Monday-- August 24th

Michael and William are at the Hole In The Wall Gang Camp this week. We drove them down to CT. on Sunday morning. I miss them like crazy, but they really needed to go and have fun. As always, it was very emotional for me arriving there. So many memories. Ernie came with us this time. It was the first time he had ever been there. He really thought it was great. He asked me to point out Maddie's cabin to him. As I pointed it out to him, I envisioned Maddie standing in front of it, waving to us, as she did that day I left her at camp.

There are two cabins separating the boys. They each chose the same bunk bed in their cabins. The top bunk of the corner bed. That was funny. A few of Michael's counselors from last year are there again, and gave us all such a warm greeting. I didn't see any of William's counselors from last year, but one counselor told me he remembered William from last year...I'm sure he did. William does leave a lasting impression!

We got the two of them settled into their cabins. There were a few things left behind from the last camper on William's nightstand, so I proceeded to clean up his space, make his bed, fold up the extra blankets, and then asked for a vacuum! I was kidding, but wanted to see the reaction of not only the counselor, but Ernie, who had been watching me, almost in embarrassment! I thought it was funny.

Thomas was sad to leave his brothers behind, but I promised him that we would do a lot of fun things throughout the week. I saw William give him an extra loving, good bye pat on his back. The two boys seemed to be settled in nicely as we left. It was pouring rain, so the fields were full of mud and everyone was hanging out in the cabins. Unfortunately, there was no playing in the field that day. I hope the weather clears up and they have a great week!

Before the boys left for camp, William got to go over and get a tour of his school and classroom. He had missed "move up" day at the end of the school year, so I wanted to make sure he knew where he was going when school starts. I brought Thomas with us and as soon as we walked into the school, both boys noticed Maddie's beautiful paintings hanging and her "Never, Never, Never give up..." sign. They were very proud.

There was so much excitement in the hallway. Moms and kids all making their way to the class lists to find their teachers and classmates. I wish I could've been as enthused. It's so hard always feeling the void along with the good. It really is. We read the class lists, learned who William's teacher will be, who his classmates will be, and began his tour. He's very excited. Of course a pal of his joined the tour, so it was a struggle to keep him focused. Thomas was more interested than William! We headed upstairs and I felt a knot in my stomach. I hadn't been up those stairs since Maddie entered third grade and we brought nurses in to talk with her class about what she would be going through...

Anyway, we got upstairs, went down the hall, and yes, William was in the exact same classroom as Maddie was. Different teacher, same classroom. Damn. Of all the rooms, he got that one. So, we went in and he looked all around. I saw Maddie's little desk and thought back to that day. She was so young, so cute, so excited about coming to a new school, so brave to be starting a new school with a life changing diagnosis on her plate. I thought about the presentation the nurses had done, and about the questions her classmates asked. I smiled when I remembered Maddie's wit. When the teacher asked her what the class could do to help her, she smiled and said, "You can all shave your heads!" Isn't that hysterical!? She was so awesome.

Tour over. Next we went over to Thomas' school to find out who his teacher and classmates will be. He got two teachers that will be job sharing in his class and he knows a few of the kids in his class. He's excited, but sad, that he and William will not be in the same school anymore. William is psyched! He wants his space and he's not shy about expressing that. I have to keep telling him not to let Thomas hear that. I don't want his feelings to get hurt!

Michael is thrilled that he and his best pal got a lot of the same classes this year! They weren't together at all last year. I am so thrilled for them! I can't believe this is Michael's last year in middle school and then he goes to high school!!

I miss my fence and our "We Love You Maddie" sign. Several people have mentioned it to me as well and have told me they miss seeing the Maddie sign...

Went to watch the church wedding ceremony of our friend, Kelly LaBlue, last Saturday. I was so happy to be there. Kelly looked beautiful, the wedding party looked beautiful, and I loved seeing Robin in her "Mother of the Bride" outfit. So pretty. I wondered what she was feeling. What does it feel like to be the Mother of the Bride...or Groom. During one point in the service, the names of loved ones who have passed were read out loud. Maddie was one of them. They had listed her name in their wedding program. I was so touched, so moved. At the end of the ceremony, butterflies were released. They were meant for the little kids to release, but Kelly's sister handed one to me. I felt so privileged. It was so special. Maddie and I had released butterflies at her pal, Meghan's funeral, and I had wanted to do that for Maddie, but the butterflies are seasonal and we were not able to. I felt like my butterfly was a special one for Maddie. I almost didn't want to let it go. I released it and watched it fly away...

I know that at the reception, there was going to be a picture of Maddie, with a letter to the guests, letting them know that in lieu of wedding favors, Kelly and her husband, Kyle, made a donation in Maddie's memory to the PMC. How incredibly thoughtful. Thank you to Kelly, Kyle, and the LaBlue family, for always being so kind to our family. You are such loving, thoughtful, giving people, and we are lucky to know you. Thank you for honoring our girl.

After the mass, I went down to sit with Maddie. I talked about my butterfly, told her all about the wedding, even though I know she saw both. I could go on and on about how sad I was as I sat there, knowing I will never see Maddie in a wedding gown, but what good would that do for anyone to read about. I watered her flowers and had a good cry.

So much rain this week! I know we needed the rain, but enough is enough. Rainy day activity today. I'm going to take Thomas to see the Nanny McPhee movie, even though he thinks it looks "stupid." He is 6, you know. Way too cool for this movie!

As the summer winds down, I just want to ask a special favor. Please keep our troops and their families in your thoughts and prayers as you start and end each day. My dear friend since childhood, Christy, has been “holding down her fort” as her husband, Tom, has been away, stationed in Afghanistan. She has two kids, Hawley and Tommy, who miss their Dad terribly. For his birthday, I sent Tom a card, along with a bottle of Holy Water and one of Maddie’s pins. I wanted him to know he is thought of and how grateful we are for his service. Tom put Maddie’s pin in his troop vehicle and sent Christy the picture. We posted it on the picture page of the website. Please check it out. It’s so beautiful and moving. To know that our soldiers see Maddie’s beautiful smile all the way in Afghanistan, with her encouraging words, every day, gives me such a warm feeling. I truly hope it brings them a smile each day, and they feel comforted and inspired. I pray that Maddie will help watch over them and that the special Holy Water from Lourdes will bless them with God’s blessings.

 

Monday-- August 16th

My white picket fence is gone...in more ways than one.

I remember the day that fence was installed. Michael and Maddie were little. Michael was about 3 1/2, Maddie was about 2. I remember one girlfriend joking with me when we had it installed, saying, "Of course you got a white picket fence. You have a boy, a girl, and now the white picket fence. Everything is perfect."

The perfect white picket fence. How cliche. Completed the picture right? Domestic bliss, comfort, serenity, safety, perfection, completion. You know the white picket fence cliche. Well, it's gone now, along with so much of what it symbolized.

When Ernie told me he was going to take it down, my first thought was, where will we hang our "We Love You Maddie" sign? It had been on our fence since Maddie passed. To me, taking down our fence was just another step in moving away from what was. What we had, what used to be. I didn't want to take that step. The fence being torn down was so symbolic to me. We tried to hang on to it for as long as we could, but it had worn beyond repair and was not fixable. It was time to let it go.

I stood back, across the street from our house, and looked at the yard when the whole fence was down, our sign was gone, and had several thoughts and feelings.

I feel so exposed, so open, and it doesn't feel as safe, as comfortable. It's so different. That fence was more than just a fence. It had represented so much and now it was a last barrier. A surviving remnant of what was. Our "old life." It made me feel safe. What we had was safe. My kids were safely behind it, our home was nicely tucked back. It was a part of our home. It's so crazy how different it feels for me now that it's down. It's a different looking yard, a "different" family emerging from behind the fence. All things changed.

Things aren't perfect anymore. Well, perhaps they never were. I mean really, is anyone's life ever truly "perfect?" Our lives are certainly different now. The fence and all it represented for me, is forever changed. We don't have the white picket fence anymore, so we have to create a new "fence."

We are more exposed in life, we are raw, we are more open, literally. I don't think we'll replace the fence with a new one, not this year anyway. If we ever do replace it, it will be a different kind. A changed fence. In the meantime, I painted the mailbox post white and hung a pink and yellow butterfly to each side of the post. I had to lose my fence and all it represented, my Maddie sign, but I couldn't let go completely. I had to hang the butterflies. I'll always keep butterflies on my mailbox...

Life is moving on. Our fence is gone, our sandbox is gone, and Maddie has been gone for 22 months today. I don't like it, but it is my life. It is our life. We still have our home, our family, our love, our memories, our future. I am heartbroken about what was, and always will be, but on the flipside of all of this, I have to find the strength to look at it as, yes, our lives are changed. What we had will never be the same. We are embarking on a new lifetime of experience and we must be open to it all. We have to let go of the life we had and trust in what is to come. Our white fence is gone, but I pray that one day we will feel the happiness, comfort, serenity, and safety again with God's "fence" all around us. I've let go of the perfection and completion. I know those two things are things I will never feel again in this world. We'll have those gifts when we're all together in Heaven again.

On a positive note, another way of looking at this, is that now Hope is free to roam the streets, I mean yard, more freely. Yeh, that's a good thing right? Just kidding...I'm trying to keep her safely in the back yard!

Tuesday-- August 10th

Everything happens for a reason...

I had been training for the PMC ride and was so excited for the big day. The weather was going to be perfect and I'd be riding alongside my sister and good friends. I was looking forward to another amazing experience. Well, God had other plans for me...

Saturday morning, a week before the ride, I did a 30 mile ride with Paul, Amy, and Tammy, and just as we were finishing, I got a terrible headache, stiff neck, and did not feel well. I figured I just dehydrated myself. Ernie was away with the boys and I was going to meet them all at the campsite the next morning. I got a few things done during the day on Sat. but had a headache all day. Alternated between Motrin and Tylenol around the clock, and I usually don't like to take medications. Had dinner with Stephanie Sat night. All through the night I had terrible headaches. Got up early Sun to drive to Nickerson, about 1 1/2 hours away. My head really hurt, my eyes hurt, and I could barely move my neck. Made for a nice, relaxing car ride. I couldn't wait to get to the campsite, sit in the sun, and sleep on that hard mattress! I did want to see my boys...

Spent the day at Nickerson and the beach, but I ended up coming home that night with the boys. They were ready to come home. Ernie was more than happy to spend the last night by himself. By Monday morning I was just wiped out. Awful headache, body aches, clammy. Went to the doctor. Had no fever at that point, but she gave me pain meds to help with the headaches and help me sleep. She told me to get hydrated and she'd see me on the ride on Sat. She does the PMC too.

Ernie got home and by dinner time I had a 103.6 fever and was feeling awful. Called my doctor and she told me to go to the ER. My friend, Terri, took me, so that Ernie could stay home with the boys and get them into bed. I didn't know what I was in for. Once there, they put an IV line in for fluids, drew several blood samples, did a CT of my head, and X-Ray of my lungs. Everything came back negative in regards to the tests they ran, but my blood levels had bottomed out, white blood cells, platelets, I was anemic, and my liver was in overdrive, trying to fight whatever was going on. I didn't know how sick I really was. I just thought I was dehydrated.

After my CT, the staff had another patient, so they wheeled me into the hallway in the wheel chair and said someone would be back to get me and bring me back to the ER. There wasn't another person on the floor. It was the middle of the night. I sat in that chair, in the vacant hallway, for at least 30 minutes. I was so mad that I was just left there. To entertain myself, I wheeled up and down the hallway, at a very slow pace. I called out into the little office, "Um, excuse me, is anyone actually coming back to get me? I could've crawled back by now." I heard, "You cannot take yourself back there and yes, someone will be here." I just sat there, shook my head and said to Maddie, "Maddie, can you believe this?! This would never have happened at Children's!" I imagined how the two of us would've found the funny in it all, and passed the time, as we always did, but at that moment, I felt very alone.

Finally, Bob, the tech, appeared. I said, "Hey Bob, where the hell have ya been?!" He smiled and handed me off to another nurse, who asked me if I was "ready to go back?" I said, "No, not just yet. I think I'd like to sit alone in my jonnie, in this hallway for a bit longer."

When I finally got back to the ER, I had a wonderful surprise waiting for me - a spinal tap to test for meningitis. By that time, it was around 2am. Terri had gone home and Ernie had showed up. Meningitis was negative. I was admitted and stayed in until Wed with continual hydration, pain control for the aches and headaches and blood draws around the clock. I was so scared, not knowing what was wrong and hated being in the hospital setting. When Ernie went home, I cried and asked Maddie to give me a "leg blanky" and sleep with me, just as I had with her in the hospital bed.

So, I was discharged on Wednesday, not having any answers, with low counts and the thought of leukemia in the back of my head. This "virus" in my blood showed all the same symptoms of a leukemia and the word had been tossed around at the hospital. They convinced me it was viral not leukemic. The doctor said, "When we hear hooves, a horse usually comes around the corner. It's not often that we hear hooves and a zebra shows up." I said, "It better be a damn horse coming around the corner!"

So, I continue to have blood draws and still have no answer yet. I am on antibiotics for three weeks to treat for a possible tick born virus. Have to avoid the sun, which is not easy in the middle of the summer, and just have to take it easy and hope my body recovers quickly and we get some answers.

So, as far as the PMC ride goes, no I did not get to ride. I did get out and cheer our team on however, and I did wear Don Etkin's pink and yellow butterfly jersey that he so proudly wore for Maddie. I wore it in honor of Don and Maddie together. I was so happy I could be standing there, and I was so happy to hug my teammates, my sister and friends, as they rode in. I was so happy I saw Colleen. We gave each other a huge hug and off she went, with our Angels on her back.

As I sat and had a pity party for a few minutes over not riding, I wiped my tears and thought about all the things Maddie so desperately wanted to do and didn't get to. No, life isn't fair sometimes, but you have to find a way to deal with it. It's very easy for me to put things in perspective after losing a child. Makes everything else seem so "easy" to deal with. Yes, I was upset, but had to remind myself that I had done the fundraising and that was the most important part. I do believe everything happens for a reason and I tried to sit with it and figure out why. Why would I lose out on the PMC ride that meant so much to me? Why get so sick now? I think I know why.

I think God had to get my attention. Had to knock me to my knees so I would listen. And let me tell you, I was knocked to my knees. I think my message is clear, from God and from Maddie. I have let myself go for far too long. My physical and mental well being. I'm exhausted to the core and then became so dehydrated on top of it all. I have been having a very hard time without my Maddie, with my grief, with the hand I've been dealt. I cry to Maddie every day, and I feel like she needed me to stop and take a hold of myself. God wanted to shake me. To make me realize that I need to take better care of myself. Somehow get myself to a "better" place. Maddie doesn't want me to be so broken inside every day. The emotional fear of this virus and the physical toll it has taken on me, scares me, and all I can think about is my boys. They need me, Ernie needs me, and I need to be here for them. I need to get healthy and stay healthy.

I just read a quote in a book yesterday and it really struck me. Just another way for me to look at this whole picture... "When we are no longer able to change a situation - we are challenged to change ourselves."

Another reason for my missing the PMC - it was Ernie's turn!! Yep, Ernie went out the night before, bought a bike, and with no training, rode for me! Isn't that awesome?! Ernie said he felt like Maddie was telling him to step in and do the ride! He did it! It was great to hug him with the others as he rode into the water stop. He seemed excited to be a part of it all. We're all so proud of him. Although he was exhausted and couldn't wait for the ride to end, he had such a great experience and wants to do it again next year! The spouses of our other riders are thinking of joining in too! It will be hysterical next year! I can't wait!

When the founder of the PMC, Billy Starr, gave his power point presentation at the opening ceremony, out of maybe four visuals, the picture of Maddie and Meghan was one of them! It popped up on three huge surround screens, in front of the thousands of riders, when Billy said something to the effect of this is why we ride, in honor of our loved ones. I wish I could've seen that. Michelle and Stephanie Knowles were there and called me to tell me. How amazing! Of all the thousands of pictures, thousands of stories, our beautiful girls were put on the screen. So touching, so surreal.

I want to thank our new team members, our dear friends, Paul Altmeyer, Dave Dimond, Beth Hill, Chip and Terri Coletta, Tammy Bourque, and Kelly Annis, for joining Pedals For Pediatrics. You guys are amazing, I am so proud of all of you, so honored to call you my friends, and we love you all! Thank you for your selflessness, your giving, your caring, your determination to help others in memory of our Maddie, her dear friend Meghan, and all of our other loved ones who have battled cancer or whom we have lost. I know, as you have shared with us, what an amazing experience this was for all of you, and I'm so glad you have all decided you are now PMC "lifers!"

We'll be back next year in full force! "Never, Never, Never give up!"

 

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