thecookiegal

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Enjoy every moment

When Alexander was first born, I thought he was kind of boring.  I mean, all he did was eat and sleep.  As he got holder, he did start making little cute noises.  And then he became a little active – rolling around from his back to his belly.  Then he sat up, and was playful.   Then he got STUPID cancer.   At first he was just so sick.  He didn’t do much again but sit with us or in his hospital crib.  But after a little while, he did start to become playful again.  But he never crawled or walked (although looking back I am kind of glad about that now, because he was on TPN <IV Nutrition> for up to 24 hours a day!  chasing a little boy with an IV pole or bag would have been a real adventure!)

As you know, Alexander died when he was just 21 months old.  He never got to be 2.  He never went to pre-school. He will never go off to High School, or college or get married.   He is forever 21 months.

I get so upset when I hear people say things like “Oh why is my baby growing up?”  or “I wish they could stay this young forever”.   Deep down, I know they are just being nostalgic, but really, I just want to scream “JUST BE F-ING GRATEFUL THAT THEY ARE GROWING UP!!  ENJOY THE FACT THAT THEY ARE GROWING UP.  YOU WOULDN’T WANT THEM TO BE FOREVER THAT AGE!!!”

When Alexander was born I imagined a life for him – a future, things we would do as a family.  Those hopes and dreams are gone now.   With the girls, I try not to think to far ahead – part of the PTSD I suppose.  But instead, I am just enjoying every day and every change with them.   When they were babies, I again thought they were kind of boring. Although, after we had Elizabeth, I did enjoy those quiet moments of rocking her to sleep, after a day of running around with Julia.  And there are times, I wish that I could just rock them to sleep and not have them be wiggle monsters.   But mostly, I am just trying to live in the moment, and enjoy whatever moment that is.

Right now I am enjoying watching Julia’s imagination grow!  It is fun to see the world through her eyes.   Last week we were baking cupcakes.  While we were waiting for them to bake, she went to her play kitchen to bake some more “cupcakes”.  Because it was late, and we wanted to frost the real ones, I put them in the fridge to cool off.  Shen then did the same with her pretend cupcakes.  I took her to a little museum this week, that had a play kitchen.  She spent such a long time in that one space!!

Elizabeth is growing up too.  She enjoys her blocks and bucks and putting hats on her head.  It is fun to watch her too.

Perhaps one day when they are older, I will long for these days of them being silly and playing make-believe.  But for now, I am loving the age they are, and looking forward to how they will grow up and change.

Every age is special.  Enjoy the moment.

001

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Birthday’s and Milestones

Today Alexander would have been 6 years old.  He should have just finished up kindergarten and be moving on to 1st grade.   But alas, he is not.  He is forever 21 months old.  21 months 3 days old to be exact.  Elizabeth turned that age on June 24th.  Both my girls are now older than their brother ever was (big giant sigh…..)

We once again had Oreo Cookie Day on June 25th.  If you missed it this year, don’t worry!  ANY day is a good day to eat Oreo’s and to celebrate LIFE!!!

Today was overall a good day.  Julia had a little camp to go to in the morning.  We went and got Alexander a birthday balloon, but did not have a chance to bring it to him as she had her 3 year check up today.  All is well with her!

This afternoon, we went to Build a Bear, so Julia could get a new friend with a gift card she got for her Birthday.   When I was pregnant with Alexander, my birthday fell on President’s day that year.  Build a Bear sent me a Free Bear to celebrate! (but sadly I didn’t get one this year!)  I choose a Bunny.  Alexander never got to play with the bunny, but I have slept with it ever since he died.  It was “his” bunny, so I feel close to him when I have it.  Well, Miss Julia also likes my bunny, and will sometimes “borrow” it!  Today, she picked out her OWN bunny to have! (Whew! no more sharing for mommy!)   Because it was Alexander’s birthday, I wanted to do a kindness in his name.  I bought a gift card, and had written a note about it being Alexander’s birthday, and that he had died from STUPID cancer.  I also put a few of my favorite Facebook pages about Childhood cancer on it. There was a family in the store with a little boy who looked to be about 6 years old.  We choose him to give it to.  Julia handed the boy the card,  and I told the mom and grandma, that there was a note explaining why he was getting the card.  (lest they think we were scary people – heck they might have thought it anyway!!)

Tonight we had a special dinner of Lobsters (because it is summer and why the heck not!?) and I got an Oreo Ice Cream Cake.  Julia enjoyed putting the candles on, and wearing a party hat, singing, and blowing out the candles for Alexander.  I have seen other friends do similar things, and I had never thought to do it.  But this year, now that Julia is getting older and is understanding more, it just seemed to be right to celebrate this way.

Julia turned 3 last week.  Poor thing was sick on her birthday with a fever.  I had a bit of PTSD over this.  Alexander had a wonderful 1st birthday, but the next day he woke up with 103 fever.  He spent 27 days in the hospital including some time in the PICU.   Deep down I knew Julia just had a virus or cold, but that PTSD has a nasty way of sneaking up on you!!!

Julia will be going to pre-school in the fall.  Another milestone Alexander didn’t get to achieve.  But, I am feeling good about it.  I have been working with a new therapist on PTSD, and moving FORWARD (not, not moving ON – but FORWARD).   Yes, there many be moments that I am sad that Alexander never got to go to school.  However, right now I am much more filled with JOY that Julia IS going to school!  I already have a backpack for her, and I look forward to going to the store in August to pick out some school supplies for her.  We had a little orientation that was held in the Library.  I remembered going to the library when I was in school, and getting to order from the Scholastic Book fair.  I was excited to think about all the new things she was going to learn at school!

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4 Long Years

Tomorrow it will be 4 years since Alexander joined the angels.   4 years.  How did that happen?  It seems like a lifetime ago, yet it seems like yesterday.

I TRY not to think about what he WOULD be doing if he was alive, but that is hard.  I have many friends who have children who are the same age as Alexander, so I have a constant reminder.  I have heard some bereaved moms say they just can’t be around children that would be their age.  I can understand that.   However, for me it is okay most of the time.

I don’t have anything profound to say in this post.

I miss my beautiful Alexander.

 

Alexander looks out the window to the world!

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More on the Roller Coaster

I was reading a story recently about a man who had lost his wife to STUPID cancer.  He said it wasn’t so much the anniversary days (day of death, her birthday, etc) that he had the most emotions at.  He expected those days, he could “plan” for them.  But rather, it was the random things, that thru him on an intense emotional ride.
I can totally relate.   Some of the toys that were Alexander’s have his name on it.  Some because it was just fun to have stickers with his name on it.  But others, many of them, have a hand written name, and it was only because it was a toy we would bring to the hospital.  We wanted to be keep it separate from the hospital toys, and if we left it behind by mistake, someone could get it to us.  There are days I come across one of those toys, and I am brought right back to those days, so many many days, in the hospital.

When Alexander was sick, I followed several other kids who had neuroblastoma.  Sadly, one by one they died.  When the last one died, I decided that I just couldn’t follow any new kids. I would of course keep in touch with my friends from the hospital, but I wouldn’t follow new kids I didn’t know, because I just couldn’t get that emotionally involved anymore.    Well, “thanks” to Facebook, that hasn’t always happened.  I have followed some new kids, I have become Facebook friends with the parents. Some have died, some are doing awesome.    My heart breaks for the parents of the kids that have died.  I feel their pain, I am angry at cancer with them.   I pray for peace for them.

And when I read about kids that are doing great, I rejoice with the parents!   But, then the emotional roller coaster also hits me.  And I get jealous.  I wonder why THAT child, why not Alexander?  Why was there a new treatment available for that child, and not my Alexander or all the other children that died before him??   I guess it is really more anger than anything, because how can I be angry at a child that is WELL.   Of COURSE I am happy for that child and parents!

Then there are days like today.  Ones where I wake up, and find out that another beautiful child has lost her battle against the STUPID cancer beast.  We first met Shelbie in 2010 just after she was diagnosed with STUPID cancer.  4 years ago this month.  She fought so very hard, but the beast was stronger.  She earned her angel wings last night.   It makes me so angry that these children fight so hard, and still die. It is so unfair.    My heart aches for her mom. (I did not know her dad well, but my heart is heavy for him too)

As you run around crazy these last few days before Christmas (if that is what you celebrate) please take a moment, send up a prayer, positive thought or good vibe for those that are broken-hearted this Christmas.  Don’t worry about getting “everything finished”  know that what you have done IS enough, and that Children will remember LOVE more than they will remember the STUFF.

 

Christmas 2

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Holiday Season

So the holiday season is upon us.  Yes, I said HOLIDAY season. So sorry if that “offends” anyone!   Yesterday was Thanksgiving, soon it will be Hanukkah , the Christmas, then the New Year. So yes, it is a HOLIDAY season.  I have seen a lot of things online, how we should ONLY say Merry Christmas, and not Happy Holidays.  I don’t get that – because, well, not everyone celebrates Christmas!  I saw someone else say, that it is the ADVENT season, and we shouldn’t say Christmas, because the “Christmas” season, doesn’t actually start until December 25th..

Wikipedia has this to say:

http://en.wikipedia.org/wiki/Christmas
Christmas or Christmas Day (Old English: Crīstesmæsse, meaning “Christ‘s Mass“) is an annual religious and cultural holiday commemorating the birth of Jesus Christ,[6][7] celebrated generally on December 25[8][4][9] by billions of people around the world.[10][2][11] A feast central to the Christian liturgical year, it closes the Advent season and initiates the twelve days of Christmastide, which ends after the twelfth night.[12] Christmas is a civil holiday in many of the world’s nations,[13][14][15] is celebrated culturally by an increasing number of non-Christians,[1][16][17] and is an integral part of the Christmas and holiday season.

Call it whatever you want, I really don’t care, just be happy and kind to one another!   I have seen a lot of people say “Put the CHRIST back in Christmas”. Well, if that is how YOU celebrate then yes.  And be sure to do something CHRIST like this season!  There are so many people in need, kids in the hospital, the homeless, those that need just an extra hand.  Do SOMETHING for them, and stop complaining about how people don’t SAY the right thing!!!  have your ACTIONS show what Christmas really means to you.

I use to Love Christmas time.  I loved all the movies on TV, the gift buying, the decorating.   But when Alexander was diagnosed with STUPID cancer, I didn’t care much  about it, and even less so since he died.  He spent Thanksgiving and Christmas in the hospital in 2010. He was VERY sick on Thanksgiving and we were alone (some day I will get over being bitter about that one!)  We made Christmas as nice as we could, but really, it was in the hospital so how nice can that be!?  He was little enough to not notice, but of course we did.  After he died, I REALLY didn’t care any more!  I am starting to get a bit of the Joy back now that we have Julia and Elizabeth.  Julia has some books about Christmas that she likes to read (and we have been reading since September!) and she has a Curious George Special that she likes to watch (over and over and over again!) When we were putting up Gold decorations in September for Childhood Cancer Awareness month, she kept saying “Christmas time!”.  It is fun now with her, and I am sure next year Elizabeth will be into the season too.

It is still hard though to be truly happy.  A lot of my Angel Parent friends say the same thing.  Life is never the same after you lose a child.  You go thru the motions for your family, but really you just want to curl up in a ball and cry, because you will never have a perfect holiday again. Sending out Christmas cards becomes a conundrum for a bereaved parent. You want to some how include your child that has died, yet, figuring out the best way is very hard.  Some people hold a picture of their child that has died, some leave that child out all together.  Last year, I added a butterfly with Alexander’s name on it that was written in the sand.  Another time, I included a family photo that we had taken in front of a picture of him at a Road Race we took part in.

As you go about the next few weeks of the HOLIDAY season, remember, you never know what someone else is going thru.  This could be a hard time for them for many reasons. Loss of a loved one, sickness, or any number of things.  Be kind to those around you.

alexander (2)

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Roller Coaster Ride

Last night I had a dream that I was on a roller coaster.  It was a crazy ride, but the scary part was that the roller coaster was falling apart as we were riding it!  I often feel like my life is like that.   A crazy roller coaster ride that is sometimes falling apart.

We have returned once again from a wonderful weekend at Camp Sunshine .  I have written about our time here before:
https://thecookiegal.wordpress.com/2013/05/28/camp-sunshine/

https://thecookiegal.wordpress.com/2014/06/01/some-thoughts/

https://thecookiegal.wordpress.com/2012/05/28/finally-not-different/

This was our 4th time there, although the first time we had a chance to go in November.  The main difference about the November session is that you have a chance to make a Quilt out of your children’s clothing.  Some people make a large quilt, some a smaller one, and some just a pillow case.  Anything is okay.  I had saved many of Alexander’s outfits for this activity.  Before we went to camp, I told Richard that I was going to need his help with the quilt.  I didn’t really have any idea of what I wanted to do.  As we drove up to camp however, I started having a panic attack about cutting up Alexander’s clothes!  I realized I was not going to be able to do that!  When we got to camp, Richard started to talk with one of the quilters, her name is Ruth.  He told her his idea for the quilt. He wanted to do a big letter “A” and use the clothes in small pieces to fill out the “A”.  The next day he brought up the clothing and he and Ruth started to go thru it.  They noticed that there was a lot of clothing with Animals on it.  They also noticed that the clothing had “patches”.  Ruth suggested that she cut squares around the patches and work with them.  She told us she had never done anything like this before (although she has been quilting for many many years!!)  As we worked on the quilt, we decided to add a few of Alexander’s favorite things to it – a Picture of his Seahorse, Curious George and of Course Oreo Cookies!  They were able to print out photos for us and using a very special transfer paper/machine get them onto fabric.    Ruth worked very hard all weekend.  I put a few stitches into the binding

IMG_0144

Back to the roller coaster ride.  Throughout the weekend, we have parent groups.  We talk about our children that have died during this time and how we are dealing with that.  Everyone has a different and special story. Some parents had only lost their children a few months ago, some many years ago.  It is hard to hear these stories, but it is also nice to know that we are not alone in our grief.

At one point during the weekend, I couldn’t find the baby wipes I had been using in the dinning hall.  I went into a panic.  Now, I know what many of you are thinking “a panic? over WIPES?!”  Yes, that is what happens when you lose a child/  Even the smallest of things can send you into a full blow panic attack!!!!   Honestly, I don’t remember being THAT much in a panic when Elizabeth was having her open heart surgery!

Continuing on the emotional roller coaster is the constant fear that Julia or Elizabeth will get cancer.   You might think “no, that couldn’t happen again”, but sadly you would be  very wrong.  On the Angel Quilt there are THREE sets of siblings that have died from cancer.  I recently met a family that had lost THREE daughters to cancer!!!  Even in my own family – my dad died from cancer and two of his brothers also died this year from cancer!    I TRY not to worry, and I TRY to stay off “Dr. Google”, but sometimes, a bruise, a cold and even a little constipation can get my mind spinning to that place.  The place where I would hear once again “I am sorry but your child had cancer”

I continue to be told by others that they are “inspired” by me.  I am not sure why. I guess it is because they wonder how THEY would be if their child die.  I suggest though that you don’t think about that, because, you don’t know how you would be, and I don’t ever want anyone to know!   What I would like, is to INSPIRE people to DO good things in life.  If you are going to look at me, see that I am not in a puddle on the floor (although there are many days I WOULD like to be!!!)  There are so many ways to help those in need, and not just kids fighting cancer!   I know many families that have started foundations, organize blood drives and hold huge fundraisers. That is wonderful, but to me that is VERY overwhelming!  If you have the time and energy to do a big event, then GREAT!  But if not, think on a smaller level.  Maybe, instead of giving gifts to the adults this year at Christmas, consider donating that money to charity.  After I turned 40, I decided I didn’t want Birthday Presents anymore, instead, if someone wanted to do something for me, I asked for donations to be made to Birthday Wishes. Birthday Wishes is a group that holds birthday parties for children that are homeless.

Okay – I think I am going to get off the Roller Coaster ride for tonight and maybe actually go to bed early!

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This shouldn’t be Normal

Julia was having a rough time this morning. One that only a 2 year old can understand!  There was nothing “wrong” with her, she wasn’t hurt or hungry. Her diaper was fine.  Maybe she was just tired?  Maybe she was upset because I was going upstairs and leaving her to play with all her toys?  I don’t know.  But what I do know, was that she was crying many tears, and was just really sad.  I thought about what it would be like if she was sick, really sick, like Alexander had been.  How hard it would have been to hear her say “no” to the shots, the lines, the chemo, the x-rays.

Alexander was only 8 months old when he was diagnosed.  The day he was diagnosed he recived an IV, and his arm was tapped to a board so the line wouldn’t come out.  He had monitors attached to him, and he had people poking at him day and night.  He would eventually get an NG tube shoved down his nose.  When the doctor first told us about it, he said “It only hurts for a minute”.  I said to him “oh, so you have had one?”  I think the doctor knew right then and there that we were not ones to be messed with or told some fake words of “comfort” to get us thru!  We wanted to know the truth when it came to what would happen to our son.

Alexander  never said no to anything we did to him. He never said why me mommy?  He didn’t say anything because he never talked.  Not one word – not even mama or dada.  Before he was diagnosed he did do some babbling, but after, it stopped.  We never knew why.  Maybe it was the tumor? Maybe it was the feeding tube?   I am sure he would have cried and screamed if he could have.

But, really, he just accepted things. He did fight me when I had to drop the NG tube, but other than that he really just did what needed to be done.  I actually find it sad really.  At one point, he was having x-rays 2-3 times a DAY to check on the status of fluid in his belly.  He had to sit on a little block, and I had to hold his hands up over his head.  He just let me do it.  He didn’t fight me.  He had multiple ultrasounds. Again, he didn’t fight it.   I had to give him daily shots after chemo.  He cried, but didn’t try to run away from it.   It was all just normal to him.  It was part of his life and he seemed to have learned to have accepted it.

As hard as it is to hear Julia and Elizabeth Cry and fight me when they are sad, or need medication, I will gladly take it.  Because to them, it is an unusual not normal thing.  I pray that they will NEVER have to have medicine, x-rays, or shots become “normal” to them.

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Dear Alexander

5 Years ago, you and I were spending our last night together.  You would be born the next day, and I would have to share you with Daddy and the rest of the world.  But for one last night you were all mine.   I don’t remember if I slept well that night or not.  But, I do remember calling to find out if they had room for me at the hospital, and having to call back after “change of shift” time.   Daddy made me scrambled eggs and toast for breakfast, and we headed into the hospital at about 8am.   They set me up in a room, and got the medicine started that was suppose to help you come out faster.  We played cards, listed to Bill Cosby’s thoughts on Natural Childbirth, watched “My Cousin Vinny” and I got my lovely epidural.   Nana came to hang out with us in the hospital too, although she spent a lot of the time in the waiting room.   At about 4pm, the nurse told me I could start to push, and I would be pushing for “about 2 hours”.  Well, 2 hours came and went and you had not arrived yet!  Our first lesson, that you would not do what you were “suppose” to do!  At 7pm I got a new nurse. She was wonderful (she would later help me with your sister Julia too!)   I was getting very tired, and just wanted to meet you!!  I got sick a lot, and they kept putting me in crazy positions, and one of the male doctors told me I wasn’t “being very effective” with my pushing!!.   My regular Doctor, had to go home when her shift ended, but she told them to call her when I was really close!  She came back a bit after 8pm.  Finally, at 8:49pm you arrived into the world!!!   You did NOT come out crying however!!   Mommy was a bit scared, but I kept telling myself that I heard your heart beat on the monitor, so you were okay.   They cleaned you up, and got you talking and then I finally got to hold you on the outside!!
Daddy had his turn next, and then Nana came in too!!

While, I had to wait ALL DAY for you to arrive, it ended up working out great – and I got an extra day in the hospital!   I know you spent a LOT of time in the hospital and you might not think that is a good thing, but it was!

So he we are 5 years later.  And we are without you.   You are living with God now.  There are so many things I wonder!  I wonder what kind of games you would be playing, if you would like sports, what kind of big brother you would be.  What you would look like.  And right now, I have been mostly wondering if you would be exciting about starting kindergarten in the fall.   I imagine you would be excited. I think you would have liked school and liked learning new things.

I wish we were having a birthday party for you tomorrow.   5 is an exciting age to be.   But, since you aren’t here for that, we gave another 5 year old boy a birthday party. (http://www.birthdaywishes.org/)   I think you would have like that.  We bought him Legos and cars.   You liked Legos (well, yours were BIG Mega Blocks!) and I don’t remember if you had any cars you played with, but I am sure you would have liked them.

I miss you so much Alexander!  You were the one that made me a mommy.  I will always be your mommy, and I will always miss you!!

Love,

Mommy

Holding Alexander for the First time

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2 Years Old

When we wake up tomorrow, we will have a two-year old.   Wow 2.  As I mentioned in a previous post, Julia became older than Alexander on March 26.(  https://thecookiegal.wordpress.com/2014/03/09/time-and-milestones/)  and now she will be 2.

I didn’t plan a party at all for her this year. She had a lovely little party last year.  But this year, I don’t know why – I just didn’t plan one.  We had things planned on different days during this weekend as well as last weekend.  And there just didn’t seem like a good “time” to have one.  I wanted to get her a Curious George themed party, because she really likes to watch that show.  I had to go online to buy things, as none of the party stores near me carried them (which I find very odd)  I checked with a couple of bakeries in the supermarkets and they didn’t have a Curious George cake, although they did say I could bring a picture in and they would put it on for me, but that just wasn’t what I wanted.    I ended up making my own cake, which came out pretty good I think!

We go to a Down syndrome Play group (http://www.morningtravelers.org/) and I knew there would be a lot of kids there, so I decided to bring the cake to that.  Since Julia is so little, I knew she wouldn’t realize it isn’t a party JUST for her (although I imagine when she is a crazy teenager she will bring it up more than once!) so I figured that would be okay.

But, then I did start to think about just WHY I didn’t have a party for her.  Was it really because we were too busy to have one? Or was it because Alexander never had a second birthday party.   Or because he would have been 5 in a week?  I don’t know….maybe……

Now, what do I do with a 2-year-old?!!?  She is already perfecting the temper tantrum!  And we are finding it hard to get her to eat anything beyond plain pasta.  (I don’t want to get her into the Kraft Mac and Cheese habit that so many kids have!!)  She does eat fruit, so at least that is healthy right???

We do enjoy watching her grow and learn, and to be silly.   But for me at least, it is still so hard to see her as the oldest child we have, when really she is a middle child.

I am sure I have more thoughts on this….but that is all that is coming out right now…..

 

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Some thoughts….

We were off once again to Camp Sunshine last weekend!  (see my previous posts for more details about camp)
https://thecookiegal.wordpress.com/2013/05/28/camp-sunshine/

https://thecookiegal.wordpress.com/2012/05/28/finally-not-different/

During the Moms only discussion group, the leader pointed something out – that is just how MUCH we have been thru in the last 3 years.

1.  Alexander Died

2.  Julia was born

3.  Elizabeth was born (and my friend pointed out to the group how Julia broke he foot when she was just two weeks old and still in the hospital)

4.  Elizabeth had open heart surgery at 6 weeks old

Whew!  Any ONE of those things would be a lot to handle – and I have had ALL of them in just three years.  How I have done it?!?!  Honestly I have no clue at times!

There are many days, I wish I could just stay in bed all day and ignore the world.  I love my girls, but there are many days, I wish I didn’t have to take care of them – that I could just crawl into a hole and be alone.   But, on the other hand, the do give me a reason to get out of bed each day!  It is wonderful to see them smile and being happy (although I am not so sure about the temper tantrums that Julia is getting so good at throwing!)

I have written before about my love/hate relationship with technology  (https://thecookiegal.wordpress.com/2011/06/18/a-love-hate-relaltionship-with-technology/)

Right about now I am in one of the “hate” modes.  Facebook can be wonderful – but it can be very hard at times for those of us living without our children.  Kids are starting to finish school for the summer, and September will be here before we know it, so there have been a LOT of postings about school.

I have been seeing a lot of “Oh my baby is going to kindergarten!  Oh, why does he/she have to grow up so fast!?”   That one has been the hardest for me, because I should be saying that about Alexander.  He would be going to kindergarten in the fall if he were alive.  (and I happen to have a LOT of friends whose children are going off to kindergarten in the fall!)  Deep down I know that my friends are just being poetic about life and how fast it can go sometimes.  I am sure had I not lost Alexander, I would have been doing the same thing.

But for me, right now, I am just waiting for Julia makes it to her SECOND birthday.  From there I will be so HAPPY when she reaches all her milestones that she is “suppose” to be doing!

001

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