Monday-- February 22nd

Back to school today. Thought I would be so happy, but not having the kids as a distraction actually makes the days harder...

We didn't do anything too terribly exciting over the break. We did manage to go tubing one night and then Ernie took the boys skiing the next night. I was glad I got to go and watch them tube. It was good to see them smiling and laughing, despite the freezing cold weather. When Ernie took them skiing, they had a great time. Thomas mustered up the courage to go on the ski lift, Michael improves each time on his snowboard, and William, the daredevil, took a spill on the jump. Why was he on the jump?! He hit hard on the ice and got a shiner. He came home with a band aid under his eye and a bump on his head. Ernie said he hit pretty hard, but took it like a champ.

Valentine's Day was another excuse to eat candy for the boys. They loved their chocolates and sugar candies. Ernie bought me beautiful pink and yellow flowers and Maddie a pretty, single pink rose that I brought down and placed with her when I put her balloons up. William has been writing notes to Maddie at school and I find them in his back pack. Most of them have said, "I miss you Maddie and will never forget you." For Valentine's Day, he came home with a beautifully laminated paper, with colored pink hearts, that said, "Dear Maddie, I love you and I always think of you." He wanted to send it up to Heaven, up to Maddie, inside a balloon, but it's too special, so I asked him if we could keep it here.

We had fun one day when I hid decorative hearts on sticks all around the yard and the three boys had to find them to get a prize. It was so fun watching them run around the yard, working as a team, and not fighting, to find the hearts. They eventually found all 12 but it took them a while. I had one intertwined in the twigs up on the tree in the tree fort. Thomas spotted that one after I gave them a hint. Michael found the one I stuck in the Christmas butterfly wreath that is still on the front of the house. Never thought any of them would find that one! It was fun and FREE entertainment!

Thomas went on a play date and the Mom told me he was talking about Maddie with his friend. He offered to let his friend have a "piece of Maddie" so that she would be with him too. Then the two of them decided that they could each have their own because she can be in more than one place at a time.

I know the boys miss Maddie so much. She is never out of their minds and hearts. I really miss seeing them with her. The interaction, the laughter, the fighting, the craziness, the silliness, the love. I wish more than anything that I could give them their sister back. Take their sadness and loss away.

We were all laying in our bed the other night, watching tv. It was so cozy, but a very tight squeeze. We only have a queen sized bed and let's face it, my husband and boys are not little people! But as we were laying there, the boys kept drinking my iced tea, every time I refilled my glass and got up. So, I filled it one last time and asked them not to drink it when I left the room. SUCKERS! Michael was the first to giggle, and grab the glass and chug - only to discover it was mixed with pickle juice and salt! Oh, it was priceless! That put and end to the little thieves stealing my iced tea. That laugh was definitely worth that one last trip to the fridge for one more refill!

I never found my earrings. I am so sad about that. I am still praying every day that they will find their way back to me, somehow, some day.

Went down to visit Maddie after the snow fall and found the most adorable Life Is Good baseball hat left there. It is yellow with a pink and yellow butterfly. It's perfect! I found out who left it and I'm so grateful! It is so Maddie, and I will wear it often.

William lost another tooth. He was thrilled. This time, Michael took over as the Tooth Fairy. He wrote a very funny note and had a good time leaving the loot. William was thrilled to wake up and find it. Thomas is just foaming at the mouth to lose his first tooth!

Michelle Knowles called me the other night from a very special location. She had to go on a business trip and on her way, stopped in to Give Kids The World, the resort where we stayed during our Make A Wish Trip to Disney. She wanted to go in and find Maddie's star on the castle ceiling. She and her boyfriend, Robbie, had visited us for a day when we were there, so she was familiar with the place. I was on the phone with her when she was looking for Maddie's special star and found it! I felt like I was there. It was very emotional. It feels like just yesterday when she made it, and it was hung with the hundreds of others, to forever remain. Michelle took a picture and sent it to me. Brought back so many emotional memories.

Ernie made Michael a loft bed this weekend. Michael thinks it's really cool. Ernie did a great job. Now I have to paint it and rearrange the room. I loved his room and had just done it over recently. I'm not a fan of bunk beds and loft beds. They're a pain in the butt to make, and you don't think Michael will bother with that do you?! The next project is bunk beds for the boys this weekend. They cannot wait!

Ernie took Michael to get his lacrosse equipment this weekend. He's playing Lacrosse, starting this week. He's very excited to play. I think it will be a good sport for him. It will be fun to go and watch his games.

Did something to my back and since Monday, can hardly move. Of all weeks for it to happen - during school break. I can't stand being slowed down. I haven't been able to do my ZUMBA class or my eliptical. It's so frustrating, but then I think of Maddie and remind myself not to complain!

We took the boys rock climbing at a place in RI on one of the last days of break. I would've loved to have been able to do it with them. They had a great time. Ernie was the anchor and they took turns climbing. Michael made it to the top. He did great! Spiderman, I mean William, came pretty close to the top too, and Thomas, after a few tries, became more interested in the candy vending machine. I was the "watcher" and "clapper."

Have a lot to catch up on this week. Our first Cocktails For A Cure party is in 2 weeks! If anyone would like to attend and didn't receive an invite, feel free to email me for the info ( Have to start painting Michael's bed, pay some bills, return phone calls, emails and letters, you know how it goes.

Hope you all had an enjoyable week of vacation with your kids.



Sunday-- February 14th

It's Friday. We're on school vacation this week. Didn't we just have a week off?! The vacations sure do roll around quickly. Why can't the warm weather roll back around as quickly! Don't have anything planned for the break. Guess we'll just find things to do one day at a time.

Think I'll start the weekend by giving the boys a haircut tomorrow. William looks like a little leprechaun, or better yet, Herbie the dentist from the classic Rudolph movie. I told him it was hair cut day tomorrow and he told me he's "letting his hair grow." "You can't cut it. It's my hair Mom, so I can do what I want with it." OK, William, that's a good one! He learned that one from Michael, who we decided to let have his way on the whole hair thing. It's painful for me to watch his ears slowly disappear under the growing hairline, but you have to pick your battles right? I hope it's just a phase, otherwise, he won't be too happy when we end the phase for him. Told him I'd only let it go so long. Thomas' hair still grows in like a Chi A Pet. Standing straight up into the air. He's still my only blonde, but it's getting darker. He and William are starting to look like twins. Their faces are different but their sizes are almost exactly the same!

As big or old as they get, I keep reminding them that they will always be my babies. As much as they snicker at that idea and "pretend" to fight it, I think they secretly love knowing it! William came up to me in the kitchen the other day, when I was at the sink. He put his arms around my waist, looked up at me, smiled, and said, "When you're near me I feel safe." That melted me. He always says such sweet things.

Went down to shovel Maddie's site after the snow the other day. There wasn't a trace of any visitors at the cemetery, not even bird prints. Looked like a big, cold white blanket everywhere. So, I shoveled a big square all around Maddie and put her decorations back out. Then I shoveled out her "neighbor," Julie. Had a nice "chat" with her. I know she's a Grandmother who loved kids, so I asked her to keep an eye on Maddie! She gets lots of visitors from loved ones, so I thought it would be nice to clear a path.

William's tooth popped out the other day. He banged himself in the mouth with his DS game and out it came! He was thrilled. He had been working on that one for a while. He wrote his note to the tooth fairy and couldn't find his tooth box. He said, "Wait! I know!" He ran into Maddie's room and grabbed hers from her shelf. A pretty silver box, lined with blue velvet. "I'll use Maddie's." We both knew Maddie would be more than happy to lend it to him. William got up at 5am, came running into our room, to show us his money and the note the Tooth Fairy left him. He also told us he thinks he heard the Tooth Fairy but pretended he was sleeping. That Tooth Fairy sure has to be quick!

I volunteered to go on the 2nd grade ice skating trip today. It was hard but emotional. Just being around all of the school kids, Maddie's old teachers, in the rink where I had gone skating with Maddie and the boys. They had a performer skate and he skated to Josh Groban's song, "You Raise Me Up." Oh, great. Just as I thought I was holding up well. I remember the exact spot Maddie sat drinking her hot cocoa and eating a pretzel with William Linde the last time she was there, being silly.

A teacher I hadn't met introduced herself to me. She had worked with Maddie on MCAS practice. She told me how she and her husband were at the Rascal Flatts concert and heard the shout out to Maddie. She said she knew it could only be our Maddie and she was so excited when she confirmed it the next day, when she read my posting on the website. That moment was so amazing. I often think about that night.

Some high school hockey players came out onto the ice to give a demo. When they were done, they handed their pucks over to a few lucky kids. William was so devastated that he didn't get one. He thought the hockey players were celebrities and wanted their autograph! To get one of their pucks would've been extra special. So, I looked all around, on the floor, under the bleachers, the locker room, asked the players if they had any left. There were none left. I went into the pro shop to see if I could buy one. They were all out. I must have had a real defeated expression on my face, because the woman said, "Let me just go check if there are any laying out back." She came back with a puck!!! YEAH!!! Thank you! Thank you! I couldn't wait to find William. Just as he was filing out to get on the bus, I winked at him and slipped him the puck. You should've seen his wide eyes and huge smile! He said, "Do they sell them in the shop?" I said, "Nope. I got it from one of the hockey players so it's extra special." He was so excited. I said, "Who loves ya Baby?" He said, "You do!" Ahh, that felt great!

Covered lunch duty after skating. The kids were so wound up from skating. On my way out, I poked my head into Thomas' room and when I spotted him said, "Psssst!" He looked up at me and smiled, but it must have been "quiet time" because he had to remain very "serious" and finish his activity.

I'm so bummed William will be moving onto the next school next year. It's so nice having them together, the way it was with Michael and Maddie.

Had something very depressing happen this week. I had a little clear baggy with Maddie's very special earrings in my pocket the other day. The pair she made me in Lourdes, the pair she made herself in Lourdes, the little pink daisies she got her ears pierced with, and the fake diamond studs she won for me out of a vending machine. I lost the bag. I have searched everywhere and they are gone. The bag must have fallen out of my pocket. I am beside myself. Each pair represented something so special between us and they were the most precious, sentimental "things" I had left of Maddie's. I really need that bag of earrings back. I know they're just "things" but they're mine and Maddie's things together. They represent everything to me. Please say a prayer that I'll find them.

Well, have a nice weekend everyone. Have a Happy Valentine's Day.

Please keep all of our friends who are sick and fighting illness, in your prayers. Two very good friends of mine are facing new and very difficult challenges ahead in their illnesses...

"The Will of God will never take you where the Grace of God will not protect you."

Friday-- February 5th

Been very stressed lately. Just feel so drained...mish mosh of emotional "stuff" going on at home, a lot of work for PMC fund raising, can't get out in this cold, miss my girl so badly...

Anyway, not a whole lot of new stuff to write about. Just been doing a lot of deep thinking these past few weeks. Have met some very special people, who have all come into my life through "Maddie stories." Just deep thinking about life, love, journeys, reasons, people, my life -past, present, and future. Must come across as somewhat dazed when I run into people in the store, or wherever. Actually had a conversation with a woman the other day at the store, thinking she was someone else for the first few minutes of the conversation, then snapping out of it and realizing she was someone else. I knew who she was, but my brain was only half functioning! Also left the house the other day to run errands and forgot everything I needed to bring, on the counter. Even forgot my purse! Can you believe it!? I'll sometimes walk away from a conversation and two minutes later find myself thinking, "What did I just say? I forgot what we just talked about!" I don't know - can't explain it. Emotional overload I guess.

Switched out the decor down at Maddie's site. Took the Christmas kissing balls down and hung the Valentine's Day hearts and garland. It looks pretty. I went to the Christmas Tree Shop to buy the things, and a mother and daughter, Maddie's age, were there buying Valentine's Day stuff too. It's always so hard to stand next to a mother/daughter team and try not to fall apart. I listen to their conversations, watch their exchanges, and wish I could have my girl back. I asked the little girl for her opinion on the hearts I bought. She liked them. I knew Maddie would too.

Someone left beautiful roses down with Maddie - THANK YOU!

I am so anxious for the nice weather. So tired of the snow and the cold. Need to get back out on my bike, be in the fresh air with my thoughts. There's not much else to do other than go shopping, but at this point, I'm afraid that every time I try to swipe my charge card, a huge alarm is going to go off, a big net is going to drop from the ceiling and trap me, and I'll be hauled off to the camp for card abusers!

Maddie's nurse and friend, Pam, AKA "Cookie" sent me the following writing. She said she thought of our family when she read it and knew how fitting I would find it. I read it and felt like I had written it myself. I want to share it, not because I am stepping backward in my grief , or looking for sympathy. I share it for so many reasons. Mostly, so that our "Gap" may become smaller, to help people truly understand. I also, in sharing it, acknowledge how blessed we have been with friends who seem to "get it," as best as they possibly can, and have been there every day helping us breathe. Lastly, I share it in hopes that you'll understand and pardon me, for those times when I may seem dazed when I run into you, forget who I'm chatting with for a second, and what we chatted about. It just may take me a few minutes to get my thoughts straight...

The Gap
by Michael Crelinsten

The gap between those who have lost children and those who have not is profoundly difficult to bridge. No one, whose children are well and intact can be expected to understand what parents who have lost children have absorbed, what they bear. Our daughter now comes to us through every blade of grass, every crack in the sidewalk, every bowl of breakfast cereal, every kid on a scooter. We seek contact with her atoms-her hairbrush, her toothbrush, her clothing. We reach for what was integrally woven into the fabric of our lives, now torn and shredded. What we had wanted, when she so suddenly took ill, was for her to be treated. We wanted her to be annoyed that her head had been shaved for surgery. We would have shaved ours and then watch her smile as we recovered together, whatever the nature of that recovery. "Recover" is no longer a part of our vocabulary. Now we simply walk through the noise and debris of our personal ground zero.

A black hole has been blown through our souls and indeed, it often does not allow the light to escape. It is a difficult place. For us to enter there is to be cut deeply, and torn anew, each time we go there, by the jagged edges of our loss. Yet we return again and again, for that is where she now resides.

This will be so for years to come and it will change us, profoundly. At some point in the distant future, the edges of that hole will have tempered and softened but the empty space will remain-a life sentence. It is not unlike a dog who, suddenly hit by a car, survives. The impact is devastating and leaves the animal in shock, confusion, and despair. In time the animal recovers adequately to spend the remainder of its life on three legs. It is not that he is unable, eventually, to function or even to laugh and play. The reality, however, is that on three legs from here on, every step he takes, every action, virtually every breath reminds him of what he has lost. We are that animal.

Our community of friends will change through this. There is no avoiding it. We grieve for our daughter, in part, through talking about her and our feelings for having lost her. Some go there with us, others cannot and, through their denial add a further measure, however unwittingly, to an already heavy burden. This was not a sprained ankle or major surgery that we suffered. Assuming that we may be feeling "better" six months later is simply "to not get it." The excruciating and isolating reality that bereaved parents feel is hermetically sealed from the nature of any other human experience. Thus it is a trap-those whose compassion and insight we most need are those for whom we abhor the experience that would allow them that sensitivity and capacity. And, yet, somehow, there are those, each in their own fashion, who have found a way to reach us and stay, to our immeasurable comfort. They have understood, again each in their own way, that Alexis remains our daughter through our memory of her. Her memory is sustained through speaking about her and our feelings about her death. Deny this and you deny her life. Deny her life and you have no place in ours. That's the equation. How different people have responded to our loss, or not, transcends a range of attitudes and personal histories. It is teaching us much about human capacity and experience, albeit at a searing price. Parents' memories of a lost child sustain that life. It should be the other way around.

We recognize that we have removed to an emotional place where it is often very difficult to reach us. Our attempts to be normal are painful and the day to day carries a silent, screaming anguish that accompanies us, sometimes from moment to moment. Were we to give it its own voice we fear we would become truly unreachable, and so we remain "strong" for a host of reasons even as the strength saps our energy and drains our will. Were we to act out our true feelings we would be impossible to be with. We resent having to act normal, yet we dare not do otherwise. People who understand this dynamic are our gold standard. Working our way through this over the years will change us as does every experience-and extreme experience changes one extremely. We know we will have recovered when, as we have read, it is no longer so painful to be normal. We do not know who we will be at that point or who will still be with us.

There will come a time, quite some number of years down the road, when the balance between the desperate awareness of what we have lost when our daughter died will be somewhat balanced by the warm and joyful memories of what we had with her when she lived. I neither long for nor cringe from that time. It will simply come. We will recognize it-though now it is beyond us.

So, yes, our beloved daughter is gone-a light in our lives gone out leaving blackness for us, left behind, to stumble through. And, while we understand and deeply feel the meaning of our phrase "Now we are it by her only from within," we hope, desperately, that she is wherever the light is. We are trying to understand what this means, as we seek our own way, for the remainder of our lives, to some kind of light. We love our son and are trying to breathe.

We have read that the gap is so difficult that, often, bereaved parents must attempt to reach out to friends and relatives or risk losing them. This is our attempt. For those untarnished by such events, who wish to know in some way what they, thankfully, do not know, read this. It may provide a window that is helpful for both sides of the gap.


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