat party! Not the best place for kids to be so we headed to the outskirts of the park and sat for a while.
Great pic of Ollie
After we had rested up a bit at Millenium Park, we walked to the Marriot and met up with, Nik, a pastry chef that works there. Nik is the uncle of a little girl, Sadie, who passed away from DIPG over a year ago. We had the pleasure of meeting her dad, Zac, when he was here in Iowa on business last year. Through the wonders of facebook we decided to meet up when we were visiting Chicago. He wanted to give us the grand tour of the pastry department at the hotel and when we got there, he had such a spread of sweets, our little friend, Cullan said that he'd been waiting for this his whole life! :O) The kids got to make their own chocolate covered strawberries and we all got to sample cheesecakes, cakes, strawberries, cookies, sundaes and a chocolate creme brule that was divine! Thank you so much for putting in so much effort and taking the time out of your day to make us all feel special! It was great meeting you, Nik!
Eden's sundae creation
Ollie getting ready to hork it down!
Such a fun weekend trip with friends, and meeting other families dealing with DIPG. It's comforting talking with others knowing that we aren't alone, however constantly praying for a cure so we can beat this cancer and not have to watch our children go through the things they do on a daily basis. We continue to count our blessing with Oliver and enjoy every day we have.
We headed to DeKalb, Illinois to spend some time with our good friends, the Gillespies. Before we went I wanted to set up a time to get together with some other DIPG families in the Chicago area. Kody was diagnosed several months ago, Octavio was diagnosed almost a month before Oliver, on Eden's birthday, November 27. Through many emails we set up a time to meet at a pizza place in DeKalb. I was very excited to meet other families going through this, while at the same time saddened at why we were meeting. It was nice to get together and talk with the families to get their perspectives on treatments, life after diagnosis and how their boys are doing. Thank you so much to Kody and Octavio's families for driving to visit with us. We are so grateful for the support that we have with one another and I'm always praying for all the kids and their families. Thank you to my good friends for indulging my need to meet with these wonderful people during our visit. Also, I was thinking of the Fuller family who was mourning the loss of their sweet daughter, Hope, one year ago tonight. They weren't able to meet with us, but they were in my thoughts all weekend.
Barbara (Kody's mom) and I
Barbara's sister, feeding Finny
Papa and Finny
Kael, Jaren, Kayla (Octavio's sister) & Finny
Kody playing cards with his brothers.
Cullan and Ollie
Kody and Ollie playing with some bendable crafts.
Kayla and Ollie
Eden, Kayla and Briea hiding under the buffet table!
Octavio, Cullan and Oliver
Finny and Ayla... "Here... let me poke you in the face!"
Jaren and Kael
Finny sitting with Octavio Sr., Kayla and Octavio
Octavio and his family, plus Finny boy
Kody, Octavio, Oliver
Sweet little Ayla
Eden and Ayla
Friday, March 11, 2011
Today was a chilly day, so we bundled up the kids and headed into the city. We stopped for lunch at Gino's East before heading to Lincoln Park Zoo with the kids.
I loved all the writing on the walls! Jaren being a pill.
Finny laughing at me giving him some sips of my pop.
Finny's got Cullan hooked!
Ed... not that thrilled with the pizza and the cornmeal crust.
Eden and Finn sharing a straw
Ollie wasn't feeling that great and said that the smells of the city were making him nauseas. Cullan and Ollie
Kael, Eden and Jaren
Trump Tower -- "You're fired!!!"
Navy Pier from a distance.
I took this picture not for the reference of a Seinfeld episode, but for the fact that as parents of a child with a brain tumor, shrinkage is always a good thing! This was the first thing I thought of when I read this sign at the bus stop.
Lincoln Park Zoo. Ollie really wanted to go so we went, but it was so cold that most of the animals were in their cages...
...except for me.
I was mimicking the wolf statue in the background. And... no... no one else saw me do this, other than our dear friends who totally get our nutty humor and you wonderful blog readers!!!
I was mimicking the wolf statue in the background. And... no... no one else saw me do this, other than our dear friends who totally get our nutty humor and you wonderful blog readers!!!
Cullan, Kael and Jaren
Oliver is usually not in a wheelchair, however when he walks long distances his legs get tired. He gets worn out very easily now and the weakness in his legs is coming back.
Eden
I loved this structure in the park.
These were some crazy animals we saw!
Our great friends
Our crazy family
The kids watching the leopard.
This was a neat sculpture that had some nursery rhymes engraved in it.
I painted this Yoda patch for Oliver, complete with a glow in the dark light saber
I love this picture that Ollie took of me and Eden.
Eden and Jaren
Ollie giving Cullan and Bear a spin
The Conservatory... with a rope and Colonel Mustard... ;o) It reminded me of Willy Wonka's factory. I think I was just craving some chocolate!
We stayed in the city so we could be within walking distance of the St. Patrick's Day parade the next morning. This was our view from the room. I wish I could have gotten a clearer picture.
Ayla and Ollie
Ed and Jaren. I LOVE that smile!
Eden
Finny and Jaren with Daddy
Jaren and Ollie
Bear
Finny and his highly absorbant diaper...
Saturday, March 12, 2011
This morning we got up and ready for the St. Patrick's Day parade. I was excited to see the river turned green. There were so many people there it was unbelievable and it was COLD! We bought some stocking caps from a vendor and tried to find some mittens but we couldn't find any so we bought a bunch of socks from Macy's. Hey... it did the trick! A mom's always gotta be creative when trying to solve a problem! We stopped by Dunkin' Donuts for a quick breakfast and hot chocolate to warm up a little, walked around for a bit - I loved all of the architecture, and headed toward the parade route. IT WAS PACKED!!! We stood and waited for about an hour when people kept pushing their way in front of us and we couldn't hardly see a thing so we decided to head to Millenium Park and see the bean. I thought the parade was packed... holy cow it was like we walked into a frat party! Not the best place for kids to be so we headed to the outskirts of the park and sat for a while.
Goin' green for the day!
Gillespies gettin' their green on!
Ayla, Eden, Briea, Kael, Jaren, Cullan, Oliver and Finny - on the bottom
Not happy with the Tina Turner tinsel wig!
Jaren manages to rock out in it!
Eden modeling the St. Paddy's Day bow I made for the occasion!
Our first peek at the green river!
Finny taking a nap. I love how he always puts his arms up behind his head!
We saw this on our way to the parade. TOO FUNNY!!!
Great pic of Ollie
Garran found this card on the sidewalk... Niiiiiice... HA!
Ed and me
Meg and me
Garran gave this kid his striped hat as they were rockin' out!
Me and Ollie
Love this one of Ollie
After we had rested up a bit at Millenium Park, we walked to the Marriot and met up with, Nik, a pastry chef that works there. Nik is the uncle of a little girl, Sadie, who passed away from DIPG over a year ago. We had the pleasure of meeting her dad, Zac, when he was here in Iowa on business last year. Through the wonders of facebook we decided to meet up when we were visiting Chicago. He wanted to give us the grand tour of the pastry department at the hotel and when we got there, he had such a spread of sweets, our little friend, Cullan said that he'd been waiting for this his whole life! :O) The kids got to make their own chocolate covered strawberries and we all got to sample cheesecakes, cakes, strawberries, cookies, sundaes and a chocolate creme brule that was divine! Thank you so much for putting in so much effort and taking the time out of your day to make us all feel special! It was great meeting you, Nik!
Eden's sundae creation
Ollie getting ready to hork it down!
Our crazy family with Nik. Jaren looks like Wolverine down front. :O)
On the way out of the city heading back to DeKalb
More fun with the wigs!
How we spent Sunday. Both Ayla and Finny were throwing up and pretty lethargic, having high fevers. Come to find out they both had Influenza A, lung infections and Finn also had an ear infection. Poor little stinks.
Such a fun weekend trip with friends, and meeting other families dealing with DIPG. It's comforting talking with others knowing that we aren't alone, however constantly praying for a cure so we can beat this cancer and not have to watch our children go through the things they do on a daily basis. We continue to count our blessing with Oliver and enjoy every day we have.
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