Ethan's mp3 player is broken. It plays only if you hold it a certain way. Something is rattling around inside it which wasn't before. Now, I know that nowadays we go through electronics like water. It shouldn't be a big deal that his little Sansa Clip that cost me all of $40 3 years ago should be upsetting me. I will go and buy another Sansa Clip just because it's small and great for what I need. BUT it's not just the mp3 player...it's memories of him listening to it and sharing the earphones with anyone that would listen! Those memories are not leaving me either of course. So why sadness? I'm not down in the dumps depressed but I'm just upset that somehow I broke this piece of him and now I have to replace it with something he never had. Strange how the mind works. It's just a stupid mp3 player....
Somewhere in the bible it tells us that wherever our heart is, that is where our treasure will be. So I will be placing my heart in heaven with Christ and Ethan and not in some tiny mp3 player. My treasure is waiting for me to arrive and I can hardly wait for the day!
Thursday, September 23, 2010
Monday, September 20, 2010
Bridge Run
The Bridge Run started out as a mistake. It was June 2008. I had run a couple of 5k races and wanted to challenge myself a little more. I thought it was time to run a 10k. I looked around on the internet for races and found the Bridge Run in Grand Rapids in mid September. I signed up. When I received my confirmation email, it read something like this: Jennifer, Thank you for signing up for our 10 MILE race.... Did that say MILE? NO, I wanted 10k - you know 6 miles? It was too late. No refunds on race registration. I decided to train for a 10 mile run because I paid the money and I wasn't going to let it go to waste. So the training began. This was also the summer that we were told Ethan had 6 months to live. We were told in June. I don't remember if it was before or after I signed up for the race. I just knew that running would keep me sane and able to deal with helping Ethan deal with the fact that he was going to die. I trained hard for the race. I know Ethan was scared to die. I knew I couldn't stop it. I knew the only thing I could do was run. I ran for him. He was always amazed when I showed him how far I had run. I asked him if I could use his mp3 player to listen to while I ran. He, of course, agreed...so happy to help his mom finish what seemed to be an unattainable goal.
He went off to Camp Catch a Rainbow for a week and then to Camp Mak-a-Dream for a week. I trained. I prayed a lot when I ran for God to take away Ethan's fears, to let Ethan know that God was with him the whole way.
The first time I ran 9 1/2 miles was at Camp Bil-O-Wood. We went up to pick up the Jared and Erik from what would be Ethan's last time at camp. So many campers came up and talked to him, hugged him, told him they missed him. I ran from our motel out to camp and back. When we drove it, Ethan couldn't believe I ran that far. I told him I didn't think I could do it either but it felt great when I was done. That was the end of August.
The day of his celebration of life party - I ran 10 miles. I remember running the last 1/2 mile crying and saying "this is for you Ethan, it's all I can do for you." I knew the end was near for Ethan. Ethan knew it too. He said so many personal goodbyes that day...sometimes with just with a wink or a look.
Ethan died 2 days later. I ran the bridge run 12 days later...with Ethan's mp3 player, with Ethan's spirit.
I think life is training for a race. Some days its hard. Some days its easy. Then there's the day when you cross the finish line and the feeling is like no other. You can't believe you did it. I like to think that's how Ethan felt when he crossed the finish line into heaven. He did it! He trusted that God would be with him and all the promises made were completed and what total and utter joy he is living!
I just ran my 3rd bridge run. It was hard...I haven't really trained and it was hard. But I did it and I prayed a lot during the run. God never left me and even when I thought I couldn't go anymore, He was there telling me it was okay.
He went off to Camp Catch a Rainbow for a week and then to Camp Mak-a-Dream for a week. I trained. I prayed a lot when I ran for God to take away Ethan's fears, to let Ethan know that God was with him the whole way.
The first time I ran 9 1/2 miles was at Camp Bil-O-Wood. We went up to pick up the Jared and Erik from what would be Ethan's last time at camp. So many campers came up and talked to him, hugged him, told him they missed him. I ran from our motel out to camp and back. When we drove it, Ethan couldn't believe I ran that far. I told him I didn't think I could do it either but it felt great when I was done. That was the end of August.
The day of his celebration of life party - I ran 10 miles. I remember running the last 1/2 mile crying and saying "this is for you Ethan, it's all I can do for you." I knew the end was near for Ethan. Ethan knew it too. He said so many personal goodbyes that day...sometimes with just with a wink or a look.
Ethan died 2 days later. I ran the bridge run 12 days later...with Ethan's mp3 player, with Ethan's spirit.
I think life is training for a race. Some days its hard. Some days its easy. Then there's the day when you cross the finish line and the feeling is like no other. You can't believe you did it. I like to think that's how Ethan felt when he crossed the finish line into heaven. He did it! He trusted that God would be with him and all the promises made were completed and what total and utter joy he is living!
I just ran my 3rd bridge run. It was hard...I haven't really trained and it was hard. But I did it and I prayed a lot during the run. God never left me and even when I thought I couldn't go anymore, He was there telling me it was okay.
Friday, September 3, 2010
September
Had someone told me that there would be a day in my life when I would cherish one month more than all the other months...I would have thought December - love Christmas...used to not allow myself to eat peppermint until December 1 so I could savor the taste of Christmas! Or maybe they were talking about August - my birthday month - the month when we are so happy to be a year older, people tell us how much they love us, we're showered with gifts...
No, the month is September. September is the month I love because my son died in September. I love to re live every day of his last days.
His 7th grade open house - he was so proud to be there, making sure I was introduced to all his teachers, saying hello to all his friends he hadn't seen all summer. His first day of school - up and ready to go at dawn - couldn't wait to get the year started...even though he knew he wouldn't make it the whole year. We all knew he wouldn't make it...but we didn't know it would only be a few days.
His last game of catch with his dad in the yard - he begged his dad to play one more game with him...even though they'd been playing for an hour. Did he know we would relish that moment?
His last Catholic Central Varsity Football game - the players made him honorary captain and he got to do the coin toss! He was so proud!! I missed this game but have been told by so many that Ethan was flying high that night!
Our last walk to McDonald's for an ice cream cone - he had a seizure on the way but wanted to continue. We held the hands the whole way there.... I can still feel his hand in mine, squeezing back, not ashamed to hold his mom's hand at the age of 12. I didn't get a cone, but he did and we walked back laughing about the idea that ice cream is so bad for you yet so good!
His Celebration of Life party - oh I wanted him to feel good for this and yet the tumors had already started taking his life. He woke up Saturday morning with a jump and took a shower so excited to get to the party. But it only took about 15 minutes for his head to start pounding and he just wanted to lie down. I only had one vicadin left...I knew he would need it for the party. So I went to get early to get everything set up. Joe called and said they tried to wake Ethan up but he just wanted to stay in bed. They coaxed him out and got him to the party. I met them in the parking lot. Ethan just wanted to lie down. I was crushed he didn't even notice the We Love You Ethan sign... but also knew he was fighting incredible pain. I told him I had his pain pill and he would be fine in a few minutes. He was. He was incredible for the rest of the day. He talked to people, laughed, sat for pictures - it was just a get gift he gave to everyone that day.
Our last night at home, my brother and his family came over after the party. Their kids usually slept upstairs in our kids' beds. Ethan stayed up with us and then at 10 said he wanted to go to sleep. He usually went to sleep in our bed and then we would move him after my brother left. This night, he wanted to sleep in his bed. My sister-in-law said that's fine, we'll just go home and Ethan got to sleep in his bed one last time. He came to our room about 3 am, just wanting to sleep with us. I was supposed to get up early to go to church, the choir was singing. Joe had already moved to sleep somewhere else and when the alarm went off I rolled over to hold Ethan, I noticed he was very warm and moaning in his sleep. When I tried to wake him, he just said it hurt really bad. I got up and called the doctor. We were to bring him into the hospital. Ethan didn't want to go. He just wanted to stay in our bed. Joe carried him to the car. I drove to ER. Joe stayed home with Erik. I knew when we were driving that it would be the last trip I made to the hospital with him. I knew when I checked him in that I wouldn't be doing that anymore. I wouldn't have to recite his full name and birth date. I knew because Ethan was asleep in a wheel chair not responding to anyone or anything. All previous trips to ER, he was checking himself in! I would just stand there and say that he was right!
One last CT scan - after giving him some pain meds, they took him for one last CT scan. He was able to scoot on the table and lay there. The results came too soon. The tumors had taken over his brain. I asked the doctor if we had hours, days...? She said something like that. She was new to the pediatric oncology team and that day was the first time I had met her. She hugged me and apologized. She talked about hospice. It was Sunday and we probably wouldn't be able to meet with the hospice team until Monday.
One last port poke - Ethan was still moaning and complaining of pain. Morphine was ordered. The ER nurse was trying to access Ethan's port and it wasn't drawing back. I just kept holding Ethan's hand, telling him she was almost done. He had reverted to my 4 year old little boy and kept saying: help me mommy, help me. I kept saying, I'm trying, Ethan. I finally told him I was helping. The nurse pushed the morphine and Ethan screamed that it burned. I just tried to hold him and watched the push. Kept telling him it was almost done as I was asking the nurse why it burned. She said sometimes it does that. The push was over. Ethan lay quietly on the bed, his heart rate normal, asleep. The morphine working in his body. The ER nurse hugged me and apologized. A dear friend from church was there and hugged me. I called Joe and told him we were being admitted...we had to make a decision about hospice. I called our dear nurse who had given me her phone number only days before. Ethan was going to die...there was no coming back from this one.
Our last admittance - We got the big room! I told Ethan - we got it buddy, we got the giant room you wanted but couldn't have before. I hope he knew. So many people came to visit. To say goodbyes to him. He was unconscious and non-responsive but people came.
Our last night together - Sunday evening about 8pm Joe, the boys, everyone said goodbye and left me and Ethan alone. We had decided not to do hospice because the time was going quickly. The pastor that baptized Ethan came up to visit. We talked a while and he blessed Ethan and sang him a beautiful lullaby. Our dear child life friend came up to visit about 10 and said her goodbyes to him. She encouraged me to sleep with Ethan so I would have that memory. I tried but he kept having seizures and it was just too difficult. I went to sleep on the cot begging God to wake me if He was going to take Ethan during the night. At 3 am, I heard Ethan say Mom?. I awoke with a start and went to him. He was cold and breathing was difficult. I buzzed the nurse. She said he was fine. His body was just shutting down. I asked if I should call Joe and she said some children take days of this, some take hours. I called Joe. He, Jared, and Erik arrived about 45 minutes later. We all said our goodbyes to Ethan. One at time. While one was talking to him the rest huddled by the door. When Jared was saying goodbye, I hugged Erik and apologized to him that his life was affected by all this. He responded that it was God's plan, right? He was so bitter and angry. I hugged him harder and told him that I didn't know why but yes, it was God's plan. After we all said our personal goodbyes, we just sat around and talked about Ethan. Joe and I took turns laying down with him. About 6 am, Jared and Erik asked if they could go home. I told them they needed to understand that when we called them it would probably be to say that Ethan had died. They needed to be okay with that. They decided they were.
Our Last Monday morning - a couple of friends come up, my brother and his wife too. We were just waiting for Ethan to take his last breath. Our dear P.A. came in and walked over to say her goodbyes. Her baby had died from SIDS in January. She told Ethan that there was a baby named Joey in heaven that needed to be taken care of. Ethan drew his last breath. I was across the room when I noticed he was turning blue. Joe and I rushed to him. We held his hands and told him it was okay to go. We were going to be fine. Jesus loved him so much more than we did. The doctor came in, his heart was still beating. We just kept rubbing his hands and continued to tell him it was okay to go. My mind was filled with praise music, my heart was bursting with joy - not sadness. I could see the heavens and I watched as my precious son went with Jesus. He was pronounced dead at 10:01.
Our first day without Ethan - the social worker came in, all of our doctors and nurses came in. We hugged, we cried, we talked about what a great kid he was! I called to arrange the funeral. We were filled with such peace. We walked out of the hospital about 1 that day. Without Ethan's body, but with his spirit. We started to learn to live without him physically. It would be the first day without him.
On Sept. 8 it will be two years since we said goodbye to our baby boy. It seems like it was yesterday. I see his pictures everyday, I hear his voice, I feel his hand in mine...everyday. Some days are emotional, some days are not. When the tears do come they are not tears of pain,but just a release for me. A tear to say I remember you, I love you and I can hardly wait to be with you again!
Ahhh...September. Who would have guessed you would mean so much to me?
No, the month is September. September is the month I love because my son died in September. I love to re live every day of his last days.
His 7th grade open house - he was so proud to be there, making sure I was introduced to all his teachers, saying hello to all his friends he hadn't seen all summer. His first day of school - up and ready to go at dawn - couldn't wait to get the year started...even though he knew he wouldn't make it the whole year. We all knew he wouldn't make it...but we didn't know it would only be a few days.
His last game of catch with his dad in the yard - he begged his dad to play one more game with him...even though they'd been playing for an hour. Did he know we would relish that moment?
His last Catholic Central Varsity Football game - the players made him honorary captain and he got to do the coin toss! He was so proud!! I missed this game but have been told by so many that Ethan was flying high that night!
Our last walk to McDonald's for an ice cream cone - he had a seizure on the way but wanted to continue. We held the hands the whole way there.... I can still feel his hand in mine, squeezing back, not ashamed to hold his mom's hand at the age of 12. I didn't get a cone, but he did and we walked back laughing about the idea that ice cream is so bad for you yet so good!
His Celebration of Life party - oh I wanted him to feel good for this and yet the tumors had already started taking his life. He woke up Saturday morning with a jump and took a shower so excited to get to the party. But it only took about 15 minutes for his head to start pounding and he just wanted to lie down. I only had one vicadin left...I knew he would need it for the party. So I went to get early to get everything set up. Joe called and said they tried to wake Ethan up but he just wanted to stay in bed. They coaxed him out and got him to the party. I met them in the parking lot. Ethan just wanted to lie down. I was crushed he didn't even notice the We Love You Ethan sign... but also knew he was fighting incredible pain. I told him I had his pain pill and he would be fine in a few minutes. He was. He was incredible for the rest of the day. He talked to people, laughed, sat for pictures - it was just a get gift he gave to everyone that day.
Our last night at home, my brother and his family came over after the party. Their kids usually slept upstairs in our kids' beds. Ethan stayed up with us and then at 10 said he wanted to go to sleep. He usually went to sleep in our bed and then we would move him after my brother left. This night, he wanted to sleep in his bed. My sister-in-law said that's fine, we'll just go home and Ethan got to sleep in his bed one last time. He came to our room about 3 am, just wanting to sleep with us. I was supposed to get up early to go to church, the choir was singing. Joe had already moved to sleep somewhere else and when the alarm went off I rolled over to hold Ethan, I noticed he was very warm and moaning in his sleep. When I tried to wake him, he just said it hurt really bad. I got up and called the doctor. We were to bring him into the hospital. Ethan didn't want to go. He just wanted to stay in our bed. Joe carried him to the car. I drove to ER. Joe stayed home with Erik. I knew when we were driving that it would be the last trip I made to the hospital with him. I knew when I checked him in that I wouldn't be doing that anymore. I wouldn't have to recite his full name and birth date. I knew because Ethan was asleep in a wheel chair not responding to anyone or anything. All previous trips to ER, he was checking himself in! I would just stand there and say that he was right!
One last CT scan - after giving him some pain meds, they took him for one last CT scan. He was able to scoot on the table and lay there. The results came too soon. The tumors had taken over his brain. I asked the doctor if we had hours, days...? She said something like that. She was new to the pediatric oncology team and that day was the first time I had met her. She hugged me and apologized. She talked about hospice. It was Sunday and we probably wouldn't be able to meet with the hospice team until Monday.
One last port poke - Ethan was still moaning and complaining of pain. Morphine was ordered. The ER nurse was trying to access Ethan's port and it wasn't drawing back. I just kept holding Ethan's hand, telling him she was almost done. He had reverted to my 4 year old little boy and kept saying: help me mommy, help me. I kept saying, I'm trying, Ethan. I finally told him I was helping. The nurse pushed the morphine and Ethan screamed that it burned. I just tried to hold him and watched the push. Kept telling him it was almost done as I was asking the nurse why it burned. She said sometimes it does that. The push was over. Ethan lay quietly on the bed, his heart rate normal, asleep. The morphine working in his body. The ER nurse hugged me and apologized. A dear friend from church was there and hugged me. I called Joe and told him we were being admitted...we had to make a decision about hospice. I called our dear nurse who had given me her phone number only days before. Ethan was going to die...there was no coming back from this one.
Our last admittance - We got the big room! I told Ethan - we got it buddy, we got the giant room you wanted but couldn't have before. I hope he knew. So many people came to visit. To say goodbyes to him. He was unconscious and non-responsive but people came.
Our last night together - Sunday evening about 8pm Joe, the boys, everyone said goodbye and left me and Ethan alone. We had decided not to do hospice because the time was going quickly. The pastor that baptized Ethan came up to visit. We talked a while and he blessed Ethan and sang him a beautiful lullaby. Our dear child life friend came up to visit about 10 and said her goodbyes to him. She encouraged me to sleep with Ethan so I would have that memory. I tried but he kept having seizures and it was just too difficult. I went to sleep on the cot begging God to wake me if He was going to take Ethan during the night. At 3 am, I heard Ethan say Mom?. I awoke with a start and went to him. He was cold and breathing was difficult. I buzzed the nurse. She said he was fine. His body was just shutting down. I asked if I should call Joe and she said some children take days of this, some take hours. I called Joe. He, Jared, and Erik arrived about 45 minutes later. We all said our goodbyes to Ethan. One at time. While one was talking to him the rest huddled by the door. When Jared was saying goodbye, I hugged Erik and apologized to him that his life was affected by all this. He responded that it was God's plan, right? He was so bitter and angry. I hugged him harder and told him that I didn't know why but yes, it was God's plan. After we all said our personal goodbyes, we just sat around and talked about Ethan. Joe and I took turns laying down with him. About 6 am, Jared and Erik asked if they could go home. I told them they needed to understand that when we called them it would probably be to say that Ethan had died. They needed to be okay with that. They decided they were.
Our Last Monday morning - a couple of friends come up, my brother and his wife too. We were just waiting for Ethan to take his last breath. Our dear P.A. came in and walked over to say her goodbyes. Her baby had died from SIDS in January. She told Ethan that there was a baby named Joey in heaven that needed to be taken care of. Ethan drew his last breath. I was across the room when I noticed he was turning blue. Joe and I rushed to him. We held his hands and told him it was okay to go. We were going to be fine. Jesus loved him so much more than we did. The doctor came in, his heart was still beating. We just kept rubbing his hands and continued to tell him it was okay to go. My mind was filled with praise music, my heart was bursting with joy - not sadness. I could see the heavens and I watched as my precious son went with Jesus. He was pronounced dead at 10:01.
Our first day without Ethan - the social worker came in, all of our doctors and nurses came in. We hugged, we cried, we talked about what a great kid he was! I called to arrange the funeral. We were filled with such peace. We walked out of the hospital about 1 that day. Without Ethan's body, but with his spirit. We started to learn to live without him physically. It would be the first day without him.
On Sept. 8 it will be two years since we said goodbye to our baby boy. It seems like it was yesterday. I see his pictures everyday, I hear his voice, I feel his hand in mine...everyday. Some days are emotional, some days are not. When the tears do come they are not tears of pain,but just a release for me. A tear to say I remember you, I love you and I can hardly wait to be with you again!
Ahhh...September. Who would have guessed you would mean so much to me?
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