Tuesday -- November 24th

Thanksgiving is upon us again. So hard to believe how quickly it came back around. There are so many thoughts constantly going through my head, and a heaviness constantly in my heart. The holidays are so hard. However, as I struggle with my grief and heartache, I have been blessed with the ability to continue finding things to be thankful for...

I met with my friend Colleen, Meghan's Mom, for coffee this week. We talked, cried, laughed, remembered, shared. My heart aches for her and Frank. Meghan was their only child. I have my boys. For that I am thankful beyond words. Colleen is truly amazing. I know her pain, and it is raw, but even through it all, she somehow helps keep me going. We help each other. For her friendship and love, I am truly thankful.

We went out to dinner with our close friends and my sister, Saturday night. Twelve of us made it out that night. Others couldn't make it. We shared a lot of laughs. It is with this group of friends that we are all allowed to truly be ourselves, go through good times and bad together, and always trust in the love and support that keeps us all bonded. We laugh together, we cry together. For all of them, I am so thankful.

We lost our dear friend, Don Etkin, so suddenly this weekend. He had recently come home from a trip to Italy with his wife, and he was diagnosed with a brain tumor. Don is the man who befriended us when he first learned of Maddie's diagnosis in Aug.06., through a mutual friend. He, too, was diagnosed with Ewing Sarcoma, 41 years ago. He rode in the PMC in Maddie's honor, wearing a custom made pink/yellow jersey with a huge butterfly on the back, and Maddie's sunset painting transferred onto cloth on the front. He was so proud of that jersey. He adored Maddie. He wrote beautiful observations from past PMC rides, and always shared with us how much Maddie touched and inspired him. He is mentioned several times on our website, and his observations from all of his rides are on the site here. Don was a very special man with a huge heart. He saw so much beauty in the world and cherished every second of it. He will truly be missed. We are blessed to have known Don, even for a short while. For his very special friendship, we are so thankful.

We know in our hearts that Maddie greeted Don when he went home to Heaven. We know the two of them had a great reunion and will be at each other's side. For that peace in our hearts, we are thankful.

We would like to share this beautiful note Don emailed us shortly after Maddie passed away.

Dear Ernie and Kristen,

Last night as I was getting onto the highway in awful traffic, I looked up and saw a stunning sunset: blue and orange sky streaked with pink and yellow and white. It was beautiful on its own, but then I was struck by how it looked so similar to Maddie's sunset seascape. Then I realized that every beautiful sunset will remind me of Maddie, and while that idea was touched with sadness, I found that I was very, very happy at the prospect of forever connecting that beauty with her.

I started thinking about sunsets. A beautiful sunset is something we can miss if we get distracted. It never lasts as long as we would like, and it is always followed by darkness. And the sun always rises the next morning.

I hope that everyone who loved Maddie will be inspired to enjoy sunsets.

Don Etkin

For our family, our health, our home, and for all of our gifts. For the continued show of love and support we receive, the emails, the calls, the letters, from friends and strangers alike. For all of it, we are thankful.

I want to share the following:

THY WILL BE DONE

"I'll lend you for a little time a child of mine" He said,
"For you to love the while she lives, and mourn for when she's dead.
It may be six or seven years, or twenty two or three,
But will you, till I call her back, take care of her for me?

She'll bring her charms to gladden you and should her stay be brief,
You'll have her lovely memories as solace for your grief.
I cannot promise she will stay, since all on earth return;
But there are lessons taught down there I want this child to learn.

I've looked the world wide over in My search for teachers true,
And from the throngs that crowd life's lanes, I have selected you.
Now will you give her all your love, nor think the labor vain,
Not hate Me when I come to call, to take her back again?"

I fancied that I heard them say, "Dear Lord, Thy Will Be Done!
For all the joy Thy child shall bring, the risk of grief we'll run,
We'll shelter her with tenderness, we'll love her while we may,
And for the happiness we've known, forever grateful stay.

But should the angels call for her much sooner than we've planned,
We'll brave the bitter grief that comes and try to understand."

I am forever thankful that I was chosen to be Maddie's Mom. So thankful God chose me. I am so thankful for the time we had with Maddie. Although it was way too short, I am so thankful for all she gave to me, all she taught me, for all we shared together. For everything she brought to this world, for everything she taught so many, through good times and bad. For the lessons she continues to teach, and of course, for our everlasting memories, I am forever thankful. There is always something to be thankful for, even in the midst of the most unbearable pain and sorrow...

Our family wishes yours a very Happy, Healthy, and Blessed Thanksgiving! There is so very much to be thankful for!

Thursday -- November 19th

This week I had "Parent Day" at school for William and Thomas. It was fun visiting each of their classrooms. They always light up when you walk through the door. I got to do a math assignment with William and a Pilgrim painting project with Thomas. Both boys seem to really be happy in school and have made nice friends.

As I was working on Thomas' pilgrim project with him, my mind wandered and I pictured Maddie during her Kindergarten days. Kindergarten is a big year for kids. I remember Michael's Kindergarten days too. I don't remember a whole lot about other grades, but I just think Kindergarten is so special. Anyway, I was picturing Maddie in her Indian garb when she was in Kindergarten. Her pretty, soft, shoulder length, brown hair under her headdress and her brown paper vest. I pictured her so clearly. She loved school. Every time I go into school I picture here there. That makes it hard for me to be there most times, but so glad when I see my boys there.

After I left the school, I went to sit with Maddie. I lost myself in tears and had my head down in my hands. As always, I asked Maddie to please show me a sign. I needed a sign. As I had my head down, I heard the loudest hawk shriek. I looked up and there it was! It shrieked so loudly to get my attention to look up. It was Maddie saying, "Look up Mom! Here's your sign! I'm here!" It sounded like they do in movies. When they're flying over a canyon. So loud, a shrieking caw, with an echo. Just amazing. That was only the 2nd time I have ever heard one shrieking! The other time was when I was sitting with Maddie months ago, not looking up.

Last entry I didn't mention some other signs my sister shared with me at Charlie's birthday party. She told me Maddie was there, at Charlie's birthday. When Charlie washed his hands, water splashed a few drops on the front of his shirt, but on his shoulder, there was a perfect water heart! She showed me the picture, along with other heart pictures. Maddie is all around them every day. Jeanne is saving all of her pictures too, so we can eventually post them on the website.

After school yesterday, both William and Thomas had a friend over. William's friend, Tia, came over, and Thomas' friend, Sam, came over. It was so nice to listen to them each of them enjoying their company. It was actually very quiet in the house. Definitely works better when both kids have a friend over or there's nothing but tears and fighting.

I am on lunch duty today for Thomas' class. He is so excited I'm coming in. He gets to buy hot lunch today for the first time. I had no bread in the house, so I had to let him buy. I also had no money in the house and had to borrow the cash from Michael's stash! The menu is pancakes. He thinks he's so cool since he'll be buying! So glad I get to be there for this big, exciting occasion!

Thomas' ear infection is clearing up. I know this because we had it re-checked when were back in to see Dr. Fox two days ago for William. He developed a strange infection in his thumb. It was swollen, painful, and oozing, so he needed to get some antibiotics. William asked Dr. Fox if he could check his socks, because they had holes in them! Dr. Fox laughed and told William he wasn't in the sock department. The boys love Joanne, the receptionist for Dr. Fox. She's so good with them and they always love to joke around with her. Thomas usually has staring contests with her. You know, the first one to blink loses. He starts the contest by saying, "You're goin' down..."

Michael came home yesterday with a very beautiful art painting he did. He was very proud and should be. He chose very vibrant, cool colors, to paint an abstract elephant. He is very artistic and it's fun watching him find his creative side. I'm so proud of him...

Monday -- November 16th

Not much to report this week. A highlight for me was dropping Hope off at the vet on Thursday for her grooming appt!! Yippee! She is short haired and clean again. Although, with dogs, the clean part only lasts for about an hour after they get home, until that first romp in the back yard!

Ernie had to work late all last week and all day Saturday, so the boys and I have just been hanging out, passing the time. It poured rain all day Saturday, so there wasn't much to do. We ran some errands during the day, put a fire on, hung out for the afternoon and then went to my sister's house to celebrate Charlie's 6th birthday with pizza and cake.

When we came home, the boys got ready for bed and decided they wanted to write their letters to Santa already! So, we worked on those for a bit. Maddie was the one who had always hand written their lists for them in the past, as they dictated their wishes. I saved all of the letters to Santa. Anyway, I'm fully aware of the fact that their letters and wishes will be changed several times before Christmas! A few items of interest - Thomas wants his own dog and William wants a snow mobile. Hmmm...yeh, sure.

The questions of how Santa gets into the house if there is a fire going are always the best aren't they!? Then William took it a step further this year. What if there is a fire going in the fireplace AND the house alarm is on? Well...Santa has a special, magical tool that can disarm any alarm system and put it back on when he leaves. William, the one who dissects every toy that he can get his hands on, thought long and hard about the logistics of that and said, "Yeh, sure he does." It took me several minutes and several more clever things to say to truly convince him.

I love listening to William and Thomas go back and forth about how dirty Santa must be when he gets home and about how the elves must be working so hard already making the toys. I told them to think about how much work Mrs. Claus has! She has to do all their laundry, oversee bath time for all of them, cook meals for all of them, clean up after all of them, do all the dishes, tuck them all in at night, do all the shopping for the materials they need to make the toys, keep everything organized for them all, keep Rudolph's nose polished and shiny, always making sure there are no finger prints on it, keep all the reindeer fed, clean up piles and piles of reindeer poop. Let's face it, Mrs. Claus deserves all the credit!

Saturday night, Thomas was up from 2am on, with a terrible ear ache. It came on so quickly. He never usually complains and can tolerate the pain, but he was so uncomfortable, tossing, turning, crying, saying, "I can't take it. I just can't take it." He just got over an ear infection a few weeks ago. So, early Sun. morning we got him into urgent care. He has a doozy of an infection and it was also heading into the other ear. Another round of antibiotics. I need to look into to some sort of preventative care for him, whether it be a daily decongestant or possibly ear tubes again. I'll give the doctor a call this week.

Sunday morning, I decided to go down to CT. with Michael, for cousin Jackie's 12th birthday. Michael was so excited to go and see the cousins. I left William and Thomas home with Ernie. The ride was about an hour and 45 minutes. Not bad. My whole family was there, so it was a really nice time seeing them all. I did, of course, have hard moments of sadness, missing Maddie with Jackie and the gang, but really did try hard to stay upbeat. It was important for Michael to be there. We got there around 1:30 in the afternoon and left around 7pm. The ride home in the dark is always the hardest. Michael and I chatted just for a bit and most of the time he had his IPOD on. So, I sang really loud, and really out of tune, to the radio, keeping myself focused on the road. Good thing Michael tuned me out.

William was waiting up for me when we got home, with his big smile and happy dance. I was beat, so I went up to bed with him by 9:30. He hid under the covers in my bed, so Ernie wouldn't find him and kick him out! Of course, I helped disguise him as a big lump of blankets. He giggled and whispered, "I love you Mommy."

 

Tuesday -- November 10th

I have some really terrible days and today is one of them. I really hate this time of year. There are days where it just hits you, and you are overcome with uncontrollable sadness and pain. Pain that hurts so bad, you can hardly breath. I scream, cry and yell. I scream for Maddie, as if she is going to answer me back or show up. You think you’re doing fine and then you just collapse. Most times when I appear to be holding myself together, inside I’m falling apart. I am absolutely consumed with grief. Just trying to get by one day at a time. It is by the Grace of God and my daughter’s loving spirit, that I am able to keep myself going.

Went to bed with a heavy heart last night, tossed and turned all night, woke up with my heart racing. Got up in the middle of the night to take something for anxiety. Woke up this morning, hoping to have a productive day. Can’t ignore the feelings, can’t stifle them, no matter how hard I try. I am consumed and I can’t escape it. I debated whether or not to share this entry with all of you because I don’t like to sound so down or bring others down, but I guess I just need to get it out. Just need to be real for a moment. Talking, writing, a therapeutic outlet…

People don’t understand that it doesn’t get easier with time. It just doesn’t. I’m told it’s going to get harder until it will become “different” over time. It is so damn hard. Kids all planning to come home from college. Moms excited to see their daughters and sons, whom they haven’t seen in a few weeks or months. I haven’t seen my Maddie for over a year. I miss her more and more with each day that passes by. Stores all buzzing with excited holiday shoppers. Maddie loved Thanksgiving. She told me it was her favorite holiday. She loved getting together with all the cousins...

So, that’s where I am today, in this moment.

I have never been one to blame God and I pray I never do. There are certainly times when I can’t wrap my brain around the “why or how did this happen.” No, I don’t blame God for giving Maddie cancer. He didn’t give her cancer. He helped us get through our terrible time and He allowed Maddie to stay and do His work, longer than her illness wanted to allow. For that I am grateful. I am so saddened that she had to leave, but I know with all my heart that I will understand fully one day, what God’s plan was, and that’s why I share the following. This helps me to hold on.

My brother sent this writing to me. I want to share it because I know a lot of people are going through their own hard times and sorrows and if I can get through one day at a time with faith in my own heart, then I know someone else in need can too.

God’s Cake
A daughter is telling her Mother how everything is going wrong, she's failing algebra, her boyfriend broke up with her and her best friend is moving away.
Meanwhile, her Mother is baking a cake and asks her daughter if she would like a snack, and the daughter says, 'Absolutely Mom, I love your cake.'
'Here, have some cooking oil,' her Mother offers.
'Yuck' says her daughter.
'How about a couple raw eggs?' 'Gross, Mom!'
'Would you like some flour then? Or maybe baking soda?'
'Mom, those are all yucky!'
To which the mother replies: 'Yes, all those things seem bad all by themselves. But when they are put together in the right way, they make a wonderfully delicious cake! '
God works the same way. Many times we wonder why He would let us go through such bad and difficult times. But God knows that when He puts these things all in His order, they always work for good! We just have to trust Him and, eventually, they will all make something wonderful!
God is crazy about you. He sends you flowers every spring and a sunrise every morning. Whenever you want to talk, He'll listen. He can live anywhere in the universe, and He chose your heart.

Thursday -- November 5th

Hope everyone had a nice Halloween. The boys had a pretty decent night. I let Michael go out with his friends, despite the fact that he had been home sick from school since that Tuesday. Low grade fever, sore throat, but not so bad. William and Thomas went out with Ernie, as has been our tradition, and I stayed home to hand out candy. William was Spiderman, although the costume is way too small for him, and Thomas was a Ketchup bottle. Michael planned on being the "Balloon Boy," you know, the hoax story of the boy flying off in his father's balloon invention, but because he was a last minute trick or treater, he just wore a box around his chest! He wouldn't let me take the time to drape the silver foil tablecloths I bought around him!

Maddie would've been a black cat AGAIN! She was the cutest cat around! I think she was a black cat every year except her last year. She was Pikachu. She was SO excited when that costume arrived in the mail. We had to special order that one! Going through the attic to find the boys' costumes, I found her bag of cat "things." Her ears, her tail, her furry collar, my black eyeliner and red lipstick. I loved drawing her kitty face on. As she got older, she got really good at drawing it on herself. I miss my black cat...

Last year, I remember as Halloween was approaching, Maddie was afraid she wouldn't be out of the hospital in time to go Trick or Treating. She asked every nurse what they were going to be. One nurse, Brynn, was going to be a monkey. Maddie offered to let her borrow her butterfly wings, wings I don't remember her ever using. She always had ideas but went back to the black cat. Anyway, Brynn wanted to be a monkey. So, from that day on, every time Brynn came into Maddie's room, Maddie insisted she make monkey sounds, you know, so she could practice for Halloween. It was cute!

The boys and Ernie only did the cul de sac across the street and then came home. William wasn't feeling well and now he is the one home sick from school. Hoping Thomas won't be the next one to drop and Ernie and I have been fighting it. I slept with William on the bathroom floor the other night, the entire night. Yeh, that was real comfortable. Couldn't decide if our body aches the next day were symptoms of the flu or our night on the floor.

I got to volunteer for the school Halloween parade. First time I had ever done that. It was quite the parade. Very exciting for the kids and teachers alike. Don't know who had the better costumes, the kids or the staff! William and Thomas had huge smiles on their faces and William got to lead the entire parade!

Pam, AKA "Cookie," to Maddie, stopped by to get our Halloween candy and the candy two other neighbors gave to me, to bring it into Children's Hospital. The kids in there, and the nursing staff, could use it more than us! I know it will make them smile. The boys were more than happy to give it to the hospital.

School photos came back. It is so amazing how much the boys have grown up in just a year. No more baby faces. They are really growing up. I couldn't bring myself to change the pictures out in the frames, in the hallway, for a few days. That would mean I'd have to be reminded, again, that Maddie's photo will never change. That was really hard.

The other day, Thomas made a beautiful, colorful, little star, out of the beads you iron together. He made it for Maddie, and asked me to bring him down to see her, so that we could leave it with her. He was so proud of his work, and when I took him down to her special garden, he hung it on her plant stake. He moved it a few times before settling on the stake. He stood for a few minutes, then kissed her picture. I tried not to let him see me crying, although I think he was choking back his tears too.

Thomas has really been missing Maddie a lot. We all have, but Thomas is very expressive. He cried himself to sleep the other night, saying that he just wishes he could see her, and hug and kiss her one more time. "Just one more time." God, I would give anything to have that too.

Been falling apart a lot. Each day without Maddie seems to get harder and this time of year is really hard. I truly hope and pray that I can be strong for the family as the holidays approach. Still just trying to keep busy and distracted. Thank God every day for my boys!

I was going through some pictures last night because I want to send a picture of Maddie to the ICU team at Children's Hospital, who recently wrote me again. They send cards letting us know how much Maddie touched them, and how much she is thought of by the team. They never knew her with hair and most of the time she was in their care, she was intibated, so they rarely got to see her amazing smile. I did have her picture taped to the side of her bed so they could see beyond the tubes and machines and see her face.

So, I was thinking I'd send a picture along with my note. I came across one of my favorite pictures of Maddie. It's a portrait of her, sitting in a field of yellow daisies. She was probably 5 or 6. Her hair is pinned up in the front, long hair behind her shoulders. She was wearing her little cream button down sweater and pink pants. Her hands folded sweetly on her lap as she sits. I always told her she had the softest little "baby hands." They never changed. Her legs are folded under her bum, her brown "loafer" slip on shoes are showing. She would NEVER wear girly shoes! She has a closed lip smile, with her huge dimples glowing. Her skin is like porcelain, so smooth and perfect. I know every Mom thinks their kids are beautiful, but Maddie was SO beautiful, SO incredibly pretty.

I framed the picture and put it on my desk. Sometimes it's hard to remember those good days, when you can only focus on the bad, terrible, sick days, and I need to look at my healthy girl. She was so much more than cancer, and I need to try to replace sad images in my head with happy images. I really need to.

I've been told that when people pass, they don't miss us. God doesn't allow them to be sad. They don't miss us because they don't feel gone. I couldn't bear the thought of her missing us. That would be too much to bear. They take a piece of us with them, so we're always with them. I feel that literally. Maddie did take a piece of me with her, a piece I will never be able to replace or patch, but I know when it is my time to go, we will put our pieces together and be whole again. I know she is happier than ever and filled with amazing peace and love.

Then there are my boys who make me laugh and smile every day. The other night I filled my glass with iced tea and turned to finish the dishes. When I turned back, Thomas was finishing the last gulp and rubbing his belly. He let out a big, "Ahhhh." I said, "You little thief, you just drank my iced tea!" Then with his blue eyes squinted and one eyebrow raised, he said, "Well Mom, a man's gotta do what a man's gotta do!" Cracked me up!

Michael got a perfect score on his project this week and William got a 100 on his spelling test! Great stuff!

 

 

 

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