What's wrong with me?

Have you ever just wanted to feel normal? Like you fit in with the rest of the crowd? Well, I don't fit in. For some reason beyond my comprehension, I do not grieve my son like others who grieve. I do not have a big whole in my heart, I do not feel sadness on each holiday because he is not here. I do not count how old he would have been on his birthday.
I only have total complete peace and joy about his life. I am so happy that he is with God. I am so thankful for all the people we met along the journey. I am thankful for people that we have met that have also experienced the death of a child.
I just feel out of place. I should be crying, I should be sad, I should be upset that I have to have Christmas without him. I'm not and I can't seem to conjure up those feelings.
I feel as though I am blessed to have that complete joy and peace but when the people I know who are grieving and sad it's hard for me to say that I understand their sadness, I can't because I don't have it.
I am so completely thankful for Ethan. For the life that God gave him, for all that Ethan gave us! What a joyous child and sometimes a complete pain in the butt! But he was my kid and I loved him wholly and completely just as my other children. So.... what's wrong with me?
Thank you God for this joy that I cannot explain. I pray it for others who are traveling down the road of life without a loved one.

Bethlehem

How far is it to Bethlehem? Not very far. - words from a familiar Christmas song that is ringing in my ears lately.
I'm just having such a difficult time with life application in general. The idea of changing a paradox is intriguing to me. The paradigms that seem to be overflowing in our world is world peace and curing all kinds of cancer, disease, etc. So my very innocent question is this: Why are we fighting so hard to stay in a world we can hardly bear? People complain constantly about real things like disease, doctors, insurance, and then simple things like the weather. We can't stand our neighbors, the doctors did us wrong, our kids' teachers don't understand, the snowstorm, rainstorm, on and on and on. Then something tragic happens and we unite with these people that we couldn't deal with before, we realize that we can live together if we just put our differences aside, and we fight. We win or lose the fight and we go back to living the way it was before.
I love God. I want to serve Him in any way that He wants me to. I just keep coming back to the question of selfishness. When Ethan was sick, I would have done anything to keep him here...until the questions of blinding him or rendering him four times less intelligent than he was came into play. Then I started to question my own selfishness to keep this child with me when I knew that He could live eternally without any of this. Was I so determined to have this child by my side that I was willingly to sacrifice his quality of life? The answer for me was no. I knew/know that Jesus could offer him so much more than I ever could. Would it bring me pain? Yes. Would I regret my decision? No. How could I live with myself knowing I tortured my child for my benefit?
How far is it to Bethlehem? Not very far....we are so close to heaven, to home. We only need to serve others here who suffer, to love those that are not loved, and to pray for guidance when we are uncertain of the crazy life we live here. Home is certainly not on this earth as we are so fervently told to believe but IT IS with CHRIST in Heaven. This is just a vacation with horrid stories and good laughs that I can hardly wait to tell my Father about when I get home....funny thing...He already knows the stories!

Grand Rapids 1/2 Marathon

I did it... today I ran the 1/2 marathon (13.1 miles) at 2:09:58 to my total surprise! Yes, I signed up for it back in August...along with a 5k(3.1 miles) and the Bridge run (10 miles)and figured signing up for them would get me training! Well, life got busy and it was really hard for me to run during the week. I usually got in one short run during the week and tried to get in longer ones on the weekends.
The bridge run was hard as I mentioned in my earlier post and when I finished I knew that I hadn't trained enough and I needed to do that for the 1/2 marathon only 4 weeks away! But life continued to be busy and running during the week was extremely difficult and again only got one or two short runs in and tried to do long on the weekends.
2 weeks ago, I decided to try to run 13.1 miles to see how off I was going to be. I only made it 12 and it took me 2 hours and 12 minutes to do it. I was exhausted at the end and I walked a lot!
I got two short runs in before today. This morning I got up, put on my Ethan running shirt - the E symbol on the front and "Give me half the strength of Ethan" on the back - excited and ready for whatever was going to happen. The Chamber Choir - I'm in it - sang O Canada and The Star Spangled Banner before the race - it was beautiful and so fun to do!!
Then off to the race... I hit 3 miles at 28 minutes - the best I'd run in a long time and I was feeling great! I hit 10 miles at 1 hour and 37 minutes - my bridge run time was 1:42?!! - then came mile 11 and mile 12...thought I was going to throw up...never had that happen to me before in a race..so I slowed to a walk trying to calm my stomach. Also at this time, some crazy song was playing on my mp3 player. I thought I had added Lady by Little River Band

which tells you to look around, look up here, take time to make time, make time to be there (a great uplifting song for me) but for some reason I didn't pay attention to the artist when I downloaded it and it was Lenny Kravitz Lady!

Not at all what I expected and it completely threw me off. So I'm walking, trying not to throw up and trying to figure out what this song was and why I had added it to my playlist....when a lady came up behind me and touched my shoulder and said "run for Ethan"...I told her Thank You and was thinking God bless you and started running again...not 2 seconds later the song "I'm Blue" by Eiffel 65 came on - it was one of Ethan's favorite songs!

I smiled, looked to the heavens and said thank you and ran on to the finish! Joe and Jared came and saw them about a tenth of a mile from the finish line. That helped me even more and I was able to sprint it in to the finish line! It was great to finish feeling so good.
God blesses us in ways we don't even think of and He is so awesome! It's a great day to be alive in Christ Jesus!

mp3 player

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!

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.

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?

Confession

I admit it...I love Barbara Streisand and her movies. One in particular - Yentl - for some reason really touched my heart at the age of 18.
One of the songs she sang has a line that goes something like - "There are moments you remember all your life....these are one of those moments"

I remember Ethan throwing his whole body on my back as I was sitting in the living room at my brother's house two days before he died. I remember how unusual it was for him to do that. He was a front hugger but he literally covered my body with his and just hugged me...
I remember holding his hand as his heart beat its last beats. He had already stopped breathing and I was hearing praise songs in my head and rubbing his hand and telling him it was okay to go. Jesus loved him so much more than we did and that we were going to be okay. I remember telling him he did it! He fought the good fight and now was his prize.
I remember when he was about 3 years old and we were driving in the car and he was laughing and smiling and I asked him what was so funny and he just looked at me and said "Mom, I'm just so happy"

There are moments you remember all your life.....these are some of those moments.

Grades

I got my grades for the last Master's class. I got an A. I was extremely nervous because of a project that didn't get graded until after the class ended.
This got me thinking...
Am I as nervous about the grade God is giving me? Am I at all concerned about my grade point average with Him? How many projects did I completely screw up? How many points did I get marked down for being absent?
Yes, God forgives, and in the end we all get A's. But what about the day to day living right now?
The syllabus is there - the bible. The rubric is written - the ten commandments. All I have to do is do it....

How?

How is it I can't hear your voice? Or sense you walking into a room? Have I forgotten you completely?
No...my heart knows you best...memories of laughter,tears shed, and hugs felt. I loved you as only a parent can and yet...I'm starting to forget.
Oh, I forgot with your brothers too...but I can see them and listen to them. They live not only in my heart but in my life too.
I just want you to know that I'm trying to remember, trying to hold on, trying to never forget.
I KNOW I will see you again, oh, I long for the day...I love you, buddy.......always.

Thoughts

It's Confirmation Sunday at church next week. Tonight I went and watched the confirmands give their profession of faith. It was wonderful to hear how God has worked in them and how deeply rooted their faith is. This is the year Ethan would have been confirmed. It was bittersweet to hear his friend say that having faith means you're not afraid to die that death doesn't mean it's over.
I've not had the feelings of this "would of have been" about Ethan until this last week. I'm not sure if Erik graduating is bringing it on or if I am just so overwhelmed that I am allowing those thoughts to occur. I don't like them, I don't like the pain associated with them and when they happen I pray that God take them away and I tell Satan to get behind me. It's so easy to be sucked in by grief, so easy to wallow in the pain and the suffering, so easy that Satan brings it every moment he can.

I know that Ethan's life was supposed to be exactly what it was and I know that I will see him again in heaven. There's no need for me to think about the would's or should's because in my mind, it happened the way it was supposed to.

"I will not boast in anything, no gifts, no power no wisdom. But I will boast in Jesus Christ, his death and resurrection." lyrics from "How Deep the Father's Love for Us" by Stuart Townsend.

There's the plan

So today...I actually said something out loud that I have only ever thought about in the recesses of my mind. And when I said it out loud...the world didn't come to an end, I didn't cry, and I was at total peace. Wow... so does this mean I need to follow through or is it just that it's okay to say it aloud and think it...
I know - confusing.
It is for me too. I'm praying tons and trying to be still and listen.

almost there

Well, I finished the Chamber Choir Concert, I finished the class and the marathon is just 4 short weeks away.
A new agenda has landed in my lap now...2 new classes that start Monday, Chamber Choir recording a Christmas CD on May 25 and in the midst of this, Erik is graduating high school on the 19th with an open house on the 23rd.
I can only close my eyes some-days and just live for that moment. To think ahead to the future is just so overwhelming! So I made it through this far and God will carry me to where he wants me go!
The 5/3 race is Saturday and I am looking forward to running that and hopefully raise some funds for We Do Care.

"The Lord is my portion," Says my soul, "Therefore, I have hope in Him." Lamentations 3:24

Ethan's Funraiser

We have decided to start raising money for different organizations in honor of Ethan! We're calling them Funraisers!

The first one will be for We Do Care. A local organization that gives to children with cancer. They were very kind to Ethan and we just want to give back a little!

I've created an event on facebook - sorry if you are getting this twice - so just click on the link below and it should take you to it!

Ethan's Funraiser for We Do Care

Basically, I'm running the 25k at the Riverbank on May 8 and the Bayshore Marathon in Traverse City on May 29 in honor of Ethan. I'm asking for donations to We Do Care in his name. We're hopeful to give them $1000.00!

You can send checks or money orders to We Do Care 759 Hachmuth Drive Comstock Park, Michigan 49321. They are a non-profit organization.

We are doing well and are learning to live with Ethan's memory instead of him. Some days are better than others, but we know that he is doing the dance of joy with Jesus and we can hardly wait to see him again!

I'll leave you with a photo I found of him on his first day of school in 2006 - heading off to 5th grade! My sweet boy! How I love him!!

The fundamental fact of existence is that this trust in God, this faith, is the firm foundation under everything that makes life worth living. Hebrews 11:1 MSG version

Chamber concert

Chamber Choir concert was Sunday. It went really well and I thoroughly enjoyed singing in it. It is such a group of talented people that sometimes I think I'm not worthy to be in it!

So one thing down, two to go. My grad class finishes in about 3 weeks and the marathon is 9 weeks off. I just signed up for my summer grad classes - one meets on Mon. & Wed. from May til the end of June - 6 - 9:30pm...yikes!

There is rest coming with spring break! Once we make it to Easter Sunday afternoon...then I have a full week with nothing but running scheduled! Looking forward to spring cleaning and good will giving!

I can do this?

My life has suddenly become...."aaaaaahhhhh" (can you hear me screaming and trying to hold on).

I have no idea what I was thinking when I planned this semester out:
Monday: 5:30am rise work til 3 tutor til 4 teach a parenting class from 6:30 - 8pm
Tuesday: 6:30 rise work til 3 Chamber choir 7:30 - 9:30pm
Wednesday: 5:30 rise work til 3 Master Class 6:00 - 8:50pm
Thursday:5:30 rise Bible Study 6:30 work til 3:00 tutor til 4:00 Church choir 7:00 -8:30
Friday: 6:30 rise work til 3 dinner and fun with family til 11pm
Saturday: rest, rest, rest Dinner with family and fun til 11pm
Sunday: 7:00 rise Church til 11:30am school at 3:00 til 4:00

Now you also have to add into this: grocery shopping, training for a marathon - long runs on Saturdays, the Masters class has a 20 hour out of classroom instruction requirement and 10 hours of assessment not to mention the writing involved. Some how find time to be loving and valuable to my family!

What was I thinking? I was thinking that Chamber choir is done at the end of March, the Masters class is done at the end of April and the Marathon is at the end of May. You can do this...

skunks and cancer

I went to Gilda's grief group tonight...I haven't been in ages but I knew I needed to be with people who would readily talk about "dead kids". You might think this group is all about crying and sadness but it is not. We truly laugh about some things and we share deep dark emotions that people who have not had a child die would understand. We are all at different stages of grief and we all experience grief differently but we do indeed grieve.
Tonight the discussion centered around "the elephant in the room" phenomenon that happens at holiday gatherings or any gathering for people who have experienced a death in the family. It reminded me of a time when our beloved dog - not so beloved when this happened - was sprayed by a skunk at 6:30 in the morning before a school day. Jared was in high school, Erik in Junior High and Ethan elementary and fighting cancer. When the dog came inside from his morning constitutional it was all too apparent that he was sprayed. We tried desperately to leave the house quickly so as to assume the stench. Alas, it was not to be so. All three children reported at the end of the day how horrible it was to be at school - Erik actually was taken to the office and given a "loaner uniform" in hopes of reducing the stench. Jared reported it was his worst day ever! I actually had children at school look at me funny but not say a word even though they knew it was me that was stinking the place up! Ethan and I had an appointment at Mary Free Bed to review his physical agility from Chemotherapy afterschool that same day. When we arrived, you could tell everyone knew we smelled but nobody said a word. It wasn't until our doctor came in and acknowleged that she too had experienced a dog being sprayed by a skunk that someone sympathized with our situtation.
Cancer and now death of a loved one is a lot like that. People around us know what we are going through but they don't want to talk about it for fear of embarrasing us or saying what is obviously true.
As one who has experienced cancer, death of a loved one, and being sprayed by a skunk - 3 times- I am hear to tell you. We want to talk about it, to share our misery, our joy, our laughter over the situation. To know that you love us enough to say - do you know you stink?