Friday -- July 31st

It has been such a busy time.  Sometimes trying to stay busy becomes too overwhelming!

My birthday last Friday was very special.  Ernie and my sister arranged to have a few friends over for a gathering.  I had no idea.  Ernie and the boys had taken me out to dinner and when we got home, friends started showing up.  I truly have the best family and friends in the world. 

We did a lot of family things over the weekend.  We always seem to be going in different directions and we all needed some group time.  We decided to go over to the school on Saturday to do some rocket launching.  The boys were so excited I was coming because they had done it before without me. Ernie has been buying these little rockets that actually launch 1100 ft into the air with little rocket engines. When we got to the school, Ernie and the boys all ran ahead.  I walked slowly behind and dropped my hand down, out to the side.  I asked Maddie to hold my hand.  I really felt like she was walking with me, holding my hand, and we were swinging our arms.  If anyone ever saw me they'd all think I was nuts!  I almost started skipping!

So, the rocket flying was very cool. They look so real.  Unfortunately, two of them got lost.  As they're coming down, they drift with a parachute and the wind took two into the woods.  We thought we were strategically standing in a good place.  Oops.

On Sunday, we loaded up our bikes, drove down to Providence, RI. and took a family bike ride on the bike trail.  It was beautiful, along the East Bay of the Narragansett.  The kids loved it!  William wanted to ride the tandem bike with Ernie and the other two boys rode their own bikes.  I was so impressed with all of them.  They rode about 11 miles, without complaining.  They really loved it.  We even stopped for an ice cream at a little stand on the path.  Why does EVERY kid always have to have a taste of Mom's ice cream?  Especially when it’s simply just soft serve vanilla?  They've had it before and KNOW what it tastes like! I just want to eat MY ice cream!  I always cave in and offer it up.  I love it when they ask for a taste or a lick and they chomp half your twist off!

It was so nice to do those things as a family.  I know the boys loved us all being together too.  There were lots of smiles.

Took another dear friend to get a Maddie butterfly tattoo this week!  She's #10!  It looks so pretty on her!  When she was done, we drove our separate cars to go and visit with Maddie.  When I got into my car and turned the radio on, I got the funniest sign from Maddie, letting me know she loves this whole tattoo thing.

It was the song "Tattoo," by Jordin Sparks!  Come on!  When is the last time you heard that song?! It's really, I think, a song about a boyfriend, but it was right on the lyrics, "You're still a part of everything I do, you're on my heart just like a tattoo, just like a tattoo, I'll always have you."  Isn't that so awesome?! Other lyrics in the song are, "There's still a part of me in you," and "The memory of you marks everything I do." I couldn't wait to meet up with my friend to tell her.  We both got a huge smile from that one! You're good Maddie!

William and Thomas have both been in  town recreational camps this week.  William is loving "Make it and Take It,"  and "Robotics." Thomas loved his "Fun in The Sun."  It was good for them to get out and have some routine fun for the week.  Michael goes to a sports camp, half days all this week coming up.

While the boys are in camp, I have been able to run some errands alone.  I went to Walmart the other day to grab some things and a beautiful little bald girl was walking right beside me, with who I think was her sister.  I got all choked up and so badly wanted to give her a hug, and kiss the top of her beautiful little head.  I didn't want to stare, but almost couldn't help myself.  It just really hit me hard.  Then she ran off ahead with her sister and they caught up with their Mom.  I wanted to go over and talk to the Mom, give her a hug, talk to her.  I couldn't and I didn't.  Instead I turned down an empty isle and cried. I thought about the last time I took Maddie shopping, not knowing it was our last.  I said a prayer, "Dear God, please don't take that little girl from her mother, from her family.  Please don't let this be their last time shopping together.  Please shield them from this pain.  Please restore her health and let them be happy."  It was really hard. I kept looking at the Mom.  I was scared for her.

The PMC weekend is here!!!  I can't believe it's tomorrow!

I have several guests arriving today for the weekend - my mother in law, a friend of hers, and my parents.  They are all staying for the PMC weekend.  The ride begins at 7am from Wellesley tomorrow, which means I have to get up at 4:30am and get to Wellesley for 6am. Early night tonight - no Friday night cocktails!  I have to go to Wellesley today to register and check my bike in.  I have so much to do around here to get ready for the ride and then for a cookout that I'll be hosting here on Sunday.  I didn't sleep last night - very anxious about it all!

I received a very special gift in the mail a few weeks ago.  It's a handmade shirt, made by Maddie's classmates, with their signatures and encouraging words for my PMC ride!  Isn't that the sweetest gift?!  I was so touched and have worn it a few times while out on my training rides.  Thank you friends of Maddie!  Thank you for your support and encouraging words on that very special t-shirt!

This ride is going to be amazing and very difficult. I can't believe it's here.  People keep asking, "Are you ready?"  "Have you been training?" The answer is that I'm as ready as I'll ever be.  I could've and probably should've trained more, and harder, but I know my Maddie will push me through.  I am more worried about the emotional aspect of the ride.  It's going to be very overwhelming and we actually drive right by Maddie's site.  We should get there around 8am. We're going to stop for a few minutes.  I know several friends will be there to help encourage me to keep going, but I know that will be very overwhelming. 

Our next stop will be the Wrentham watering hole, across from Tom's Tavern.  We should get there about 8:30.  That's where my family will be.  That is where we have stood every year with Maddie, to watch the ride.  I will give my high five in the air to Maddie when I get there, and hug Ernie my boys. Another emotional stop.  Then it’s off to Bourne for the finish line.

If any of you have never come out to watch the PMC ride, I highly recommend that you do.  It's incredibly awe inspiring, uplifting, sad, all in one. A sea of thousands of bikers riding by to raise money for their loved ones undergoing cancer treatment or in memory on their loved ones they have lost. It's an incredible event. My team is called Pedals For Pediatrics.  It is made up of our nurses, doctors and parents like myself, who have lost their children. We'll be wearing pictures on our shirts of Maddie and her friend Meghan.  We'll have butterfly socks on and a little yellow ball saying "M&M" on our helmets so you can spot us!

I'm not only riding in loving memory of my Maddie, Meghan, Tim O'Connell, and all of our little angel friends, but I'm also riding to help others still fighting.  I'm now also riding for that little girl at Walmart.

Come out and support the riders!  I know you'll be glad you did and you'll be touched forever

Wednesday -- July 22nd

This time last year, we had a family reunion in RI, we took a trip up North, went to Story Land and Whale's Tales, we went swimming with dolphins in Florida,  Maddie went to The Hole In The Wall Gang Camp from 7/13 - 7/18. We crammed so many amazing things in.  All of this just last year...

On this date last year, the 22nd, we were enjoying Maddie's last day at home before being admitted for her transplant.  We hung out by the pool next door with friends and had a great day.  The next morning on the 23rd, Maddie sat out on her roof top with her two pals from next door, Lauren and Kristen, before leaving for the hospital. We have those pictures on the website.

Maddie had her surgery that day to have her Broviac device put into her chest.  It had been a long day that ended with a glitch.  We were sent home because of liver issues.  You can pull up the entry from July 23rd 2008, so I won't re-hash it word for word, but I sit here in complete disbelief that it was a year ago tomorrow.

At the time we were delayed for her first admittance, we were crushed, but knew there must be a reason.  Everything happens for a reason right? Now we know the reason.  We got to have one more month at home with Maddie.  God gave us one more month at home with our girl. l am so grateful for that.  Maddie was re-admitted on August 20th.

Now that Maddie was back home, I got to enjoy my birthday with all of my kids at home that next day. That was such an awesome gift.  We had actually celebrated it weeks earlier, with my family, at a beach house in RI. Two of my favorite pictures of Maddie and I were taken during my surprise party when we were there. There is only one of them on the website.  She and I are looking at each other, wearing our birthday hats, cracking up.  I wish I remember what we were talking about.  The other one is the same picture, but I looked away for a minute, at something behind her, and she is still looking at me, with the most loving expression.  I have had both of those pictures on my refrigerator since that trip.  I'm so glad my sister captured those pictures...

So, another first coming up.  This birthday will be hard and I'd like to just skip over it, but I truly believe Maddie is here and she'll hold me up, and of course, my awesome guys will make it special.  When the boys sing Happy Birthday, I'll close my eyes and I'll hear Maddie harmonizing with them.  She'll be here. She always is.

Our family spent this past Sunday at the beach house of Bob Hayden and his wife Katy.  It was a wonderful day.  Bob is the retired Deputy Superintendent of the Boston Police, that we have written about, whose motorcycle Maddie rode on at the Cops For Kids With Cancer rally.  It was so nice to meet Katy and their family and spend the day.  Ernie and the boys found all kinds of water creatures, baby shrimp, hermit crabs.

Before we went home, Bob gave each of the boys a ride on his motorcycle.  It was very moving for me to think that is how this whole friendship started, with Maddie riding on his bike. That bike.  I watched each of the boys take their turns with huge smiles on their faces.  I could just imagine Maddie standing there with us, helping the two little ones climb on and buckle their helmet, and then standing there cheering and laughing!  She would be so excited for all three of them.  She'd say, "Michael, wasn't that awesome?!"

Thomas got his turn as we were leaving.  Bob drove him a few miles down the road, to show us the way home.  He pulled over and Thomas hopped into the car.  Then Bob handed me the helmet Maddie wore when she rode with him. He gave it to me to keep.  I could only stand there, cry and hug him. It made me feel as if Maddie was right there with us.  That was so special.  I'll wear that same helmet when I ride on Bob’s motorcycle with Bob, at the next motorcycle ride on Oct.4th.  I held the helmet on my lap the whole ride home.  I thought about Maddie.  I thought about the fun she had that day and her friendship with Bob. 

I thought about what I have said before, how I believe that God brings people in and out of each other's lives for a reason.  We each learn or teach a lesson during the friendship. Sometimes the friendship ends because it’s supposed to. It's time.  Other times, the friendship lasts forever. You're still learning and teaching. There is nothing random and there are no coincidences.  If you really stop and think about every person whose life has crossed paths with yours, then moved on, or remained, I'm sure you'll find a reason for it.  Even the briefest of encounters happen for a reason.  Anyway, I could sit here and ponder all day about this.  I find it fascinating, but I went off on this tangent when what I really wanted to say was that I know the Savoie’s and the Hayden's will be forever friends.  Thank you Maddie and thank you God, for this special friendship

 

Thursday -- July 16th

9 months today.  9 months since we've seen our Maddie.  Can you imagine?  I thought about today all day yesterday.  I hate when this day comes up.  I think each new month, I'll forget the day, but you don't.  Your brain automatically re-lives it.  Just like the day your child was born.  You re-live that day, moment by moment every year on that birthday.  You say, "Aw, this time X years ago, I was getting my epidural,"  "Aw, at this time I was pushing," "Aw, it's officially your birthday.  You were born at X time X years ago."  Now I re-live my daughter's last day, moment by moment,  in my head every 16th day of every month.  God, it's awful, and I'm sorry for being so down, but the pain is so real and I just have to get it out.

9 months...the time it takes to carry a full pregnancy, a full school year, getting to the third quarter at work. 

Throughout the fall and spring, I listened to people talking about how much they miss their son/daughter because they're away at college and it has been a month or whatever.  Now it's summer sleep away camp for a week... My Maddie's not coming home. 

9 months is a very long time, but forever's even longer...

I miss you Maddie.  I miss you so much.  I wish you could come home.

Of course I don't begrudge people for missing their children.  It's wonderful and they should, it's just so hard, but at the same time, I truly hope people don't ever stop talking to me about their children, sharing their stories, funny or sad.  I certainly don't want that to happen. I can handle it, and would feel badly if friends thought they had to alter their conversations with me. I'm still a Mom with three awesome boys to talk about!

Here's a beautiful piece I am going to try and focus on today:

She Is Not Gone

Ease your grief, she is not gone
For in your heart she lingers on.
Her smile, her laugh, her special way,
Will comfort you from day to day.

You'll feel her presence in the breeze
That dances gently through the trees.
And it's her face that you shall see
When you're in need of company.

At any time you can recall
The love you shared...you saved it all.
And really more than anything,
You'll find peace - in remembering.

 

 Sorry about the delay in getting these posted.  There are several entries going back....

Tuesday -- July 14th

Well, we're all back from our getaways.

Before I left, I rode my bike down to sit with Maddie.  My friend, Helena saw me and pulled in.  I was so glad she did.  We sat and talked and as we were sitting there, a police car pulled up.  The officer got out of his car and walked over to us.  He apologized for interrupting and said he just had to pull in to see who was buried there because he said every time he drives by, there is ALWAYS someone visiting the site.  When he came closer, he said, "Now I know.  He shook my hand and offered his condolences and stayed a while to chat. "Always," that's the word I want to hear when someone refers to how often Maddie gets visitors.  Helena promised to keep an eye on my girl while I was away, and we left.

Ernie left with the boys on Monday, mid day.  I was very sad when they pulled out of the driveway. In fact, I hid on the back floor, under Michael's knees, until Ernie pulled out of the driveway with me.  Just being goofy.  The boys all knew I was there and tried not to give me away.  I gave myself up, hopped out, and waved good bye.  I walked into the house, said, "OK, Maddie girl, it's just you and me - girl time." Then I burst out crying..for most of the day and night. I stayed home by myself, putting stacks of pictures back into the kids' individual photo albums.  Most of them had been pulled out to be duplicated for the picture displays at Maddie's wake.  I cleaned the house a bit and rented a movie. 

Going through the albums was hard.  You forget so many things.  My kids have all grown up so fast, especially Thomas.  He was just 2 years old when Maddie was diagnosed.  So much of that time after that, was spent with us running back and forth to the hospital.  Thank God for pictures, or I would've forgotten so much.  

Michael was just breathtaking with his huge, brilliant blue eyes and his curly hair.  He was so bright and sweet.  William was absolutely adorable.  He had huge eyes and never stopped smiling.

Thomas was stunning.  He truly did look like the Gerber baby. His hair was so incredibly blonde and stood straight up, like a chia pet!  I could never get it to sit down!  He looked like the rocker, Billy Idol.

Then there was Maddie, my beautiful girl.  She was so pretty, but never dainty.  In most of her earlier pictures, she is covered in dirt and Michael is neat as a pin!   Maddie loved to get dirty!  The two of them were always together, best pals.   They always had each other and were very close growing up. 

I didn't leave for my getaway until Wed.  It was raining and stormy on Tuesday and I didn't want to be in a strange house by myself in that weather.  To be honest, I was toying with the idea of just staying home in my own empty house.  I felt more connected to my feelings at home and could distract myself when needed.  I decided to go, if for no other reason, just a nice change of scenery for a day or two. So, I brought Hope to the kennel and took off around noon with Maddie's pink prayer shawl on the passenger seat next to me. 

The house was beautiful.  When I got there, I unloaded the car, sat out back and of course, cried.  I thought to myself, "OK, now what?"  I've always known that I am not someone who likes to be alone, but this trip solidified that for me.  I would much rather be with family and friends than be alone.

I took a drive and went into a kite store to see if I could find something for the boys.  The woman behind the counter, was an older woman, and she complimented my necklace. I was wearing the one of Maddie's smiling face.  I told her about Maddie and she started to cry.  We talked for a bit.  Her name was Marion. She too had lost a child and stood up and asked if she could give me a hug.  She was very sweet and gave me her phone #. She was hoping I would call and get together to meet her family.  I felt badly about not calling her, but I was really trying to stay focused on my own issues that night.  I may call her one day.  I ran out to my car to get a set of Maddie's card for her and then went back to the house.

I was scared sleeping there by myself.  Of course, I had to watch a scary show before bed.  I ended up sleeping on the couch, with all the lights and the tv on!

The next day, I did some shopping, watched tv, sat out back, and sat on the beach for a bit.  I didn't get to ride my bike, other than a quick ride around the corner.  I was too afraid I'd get lost.  It was a long day.  I just felt very alone and missed the boys terribly.  I didn't want to be alone, crying.  Maybe the distraction of my boys is a blessing and it's too soon to be all alone with so many painful thoughts.

I sat on the beach and read Maddie's journal.  I have kept a journal for all of my kids, along with their own photo albums.  I am so glad I did that because there were so many things in Maddie's journal that I had written, that I would've forgotten.  I was able to read about her from the minute she was born.  Everything she did, who she was, how I felt, everything.  I sat and cried and laughed.  Maddie was so much more than the past two and a half years.  When I think of her, my brain automatically goes to when she was sick.  It was so good to reflect back on the times when she wasn't.  When she was healthy and strong and happy. 

That night, my friend, Amy, came down to stay with me.  I was so glad to see a friend, to have someone to talk with, bounce thoughts off of, laugh and cry with.  We went out and had a really fun night.  We stayed up way too late but I was so happy she was there.  I slept like a rock, until Amy had to get up at 5am to head back home to go to work.  I couldn't really get back to sleep after that.  So, I packed up and finally headed back home around 12.

On the way home, I stopped in at the Monument store, to thank John for the amazing job he did on Maddie's headstone.  I had not been able to do that up until then.  I knew I would get too emotional.  I gave him a hug and a set of Maddie's cards.  He is such a sweet man, who has such heartache himself, with the loss of his wife.

Home.  No place like home. Wait a minute, should I get Hope now that I'm home a day early?  Hmmm...no.  I spent one last day of solitude in my own home.  I unpacked and rode my bike down to sit with Maddie.  I talked to her about my trip, even though she was with me and already knew.  I came home and went into her bedroom and let out one last good cry before the boys came home. 

I don't know if my trip did a whole lot for me.  I don't really know what I thought it would do.  I do know it was very hard and painful to be all alone, despite the fact that I truly did need a break.  I was able to let out a lot of suppressed crying while being alone at home and away, and as painful as that was, it was needed.  I certainly didn't come home with any miracle fix or plan, and I know I will never stop crying, but missing the boys did help me replenish my "tolerance well."

Ernie and the boys had a great time.  They did so many fun things - Story Land, Whale's Tales, mountain hiking, swimming...They were so dirty but so cute when they got home!  William could hardly wait for the truck to stop before he jumped out, ran around the trailer and into my arms!  Thomas was next.  Another big jump into my arms with a hug and kiss.  Michael had a "cooler" approach.  He slowly walked over.  I put my arms out and said, "Come on Baby! Jump!  I got ya!"  He didn't go for it - probably a good thing!  But he did give me a great big hug.  Then I offered Ernie my arms.  He didn't go for the jump either - phew!  I missed my boys and I was so glad they were home, safe and sound.

Monday -- July 6th

Today I was a hero in the eyes of my boys!

I went out on a bike ride and when I got home, William and Thomas met me in the driveway to tell me how upset they were that the ice cream truck came by and stopped for the neighbors.  Ernie wouldn't let them go to the truck because he felt they had already eaten too much junk for the day.  Bummer...

So, I sat down in a chair out back, shut my eyes for a second, to enjoy the sun on my face, and heard the ice cream truck song playing!  Ernie had left to run some errands and I sprang into action.  No, I don't normally go against what Ernie tells them, but come on, it was the ice cream truck for Goodness sakes!  The first time of the summer!

William and Thomas and I stood at the end of the driveway and screamed for the truck as he started to come towards us.  Michael stayed inside, insisting that he didn't want anything.  Then, the trucked banged a U Turn and left!  He didn't hear us!  Well, Ernie had taken my car and his truck was still hooked up to the trailer, so I told the boys to wait at the other end of the driveway and told then I would find the ice cream truck and bring it to them.  I hopped on my bike a sped off like a maniac!  After turning down a few streets, I spotted him, just leaving a stop and chased him like a crazy person.  The little girl on board spotted me and told him to stop.  I caught up and asked him to please go back to our address.  He wasn't sure where it was, so he followed me home!  Yep, there I was, leading the ice cream truck home!

If you could've seen the faces on the boys when I turned the corner on my bike, with the truck following me, playing it's music... it was so awesome!  I don't know who was more excited, me or them!  We high fived each other as I pulled into the driveway.  We all placed our orders and of course, Michael came out to indulge in the ice cream we had picked for him.

I thought our secret was safe, until Ernie came home and found evidence -  the ice cream truck business card on the counter.  That's ok, he thought it was a great story!

Sunday -- July 5th

Yesterday we were supposed to do so many things.  After Friday night, we were all drained and the boys just wanted to hang home. Ernie didn't get home until around midnight and I was pooped.  I felt badly about not keeping our commitments, but hoped everyone would understand. 

In the afternoon, Jeanne and her family came over and they ended up staying for the day.  It was nice.  We just hung out, the kids swam a little bit next door and we went down to the neighbors for about an hour.   I rode my bike down to visit with Maddie and hang her red, white, and blue balloons.  I came home and we all signed an extra big balloon and sent it up to her.

Later in the day, I took Michael and William up to my friend, Stephanie's, for a quick hello and they were kind enough to give the boys a quick tubing ride on their boat.  It was a beautiful day on the lake.  When we got back, Ernie lit off a few fireworks that were given to us and as he did that, Jeanne, Michael, William and I, sat out on Maddie's roof and watched.  That was one of her favorite things to do. It's safer than it sounds. When William climbed back into the house, he knocked the butterfly window stained glass ornament Maddie had hung in her window and it broke.  I couldn't say anything, but cried.  You just know there are things that can never be replaced and it's hard.

Around 9pm, I actually went back down to the neighbor's with Michael and William and watched a small arsenal of fireworks.  It was fun.  We have great neighbors.

Ernie spent the night in the camper doing a "sleepover" with Dean, Thomas, and Charlie.  They had lots of fun.  Michael ended up crashing on the couch and I woke up next to William in my bed.  We were all exhausted today.

After cleaning up around the house, I asked Michael to go on a bike ride with me.  It was a beautiful day and we rode down to the center of town.  Michael did great, except for the fact that he was wearing his Crocs and they kept flying off him a few times!  I insisted, as I did from the start, that next time he wear sneakers!

On the ride home, Michael took me on a "short cut."  This meant going through the woods a bit before spilling back out onto the street.  Oh man, I have to say, I was a little nervous about being in the woods.  There's crazy people in this world!  Anyway, we ended up on a street filled with the most gorgeous multi-million dollar homes and one was having an open house.  I asked Michael if he'd stop with me so we could check it out - just for kicks of course!  He said sure, but when we got into the driveway and saw all the Mercedes, BMW's, and a woman weeding the garden, I thought we probably shouldn't go in.  It was pretty obvious we weren't in the market, seeing as we were a dirty, sweaty, mother and son team, dressed in biking clothes and broken Crocs!  So, we came home...to our very cozy, love filled, beautiful home.

Saturday -- July 4th

Ernie left yesterday morning, to go up to NH to drop off our boat.  He sold it to our friend's, Chip and Terri. That was a big deal.  We have a lot of memories on that boat, but at least we know we can always "visit it" if we want to.

Before Ernie left, I went on a bike ride, down to visit Maddie.  When I got there, Lisa, who works in Children's, her husband Bob, and another woman (sorry I forgot her name), all whom are riding on the same PMC team, were there visiting Maddie.  I was so touched to see them.  We all stood and chatted for a while and then Jeanne showed up on her bike!  Just as we were leaving, Pat, my neighbor's Mom, drove in as well.  It was so heartwarming to see so many people still visit with my girl.

Ernie didn't make it back in time for the fireworks last night, so I took the boys by myself.  Our traditional ones had been postponed, so I took them to Walpole, the town where we took them 2 years ago.  I remember that year, we parked in an upper lot and sat on the back of Ernie's truck.  We met a family with two boys that night, who happen to live in our town.  Maddie insisted on sitting with them, in the back of their truck, right next to ours, during that show.  I remember looking at my guys and then looking to my right to watch her, enjoying the show with virtual strangers.  It was so funny, so Maddie. I wonder why she wanted to sit with them instead of us?  Anyway...

So, I took the boys and we brought at least 12 glow sticks.  We parked the car in the same upper lot, opened the hatch and got comfortable.  The boys opened the glow sticks and then we broke out the can of silly string I had been saving.  I let them all shoot off a can the night before since they couldn't wait for the fireworks, but I had saved this one.  We all had to take a turn getting one shot in.  They all laughed and shot each other and then Michael got me good!  I had a head full of hair string!  I couldn't help but laugh, despite the fact that I had just washed and dried my hair before we got there!

Before the show started, William was looking around, observing the crowd, and started giving some glow sticks away.  Then Thomas got in on the action.  They were all left with a few, but William continued to survey the crowd and insisted on giving more away.  I watched him as he ran around, handing out all but one for himself, bringing smiles to all the other kids.  That was so like Maddie and I was proud that he was doing it.

The show started and the boys all hopped up onto the fenced concrete wall.  It was quite a sight to behold... They lined up in birth order, leaving a gap where Maddie would be standing.  I know it was subconscious, but it was heart wrenching.  I grabbed my phone to take a picture because my camera died.  Of course, my phone didn't have any more memory, so I tried to quickly go through the pictures to delete something so I could get this shot.  It all happened so fast and as I was scrolling, I came across the very last photo ever taken of Maddie.  I got a sick feeling in my stomach and quickly shut my phone. I didn't get the shot of the boys.

I desperately tried to get that picture out of my mind.  It's one of her sitting up in her bed, with her oxygen mask on.  She had put on her beautiful Burberry hat that was given to her, and I asked her if I could take her picture to send it to Nancy, the friend who gave it to her.  She didn't want to, but in her true spirit, gave it her best, pained try.  It's a sad picture for me to see.  She was days away from passing, unbeknownst to us, and still trying to smile for everyone else.  I don't know what to do with that picture.  Do I delete it?  It's the last picture of her.   

I tried to make the show fun for the boys.  I didn't cry and I encouraged them to have fun.  William and Thomas actually said they were bored and wanted to run around in the parking lot.  Michael hopped into the hatch and put his IPOD on.  What the?!  Tell me again why we're here?!  I started packing up our chairs before the end of the show and as soon as it was done, we hit the road.

We got home late from the fireworks and the boys were exhausted.  It became a very emotional night.  Thomas started crying about how he missed Ernie and that he didn't get to say good bye.  Then he started to repeat, "I didn't get to say good bye."  I kept trying to tell him that Daddy would be home soon.  Then the crying became about missing Maddie and he kept repeating the part about good bye.  I realized then that his heartache was not about Ernie, but about Maddie and the fact that he felt he never got to say good bye to her.  I talked to him about that until he fell asleep.

William had tucked himself into Maddie's bed at the time Thomas had started crying.  He too, had been crying and telling everyone to get out of Maddie's room and leave him alone.  After Thomas fell asleep, I laid with William.  He told me that he likes to be alone with Maddie in her room because he tells her, "I know you're here with me Maddie" and rolls onto his side and pretends she's under his arm.  As he was telling me this, I asked him to sit up.  On Maddie's pillow, was William's teardrop, in the shape of a heart!  I could NOT believe my eyes.  With all of the tears, only one had left a mark and it was a heart.  I showed William and said, " William, you're right, she is right here with you!"  I yelled for Michael to come in to take a picture on his phone, since my camera and cell phone were of no use!  We have the picture and actually had to order a cable in order to download the picture and post it on the website.  When it arrives, we WILL post it. She was there with William.  She is with all of us.


Wednesday -- July 1st

It was our neighbor Stephanie's birthday today.  The boys and I wanted to surprise her with a cake and balloons, so we went to the grocery store.  While we were there, the woman behind the counter said hello to William and Thomas and asked me if they were twins.  I told her no and then she asked William if he was the oldest.  He said ,"No, my brother Michael is."  Then she said, "Oh, you have two brothers?"  I didn't say anything because I wanted to hear what he would say.  He said, "Yep, I have two brothers and my sister, Maddie, passed away in October."  He looked at me for my reaction.  I smiled and explained to the woman our situation.  She was caught off guard, but she handled it very well.  I was proud of William. I was so happy to hear him include Maddie in his lineup.  I hope he always will.

So, William, Thomas and I brought the cake and balloons over to Stephanie.  We were invited back after dinner to sing Happy Birthday and have some cake. After Stephanie blew out her candles, William got a sneaky grin on his face and said, wait a minute.  He pulled the cake up close to his face and smashed his own face in it!  We all laughed, and I asked him why he did that?!  He said, "Remember the time Maddie did that?"  Then, of course, Thomas had to get his shot and smash his hand into the cake.  OK, enough with the good manners boys...Believe it or not, everyone ate the cake.  


 

Thursday -- July 2nd

The fireworks show in Franklin, where we have gone every year, was scheduled for tonight, but looking at the forecast, I'm guessing it will be postponed.  I can't even believe this weekend is the 4th of July weekend.  When I think about all the firework shows we have been to, I laugh about the year when Michael was about three and Maddie was about a year and a half.  The show started and Michael freaked out!  He hid his face in my chest and was scared to death!  Maddie thought it was great!  So, I had to walk all the way back to the car, at least a mile away, carrying Michael, screaming, with his face buried and his ears covered.  We got to the car and had to sit through the show with the radio on and the windows rolled up.  After the show, Ernie and Maddie made their way back to us and we left.  What a night!  I have such great pictures of the two of them at the start of the show, looking up a the sky.  They're priceless...

Life was so simple then.  You don't think it when you're in it, but when you look back after a difficult, life changing journey, you realize just how sweet things were.  I always cherished the moment and always appreciated what was, but now more than ever, I wish I could go back.  I wish I could go back, even if just for a day.

Maddie didn't come to the fireworks last year.  She didn't feel up to it, so I took the boys and my neighbor, Stephanie, and we met up with Jeanne and her family. I asked Maddie a few times to please come but she stayed home with Ernie.  Way in the back of my mind, I was afraid she wouldn't be with us the following year.  Maybe she'd still be too weak, recovering from her transplant, or maybe, God forbid, she would be gone.  I desperately wanted her to come.  I called home from the field and they said they were having a great time listening from home. 

I have some adorable pictures of the boys from that night and a cute one of me with them (they're on the website pictures from last July).  I remember as I took the pictures or posed with the boys, I thought about how cute they were and how happy I was to see them having fun.  I also remember a wave of anxiety I felt. I thought to myself, "Oh Dear God, this is what it will be like if Maddie doesn't make it."  I only allowed myself that sense of uneasiness for a moment, then distracted myself with the loud booming of the fireworks. 

I have been trying to interject some humor in my latest postings, but it's been hard.  The start of summer, another first, has been much harder than I anticipated.   I thought by having the boys all home with me every day, I would feel comforted and distracted.  I think it's the opposite.  Maddie's not here hanging out on the couch, playing with Hope, sleeping in, entertaining the troops, or fighting with her brothers.  She's not outside playing with her friends or drawing in the driveway. It's a very different summer and it's only just begun.  The boys miss her and really feel her absence and my heart breaks for them.  William and Thomas verbalize it, but Michael is quiet.

Aside from the obvious of missing Maddie, I don't feel like I have the patience or tolerance that I normally would.  The sibling fighting, screaming and yelling has already gotten to me, and the stinky, rain soaked dog is making me nuts!  I just don't have it in me right now, and all of this depressing rain isn't helping.  I'm just burnt out. Absolutely mentally and physically burnt out.  So, I have decided to go away for a few days by myself.  I'm going to borrow a friend's house in the Cape. I'll bring my bike and a journal. 

I just really need some time to decompress.  Time to cry, scream, think, sort everything out, maybe sleep, and not have to worry about pulling myself together for the kids, Ernie, family, or friends.  I just need to sit with it all, undistracted. I'm scared.  I have never been alone, truly alone. This will be a very lonely get away and I know it won't be an easy thing to do, but I know it's something I need to do, so that when I come home, I will hopefully be a little bit stronger for everyone who needs me.  I feel very drained, lost and sad, and need to find myself.  I know I won't find the "old" me, she's gone, but I need to figure out who the "new" me is. I need to figure out how to cope with my loss, with my family's loss.

I heard this somewhere, "When you lose your parents, you're an orphan.  When you lose your spouse, you're a widow or widower, when you lose your child, there is no name for that."  I have thought about this a lot. I guess that's where I'm stuck.  There is no name, just a lot of unbearable heartache.  Maybe when parents who have lost a child get to Heaven, they will be given a name.  We will be given a proper name. 

During the days I'm away, Ernie will take the boys camping.  I truly feel guilty that I'm not going to be with them and I will miss them terribly.  The boys are upset that I'm not going with them, but I had made plans to go away for a while and I have to go through with it, now sooner than later.  I haven't made plans for the dog yet, but I better get on that! 

I wish you all a safe and fun Happy 4th of July weekend with your families and friends!  Cherish the moments and take lots of priceless photos!

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