Have Yourself a Merry Little Christmas

The other night, we spent our first night at our new house.  For the last month or so, we’ve been staying with my mom as we waited to have a new heating system installed.  The new heating system is still not installed, but we did setup some temporary heat to allow us to live in the house, which is something we wanted to do so we can spend Christmas at the new house.

After we put Annalise and Nathaniel to bed, I walked by Isabella’s room and stared at the furniture sitting in her room.  As I stood in the doorway, I knew that furniture would likely never be used, but I imagined a smiling and healthy Isabella getting ready for bed or doing her homework at her desk.  I could see her dancing in her room as she listened to the latest Taylor Swift song, her long curly hair bouncing as she hopped and sang.  I could see her running down the stairs with Annalise and Nathaniel on Christmas morning squealing in delight as she saw all the gifts underneath the tree.  But she wouldn’t tear through the gifts, as Nathaniel would, she would carefully take the wrapping off each gift.

Of course, all of these visions will only take place in my head.  Although I try to get into the Christmas spirit, it’s hard not to feel a little guilty knowing that our family is incomplete.   With the move, we never had the chance to get our Christmas cards ready, but I don’t know if it was because of lack of time or just the thought of trying to pick out a picture for the card that would be gut-wrenching.  We also didn’t pick out our traditional annual Christmas tree ornament, again, we just don’t know how to deal with it at this time.  Even our Christmas tree isn’t fully decorated with just some lights and a fraction of the ornaments that we normally put on.

I’d imagine it’ll get easier and better with time. This is certainly a transitional Christmas as it will be our first one without Isabella and the first one at the new house.

But enough about us.  From our family to yours, we wish you a peaceful and Merry Christmas.  Here are a few recent pics.





And finally, this was one of Isabella’s favorite Christmas songs to sing!  Enjoy!

My Thoughts on the Newtown Tragedy

For my company, I work in Disaster Recovery and Business Continuity.  Basically, we work on trying to prevent bad things from happening, and if they do, try to minimize the impact so that the business can continue to function.  I usually monitor the news to see if there are any events that could affect the company.  There could be an earthquake, or a tornado, or a protest near one of our sites that could potentially disrupt business.

When I saw an alert this morning that there was yet another shooting, I glanced over it, thinking it was just another domestic dispute, or maybe a disgruntled worker.  It stuck in my head just a bit longer than usual because I saw that it was in Connecticut, just a few towns over from where I live.  In fact, over the last couple of summers, Annalise has had several softball games in Newtown, not far from the elementary school where the reported shooting had taken place.

I went on with my day, but I kept a window open that constantly refreshed the news.  As more details leaked out and the tragic events unfolded, I began streaming the news on my iPad.

The video that the news was showing displayed a scene that was already controlled by the authorities.  Dozens of first responders were on the scene as police locked the area down.  Initial reports said that “only” three people were taken to the hospital and that the gunman had already been killed.  So maybe the damage was limited and perhaps this was a “simple” murder suicide case.  Maybe some guy just got fired and decided to take it out on a couple people at the school.  But whatever the case, it didn’t look too bad.

But this wasn’t just another domestic dispute or another case of workplace violence, as I thought at first. The reason that we didn’t see all of the casualties was that they were all still in the building.  At first, the report was that there were several casualties.  Then, there were multiple fatalities.  Then, we found out that several children were among the dead.  With each report, I grew more and more nauseous, hoping that it was just some error in reporting.  But then, our worst fears were confirmed.  At the end of the day, 20 innocent children and 6 adults lost their lives.

I instantly thought about Annalise and Nathaniel, especially Nathaniel because he, himself is in kindergarten.  I put myself in that classroom and just imagined the terror and bewilderment the children must have gone through before their all-too-short lives were so callously snuffed out.  I tortured myself by imagining Nathaniel in that room, crying, watching his friends get shot.  I jumped on the next train and went home.

It was a long train ride home.  I thought about the parents who came to the sudden realization that their child was no longer alive.  These parents, as many of us do on a daily basis, sent their kids off to school, never questioning that they’ll see them later in the day.  But suddenly, their child was gone.

I wrote about this briefly after Isabella died, but in some ways, it is easier on parents like Julianne and myself to lose a child after a long sickness.  We’ve had years to try and do what we could for Isabella, but we also had in the back of our minds what was waiting.  We were able to prepare ourselves mentally for Isabella’s death, and the only unknown variable was when.  We were able to say goodbye to Isabella in our home and held her as she passed.

But these parents that lost their child today had no such time to prepare.  They dropped their kids off, fully expecting to pick them up later in the day.  Even as hundreds of other children were being reunited with their families, every minute that went by, the hopes of seeing their child alive diminished.  These parents couldn’t even claim their child’s body as the crime scene investigators scour the area, looking for clues as to the details of what happened.  I don’t even know the emotional toll this could take on them and how they will recover.

As more details of this tragic event unfold, we will all be wondering “why” and “how” can such a thing happen?  There will be a lot of focus on the gunman, his parents and upbringing, gun laws, school safety, and lots of other things.

But I urge you and the media to focus on the victims and their families.  These are people whose light was extinguished much too soon and they shouldn’t be forgotten.  We should focus on the teachers who heroically and instinctively protected the children and got them to safety.  Teaching is not supposed to be a hazardous occupation.

Today, I went to visit Isabella’s grave and I openly wept as I thought about the new kids that she would be meeting.  I could see her greeting Charlotte, Daniel, Olivia, Josephine, Ana, Dylan, Madeleine, Catherine, Chase, Jesse, James, Grace, Emilie, Jack, Noah, Caroline, Jessica, Avielle, Benjamin, and Allison, all with her big smile.

Then she would show them around and they would all be running and playing and laughing for eternity.

Four Year Laters - A New Chapter

When Nathaniel was born a little over five years ago, Julianne and I knew that we had outgrown our house and would need to move. We had informally started looking at some houses and knew in general what we were looking for. We knew we needed a bigger house and a bigger yard and wanted to stay in the general vicinity. We also knew that we needed to fix up our current house in order to be able to sell it. This was probably the hardest part of it all.

A year later, our plans were put on hold as Isabella was diagnosed. The plans to move were put on hold as we focused all of our energy on treating Isabella. A year after as Isabella was in remission, we started up talks again of moving, but had to be put on hold again when Isabella's cancer returned.

The delays probably weren't the worst things in the world since the housing bubble burst in the meantime which sent house prices and mortgage rates lower. Around a year ago, we had a renewed focus to fix up the house to prepare it for the Spring market. We rented out a storage unit and transferred all of our excess stuff to it.

This Spring, we put our house on the market and began looking at other houses. We looked all over and saw a bunch of different houses (including one that had an indoor pool!). As we visited each house, we would envision our family living in the house and drew up each of the kids' bedrooms. We would scope out the yard to see if there was enough room for Nathaniel to run around and for me and Annalise to practice her pitching. But as the summer dragged on, we never found that perfect house out of the dozens of houses we visited. There was always something wrong with it, whether it was the layout of the kitchen, or the size of the bedrooms. On top of that, we had yet to sell our own house.

Late in the summer, a foreclosed property popped up on my house alerts that matched our criteria and we immediately scheduled a visit with our realtor. I didn't have much hope in it, because we saw other foreclosed and short-sale properties and they were generally a mess and needed a ton of work. But when we visited this house, it seemed to be in good shape despite not being lived in for a couple years. "This could be it!" we thought, but again, we didn't want to get our hopes up because the bidding for foreclosures is generally pretty cutthroat. After being on the market for just four days, the bank asked for best and final offers. We put our offer in, and hoped for the best, but again didn't expect anything.

So when our realtor called and told us that our offer was accepted, we were shocked and thrilled. We began the long and arduous task of getting a mortgage.  Last week, after battling hurricanes and snowstorms, we finally closed on the house and began moving in.  There is some major work before we can actually start living in the house, so we've moved in with my mom temporarily.

The week that Isabella died, we all went out to the new house and picked rooms.  We didn't know at the time that that would be Isabella's last time at the house.   As Isabella was dying in our bed, we had already known we were going to be moving. We felt bad that Isabella would be "stuck" at our old house after we moved, but our hospice nurse reasoned with us that we wouldn't feel that way if Isabella had died at the hospital. It would have been great if she lived long enough to move into the new house with us, but it just didn't work out, but we're glad she had a chance to see the house and her room before she died.

So here we are, now, exactly four years after Isabella was first diganosed.  Although these four years have flown by, as I read through past posts, I am just overwhelmed and amazed by everything that we've gone through.  Our family has been changed and we'll never be the same.   Again, we were comforted knowing that Isabella had just recently seen her room at the new house and will be with us in spirit. 

But we need this change and this new beginning.  Although we are grateful for our community and the tremendous support that they've shown over these years, we needed a physical change of scenery to continue the healing process for us.  And it's not like we're trying to leave Isabella behind or forget about her, because she'll keep her room that we promised her and decorate it with all of her things as a lasting memorial to our little angel.

One Month Later

If I had planned it out a little better, I would have waited a couple days to make my last post (Two Weeks Later), to coincide with today, which marks a whole month since Isabella died.  But I didn’t, so you get treated to an extra post!

So it’s been another two weeks since I made that last post and things have gotten a little better.  Things were pretty rough then since we had just buried Isabella and all our family had gone and we were left alone.  As someone so eloquently wrote an e-mail to me recently: the real grieving starts after everyone goes home and boy were they right.  I think that previous post pretty much described it all.

I’ve been back to work a few days and it’s helped to stay distracted for a few hours a day.  It’s better than sitting around all day staring at the walls.  When I get home from work, I still expect to be greeted by three kids, or I should say two kids and a brooding pre-teen listening to music on her iPhone.  But I still cherish that moment when I walk through the door and Nathaniel greets me with a scream, then 30 minutes later, Annalise greets me with “When did you get home?”  We have reminders of Isabella all over the place, whether it be pictures of her on our digital frame or the computer screen saver that remind us of how much fun we had.  I still look at Isabella’s empty bed and miss her, but like I said earlier, it’s getting better.

Today, we visited Isabella’s grave again to drop off some flowers and tidy up her temporary marker.  We still haven’t picked out a marker for her grave, but will probably do so in a few weeks.  When we got home, I noticed a dragonfly hanging around our front yard.  Amazingly, it sat long enough (dare I say “pose”?) for me to take a few pictures before it flew off.

Two Weeks Later

NOTE:  I original wrote this two weeks ago, but didn't feel like posting it at the time.  I do that from time to time.  Sometimes I end up posting things after a few days to brew, and sometimes I never end up posting it.  This one brewed for a couple weeks.

I can’t believe that it’s been (almost) two weeks since Isabella died.  Part of me thinks that I’m going to wake up at any minute and realize this has all been a bad dream.  But the rational side of me knows it’s all too true.

It’s been pretty tough trying to adjust to this new chapter in our life.  I still walk by her bed and expect to see her laying there, and I just want to walk over and run my fingers through her hair just one more time.  When we were preparing the seats for the cemetery, I realized that we would only need four seats instead of the five that I am so accustomed to.  Today, I was answering a survey over the phone and when they asked how many dependents I had, I had to stop and think and change my answer mid-stream (then try to compose myself to finish the survey).  I also had to fill out the forms to close out her college education funds which we’ve been contributing to since she was born.  It makes me sad that her true brilliance will never be known to us.

Also today, the hospice company came over and picked up all the medical equipment from our house.  Although it’s nice that our house no longer looks like a wing of the hospital, it feels like we’re slowly just trying to forget or erase Isabella from our memory.  But of course that couldn’t be further from the truth, but that’s how it feels.  That’s why I felt bad taking Isabella’s car seats out of the cars, or taking her wheelchair out of the car for the last time and storing it away.  We won’t need those again.

When we visit Isabella’s grave, I still can’t believe that our little girl is in a box just a few feet below my own feet.  Alone.  In darkness.  Forever.  If I could, I’d dig up her casket right there just to give her another hug.  Just to tell her how sorry I am that she had to go through so much pain and suffering.  Pain and suffering that she didn’t deserve.

I think the worst part is the guilt I feel.  It’s not the typical survivor’s guilt, although there is some of that.  The guilt I feel is because a part of me is relieved.  Relieved that not only is Isabella no longer suffering, but relieved that we no longer have to deal with a sick child.  Now admittedly, Julianne carried the large portion of the burden of caring for Isabella, but there was still such a huge emotional and physical strain and stress of having a dying child.  But now that strain and stress are gone, and I am relieved.  Don’t get me wrong.  I’d trade it all back in a second and deal with the stress if Isabella could still be alive.  But I still feel guilty for feeling relieved, because shouldn’t I be mourning?  Shouldn’t I be more sad?

I know it’s only been two weeks and there’s a lot of time and a lot of emotions and a lot of healing left.  But I do feel that we have an advantage because we’ve had plenty of time, almost four years, to prepare for Isabella’s death.  As I mentioned at her funeral mass, practically every day since Isabella was diagnosed, I would think about her eulogy and what I would say, but still hoping that I would never need it.  We were able to be with Isabella when she died and said goodbye on our terms, in our house.  I can’t imagine what it is like for those parents who’ve had to bury their children after a sudden and tragic death, without having that closure.

I know that it’s supposed to get better over time, but a part of me doesn’t want to let go, doesn’t want to forget the pain and hurt because when that happens, a little bit of Isabella will also disappear.

Thanks for reading.

#IsabellasPurpleFriday

So Annalise told me that she organized something on Instagram where she asked all of her friends to wear purple today in honor of Isabella.  She got a really nice response, and I’m really proud of her to do that.  So if you’re on Instagram, check out #IsabellasPurpleFriday to see all the pictures.

Waterbugs and Dragonflies

It’s difficult to try and describe death and the transition from life to death to children.  Julianne found the parable below which beautifully describes this.  We read it to Isabella and the kids on the night she died, and I also read it at Isabella’s funeral mass.  As I mentioned at the mass, the story has provided us comfort and hopefully, it does so for you.

As a side note, today we went to visit Isabella’s grave.  While we were there, we saw a bunch of dragonflies flying around, and I couldn’t help but think of this story.

Waterbugs and Dragonflies

by Doris Stickney

Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in a while one of their colony seemed to lose interest in going about with its friends. Clinging to the stem of a pond lily, it gradually moved out of sight and was seen no more.

“Look!” said one of the water bugs to another. “One of our colony is climbing up the lily stalk. Where do you suppose she is going?” Up, up, up it went slowly. Even as they watched, the water bug disappeared from sight. Its friends waited and waited but it didn’t return. “That’s funny!” said one water bug to another. “Wasn’t she happy here?” asked a second water bug. “Where do you suppose she went?” wondered a third. No one had an answer. They were greatly puzzled.

Finally one of the water bugs, a leader in the colony, gathered its friends together. “I have an idea. The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why.” “We promise,” they said solemnly.

One spring day, not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up he went. Before he knew what was happening, he had broken through the surface of the water, and fallen onto the broad, green lily pad above.

When he awoke, he looked about with surprise. He couldn’t believe what he saw. A startling change had come to his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings. The warmth of the sun soon dried the moisture from the new body. He moved his wings again and suddenly found himself up above
the water. He had become a dragonfly.

Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. By and by, the new dragonfly lighted happily on a lily pad to rest. Then it was that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were, scurrying about, just as he had been doing some time before. Then the dragonfly remembered the promise: “The next one of us who climbs up the lily stalk will come back and tell where he or she went and why.”

Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water. “I can’t return!” he said in dismay. “At least I tried, but I can’t keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I’ll just have to wait until they become dragonflies too. Then they’ll understand what happened to me, and where I went.” And the dragonfly winged off happily into its wonderful new world of sun and air.

A Sea of Color to Bid Farewell

Julianne and I are extremely grateful and humbled by the incredible turnout that we had for Isabella’s wake and funeral.  We had visitors from all over the country come by to say their final goodbyes to our sunshine girl.  We were standing and greeting visitors at the wake from start to finish (over four hours!), and although our feet and backs ached afterwards, it was well worth speaking with everyone.

We are also glad that we asked everyone to dress in bright colors because it was really neat to see the sea of color at both the wake and the funeral mass.  I’m sure Isabella was looking down and appreciated the colors that we all wore – so much so that Isabella treated us to a double rainbow yesterday!

Isabella treats us to a double rainbow at the Marvin family picnic on 9/30/12

For those of you that missed the services, here are a couple pictures and a video of the lantern launch that we did at the cemetery to honor Isabella.

We handed out these butterflies to all the visitors

Isabella was surrounded by lots of pretty colors and flowers

Nathaniel sits and watches Isabella’s video.  We also had a bunch of posters with pictures of Isabella throughout her life.

We displayed these two pictures of Isabella.  One was when she was bald and going through treatments and the other while she was in remission.

Isabella’s art work greets the kids at the children’s sign in table.

Our family poses for one last time with Isabella.

Isabella being brought into the church before the funeral.

Annalise says farewell to Isabella, Hunger Games style!

Friends and family lay their flowers on Isabella’s casket.

We spruced up Isabella’s temporary marker with some extra flowers.

Special thanks to the Catino family for getting us the lanterns on such short notice!

Do You Have Pictures of Isabella?

If you do, please click the link below to upload them to a shared folder that I created.  These photos can be from this weeks services or from anytime.  I’m sure there are plenty of photos of Isabella that we haven’t seen and we’d love to see them.

http://sdrv.ms/R5CWKi

September 21, 2012

Author’s note:  This blog post will describe Isabella’s last days.  It will be lengthy and portions will be difficult to write (and read).  Some content may be more personal than I would normally put (especially some pictures that may be upsetting to some).  But just as with the rest of the blog, I write not just to keep you informed, but for myself in that it is both therapeutic and allows me to not forget.

Because of this, I decided to split this post.  To read the entire post, click the title above.

Isabella’s Video

Here is the video that we played at Isabella’s wake displaying lots of highlights from her life.  It’s pretty lengthy at an hour and ten minutes, so you may want to grab some popcorn (and some tissues!)  Youtube may also take it down at any time since it does contain a bunch of commercial music.

Isabella Laid To Rest

Today, we laid our little Isabella to rest, amid a sea of bright and beautiful colors.  It has been an utterly exhausting week.  Give me a couple days and I’ll post something about the services.  In the meantime, enjoy this photo of a lantern that we lit at the cemetery in her honor.

UPDATED: Wake and Funeral Arrangements

Update:  Reception information added below.

There can’t be much worse things to do than to plan the funeral for your child.  As Julianne and I sat with the funeral director, I thought how unnatural it is to be looking at a casket so small.  And yet, there was a conflicting feeling I had of how beautiful the casket is and how the dress that we have picked out for Isabella would look so nice in it. 

As we toured the cemetery, again, I had conflicting and polarizing feelings as we tried to pick the perfect spot where Isabella would spend forever.  The lack of sleep and appetite caused waves of nausea and I just wanted to go home.  I just wanted to hug Isabella one more time.

Anyway, here is what we finally settled on.  I do hope that as many people as possible can come out and help us remember Isabella.

I should also note that we are encouraging everyone to dress in bright and vivid colors to the activities.  As you know, Isabella loved the rainbow’s colors (especially purple), so let’s shower her with colors.

Wake

The wake will be held at Collins Funeral Home, 92 East Avenue, Norwalk, CT on Wednesday, September 26 from 4:00pm to 8:00pm.  I would like to add that we are planning an open casket because we wanted everyone to see how beautiful Isabella is for one last time.  Parents may want to prepare their children.

Map:  http://goo.gl/maps/g7bQ3

Funeral

The funeral mass will be held at St. Thomas the Apostle Church, 203 East Avenue, Norwalk, CT on Thursday, September 27 at 10:00am.  This was the church where Isabella was baptized and had her first communion.

Map:  http://goo.gl/maps/B0JUJ

Burial

The burial will immediately follow the mass at Fairfield Memorial Park, 230 Oaklawn Avenue, Stamford, CT.  Roneil’s dad, grandmother, grandfather, and uncle are also buried here so it’ll be nice that she’ll be with other family.

Map:  http://goo.gl/maps/b3BB0

Reception

A family friend has graciously offered their house to host the reception, which will immediately follow the burial.  The reception will be held at 61 Cove Ave., Norwalk, CT.  All are welcome.

Map:  http://goo.gl/maps/uNOoB

“We Have All Been Touched”

Author’s Note: We are overwhelmed by the outpouring of support from everyone.  Please check back over the weekend for details on services for Isabella.  In the meantime, please enjoy the following post which I was planning on posting last night.

We heard from Marvin school officials that they really wanted to do something for Pediatric Cancer Awareness month to raise awareness for pediatric cancer and to also honor Isabella in some way (ed. note: They had already planned to do something for Isabella before she passed away.).  To raise awareness, they distributed gold ribbon pins to everyone and they had all the children color a gold ribbon and provide examples of Courage, Caring, Hope, and Love.  This was all part of the “We Have All Been Touched” campaign.

To honor Isabella, the school is selling purple butterflies (Isabella’s favorite color, of course!), which you can customize any way you want and these would then be hung all over the school.  Proceeds from the sale will be donated to help fund research to find a cure for pediatric cancer.

Last night, Marvin had their open house night and it was our first chance to visit the school and we also decided to bring Isabella.  When we got to the school, we were not prepared to see the amazing display of gold ribbons and purple butterflies that decorated the hallways.  I wish we had the time to sit and read every one of the children’s writings because many of them were poignant, insightful, and downright sweet.  Some brought us to tears.

We are forever grateful to the Marvin community which has provided so much support throughout the years.

Goodbye Isabella

At 5:15pm today, Isabella took her last breath. She died comfortably, surrounded by her family and lots of love. May an army of angels lead her into heaven.

Please Pray for Isabella

She is not doing well right now. Please pray for her and us that we have the strength to get through this.

What Makes You Beautiful

As part of pediatric cancer awareness month, the Aflac Cancer Center in Atlanta created the video below. It includes a bunch of kids, nurses and doctors singing to One Direction's "What Makes You Beautiful".

Pass it on! :)

Pediatric Cancer Awareness Month

Nathaniel gives his big sister a kiss.

Faithful readers of Isabella’s Fight are painfully aware of pediatric cancer and the real effects that it has on a family.  Unfortunately, overall awareness is relatively low, especially compared with other adult cancers.  Fortunately, this summer, President Obama signed a bill that gives the pharmaceuticals some incentives to develop some newer and better treatments for our children.  What they develop remains to be seen, but it’s an improvement, considering that a measly 1% of research goes to children, which is disgusting.

Please take a minute to review some of the childhood cancer facts in the poster below (borrowed from Gold: The New Pink Facebook page).  Four years ago, we never thought we’d be in this situation.  Cancer was what happened to other people.  But here we are.

Back to School - 2012

I remember when I was a kid, back to school day was always a dreadful day which meant the end of the carefree summer days.  No more playing outside until it was dark or staying up late.  It meant getting up early and doing homework.  For some odd reason, maybe it’s Julianne’s influence on them, but the kids actually have been looking forward to going back to school, which I guess is a good thing.  In Nathaniel’s case, he’s super excited since he’s starting kindergarten, so I’ll give him a pass this year. (Of course, it’s in the back of my mind that Isabella was diagnosed two months after she started kindergarten….)

So in recent years, back to school day has been a pretty exciting day in the Icatar household.  But this year, the day will be bittersweet.  Although Nathaniel’s enthusiasm and excitement over riding the bus for the first time will be unmatched, Isabella will not be able to join him or Annalise in going to school.

Isabella has been assigned a teacher, but she will probably never spend another day at school.  Oh she may get a visit to the classroom for a special day or two, but she won’t get to participate in class or socialize with her friends.

I was looking at pictures from the previous years’ back to schools, and just seeing the dramatic decline from last year is shocking.  Where last year Isabella was able to walk and talk (albeit with a little difficulty), this year Isabella can’t move any part of her body.  Isabella can also no longer eat on her own, so all of her nutrition is pushed through a tube that goes in her nose and into her stomach.  We haven’t heard her speak in months or smile or laugh in weeks.  Her only form of communication now is she will open her eyes a little wider to answer “yes” to a question, and even in recent days, sometimes she doesn’t answer.  At times, she still struggles to breathe, so we need to constantly reposition her and swab out the mucous in her mouth to make sure her airways are optimally cleared.

Yeah, this Fall is a lot different than the previous years.

Here are a couple pictures from some of the back to school days from better times.

Isabella gets on the bus for the first time to go to kindergarten!

Annalise walks Isabella into school for the first day!  This is one of our favorite pictures of all time.

Isabella gets ready to work on her first day in kindergarten.  We didn’t think much about her crooked smile at the time.

This is Isabella’s first day of school for first grade.  She had just completed an intensive course of radiation in Boston, which is why half of her hair is gone, and amazingly only missed the first couple days of school.

Annalise and Isabella look out of the school bus on their way to school.

Annalise, Isabella, and Nathaniel wait at the bus stop.  Isabella started second grade.  Note that even though he’s not going to school yet, Nathaniel insisted on wearing a backpack.

Isabella has a big smile for grandpa as they wait for the bus.

Isabella sits at the bus stop with mommy and grandpa.  Isabella’s classmate, Sebastian, and his sister sit next to them.  Sebastian died earlier this year after his own battle with cancer.

Isabella starts the third grade last year with her friend and aid Kim.

Isabella has a big smile for her third grade teacher.

UPDATED: Isabella’s 9th Birthday!

Updated with today’s pictures!

I really liked what I did last year when I posted a bunch of pictures of Isabella for her 8th birthday, so I thought I would do the same this year.  Although looking at these pictures makes me sad, especially when I look at Isabella’s debilitated state today, I also look back fondly on better days and smile.  So I hope they make you smile and join me in wishing our special girl a happy birthday and that our wish for a cure comes true.

Day 1! August 10, 2003

1st Birthday

2nd Birthday

3rd Birthday

4th Birthday. I’ve almost forgotten how cute she was with her pigtails!

Enter video caption here

5th Birthday. Three months later, Isabella would be sent to NYU to have a tumor removed from her head.

6th Birthday. Isabella was going through radiation treatments during her birthday.

Enter video caption here

7th Birthday. We were at Camp Sunshine during her 7th birthday, and the entire camp sang her happy birthday!

Enter video caption here

8th Birthday

Enter video caption here