Sunday -- April 26th

This time last year Maddie and I were getting ready to go to Lourdes.  We left April 30th.  It doesn't seem possible that a year has gone by.  I need to talk to Maddie about our trip.  I want to re-live it. Reminisce.  I want to pull all our pictures out, call our Lourdes friends, organize a reunion barbeque like Maddie and I talked about. I want to say, "Maddie, can you believe it was a year ago when we went to Lourdes?  Don't you wish we were there again?", "Remember when..."  I can't do any of these things.  I don't want to do any of these things without Maddie.  It's our memory together.

On this day last year, I took Maddie shopping at the Wrentham Outlets.  She normally hated to shop, but she was so excited to go that day.  We bought hats together at the Life Is Good store.  I got a baseball hat, that I wear all the time, and she got an adorable Life Is Good floppy rimmed pink/blue reversible floral hat, a Life Is Good canvas bag, and a Life Is Good t-shirt.  She loved them all.  She helped me pick my hat.  I couldn't decide what color or what saying.  I went with the basic tan hat with the "Life Is Good" logo.  The other one was a pale green with "Smile" on the rim.  That was cute too.

Next we went looking for slippers for her.  She wanted UGGS, but talked about how ridiculous it was to buy them when you could get "knock offs" for half the price.  Phew!  Loved her thinking.  So relieved we were on the same page!  So, we found a shoe store and we found her the perfect pair of slippers.  They were warm and fuzzy in the inside and a suede brown on the outside.  They were ankle height.  She loved them.  We got really lucky and got them for dirt cheap.  We called them her "FUGGS," or "Fake UGGS."  It was an unusually warm day for April, like it is today, but she wore them right out of the store, around the outlets for the rest of the day, even though they were really slippers, not boots.  She looked so cute and so happy, wearing her Life Is Good hat and her FUGGS.  Life WAS good.

We had lunch at Friendly's.  She had the mac and cheese and I got an ice cream and coffee.  I remember the exact booth we sat in.  We giggled, held hands, and just had the best shopping trip we had ever had together.

I keep a picture of Maddie and I in Lourdes over my desk.  In the picture, she is sitting on my lap, wearing that floppy hat.  It's one of my favorite my pictures of her.

My mind is all over the place today...

"FUGGS..."  When Maddie was in the ICU, in the end, she was fitted for orthopedic boots, that would keep her muscles aligned, prevent problems, until she could get up and undergo physical therapy.  The boots were blue and medal and went up to her shins.   Maddie couldn't see them.  She was paralyzed and sedated, but I described them to her, with "excitement" in my voice.  I said, "Maddie! Wait 'til you see your new kicks Girl!  You got some blue FUGGS this time baby!  I ordered your next pair in pink. You're going to love these!  You'll start a new trend. Nobody will want UGGS anymore!"

OK, back to Lourdes...

While we were in Lourdes, Maddie would say, What should I pray for?"  I told her she should pray for her health. Pray that she will be healed forever. She should thank God, that He has taken such good care of her.  We hadn't told her yet about what was happening.  I truly think she thought...I don't know exactly what she thought. I know she thought she didn't have cancer anymore, but I know she was always afraid it would come back.  She said if she could have a miracle now, she would ask for her hair back.  She just wanted her hair.  She asked me if I thought she would get her hair back and I told her I believed that one day she would.  She asked me what kind of miracle I was praying for.  I would jokingly tell her I was hoping for a bigger chest!  Hey, you never know what kind of miracles could happen in Lourdes. "I'm going to wake up in the morning and Bam!" She would laugh and then to my horror, tell other people I was praying for "bigger boobs!"

When we were in Lourdes, I went to a parent support group meeting and I remember crying, saying that if we didn't treat Maddie's latest illness (MDS - caused by her chemo and radiation) when we got home, she was given 4-6 months to live.  I didn't want to leave Lourdes. I felt safe there. Like nothing would happen to her while we were there. I just didn't want to go home and face reality. If we could just pretend there was no illness to face when we went home.

I think back to that group meeting and I just can't believe that what I was saying back then, really happened.  It's all over now.  We did treat it, we did try, and it's all over now.  Now I know how it played out.  I didn't know how it would play out as I talked to those other parents that day in Lourdes.  I just knew I was scared. 

I can't keep my thoughts straight today. I'm going to try to jump to happier thoughts...

Yesterday was the kick off for Norfolk Little League Baseball.  Thomas is playing TBall.  So, we all lined up at the elementary school, to march over to the middle school.  I marched with Michael and Thomas and Ernie and William went up ahead to wait for us at the school field.  The parade was led by the Norfolk Fire Trucks.  It was very cute.   Thomas was very proud.  When we got to the baseball field, we all sat on the field, all the teams and coaches.  The head of the league made his announcements and then had a moment of silence for Maddie.  We had no idea they were going to do that. It was so moving and we were so honored that our town would take a moment to pause and honor our little girl.  Thank you Norfolk.  Thank you for including Maddie.  I really wanted her to be there.

As I was sitting in the grass, a tiny little butterfly landed right on my Maddie bracelet.  I turned around to get Ernie's attention and show him.  He thought that was great.  William said, "Wow Mom. That's pretty lucky.  Maddie sent that."  I said, "I know."

Thomas was called up to the mound to throw out a starting pitch.  I was nervous since he hasn't played much ball.  He did great!  Threw it right to the mound.  Then the best part of all...Thomas got to hold the microphone and announce "Play Ball!!"  I was so proud of him.  He kept his team shirt and ball cap on all day.

After the ceremonies, we went over to Maddie's special garden with the kids.  It was a beautiful day and we sat there for a bit.  Someone put a big purple wooden butterfly there.  It's really pretty.  It's always so nice to go down there and find something new that a friend has left for Maddie.  We don't usually know who has left the gifts.  It's just so comforting to know that friends still go and visit her.  Thank you.  I hope that never ends.

William was very sad last night.  He asked if I would sleep in Maddie's bed with him.  I was having a hard night too, so I was glad he asked.  He said he wanted to go in there and let some tears out. As we lay there, I was the one letting the tears out and he was the one comforting me.  I keep telling him it's ok to cry, it helps us heal, and that it might make him feel better after he gets some tears out, but he says, "No, if I cry it will make you sad, and I don't like to see you sad." I try to tell him we can be sad together.  It has always amazed me that my boys want to protect me even through their own heartbreak.  I truly wish they would let me comfort them, and let their own tears flow.  I need them to try to start to heal, but they can't do that until they let themselves grieve. 

Jumping to another thought...

Michelle Knowles graduated from college in Florida on Friday.  Congrats Michelle!  We couldn't be there, but I have an amazing story.  Theresa, Michelle's Mom, flew down to Florida and sat next to a little boy who was flying solo.  At the end of the flight, the steward came over to escort him off the plane and Theresa noticed he was wearing a Maddie bracelet!  She asked how he got one and he said a friend gave it to him in Disney World!  Isn't that crazy?!  Maddie must have given one to someone when we were there last year, or maybe it was someone else from anywhere who gave it to him.  We don't know. They're everywhere (Maddie was always handing them out, or having me take mine off my wrist and give it up!).  Theresa and I agreed that it was Maddie's way of letting her know that she was there and that she flew down with her to go to Michelle's graduation.  She was going to be there with Michelle, just as Michelle wanted.  I think it's so amazing and wonderful, and truly believe that is no coincidence!

It's another beautiful day.  Think I'll spray paint the porch rocking chairs and go for a training bike ride later    today.  School break comes to an end today.  I love you boys, but I just want to say -  Yahoo!!!


 

Wednesday -- April 22nd

What are the 7 stages of grief? I can tell you what they are because I googled "stages of grief." Wanted to see where I fall at this point. Here they are:

1. Shock and Denial
2. Pain and Guilt
3. Anger and Bargaining
4. Depression, Reflection, Loneliness
5. The Upward Turn
6. Reconstruction and Working Through
7. Acceptance and Hope

Trying to figure out where I am. I wanted to check myself and see if what I’m feeling is "normal." I seem to be hung up in several of the stages at the same time. It hasn’t been a smooth transition from one to the other, like some sort of check list. I feel like the stages are all intertwining. It’s funny, I have always kept "to do lists" and "check lists." I was always very organized and "in control." Not anymore. I have been knocked to my knees, and feel very disconnected from the old me. I have no control right now, and I’m hoping by understanding the steps of grieving, I will find myself again, be able to get off my knees. I’ll never be the same "me", but I’m working on a new " me."

#1 Shock and DenialAbsolutely. Still feeling both a lot of times. Think I’m slowly coming out of that. Definitely through the wake, funeral, weeks following, I was in complete shock and denial. At times, my brain is still in denial, but at the same time, the pain of reality so deep.

#2 Pain and Guilt.You feel the pain, even at stage #1, with the shock and denial, but as you transition into #2, the pain becomes even more intense and raw, so unbearable. The guilt…yes, I question everything I did and didn’t do. The "what if’s," "the should’ves," " could’ves." The guilt can eat you up. Then you have to tell yourself you did the best you could do and force yourself to move on, away from those thoughts. I’m trying to get past this stage, but it’s very difficult.

#3 Anger and Bargaining.I do know that I didn’t linger long, if at all, on #3, and I am so grateful for that. I don’t know why, but anger is not something that has been in the forefront for me. It may come in time and when and if it does - look out… but I pray it never does. I never questioned, "Why me?," "Why Maddie?" On the contrary, I thank God for letting me be the one. The one who got to be Maddie’s Mom.

When asked, "Why Maddie and not some scumbag on the streets, some loser in prison?" I think, because nobody would have learned the lessons we all learned if it was some "scumbag." It was Maddie for a reason. She was so loved and cherished, so cared for. She was so good and deserving. She was a powerful tool. People cared about Maddie and what happened to her. The effect her illness and passing had, is why it was her. Her lessons so huge and life changing for so many. It was her because it was supposed to be her. It was always going to be her. Is it fair? No. But does the "why her?" make sense? Yes.

Does it make it any easier? No.

People have asked me, "Are you mad at God?" , "You must be so angry!" God didn’t give Maddie cancer. I’m not angry with God. God could’ve taken Maddie in August ’06. That was her diagnosis. He let her stay a little longer. How could I be angry? I am so grateful for that gift. Maddie would not want me to be angry with God.

The one issue I do struggle with, as far as God is concerned, is the suffering Maddie endured. That’s between me and God, and I hope I get to a place where, if I trust in God’s plan, maybe this struggle within will subside? I do know that my faith, God, and the Blessed Mother, carried us all through our terrible struggle. Without our faith, we would have had no hope, just utter despair throughout our fight. I honestly don’t know how people go through a hardship or life without faith. Without faith, there is no hope. 

I’m not angry with the doctors. They did the very best they could to save Maddie, a child they came to love so very much. They so desperately wanted to fix her. They, along with God, helped us have an extra 2 ½ years with her.

Bargaining? No. God knows my heart. There is no bargaining. Sure I tried to bargain during Maddie’s fight. Bargained anything and everything for her recovery, my own life for hers, anything. I always told Maddie that if I could, I would take it away from her and take it for me. She would always say she didn’t want that to happen… After Maddie passed, I didn’t try again. There was no more bargaining. God didn’t want me or any other bargains. God’s will has been done and nothing can change that.

#4 Depression, Reflection, Loneliness...yeh, I think I’m shifting into this stage. I read somewhere that this step occurs around the 6 month mark. Just when your friends think you should be feeling "better," you seem to take one step forward and 3 steps back. I’m afraid I’ll be stuck in this stage for quite a while. I am depressed. I feel so tired, lethargic, unmotivated, frustrated, lonely, and so incredibly sad. I have been doing a lot of reflecting. This is not a fun stage to be entering, but then again, none of them are. I am still teetering in and out of the other stages, especially #2, but this stage is definitely creeping in.

I found this saying on a bookmark that I’d like to share. I think it will help people understand what someone grieving truly goes through:

AFTER MY LOSS

I need to talk about my loss.
I may often need to tell you what happened – or to ask you why it happened.
Each time I discuss my loss, I am helping myself face the reality of the death of my loved one.
I need to know that you care about me. I need to feel your touch, your hugs. I need you to just be with me. And I need to be with you.
I need to know you believe in me and in my ability to get through my grief in my own way. And in my own time.
Please don’t judge me now – or think that I’m behaving strangely. Remember I’m grieving.
I may even be in shock. I may feel afraid. I may feel deep rage. I may even feel guilty. But above all, I hurt.
I’m experiencing a pain unlike any I’ve ever felt before.
Don’t worry if you think I’m getting better and then suddenly I seem to slip backward.
Grief makes me behave this way at times.
And please don’t tell me you "know how I feel," or that it’s time for me to get on with my life. I am probably already saying this to myself.
What I need now is time to grieve and to recover.
Most of all, thank you for being my friend.
Thank you for your patience.
Thank you for caring.
Thank you for helping, for understanding.
Thank you for praying for me.
And remember, in the days or years ahead, after you suffer a loss - when you need me as I have needed you - I will understand.
And then I will come and be with you.

I took a Death and Dying class in college and remember learning about the 7 stages of grief. I clearly remember thinking about how painful it must be to lose someone you love, and how hard it would be to go through these stages. Now I’m here, going through the stages. I don’t know how long this "process" will take or if you ever fully finish the stages of grief. I don’t know when I’ll be able to fully leave stages 1-4 behind and transition into stages 5,6, and 7. One thing I do know now, is that everything I’m feeling and going through is "normal." Just needed to check myself…

Sunday -- April 19th

We had a quiet weekend.  Not much to write about.

Went down the street Friday night to hang out for a bit. We really have great neighbors. 

On Saturday afternoon, I took William and Thomas to a birthday party.  They had a good time. Ernie and Michael went to the mall to see about getting Michael’s IPOD fixed.  While they were there, they ran into Kevin, The Hole In The Wall Gang hospital volunteer, who taught Maddie how to paint,  and became such a dear friend to her and to Ernie and myself.  Ernie called my cell and I got to talk with Kevin for a few minutes.  It was so good to hear his voice. He, along with Jared, from THITWG, were so incredibly special and uplifting for Maddie.  That call reminded me that I forgot to write about Maddie’s paintings being framed.  We had all of her beautiful artwork professionally matted and framed by a very sweet woman right in our town, Lisa Scibilia.  She did the most amazing job with them and we could not be more pleased.  We had them finished right before Maddie’s birthday and we were Lisa’s very last client.  She sold her business.  Thank you again, Lisa.  They look amazing hanging in our home office. 

Sunday morning I went for a bike ride with my friend, Amy Palmer, who is doing the PMC with me.  We rode about 11 miles.  We were both pretty impressed with each other and ourselves.  When I got really tired, especially going up hills, I glanced at my tattoo and was able to push myself.  I love my tattoo.  I look at it all the time. It’s a constant motivator, among other things, for me.  When we finished our ride I reminded Amy that on the day of the PMC we have to do that 8 times!  Lost our smiles for a second, but then both started cracking up. Nervous laughter maybe?  We’ll do fine.  I got the hang of my gears on the bike, so that’s good.

I was especially motivated to ride, in the tougher gears today, after William and Thomas stood behind me at the sink this morning, as I was trying to make the coffee, and William jiggled my butt.  He said, “Mom!  You’re gettin’ old lady!  Your butt’s all jiggly!  Thomas watch when I hit Mom’s butt!”  They both thought that was very funny.  I couldn’t decide whether to laugh or crack ‘em over the head with the coffee pot.  Of course, I laughed. OK, I get it!  Time to firm up, but at the same time, I’m trying to keep in mind that this is the opinion of a 5 and 7 year old!  All I wanted was a cup of coffee.  Not a butt fat index test!  Old and jiggly are relative terms right? On the flip side, last night, the two of them told me I was “hot!”  I don’t know where they get it from…

Ernie spent his day with the boys building a little pond on the side of the house, next to Maddie’s butterfly flower garden.  It’s a lot of work and he wasn’t able to finish it all today, but it will look great when it’s all done. 

We have so much landscaping to catch up on.  We’ve kind of let the yard and exterior of the house go because we had no choice over the past couple of years.  We’ve done the best we could, but then our well pump broke on Thanksgiving and we had to tie into town water.  Our front yard had to be torn up in order to put the pipes in.  The kids’ friends always ask what happened to our front yard.  I like to tell them we’re building a pool in the front yard, or that we just got tired of seeing pretty green grass and thought we’d try out the mud look for while.  We may even purchase some pigs to go along with it. Yup…

Michael drove the tractor around, moving the fire wood from the driveway and re-stacking it in the back yard.  He worked for 3 ½ hours, earning some allowance.  He’s psyched.  I don’t even know how to drive that tractor.  I’ll have to take it out for a spin this week.  I should probably wear a helmet…

William made a time capsule today and buried it next to the pond.  Inside it, he put a picture of Maddie, one of her lucky rocks, a heart shaped rock he found, and a note he wrote that said, “I love you Maddie.”  It was very sweet.  The kids used to do that a lot the past two summers.   There are a few hidden in  our back yard and some even hidden somewhere on the new development road behind our house.  I’m hoping to find the one Maddie hid before she went into the hospital.

What’s with the bugs?!  These teeny tiny gnats are horrible!  They’re around in swarms.  The boys all had to run around outside with Ernie today wearing bug nets over their faces.  When I go to the school to pick Thomas up, they all circle the car, trapping you inside.  Really, they’re bad right now.  Love when you try to talk with someone in the parking lot and you get a gnat in the nostril!

Took William to the grocery store with me tonight.  He’s so much fun to be with.  It’s fun to get some one on one time with each of them. They’re all so different and behave so differently when there’s no competition or rivalry.  William is very funny and affectionate and still at the age where he’s not embarrassed to hold my hand and say “I love you” in public.  He always tells me how much he loves “me and you time.”  He’s so sweet.  They all are.

Been keeping up with Hope’s medication.  I tried a new trick someone told me about… only two days ago.  I put the pills in a glob of peanut butter on a spoon and she licks them right off.  No more shoving my hand into her mouth.  Why didn’t anyone mention this sooner?  Is there a conspiracy  going on?

As I’m writing this, William and Thomas came into the office and cut out paper hearts.  Then they asked me to tape them to their backs and fold them, so they look like Angel wings.  They said it reminds them of Maddie and her Angel wings.

TBall practice starts this week.  Thomas will be playing with his pals.  He’s very excited.  Saturday is the season kick off parade and Thomas has been invited to throw out a starting pitch!  I need to get him out in the yard this week and practice!

I hope you all had a nice weekend and have some fun plans for the school break this week. I haven’t made any plans yet.  I’ll take it one day at a time. I find it easier that way lately.  I can’t seem to make, and stick to, long term plans right now.  Ernie can’t get any time off, so it’ll be a long week, but hopefully it will be filled with some warm sunshine, some fun, and less “gnats in the gnostrils!”

Thursday -- April 16th

Maddie has been gone 6 months today.  Will I always have to re-live her passing on the 16th of every month?  I don’t want to.  I try not to, it just happens.  It’s a very sad day.  Michael and William are home from school today.  They’re sad today too.  I didn’t even tell them what day it is, but they’re just extra down today.  I’m sure Michael knows the date.  He knows exactly how many days that Maddie’s been gone.

When you think about 6 months, it sounds like such a long time.  It feels like she’s been gone so much longer, but at the same time it feels like just yesterday.

There are days when I just sit here and think, “What happened?,” “What the hell happened?,” “ Did that really happen?,” “How did that happen?” I can’t believe it…

I don’t even know what the point of writing is for me today.  My counselor, yes, I  see one, says she thinks the writing for me is therapeutic, but also my way of processing.   Never thought of that until she said that.  I guess by writing, I can think out loud, try to process everything, try to make sense of things.

I’ve never written about the  moments of Maddie’s passing, and I don’t know that I ever will.    I just pray that we will not have to re-live it every month on the 16th.  I’ve only recently been able to erase it from my every day thoughts.   I need to forget that day.  We all do.  Myself, Ernie, and Michael.  We were there with her.  That was a day nobody should have to go through, and then have to remember for the rest of their life.  We need to remember Maddie smiling and laughing, playing in the yard, catching butterflies and frogs, all those good thoughts.  I long for the day when our hearts and minds can leave that hospital room forever. 

Maddie’s fish is dying.  I tried to “revive” it all day yesterday.  Changed the water, tried to feed it.  It’s a fish, but it’s Maddie’s fish, named Kristen.  I wrote about it in the last entry.  It sounds so stupid to be so upset about a fish, but it’s not just any fish.  Michael’s having a tough time over it, and again, not because it’s just a dying fish. Watching it struggle has stirred up painful memories and emotions and it is really hard. It’s not really about the fish. We don’t want to watch it suffer, but at the same time, we don’t want it to die…

OK, I know this entry is a little more downtrodden than usual, but at the same time, real.  Let me interject a little humor now …

When I took William down to Maddie’s site to hang balloons, we walked around to look at other “special gardens.”

William stopped to read a headstone and called out to me, “Mom, come read this!”  I walked over to him and listened to him laughing hysterically, read aloud, “Do not stand at my grave and cry, for I am not there, I did not die.”  Then he said, “Mom, that’s so funny!  Somebody played a joke and put a headstone here and they’re not really dead!”  Although I know the reading and think it’s beautiful, William continued on, “Mom, why would someone do that?  Oh, man that’s so funny!”  I tried to explain, but had to wait until he was finished with his awesome chuckle…

 

Monday -- April 13th

It was a busy week leading into Easter.  Lots of appointments and things going on.  One fun break was taking another friend, Heather, for her butterfly tattoo Tuesday night!  It came out great and she loves it!  I love her story behind her getting hers.  Maddie really touched Heather and they had a fun friendship.  She has ridden the PMC two years for Maddie, and last year at the water stop Maddie was trying to get one of the “Cancer Sucks” tattoos to stick to Heather’s arm, using the water from her water bottle.  It kept coming off, so Heather got her butterfly tattoo in the spot where Maddie had intended for her to have one.  At that same stop, Maddie had given Heather her butterfly necklace to borrow for good luck.  So, it’s perfect.

I haven’t shared the names or stories of the others who have gotten the tattoos yet. I’ll ask them if it’s ok, but once I post the pictures, it’ll be clear.

Friday was nice.  It was good for the kids to get outside. Thomas had been practicing his two wheeler bike without training wheels.  He actually learned in the Fall, except for the turning or stopping. Minor details. We had been practicing in the back yard but had to quit for the Winter. On Friday he was ready for an official street ride.  So, I took him and William for a ride across the street on the culdesac.  It was great until Thomas wiped out!  It was a pretty hard fall, so he was done for the day.  I walked him home and went back out with William around the neighborhoods. William is a maniac on the bike! He has mastered the whole slam on the breaks and skid to a stop!  As we were riding, William said, “Mom I really miss Maddie.” I said, “I know me too.”  Then he said, “But she’s riding right next to us.”

Michael wanted to go off on his own a few times to bike. He got quite a few rides in for the day.

Ernie spent the day rebuilding the tree fort ladder.  At one point, William pitched in to help.  He was trying to earn money to buy himself a drum set.  Didn’t happen.  We’ll stall for a while longer on that one.

My parents arrived from Connecticut for the weekend around 2pm on Friday.    It was great that we could sit outside on the porch for a bit before the temperature dropped.  Jeanne came over with the kids around 4 and stayed for dinner.  She and Dean headed to CT. to visit her in laws for the weekend.

Michael had a friend over Saturday afternoon to work on a school report.  Later that night, it was that same friend’s birthday party.  So, Michael was out Sat. night, at dinner and a movie.  He had a really good time. 

Hardly Spring weather on Easter Sunday.  For the first time, the Easter Bunny decided to hide the eggs around the house instead of outside.  Hiding the eggs outside would’ve been very hard for me. I didn’t want to watch the kids run around the yard this year.  I would hide eggs, 4 chocolate bunnies and 4 little gifts around the yard.  Everything in 4’s not 3’s.  I still picture the 4 kids running around the backyard, finding it all.  They would run out in their pj’s.  Last Easter feels like it was just yesterday.  Maddie and Michael were always so good about helping the little guys find eggs. 

Michael had decided he was done taking part in the egg hunt, so he helped me fill the eggs and hide them.  It was strange now that he’s on the “grown up” side.  Obviously he’s known the truth for a few years, but you know how kids fake their knowledge in hopes for more goodies.  It was good to have a helper!  Easter morning, Michael watched William and Thomas gather the goods.  They had fun.

I remember trying to put a chocolate bunny next to Maddie’s bed last year and she woke up.  I hit the deck so fast, but then she sat up and asked me what I was doing!  You think she could just go along with it and pretend to sleep?!  No, she was going to watch me squirm.  I think I made up some stupid story about looking for my hair clip under her bed! I don’t know.  I told her to go to sleep or the “Easter Bunny wouldn’t come.”  Then I turned to walk out, stepping all over the jelly beans and peeps thrown around her rug. Duh!  Looks like the Bunny already came…Bet she had herself a good chuckle at my expense!

At least I don’t have to wait until Michael falls asleep anymore.  It never happens.  The kid stays awake until after midnight. He was never a good sleeper.  I used to have to stay up until 1am to make sure he was out, before I could even hide anything.  Then they all get up at the crack of dawn.  Makes for a very cranky Easter Bunny.

Easter was especially hard for us.  I don’t know if it’s because of the spiritual aspect of Easter, the passing of time without Maddie, or just everything.  We tried to go to church.  We got the boys all dressed and got to church on time, but once we sat down in the church, Ernie lost it and I was feeling the same.  It’s the church where Maddie was baptized, and the church where we said good bye to her.  We just couldn’t be there.  We left before mass started and went down to her special garden with the boys.  Ernie and I had also gone down separately in the early morning. When I went alone in the morning, I couldn’t get there fast enough.  My heart was pounding as if I was going to get to see Maddie for Easter.  I swear, you think crazy thoughts like, there’s going to be an Easter miracle and Maddie will be sitting there, or something miraculous will show itself.  I don’t know…still praying, still hoping, still wishing.  That part of you that can’t let go.

Now when we went down together, there were families all visiting their loved ones, flowers being placed.  My parents were there.  They had just come from their church service.  This was the first time since Maddie passed that we were all there as a family.  The boys don’t generally like to go. It was very hard. I stood there and thought about Maddie’s different Easter outfits throughout the years, about her running around finding the eggs, about her sharing laughs and excitement with the boys.  I tried to picture her standing there with me, with all of us, smiling, saying, “I’m right here with you.  Happy Easter!”

Maddie’s site looked beautiful. Friends had left notes, an Easter basket, Easter eggs filled with candy, painted eggs with messages, and flowers.  It was so clear that Maddie was thought of by so many on Easter.  Thank you.

The Easter bunny had left a new kite for each of the boys, so later in the day I took them, along with our babysitter/friend Kate, who was home from college, over to a big field and we flew the kites.  It was awesome!  It took a while to get the hang of it, but once we did, it was great.

My parents left around 2pm and the rest of the afternoon was quiet.  We all settled in and just hung out.  I made one last run down to Maddie’s site to bring home the Easter basket that someone had left.  I had left it there for the day for everyone to enjoy seeing.  On my way home, I turned into the church parking lot and checked the church door the see if it was locked.  It was open, so I went in.  It was around 5pm. I sat in the church by myself and cried like a baby.  I knelt at the statue of the Blessed Mother and prayed.  I know she knows my pain and I prayed to her. I need her help, her guidance.  Maddie learned the Hail Mary after our trip to Lourdes.  She was so proud.  I said the Hail Mary and went home.

I’m very proud of my boys.  They did a great job getting through Easter, even with heavy hearts.  When I was putting Thomas to bed last night, he went into Maddie’s room and just stood there, looking around.  I asked him what he was doing.  He said he was looking for something of Maddie’s that “ she doesn’t want anymore,” that he could have to remember her with.  He chose a beautiful guardian angel pin.  She’s holding a heart.  He had me pin it onto his shirt.  Then William came in and asked for one too.  He found the last one in her room.  I pinned it onto his shirt and put them to bed.  Maddie is their guardian angel.

I hope everyone had a Happy Easter.  Just for the record…

The Easter Bunny DID bring something for Hope!  That’s right.  That is one sweet, loving, kind, accepting, awesome Easter Bunny!

Tuesday -- April 7th

Everything I do and everywhere I go I’m reminded of Maddie.

I dropped Thomas at school today and some days I can handle seeing all the little faces and sometimes I can’t.  I don’t know what makes some days more difficult than others.

Outside of the school parking lot is the advertisement sign for photographer Lisa Hull, coming to do her annual Mother’s Day photos.  I can’t believe this time last year I was so excited when I signed up for a professional photo of my kids.  I had never had one done.  The kids all looked so beautiful/handsome in their coordinating outfits.  Maddie had skinned her chin a day or two before the photo.  It was supposed to be air brushed out but never was. That’s ok.  I am so grateful I have that photo and the memories from that day. After the professional shoot, I let the kids play in the playground for a bit.  It had been so long since all four played together in the HOD play area.  We were the only ones in there, and I got some more great pictures from that day. I drove home today shaking my head and crying.  I just really can’t believe that was not even a year ago.

Went from the school to BJ’s.  Certain foods remind me of Maddie. What she would ask me to buy, what she didn’t like.  How she hung onto the wagon or ran ahead with her giggle.  She loved to grab a plain bagel out of the container and munch on it throughout the store.  Then she’d sneak a treat for Hope into the wagon as we walked down the dog food aisle.  Today I thought about when Maddie was first diagnosed and could barely walk.  She was in so much pain and I would have to put her into the wagon to go shopping…

I hate shopping.  I used to love it.  Now I see all the girl things.  The outfits I think would look so cute on Maddie, the decorations I’d love to buy for her bedroom, the Moms and daughters out shopping.  I just hate it.

Stopped into a little gift shop to browse and pass some time before the next store opened.  The first thing I saw was the Webkinz display.  Dear God.  Maddie was the biggest fan of the Webkinz when they came out.  She had a collection like no other.  Of course, we’d have to buy one every time we went to the hospital.  She had to get rid of most of her stuffed animals before going into transplant because of the germs stuffed animals hold.  Her room was going to have to be very sterile when she came home.  She kept a few select Webkinz and other stuffed friends.  I washed them and put them in a basket in her closet.  They’re still there. I can’t get rid of them.  They’re hers.

Next I had to go to Game Stop to pick up both William’s birthday gift and Michael’s overdue Christmas gift that just came in.  It’s the new Nintendo DSi.  The boys and I went in last week with a bag full of their old game cartridges and players for trade in.  We acquired enough store credit to pay for the two new DSi’s! 

Maddie would’ve loved  the new DSi.  I thought about how weird it is that she’ll never know any of these new things going forward. She’ll never be a part of the changing technology.  She loved her pink DS.  She took it everywhere with her, in a little floral case.  She took such good care of it.  She was so good at the games.  Her pink DS is in her bedroom, just sitting there, in a basket on her dresser.  I could’ve traded the player and all of her games in as well, but I can’t.  I can’t get rid of it.  It’s hers. Even though she’ll never use it again, it’s hers.

Just like her toothbrush.  It’s still here.  It’s sitting in the bathroom drawer, in the little pink toothbrush case. Her toothbrush always had to be kept separate from the others to protect it from germs. I can’t get myself to throw it away. She’ll never use it again, but it’s hers.

Everything.  Everything of hers is still here.  10 ½ years of life, all consolidated into her beautiful bedroom.  I sit in her room and touch every little thing.  Every little knick knack, every piece of jewelry, every picture, her hair piece, her pink fuzzy robe hanging on her hook, her hats. Her collections, her papers, her school projects, the clay dolphin she made(I had to re-glue the fin about 5 times), her electric keyboard, her cd player, her little guitar propped up in the corner.  All of these things she held so dear to her heart.  What a beautiful room.  It’s meant to have a little girl in it.  Maddie is supposed to be in her room.  It’s her room.  It just sits empty of life, except for Maddie’s goldfish that she named Kristen, after our next door neighbor.  I go in and feed that fish every day.  It’s the last piece of life in her room.  I told her I would take care of it. I have to, it’s hers.

I just can’t bring myself to look through her closet or her drawers.  That is just too painful right now. I can picture her in every outfit and each piece of clothing holds so many memories. Some people think that would bring comfort, to see her clothes.  Not for me, not right now.  Just the sound of her dresser drawer opening makes me sad.  The medal drawer pulls make a certain clank sound when you let them go.  Even her closet door has a certain sound when you open and close it.  I can still hear the sounds of  her scrambling through her dresser and closet to get dressed.  Her shoes, all in a box.  Shoes are so hard to look at.  Ernie always says that’s the hardest for him.  The shoes. Think of all the living we do in our shoes.  All the running around.  All the life and activity.

I stand and look outside Maddie’s windows at least once a day.  I run my finger over the window paint that spells out “Have Hope.”  I’m so glad she wrote that and left it there.

As I lay  on Maddie’s bed and look around her room, I just think about my little girl who acquired these cute little things that meant something special to her.  Then I smile at the fact that she would give it to you if you asked for it.  I think about the fact that all of the things in her room are pieces from her life.  Pieces that held memories for her, and now hold memories of her. Then I think about how much bigger Maddie’s life was than what’s in that room.  Her life went beyond things, beyond “stuff,”  beyond her bedroom. 

All of our lives should go beyond the house, beyond all of the stuff.  It doesn’t matter what’s in your house.  You can’t take it with you when you leave here, and nobody else will see it or care.  They will remember you though.  For who you are, what you give of yourself, and for the friendship, lessons, and love you’ve given during your lifetime.  That’s what I’m reminded of when I look at Maddie’s stuff.  As much as she loved her things, she loved people and animals and life even more.  She really didn’t care about “stuff.”

I’ve given only a few of Maddie’s things away, sentimental things, that I know were special between Maddie and the recipient, not because I want to, but because I feel that Maddie would want me to.  It has been really hard, but I feel like Maddie has guided me through that.  She has helped me give those special things to the right people, and will continue to help me figure out what to do next.

I think about when I pass away, how people will be going through my things, every nook and cranny.  Nothing left sacred, hidden or untouched.  I know a lot of my things will hold memories of me for my loved ones, but I truly hope that beyond the stuff, I will be remembered for what’s really important.  Just another lesson Maddie has taught me. 

 

Sunday -- April 5th

William had a great birthday. He was so excited when I came into school with his cupcakes. Before we handed them out, I winked at him and then told all the kids they were zucchini cupcakes with cream cheese frosting. "Right William?" "Right"…silence and sad faces. I asked if anyone still wanted one and only one lone hand slowly went up…then we let them in on our joke. Oh, the look of relief!

William had a nice party at home after school. The kids all had fun playing the "traditional games" and it was so good to watch William laugh and have fun, forgetting his sorrows for the afternoon.

Turned into a really long night. After the party was over, friends stopped by and stayed into the evening. Of course, the night wouldn’t be complete with some late night dancing again. So, we cranked up the music and had a blast, until I thought I’d try a fancy new move with one of the girls. Well, I slipped and fell backwards, and split the back of my head open on the cabinet! Can you believe it?! Party over! Ernie had to drive me into Norwood Hospital, as I held the Sponge Bob ice block on my head with a washcloth! My neighbor stayed with the boys until we got home at 3am. I got three staples put into my head and I’ll get them out on Friday. I actually can’t believe I’m telling this story! Oh well, I guess from now on I’ll put a helmet on before we start the dancing!

Saturday morning Ernie and I had to go over to finalize/proof read Maddie’s headstone drawings. When I saw it all laid out on paper, life size, it was very hard. It made everything that much more real. It’s going to be a very special headstone, complete with carved butterflies, Maddie’s picture, her written prayer, and her signature. I know Maddie would be so pleased with her special stone, and it should be ready for Memorial Day. It has really been upsetting to the boys that she doesn’t have one yet, so they’re anxious for it to get done. It takes a while and took a while for me to get myself to design and order it. It’s just such a final step.

Saturday afternoon something very exciting happened – William’s tooth fell out! Actually, Michael poked it out when they were playing "criminals." William was SO excited! He immediately put the tooth under his pillow and kept checking back to see if the Tooth Fairy came. He finally decided he wanted to go to bed so the Tooth Fairy would come. First time he’s asked to go to bed. He looks so cute with his front tooth missing.

This morning I went for my first PMC training bike ride with my sister, Jeanne, and friend Amy. Jeanne surprised me when she took her bike out of her car. She bought the same one I bought so we’d have matching bikes! I’m so psyched. I think that’s so great! We really wanted to have the same bike. So, we went for a five mile ride, just to get used to our new bikes and learn how to work the gears. Still don’t quite have it down but I’ll get there. It’s the spandex I really have a problem with!

It was emotional for me to ride on the street where Maddie and our family have stood for two years, watching the PMC riders. I could picture our kids standing there, eating donuts, and waving to the riders. Maddie would get so excited when she’d spot her nurse friends coming into the stop. They would stop and chat with her and she would put tattoos on them all. The tattoos said "Cancer Sucks!"

I talked to Maddie when I got to that stop today. I told her I’m doing this for her, and that I know she’ll be at this stop, cheering me on as I ride the ride in August. I know she’ll be with me the whole ride. I’m nervous about all the emotions the ride will bring out, but I know I have to ride for Maddie, for Meghan, and for all the families who have been so terribly affected by cancer.

This afternoon we went to the Norfolk Ice Arena, to attend a fund raiser held by the Sweetman Family. This is the second year they have hosted this event to raise money for cancer research. Their son, Michael, fought and won his battle, during the same time Maddie was sick. He looks awesome and is doing wonderfully! This year they held their event in Maddie’s honor. We were so touched. It was so nice to see all the families who continue to take time from their own busy lives, to help fight the fight.

I remember taking the kids to the event last year, and I had just learned that week that Maddie was sick again. You would never have known it watching her that night. She goofed around with her friends, ate her giant pretzel, drank her hot chocolate, and skated with all the kids. I even got to hold her hand and do a few laps with her. It really feels like that was just yesterday. It’s so hard to believe everything that has transpired since then. It was so surreal to be back, this time without her. I got a break from helping the boys on the ice for a minute, grabbed the hand of one of Maddie’s friends, and skated a lap with her.

The boys enjoyed the nice day outside today with Ernie. They played on the zip line and played with William’s new plastic lacrosse set. Hope even got in on the action for the afternoon. Speaking of Hope, I don’t think I’ve mentioned that she has Lyme Disease. So, I‘m the lucky one that has to put my hand down her gummy, goopy, smelly, slimy mouth, twice a day to get her to swallow her pills. It’s some kind of a cruel joke! I keep telling Maddie the only reason I’m even doing it is because I know she’s watching me and I promised her I’d be good to the dog

 

Thursday  -- April 2 

Tomorrow is William’s birthday!  I can’t believe he’s going to be 7!  I remember his birth like it was yesterday.  We were so thrilled he was a boy!  Michael and Maddie came to visit and their little faces glowed with wonderment and excitement.   I have the best picture of the two of them leaning over the hospital bassinet, peering at the new baby.  I remember when Ernie and Michael went to the cafeteria for a snack,  Maddie insisted she stay in the room with me, to help me.  I remember them leaving.   Ernie walked a little ahead with Michael, and Maddie kept looking back at me, waving.  She didn’t want to go.  I remember Ernie, now out of sight in the elevator lobby, calling out, “Come on Maddie let’s go.”  Her little face looked back one last time before turning the corner, in her little dress and work boots.

William is very excited and insisted I buy the “7” candle he saw weeks ago at the store.  He will just have a couple of friends over for pizza, cake , and games.  He opted for a more expensive gift and less extravagant party.  We’ll make it fun, with the old traditional games like musical chairs and eating a donut off a string with your hands behind your back.  We’ll make it even better by playing them blindfolded!

William has been wrestling with his loose front tooth for weeks now.  He’s so anxious for it to come out! We played a good April Fool’s joke on Ernie yesterday.  William called him at work from my cell phone, pretending he was crying because his tooth fell out, it wouldn’t stop bleeding, and we were on our way to the dentist.  He sounded so sincerely upset and scared with his fake cry and all!  Ernie was completely fooled, wished him luck and told him to relax because it would be ok.  William loved shouting “April Fool’s Dad!”  He’s quite an actor.

I managed to get my sister and friend on a few pranks, but couldn’t get Michael this year!  He was on to me!  I’ll have to step up my game next year!

We received a video from The Hole In The Wall Gang Camp, of last summer’s sessions.  Michael and  I popped it in and watched it together.  There’s a great picture of Maddie in a group of kids, her fist clenched and in the air, her face, screaming what appears to be a tribal yell!  It’s an awesome shot of her, so full of spunk, life and fight!  There are also a few others of her, painting, and just hanging out.

There is a great shot of Michael sitting on top of a horse! We waited anxiously for his picture his to pop up, and we were thrilled when it did! He looked so relaxed and happy on that horse.  Like a pro.  I asked him if he was nervous and he said no.  They got to ride, with no assistant walking with them.  Pretty cool.  I’m hoping he and William will both go to the camp this year for sibling week.  Thomas will be eligible when he’s 7.  It’s such an amazing place, full of hope, fun, adventure and kinship!  The founder, Paul Newman, was an amazing man and I am so glad that The Hole In The Wall Gang Camp is one of the two charities we will always give to, in Maddie’s name.  For kicks, check out the camp: www.holeinthewallgang.org.

 

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