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Time and Milestones

Yesterday, was the 4th anniversary of the day we heard those horrible words “I am sorry but….”   The day that the world of STUPID childhood cancer entered our lives.  Much of the day is a blur, but there are some images that are still so vivid.  Meeting the oncologist for the first time, walking up to the Bone Marrow Transplant Unit  the place Alexander would spent most of the next year.  Watching him being sedated for his first of many MRI’s. Having Richard break down in tears as we left him in the MRI.   Yesterday we participated in a Blood Drive in memory of Alexander and several other children whose lives were cut short by STUPID cancer.  It is run by another couple whose Daughter, Alexandra, died 6 years ago.  163 pints of blood were collected.  This couple organizes 2 blood drives a year, and so far they have helped collect 1,912 pints of blood!  It seemed appropriate that on the anniversary of Alexanders diagnosis, we would be at a blood drive, as he received over 35 BLOOD transfusions ( I may have lost count of some of them!) and over 58 Platelet Transfusions.

Last night we attended a fundraiser called Cure Me I’m Irish.  It is run by a group called BeatNB  Its purpose is to raise money for Neuroblastoma Research. Thanks to this group, as well as some other PARENT led groups, they have been able to fund a trial for a new drug for neuroblastoma. This drug has been having some excellent results.  The doctor leading the research was there and spoke to some of us prior to the event.  Thanks to these groups, they have been able to open up the next phase of the study in just 1.5 MONTHS, rather than 1.5+ YEARS.  It is sad really, they only needed about $200,000.  Sure, to you and me, that is a heck of a lot of money. But if you think about it – that is also about 5 seconds work of a commercial for the Super Bowl.   Really not a lot of money then.   Again, it seemed only appropriate that on the anniversary, we would be at a fundraiser for the very disease that took his beautiful life.

April 1 will mark 3 years since we said goodbye to Alexander.  Last year we went away for a few days.  We were thinking about doing that again this year, but now I am not so sure (partly because packing up us and two little ones is a LOT of work, plus all the things we have to bring with us!!)  So what we will do we do not know yet.  But as in the past, the time leading up to that day is becoming very difficult.  The day itself has not been too bad the last two years. But each year is different.

Our Daughter Julia was born 1 week before what would have been Alexander’s 3rd birthday.  So, as she has grown up we have seen where she was at the same time Alexander was.  I found it very hard to truly “enjoy” her until March 8th of last year.  Once she reached the age he was when he was diagnosed, I was able to breath, relax and enjoy her.  That was also when I started to learn how to be a parent to a HEALTHY child.  Our lives were not centered around visits to the hospital, she had regular visits to the pediatricians office.  Alexander never went back after his 6 months check up, so we had no clue what to expect.  She had a first birthday that was NOT followed by 27 days in the hospital (including time in the PICU  She learned to walk,  and talk. She has a ways to go with the talking, but I am sure once she gets it she won’t stop!  We are having fun watching her play make believe with her dolls and her kitchen.  We take her to the playground in the nice weather, and we recently found an indoor play place that she loves.  She loves to climb and go down the slide.  She is learning to eat with a fork and spoon and doing better every day feeding herself. She is no longer using a bottle, and has the straw down pat (when she isn’t pulling it out of course!)  And on March 26th, she will be 21 months 4 days old. She will be older than Alexander ever was.

I am not really sure how to feel about this.  I am so sad that Alexander never got to be any older.  Sad that he missed out on all these things Julia has learned. His life was cut short in a million different ways.   I have several friends whose children are now turning 5, the age he would have been this year.  Starting to make plans for kindergarten.  So many milestones that he missed out on.  But, I know I can’t dwell on that.  I have to be thankful for those 21 months 3 days that we DID have with him.  While he was so sick, he had so much to give to everyone he encountered. There isn’t a week that goes by that someone doesn’t post an Oreo Cookie story or recipe to my Facebook page.  It makes me smile every time I see them, because I know he is being thought about and not forgotten.

As we hit this final “milestone” with the age comparison between Alexander and Julia, I know it will be sad in some ways.  But, in others, it makes us smile to see all the wonderful things Julia is doing and learning each day.

AlexanderJohn

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What if you were hit by a bus?

Often when I hear people say, they are going to “put off” an activity until later, or make a huge financial decision (ie buying a house), I will ask them “What if you were hit by a bus tomorrow”?  I usually get stares of course, but what I am asking them, is to really THINK about the choice they are making.  Can they REALLY afford that item – do they have a “back up” plan, if they are “hit by a bus”.  What if you put that activity, trip visit off, and you are hit by a bus, and you can’t do what you had “planned” on doing?

Now you may be saying “well, I will just look both ways before crossing the street”.   Good idea of course, but what if the “bus” is being driven by a drunk driver? Or it is a sudden heart attack? Or it is STUPID cancer?

We were hit by a bus on March 8, 2010, when Alexander was diagnosed with STUPID cancer.  That was by far the last thing on our minds when we sat in that ER.  But, there we were, hearing those words “I am sorry but…”  With in the last 2 years, I have gone to 4 funerals or services for people who died unexpectedly.  They were fine one day, and the next they were gone. Their families forever changed.  I remember once I thought I saw a friends mom at Panera – I thought about going to say hello, but she with with a group of ladies, and I didn’t want to interrupt.  I thought about stopping by to visit her at home, but I never did.  She died suddenly while playing tennis.  How I wish I had stopped to say hello to her!

I have heard many people say, they “can’t” take time for family or friends because they are too busy with work.  These people are not brain surgeons, they are ordinary people, doing ordinary jobs.  They are working so hard, and are more often than not underappreciated by their workplace, yet, they just keep working hard, and giving up their own lives and familes for this “job”.  I know people HAVE to work, because you have to afford to live.  But MANY people COULD cut back on their lifestyles, and work less and enjoy their FAMILY more.  Some people, just don’t know how to say NO when they are asked to work extra – they will just go above and beyond, and really get no reward for their efforts.

I am not saying that you should just quit your job, and live like today is your last day, because that would be foolish. But, I am asking are you READY for this to be your last day?  Consider these things:

1.  Do you have a Will?  EVERYONE needs a will!!  If you don’t have one, that the government will get your assets first!

http://www.gosselinlaw.com/FAQ/Probate-Law.shtml

If someone dies without a will, what happens?

  • When a person dies without a will, the Probate court must decide how his or her assets are to be distributed. The distribution of property is governed by Massachusetts law, under which the decedent’s next of kin usually inherit the property. The major pitfalls of dying without a will are:
    • the decedent’s personal wishes regarding who receives particular property may not be fulfilled
    • the decedent did not take maximum advantage of tax-saving mechanisms.

    The same results can apply when someone has left an invalid will. In order to probate the estate of a relative who died intestate, you must generally obtain authority from the Probate Court to distribute the decedent’s property, depending on the type of property left in the estate.

see also:

http://www.nolo.com/legal-encyclopedia/intestate-succession-massachusetts.html

2.  Who will take your children if you were to die?   Maybe you want your sister, but you would NEVER want your brother.  If both parents were to die, a judge can decide what will happen to your children. Be sure to have it in WRITING.

3.  LIFE INSURANCE – this is a NEED and not a WANT.  Unless you have medical issues, getting term life insurance is not that expensive.  You may have it with your work, but you need to have it OUTSIDE of your work too.  Again, getting “hit by the getting fired bus”.  Term is the ONLY way to go – whole life is not worth it!
See this page for an explanation :  http://www.daveramsey.com/article/the-truth-about-life-insurance/

You need to also have Life Insurance if you are a Stay at Home Parent.  If you were to die, the other parent would need to hire a cook, a nanny, a maid, a driver and a nurse.

4.  Do you have an emergency fund of 3-8 months of living expenses?   When you are hit by that bus, and can’t work, you will still have those bills to pay!  You won’t build it up overnight of course, but you can do it!

http://www.daveramsey.com/article/build-an-emergency-fund-fast/lifeandmoney_saving/

5.  If you are in debt GET OUT by taking baby steps!

http://www.daveramsey.com/article/recession-proof-yourself/lifeandmoney_economy/

6.  Get on a BUDGET!!!

http://www.daveramsey.com/specials/mytmmo-gazelle-budget/

(can you tell I am a Dave Ramsey Fan?)

Okay – enough of my rant for tonight!  Look both ways before crossing the street, be ready to be hit by a busy, ENJOY your life, and ALWAYS put your FAMILY first!

I will end with the final words of Cole, a boy we knew from the hospital -

SMILE – BE HAPPY!!!!!! 

smile1

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Happy New Year

Another year is upon us.   At this time, many people reflect on the year that has gone by, and make plans and promises for the year ahead.

A friend recently asked, “why does it take December for us as mankind to be collectively joyful and to act the way we are supposed to to our fellow man?”  I replied that I felt the same way with people putting out daily things they are Thankful for during the month of November.  Are they not thankful other times of year? 

I know that times can be tough for many people. Just reflecting on what my family has been through in the last 3 years is more than some people get in a lifetime.   However, despite all those things, I have tried to find things to be thankful about. When Alexander was in treatment, I was thankful we didn’t have other children to worry about at home.  We could give all of our time and attention to him.  I was thankful that Richard had a job that allowed him to work only weekends so I could have breaks from the hospital during the week.  I was thankful that we did not have to worry about losing our home.  And looking back now, I can even find things to be thankful about on the day he died.  It was a horrible day yes.  But Richard and I were able to be with him and hold him as he went to be with the Angels.  My mom and Richard’s mom were also able to be with him in his last moments.  Many families do not have the chance to be with their child when he/she dies.  They can’t be there to say goodbye.  We were able to do that.

One thing I am going to TRY to do in the new year is to move on.  There were some people that just weren’t there for us the way I would have wanted them to be and I am still very angry about that.  I am going to work on moving on from that anger, forgive, accept that, that is how they are and they will not change.  I have to focus more on those that WERE there for us, and be thankful for that.

So my challenge for all of you in this new year, is to try to find something to be THANKFUL for every day!  Years ago, Oprah had encouraged people to write out a “Grateful Journal”.  You can find nice Journals or even just a note-book many places – even the Dollar Tree!  Some days you will be able to fill up a whole page with things you are Thankful for.  Other days, it may be a struggle to find just one. But even if it is just “I was able to get out of bed and face the day” then write that.  Maybe you could have your family say one thing they are Thankful for each night at dinner.

Wishing you and your family a very happy 2014.

 

 

 

 

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A Time to Give

Last week we had Black Friday.  Tomorrow is Cyber Monday.  Lots of ways to spend your money on STUFF.

But wait – save some of that money tomorrow, for GIVING TUESDAY!!!!

Many people choose the end of the year to make their charitable donations.  That is great, but there is always a need ALL year long. Some people say they can’t give, because of how much they are spending on Christmas Presents.  To those I would ask – do you or your loved ones really need so much STUFF?  I know I don’t.  This year I turned 40, and I asked that from here on out I do not want Birthday Presents – but rather have people make a donation in my name.  There are so many out there that need so much more than I do.

I wrote a blog previously on being Generous.  I have some other groups I would like to add to the list I had put in that post:

https://www.floatinghospital.org/Giving-Support/Give/Special-Giving-Opportunities.aspx

The Alexander the Great Fund for Family Support in Pediatric Hematology/Oncology

The Alexander the Great Fund for Family Support was established by a grandmother in tribute to her grandson Alexander John Whipple, a pediatric cancer patient who spent much of his life at Floating Hospital for Children. Alexander’s grandmother recognized that while extended family members, such as grandparents, aunts/uncles and close friends, form a vital support system for hospitalized children and their parents, expenses relating to ongoing hospital visits can be a financial burden. The fund provides assistance to extended family members for out-of-pocket expenses incurred while visiting hospitalized pediatric cancer patients, including transportation, parking and meals.

Sophia’s Families First Fund

This fund was established by Diane Donnarumma, Sophia’s mother, in gratitude for Sophia’s care as a patient in the Floating Hospital’s Children’s Cancer Center. Recognizing the many non-medical expenses that patients and their families face, Diane set up this fund to provide assistance to other families with children being treated for cancer.

also at:  http://sophiasfund.com/donate.html     (check out Sophia’s Friends!)

Fitzgerald Cancer Fund

Helps families of Children with Neuroblastoma

http://www.fitzgeraldcancerfund.org/

Beat NB

Raising funds for Neuroblastoma Research

http://beatnb.org/

Camp Sunshine

http://campsunshine.com/

A camp for children fighting STUPID cancer and their families.  They also have two bereavement weekends for those that lost their children.

Hole in the Wall Gang Camp

http://www.holeinthewallgang.org/Page.aspx?pid=471

One of my cousins children have been able to go to this camp several times, and they tell me it is a wonderful experience.  Some of the volunteers came to Floating Hospital and hung out with the kids there.  One of them, did this for Alexander on his window when he was in for his bone marrow transplant.  They would do this for kids that were going to be in the hospital for a long stay.

IMG_0071

Kai’s Village

http://kaisvillage.org/

I met Kai’s mom at a conference this Spring.  We were assigned to our lunch table based on the groups we were with.  It just happened that at this table, 3 of us lost children to STUPID cancer, and one person had a child that beat it!

Community based support for families facing the challenges of disability and serious illness.
We bring the village to you.
Mission
Kai’s Village brings the Village to those who need it.

Our goal is support members of our community who are affected by disabilities and serious illness by improving the quality of life for them and their families. Kai’s Village will help with meals, household tasks, childcare, and other stresses that families caring for a loved one should not have to worry about.

Make Some Noise: Pediatric Cancer Research Foundation

http://www.makenoise4kids.org/index2.php

This group was started by a 12 year who was fighting STUPID cancer and realized there needed to be more funding.   I helped start a Boston Chapter.  While I resigned as President because I was pregnant (and it is sadly in limbo right now) it is still a wonderful group!  While I think research is of course important, if you give to this group, please consider directing funds to the Angel Quilt.  The Angel Quilt is a beautiful yet very sad display of Children that have died from STUPID cancer.  They took the quilt on a cross country tour this summer, and they would like it to be in more places.  We were able to see it 2 years ago when it came to Boston.  It has since grown, and includes many of my friends children now.

alexander's spot Angel Quilt us with Alexander and Malcom - founder of the group

 

Flashes of Hope

http://www.flashesofhope.org/

This is a group we were able to use twice. They come to the hospital and take photos of kids fighting STUPID cancer.  They bring someone to do hair and make up for mom.  They take beautiful professional photos, and then print up two 8×10, and the rest in 4×6, and give them to the families for FREE

 

Alexandren Whipple Alexandren Whipple Alexander Whipple 17

Another idea I have for you.   Girl Scout Cookie time is just around the corner.  It is funny how it happens during the New Year when people are trying to “eat healthier” and they arrive during Lent, when people have given up sweets!  Well, here is an idea for you!  Buy a few boxes of cookies, then find some place to DONATE them to.  My friend in Michigan has done collections for the local homeless shelter, and the Children’s hospital.  My local friend offered that option, and then donated them to the Oncology Unit at Floating Hospital.  I brought a bunch to the Fisher House, a place for Military to stay while they are receiving treatments.  There are many places I am sure you can think of that would love cookies!

Speaking of cookies!  Many people have a “Cookie Swap” during the holidays.  Make yours COUNT this year!  Cookies for Kids Cancer is another pediartic cancer research foundation  GLAD is going to donate up to $25,000 for bake sales and other cookie events held!  Each cookie at a cookie swap is worth $1 !!  http://blog.cookiesforkidscancer.org/2013/11/the-glad-match-is-back/

http://register.cookiesforkidscancer.org/

I am sure I could go on and on – but I will leave you with these for now to ponder!

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Halloween and PTSD

A lot of my Angel Mom friends have been posting this week about the stress around Halloween coming up this week.  It is a hard time for them, because it was their child’s favorite Holiday and they wonder what they might have been.  Or as one of my friends wrote on her blog “She could have been anything she wanted. 3 is the perfect age to be anything you want. If only she could have been 3.

Because Alexander was so young, we did not take him out for Halloween, although he did have some costumes.

His First Halloween

IMG_0021  halloween 2009

 

 

Alexander was actually HOME from the hospital on Halloween!  We did still put him in a costume, and took him to two neighbors houses to say hello

 

 

DSCN0846

 

The next day he had an MRI – so we thought we would “help” them find everything they needed.  Richard thought it would be funny to put the bucket on his head.  He was very good at balancing it!

 

pre-mri 11.1

 

Some of my (cancer family) friends talk about how they suffer from PTSD.  I have written about that in the past too.  http://thecookiegal.wordpress.com/2012/01/31/ptsd/

It is a terrible thing – you have a child that was so sick, then died – you worry about your other children getting sick and dying also. One of my friends, whose son was a twin – had a really hard time last week, because her surviving son was sick and was showing some of the same “signs” as her son that had died!  I know that even with Julia I have had some issues worrying about her!

About a month ago, she fell and broke her leg!  I was coming in the front door, holding the door and a package, and she decided to take a step out the door!  We took her to the doctor and had an x-ray.  The next day she had to get a cast.  We went to the Floating Hospital for Children where Alexander was treated.  Orthopedics was one of the few departments that Alexander did NOT see!  I choose that hospital over one of the other Children’s hospital, because it is familiar to us.  I don’t have issues going back there as they took such wonderful care of Alexander (although I do wonder, if he had died there if I would have issues)   She is getting her cast off on Friday, November 1st.  She will need an x-ray. I thought about putting her in the skeleton costume for fun.  Then I realized that it was 3 years ago, on November 1st, that we took Alexander in the same costume to the hospital for his MRI.  Yup….there comes the PTSD.

 

 

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1st Annual Gold Tree Lighting in Woburn

We had an excellent turn out for our First Gold Tree Lighting in Woburn!  I know many of you could not make it, so he is a link to an article that was written as well as a video of the evenings events.  

I hope to be able to post a link so you can hear the show I did on the Radio too.

http://woburn.patch.com/groups/around-town/p/woburns-childhood-cancer-event-served-to-give-the-kids-a-voice

http://74.92.20.125/Cablecast/Public/Show.aspx?ChannelID=3&ShowID=6525

http://www.wickedlocal.com/woburn/features/x1803289982/Woburn-goes-gold-for-childhood-cancer

This picture is Mia (Left) Chloe (Right)  Mia was having her last round of chemo as Alexander was having his first.  She is doing AWESOME!  Chloe was born with a brain tumor, she is now 3 years old and doing great!  Both rock stars!

chole and mia

IMG_9405 IMG_9412 IMG_9416

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September is Childhood Cancer Awareness Month

alexnder september

 

Today is the start of Childhood Cancer Awareness Month.  Until Alexander was diagnosed I was unaware of this.   It is not as well none as Breast Cancer Awareness Month, but there are many people who are trying to change that.

My Friend Tony, also a dad to an Angel is working hard at this.  Before his son Cole died, he promised him he would do something “BIG”. The past year, he has been working hard to get every state to “GO GOLD”  Right now there are 30 that have pledged to declare September Childhood Cancer Awareness Month!
He and others have also worked to have places LIGHT UP in GOLD at some point in the month.  Here is a list of what will be happening!

2o places that will be lighting or displaying gold in the U.S.A.

The Prudential Building, The Zakim Bridge, The Atlantic Wharf, Woburn City Hall, Sandown Town Hall, Fenway Park, The GM Headquarters Building, Fort Worth City Hall, The Chesapeake Building, Sundance Square, Houston City Hall, The Peace Bridge, Niagara Falls, Jacksonville City Hall, The Freedom Tower, The Ben Franklin Bridge, The Battleship New Jersey, The Duke Energy Center Building, The Liberty Bridge, The Scope Arena Fountains.

30 states that have declared “September is Childhood Cancer Awareness Month”

Massachusetts, New Hampshire, Maine, Illinois, Iowa, Nebraska, Texas, New Jersey, North Carolina, Pennsylvania, Kentucky, Wisconsin, Oregon, South Carolina, Oklahoma, South Dakota, Maryland, Tennessee, Virginia, Rhode Island, Washington, West Virginia, Missouri, Utah, New York, Alabama, Mississippi, Michigan, Arkansas, Montana.

20 Places + 30 States = 50 Reasons to “Smile, Be Happy!”

If you are on Facebook, you can follow his page:

https://www.facebook.com/yellowandgoldforcole

My city of Woburn will be GOING GOLD on September 5th.

7:00 Acoustic music with John Murphy

7:30 pm – Speakers: Mayor Scott Galvin, Tony Stoddard & Nancy Whipple.

7:45 – Approximate time of lighting (or when dark).

Come show your support, whether you have a child that was affected by cancer, or know someone who has. Woburn would like to spread awareness. With Awareness, comes funding, and with funding comes research. With research comes a cure.

We welcome your entire family to join us! Bring your girl & boy scout troops! Please invite your friends and spread the word. Wear your Gold, make a sign to spread awareness, and remember a loved one.

GPS address: 10 Common St, Woburn, MA 01801

 

A few weeks ago, I wrote an e-mail to Dan Rea, who hosts “Nightside” on WBZ 1030. I asked him if he would be willing to do a show, or even just part of a show on Childhood Cancer Awareness. HE called me, and said YES!!!! Next Tuesday, September 3, I will be on the 9pm hour along with Alexander’s Oncologist! He said he gets all sorts of requests, but that Alexander’s story really moved him! For those friends that are outside of the Boston Area, do not fear – there is an App for that! Download one of the many Radio apps, and search for 1030. I think you can also listen online as well. I

http://boston.cbslocal.com/show/nightside-with-dan-rea/

The ultimate hope is that one day, the GOLD Ribbon will be as recognizable as the Pink Ribbon now is for Breast Cancer Awareness.  We know it won’t happen over night, but one day at a time it will be done!!
cancer awarness
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School Days

This week my news feed on Facebook has been filled with people commenting about their kids going back to school.  They seem to fall into three categories:

1.  Excited for their children to be going back – and talking about the kids excitement.

2. “Sad” because their kids are “growing up to fast” and moving on in years.

3.  Very sad, because their children are no longer living, and moving on in grades.  Some sad, because their younger children are now reaching a grade that the child that had died never did.

When Alexander was born I always felt I would have fallen into the the first category.  I remember being so excited for the first day of school.  Getting a new outfit, school supplies, the picture at the front door.  I looked forward to the day Alexander would get to go to school to play and learn new things.  I don’t think my parents were ever “sad” that I was growing up too fast, and if they were they hid it well.
That is one category I just don’t understand – perhaps because Alexander never got to grow up.   Shouldn’t we be HAPPY our children are growing up, are healthy and learning new things?   Sure, I miss the snuggly times we had when Julia was a new born, but it is so great to see her learning new things.  I love watching her play with her toys, figuring them out.  Each day she seems to learn something new.

I wonder if in a year or two I will fall into category number 3, when my friends children that are the same age as Alexander start going to school.  Sometimes I do wonder now, what he would be doing, what he would be learning in preschool.  but, I have also found I can’t focus on that or I will just get to sad.  However, I do understand the sadness that my friends that had older children that were already in school have.

So for those that are sad because their kids are going back to school – don’t be – they are just growing up the way they should be!  Celebrate this!  Take those pictures at the front door, and take them out for an Ice Cream when they get home, and listen to all the things they learned that day. One day, not too long from now, they might not be so excited about going to school.

For those that are sad because their children are gone – take a LOT of deep breaths – take your living children out for ice cream, and if you don’t have other children, take yourself out for ice cream.  Praying that these days will be bearable for you.

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Missing Alexander

I have been down the last couple of days – missing Alexander. It isn’t that I don’t ALWAYS miss him, but some days and weeks are harder than others.

This weekend we went to a wedding in NH.  It was very nice, but in the car there and back, I kept looking back at Julia and just wishing Alexander was there.  We didn’t go to Story Land or Santa’s Village, because I think Julia is just a little too young for it, but how I wish we could have been there with Alexander AND Julia!  I know he would have loved it, and with him there I would have been okay having Julia there too.

We were out to dinner, and they had a kids menu with crayons.  I showed them to Julia and she seemed pretty fascinated by the crayons, but of course once I gave them to her she ate them!  Alexander never got to use crayons – he was too little. Maybe he could have near the end – but we never did even try them.  I don’t know why.

Julia loves the swings at the park.  Alexander never went on the Swing. He was sick at 8 months old, and it was still winter.  Then, he was in the hospital for most of the summer – then he was on TPN 24 hours a day, so he couldn’t really swing with that, then Winter again, then he was gone.  I am sad for him that he didn’t get to have that fun activity in his life.  He missed out on so much.

STUPID cancer robs so many children of the simplest things in life – it SUCKS!!!!

 

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Sharing another Blog

Another grieving mom posted this blog.  It is very well written.

http://facetsoflifeafterloss.blogspot.com/2013/05/exhausted-mom-meets-grieving-mom.html?spref=fb&m=1

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