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Cedie's birthday

Happy Birthday Sweet Angel Cedie Lynn

Cedie's Garden

We have added a multi-colored Rose garden to Cedie's memory garden this year. The roses are already starting to bloom!







Dylan and I bought her garden a butterfly as an early birthday present.

Early Mother's Day Present

Eva's mom, sent me this today "from Cedie" for Mother's Day. It was so special, I just had to share.





(if you double-click on the image, it will get bigger and easier to read)
Thank you Crystal.

Cedie's Garden

I bought some new things for Cedie's Garden today. I got her a pretty Easter bow for her tree that her CHARGE family gave us. I got a pretty purple flower stake that has a sign that says "Bless this Garden." My favorite new thing is the new angel statue! It reminds me of our angel and it fits beautifully in her garden.

When Time Stands Still

When Time Stands Still" by Debbie Hilton-Kamm

It starts with news impossible to hear
It conjures up your every fear
It's when they say your child is ill
That's when time just stands still
In that moment, that suspended time
A thousand thoughts run through your mind
Will he ever laugh and play? Will I see his wedding day?
All the planning, the hopes and dreams
Are put on hold -- just what does this mean?
His crib is empty, his toys alone
For now, the hospital will be his home
This is a place where time stands still
Where the void's too large to ever fill
For in a hospital's intensive care
Children lie, some unconscious, some aware
And time is measured by a new yardstick
Every second marked by a monitor's tick
Noting every breath the child takes
And every beat his tired heart makes
Just a moment of watching a child writhe or strain
In sedated confusion, or fear or pain
Or pleading for a drink to which you can't oblige
Seems like far more than an entire lifetime
And the children who live far too long
In hospital gowns, trying to be strong
They have old souls, that's what they say
Because in each moment they've lived a thousand days
For those who say time goes by too fast
Sit with an ill child, and see just how slowly time can pass

A Balloon for Cedie

Chris, Dylan, and I went on a Florida vacation from Dec. 27th through Jan. 6th. (See our family blog for pics and details.) This first holiday season without our angel Cedie was rough and with the first anniversary of her death on Jan. 5th, we decided to get away for a while.

On the 5th, we sent a balloon up to Cedie with a note telling her we love her and miss her. It was actually Dylan's idea (he's the sweetest, most thoughtful brother ever). He had gotten the balloon from a restaurant we had eaten at on Jan. 2nd. He was so excited about the balloon- right away he thought it would be a great way to send his sister a note.

So Saturday morning, we three stood on the beach and let the balloon go. We watched it soar high into the sky, each of us silently saying our own things to our angel.

A Slide Show for Cedie

Our wonderful friend Crystal (Eva's mom) made another wonderful video of Cedie.

Here is the link:
http://www.onetruemedia.com/otm_site/view_shared?p=4a86ec1eb055f32f3b6916&skin_id=1012&utm_source=otm&utm_medium=email


Thank you so much, Crystal. You are one of the most thoughtful people I have ever "met": we hope to meet you, Eva, and the rest of your family in person soon.

Its Been One Year

It's been one year since:

Bubba said her final good-bye to her great-great granddaughter

Great grandmothers Ruby and Linnie said goodbye to their only great granddaughter

Nana, G-dadddy, Meemaw, Granny, and Grandpa said goodbye to their only granddaughter

Aunts Mel-Mel and Becky, Godmother Rachel & family, great aunts and uncles, cousins, extended family, family friends, and internet friends said their goodbyes

Big brother Dylan said his goodbye to his one and only little sister

Daddy said goodbye to his only daughter, his princess, his angel

Mommy said goodbye to her only daughter, the one she dreamed of having her whole life, her beautiful angel.

Cedie Lynn was loved by so many people and we all mourn her loss. She affected the lives of everyone she met and others across the world whom she never met yet they followed her blog every week.

She taught us all so many important lessons. She opened our eyes to things never thought of before. She let us all she how precious life truely is.

We have been told that time in Heaven is much different than time here on earth. To Cedie, she has been gone mere minutes and she eagerly awaits our arrival so that we may all be together again, this time without fear of germs and infection, and without dependence on man-made machines.

We love you and miss you, our angel Cedie Lynn. You will never be forgotten. Have fun playing with Jesus and we will be with you soon.

Christmas Time

As Christmas gets closer, I find it gets harder and harder for me to deal with it. I was going through a catalog this morning, looking for presents to buy. I suddenly found myself crying because I want to buy girly presents for Cedie. I want her to be here to enjoy them! Jesus gave us one good Christmas with her and for that I am and will always be truly grateful but I also selfishly want more than one! I found myself wondering which Christmas was worse- that first Christmas when she was in the ICU or this Christmas without her here. Rationally, I know she's better in Heaven than she was that Christmas when they had to induce her into a coma because she was so sick. However, a grieving mother's heart is not rational.

I decided to look on the web for suggestions from other grieving mothers on how to deal with the holidays. I found a site that had some good suggestions from other grieving moms and a really nice poem. I know I am not the only one who misses Cedie- she was so very loved by so many, so I am putting the link on here...

http://www.angelabode.com/holidayideas.html

Here was a good article about helping kids get through the holidays after a loss (those of you who will see Dylan this holiday season-this is a good article for you to read)

Also this poem titled "What is Normal after five years? was great. It really expressed my "normals" since Cedie left.

A Day For Cedie

I decided today would be a "Cedie" day. First I went and bought her November flowers for her grave site. This always takes me awhile because I have to find the "perfect" flowers for my angel- not just any will do. And there has to be some pink in there- big brother Dylan says so. After I found her flowers, I went to Lowe's and got some mulch and a couple other things I needed to fix her garden for the winter. You see, Dylan and I decided that it just wouldn't do for her garden to have dead flowers or no flowers throughout the winter. We decided we would use artificial flowers so that when all the grass and trees are brown and drab, her garden would be all the more beautiful- as Cedie always was. She always had the most decorated hospital room/bed and so likewise she will have the most decorated garden.

Anyway, I then spent the rest of the day, with some help from Dylan, "Meemaw" and Chris, fixing her garden. Her "CHARGE" tree must have grown 2 feet since our loving CHARGE family had it planted for us this past summer. It has really thrived in her garden. I moved some of the flowers out of her garden (they multiplied and were taking over some of the other flowers) and I cut down the flowers that died after our bout of cold weather last week. Once I had it all ready, Dylan and I placed the artificial flowers in the garden. I know she would love the "girliness" of it!

After we finished, Dylan and I took her November flowers to the cemetery and talked about her until the sun started to set.

It was a special day.

Dia de los Angelitos

In Mexico, November 1 is known as "Dia de los Angelitos" or Day of the Little Angels in honor of children who have died.

I am in my third semester of Spanish and in my class we talk about various Hispanic customs, such as Dia de los Angelitos and the day that follows, Dia de los Muertos (Day of the dead- celebration of (adult) ancestors).

In the spirit of Dia de los Angelitos, I want to honor my angelito...

Everyone that met Cedie fell in love with her. There was something so special about her. Although it was hard to catch her smiling, her smile could change your whole day. I loved the way she was completely facinated with the men in her life, her daddy, her brother, her G-daddy, and her other two Grandpas. She loved to rub her dad's face and the top of his shaved head. She loved to wrap her tiny fist around her brother's finger and touch his nose. She loved G-daddy's beard. Though she couldn't talk, she showed the women in her life just as much love. She insisted on having her mommy's tshirt every night. She loved playing with my hair and my bracelets. She was the best cuddler and myself, her Nana and her Memaw (and Nurse Kim and Godmother Rachel) could rock her all day. She was a very content little girl and she would entertain herself like no other baby I've ever seen but she also loved to play with her family and her nurses (when she was in the mood). She did have a very big temper but wouldn't you if you were poked and prodded the majority of your life? I loved her tiny feet and georgeous, curly auburn hair. Her nose and her cheecks- who didn't love them! I could go on and on because she was such an amazing little girl. I miss her so much and my life will never be the same without her.

Happy Halloween

Happy Halloween, Angel. I wish you were here. You are still the cutest Tinkerbell ever!

A million times I needed you
A million times I have cried.
If love alone could have saved you,
You would have never died.
In life I loved you dearly,
In death I love you still.
In my heart you hold a special place,
That none will ever fill.
It broke my heart to lose you,
But you did not go alone.
For all my love went with you
The day God called you home.

© Patricia Grant

Heaven's Baby Castle

In a baby's castle just beyond my eye
My baby plays with angel toys that money cannot buy

Who am I to wish her back into this world of strife?
No, play on my baby, you have eternal life

When all around is silent and sleep forsakes my eyes
I'll hear her tiny footsteps come running at my side

Her little hand caresses me so tenderly and sweet
I'll breathe a little prayer and close my eyes and embrace her in my sleep

Now I have a treasure I rate above all other
I have known true glory - I am still her mother

Originally Written by Beverley Stuive, in memory of her son Josiah James Alexander Stuive (I changed all the "his" to "her" for our Angel Cedie Lynn)

The Best Present

Today I received an awesome present....

Pictures of my Angel Cedie!

Nurse Kim (Cedie's nurse at LeBonheur and at home) sent me some pictures of Cedie that she downloaded from her cell phone! The majority of the pics were taken at our house while I was at work. Cedie looks really happy! Some of the pics really show off her curls too, which I love! I hope you Cedie fans enjoy these like I did!

I can't thank you enough, Kim. WE will treasure these moments in her life.

Happy 4th of July

Happy Fourth of July Friends!

As I spend another holiday without my angel, I remember the two 4ths when she was here....

7/4/05- Cedie was still in the NICU at Baptist Women's Hospital. They still had not figured out why she could not eat (from me or a bottle) without dropping her sats and turning blue. She was also beginning her fits that caused her heart rate to plummet and her breathing to stop (this latter bought her the trach). I had already seen my daughter crash atleast twice at this point. The doctors were considering sending her to LeBonheur for a g-tube because they had determined she had severe reflux issues.

7/4/06- Cedie had been home for a couple weeks at this point. We had Nana, G-daddy, and Aunt MelMel over for BBQ and fireworks. Nana and I stayed in side with her and watched the boys and Mel shoot the fireworks. She was simply amazed at the sight! I remember her sitting in her wheelchair, at the kitchen window, biting on her O2 tubing, and she wouldn't take her eyes away the view. I remember the nursing agency called to say that they didn't have a nurse for me that night, around 9:30pm. I was so stressed because she was still very fragile at that point. Also, I had been up all day getting the house ready for my guests. I was so tired. I made her sleep in her pack-n-play in the living room that night so that I could sleep right beside her in the recliner. I got to rub her little back till she fell asleep and I got to hold her little hand as I drifted off. I remember waking up to each little noise she made. I set an alarm clock so that I would not miss any of her feedings or medicine.

I am sure I probably complained the next day about being so tired and about not having the nurse support that I was promised. However, looking back now, as I can vididly see that time I had with her in my mind, I see that it was a blessing that we had that special moment in time, alone together. My angel and me..

Happy Birthday Darling!

Daddy, Dylan, and I brought you two balloons. Dylan picked out the circle one with pink stripes and butterflies. I picked out the butterfly shaped one.






When we got there, we saw that someone had already dropped off a present for you. We found a cute lil' teddy bear and a heart on a stick! You are so loved, Miss Cedie! (thank you, who ever brought this thoughtful gift)



Later, your Godmother, "Aunt Rachel" dropped you off some more gifts. She brought you a princess crown (you were always our princess), a lei, and a Birthday Girl ribbon (pink ofcourse).





Monday, June 18, 2007

Thank you everyone for your love and support. Thank you, my CHARGE family, for your posts. Thank you, also, everyone who commented. Our family appreciates all your thoughts and prayers.

Cedie's Birthday Present

This is Cedie's Tree. Before, it had a small round garden surrounding it.

In honor of what would have been her 2nd birthday, I decided to make a heart shaped memory garden filled with pink flowers.









Cedie, I hope this girly girly garden makes you smile each day as you look down from your cloud in Heaven! We love you! Happy Birthday!

Cedie's Garden

I made this stone for Cedie at Camp Braveheart.

I have decided to make a heart shaped garden around her tree in my front yard. The tree, which my CHARGE family donated, will be at its center. I bought some picket fence edging that I will paint pink and it will be the outline of her heart garden. I will post pics of the garden soon!

Cedie's Birthday

Cedie's birthday is in 17 days. Two years ago on June 16th God sent us this wonderful gift, our precious Cedie Lynn.

Please pray for our family as we make it through this time.

Dylan and I are going out to the cemetary in the next day or so to put out her June flowers (we change them each month). I thought it was so appropriate that June's flower is the rose because that's what I wanted to put out in honor of her birthday- a dozen pink roses.

March of Dimes Walks

This past weekend was the WalkAmerica March of Dimes Walks. Two of our fellow CHARGE families did the walk in honor of their children and in memory of our Cedie Lynn. Eva's family walked in Illinois. (Click here to read about their day and watch an awesome video that has Cedie in it)
Eva's mom had shirts made and she sent us one.




Evan's team called Evan's CHARGErs walked in Washington. (Click here to read about their day and to see their great video where you can also see Cedie)

Chris and I were so touched that both of these families would honor our daughter's memory. It occurred to us on Monday that people on both sides of the US were seeing our Angel's picture and reading her name this past weekend!

Thank you to all of those who donated money to both of these teams in Cedie's memory. It really is a great cause.

Cedie's Other Tree

To my CHARGE family: Thanks again for the blossoming cherry tree. It looks great in our yard. Dylan and I planted flowers around the base of the tree and they already blooming!

Cedie's May Flowers

Pansies are the offical flower for the month of May so Dylan and I picked her out some pretty pink, lavender, and dark purple pansies.

A new CHARGE Angel

Another little girl (13 months old) who had CHARGE Syndrome has left us. Jalia Camryn was born on 2/21/06 and passed away on 4/18/2007.

I am sure Cedie and Katie are holding her tight and teaching her the ropes up there in Heaven.

Jalia has a 2 year old brother. Our thoughts and prayers go out to him and her parents as they suffer through this tragic loss.

Interesting Reading

Where of my fellow CHARGEr moms sent me this very interesting article. She has also posted it on her site: EVAN under the journal for 4/19/2007.

It really moved me on two fronts.

First, it had a really good life message that everyone should consider.

Second, I felt the father's words as if they were coming from my heart. When Cedie was here, that very scenario happened all the time and I remember how we also loved the Silence/Reset button. The vent alarms used to drive us crazy. Now the absence of those alarms in our home just serves as a reminder to us that she is no longer here.

Sometimes we should really look at the things (or people) that annoy us in life and ponder what it would mean if they weren't in our lives at all. This is just one of the many lessons on life that my daughter taught me.

Another Cool Quote

Some don't believe in miracles.
They say, "What happens is by chance"
They rush through God's creation,
Without a passing glance.

But for those that look and listen
throughout each precious day
They will find the tracks of Angels,
as they move along their way!

- Andie Hellem

Happy Easter my darling Cedie! Mommy misses you so much and wished you were here to spend this holiday with us.

Whisper of Angel Wings

Whisper of Angel Wings

Today I stumbled and once again
Was lifted up by an unseen hand.
What comfort and joy that knowledge brings.
For I hear the whisper of Angel wings.
The guardian angels God sends to us all
To bear us up when we stumble and fall.
Trust Him, my friend, and often you'll hear
The whisper of angel wings hovering near.

- Author Unknown
Taken from the book Angels Everywhere

More Angel Quotes

"For He shall give his angels charge over thee to keep thee in all thy ways"-Psalms 91:11

"Behold, I send an Angel before thee, to keep thee in the way, and to bring thee into the place which I have prepared." - God; Exodus 23:20 KJV

"If we ever wish to know angels for what they truely are...perhaps it is we who must first learn to fly" - Anonymous

From the Angels Book: I really loved this

The wings I see are tinged with gold
Time is endless, Or so I'm told
Feathery white, I Know you're there
In my heart, I know you care
Over your shoulder, here we are
Staying close, Never far
Wrap me up, Envelope me
I need you Angel, Can't you see?

Shield me now within your wing
Songs of joy we always sing
Hold me tight and take me high
You belong to me in my sky
Protect and love
And nurture me
I need you Angel, Can't you see?

By John Cameron

Angels Every Where

I started reading a book called Angels Everywhere: Miracles and Messages. Its not one of those books you can read strait through in one sitting. Its more like a devotional thing. It has several neat quotes about angels and different stories of people who had experiences with angels.

Anyway, there have been several quotes that have really touched me so far and I thought I'd start sharing them on my angel's blog.

Here are the first three:

"Angels are speaking to all of us- Some of us are only listening better" - anonymous

"If you will pray truely, you will feel within yourself a great assurance, and the angels will be your companions" - Evagrius of Pontus

"Death is not a period, only a comma" - Sign outside a country church

Cedie's Easter Flowers

Today we replaced Cedie's March flowers with some Easter Calla Lilies. We even found some with a pink edge (Dylan says there always has to be some pink for his sister). I decided she needed some Easter eggs as well. We topped it all off with a "Hello Kitty" ribbon and a Easter Bunny pinwheel.

*In one of the pictures, you can see Dylan "cutting" the grass around her stone with my scissors. Such a silly boy!

Thank You CHARGE Family!

Some of my CHARGE family have bought us a flowering cherry tree that will be delivered AND PLANTED in our yard as soon as it rains! Dylan, Chris, and I found the perfect spot in our front yard to the left of our drive (directly across from "Dylan's tree" on the right side of the drive way). We have also made plans to plant flowers around it and Dylan and I are going to make stepping stones with her name on them! It will be a great family project! I am so excited and so incredibly grateful to these wonderfully thoughtful and loving friends!

Thank you: Sarah, Jeremy, and Evan Storrs; Amy and Max McKinley; Rebecca, Linden, Nathan, and Cameron Anderson; Marty, Dean, Maya, and Addie Kelly; Crystal, Eva, and the rest of the Masionis family; and Amy, Mike, and Ben Russo!

We love you all!

Now Cedie will have a tree at her brother's school and at her house!
The whole world loves you my angel Cedie!

Cedie's New Tree

We planted a new tree for our angel this afternoon. I know she watched us from a cloud and smiled at her daddy and brother doing the hard work while mommy took the pics :-)

Thank you again Mr. Giaroli.

Make photo slide shows at onetruemedia.com

Cedie's Tree (Update)

For those of you who have not read about Cedie' tree in our Mock Family Blog, Cedie's tree was destroyed last week. We were all devasted, especially Dylan.

However,

We are getting a new tree today!

The company that donated the tree before (Giaroli's Nursery & Landscaping) is giving us another tree!

I called them this morning to see what another tree would cost us. I explained who I was and what the tree was for and how much it meant to me and my family. They said just come pick out another one! I am so amazed at their generosity!

If you are one of our local readers and you ever need anything for your residential or commercial garden, please visit:

Giaroli's Nursery & Landscaping
6000 Summer Ave.
Memphis, TN
901-382-5402

Missing Photo

Chris found this photo on one of his old cell phones. I don't think I ever posted it. I'm not sure when it was taken but I do know she is in the hospital bed and my best guess is early 2006 (maybe February since the puppy has pink hearts all over it).

March Flowers

Dylan helped pick the flowers. He also picked the butterfly. I wanted green and white flowers in honor of St. Pat's Day, but he insisted on keeping a few of the pink flowers from February because "she loves pink!"

Cedie's Hand

The day before Cedie's passing, the Child Life Services coordinator for LeBonheur had us bring Dylan in to say good bye. She helped us with the difficult task of explaining to Dylan that his sister would be leaving us and why.

During this time, she had Dylan help her make a mold of Cedie's hand (he also helped make two sets of feet prints). She took that mold and made a cast keepsake for us.

We got it in the mail on Friday. It is so beautiful. Thank you Jennie and Thank You LeBonheur.

The Lamp

Today I had lunch with one of our LeBonheur nurses (who also worked 1-2 shift(s) per week for us when we were home). We had a nice time catching up. LeBonheur was like a 2nd home for us for so long and therefore we became close with so many of the wonderful people who work there.

Anyway, she had a memory candle lamp made for us out of some of the flowers we got for her funeral. It is so beautiful and I just had to share it with everyone.

Thank you so much Kim. You are such a wonderful friend! Chris, Dylan, and I will always cherish this gift.

Our New Family Blog

Make sure you visit our new Mock Family Blog - (see link on the right hand side of the screen.

Thank You! Thank You! Thank You!

Our CHARGE family made us the most wonderful scrapebook for Cedie. Max, Eva, Evan, Ben, Cameron, and Maya's families all made pages for us. Chris, Dylan, and I were all very touched and honored.

Max's mom sent me a Valentine's Day Angel Teddy Bear from Cedie. It was so cute and very sweet. (It is in the video.)

Eva's mom sent the beautiful butterfly that is shown in the video.

Make an online slide show at onetruemedia.com

My Other Blog

I have received a few emails regarding the other blog that is listed in my profile.

I started and kept up with Cedie's blog for a number of reasons. A major reason was that it was therapeutic for me. It helped me focus on the positive things that were happening within Cedie's life instead of focusing on the constant roller coaster of extreme highs and lows that her body put her through or on the worry of what kind of future would there be for a child who spent the first year of her life, the year that was supposed to be filled with milestones and happy firsts, could she have. It kept me from dwelling too much over the hard decisions I was constantly asked to make regarding her care and her life or the heart wrenching feeling of being torn between my daughter and my son. I tried to only post the positive and put aside the rest for my sake as well as for the sake of her fans.

A couple weeks after her passing, I thought to make this new blog. I had hoped it, like Cedie's blog, could be therapeutic for me. I set it to private knowing that some of these thoughts going through my head these days could not be easily understood by those who have not suffered this kind of loss.

However, the pain is still too fresh, the tears still too near the surface. I find that I can not so easily put my pain into words. Just like when she was here, I find I would much rather post the positive things on Cedie's site than confront the agony and emptiness I feel the majority of every passing day without her.

It is my hope that the day will come when I can confront or at least put into writing on the other blog what is going on inside me. Perhaps it can one day be something helpful for another grieving mother, just as Cedie's blog was helpful to the other CHARGE moms.

I have met so many wonderful people through this blog. I do not want to be disconnected from any of you. I will continue to post online. I have thought about making another blog for the "positive" happenings in Dylan's, Chris', and my life. I will, of course, keep Cedie's blog up as well.

The Miracle Team

Eva's amazing mom, Crystal Masionis, is doing a walk-a-thon in Schaumburg, IL on 4/29/2007 at 9:00 AM. The walk is for the March of Dimes Foundation whose mission is to improve the health of babies by preventing birth defects, premature birth, and infant mortality.

In addition to walking in honor of Eva and her brother, both premies like Cedie, Crystal and her team are also walking in memory of Cedie and another Charger who passed away recently, Kate.

They are going to wear special shirts with Cedie and Kate's names on it. Crystal is sending me one:-)

I have already made a donation to the team. If you would also like to support this wonderful organization as a tribute to Cedie as well as the many premie babies born each day, click on the following link:

http://www.walkamerica.org/personal_page.asp?w=689160 (Cedie is talked about on this linked page)

Thank you Crystal- you are such a wonderful person. Good Luck!

Tree Planting Montage

Cedie's Tree

A Tree for Cedie

Giaroli's Nursery has donated a tree to Dylan's school, Bartlett Elementary, in Cedie's honor. Dylan's guidance counselor has put together a tree planting ceremony for Friday at 10:00am. Dylan's whole class will get to go outside but Dylan will get to do most of the work. She is also going to work with him today or tomorrow and help him write a message or draw a picture and at the end of the ceremony he will get to send it, via ballons, off to his sister. Ofcourse Chris and I will be there. Dylan asked me last night "you aren't going to cry again, are you mommy." All I could say was that I'd try not too.

**Still working on the book idea. I got some good suggestions but I'm hitting blocks. Hopefully I'll figure out something.

Suggestions Please

I really would like to have a book made out of all of these blog entries and their comments- a tribute book to the life of our angel Cedie. It may be a tremendous project but one I would treasure always.

I have NO IDEA on how to accomplish this or where to start. So.... Suggestions please!

***Also, I again want to thank everyone for the wonderful show of support you have shown our family during this time. It means so much to our entire family.

To All the Cedie Fans of the World

We want to thank all of you Cedie fans for sending your thoughts, wishes, and prayers. It meant so much to us to know how loved our daughter was and to know how many lives she touches in such a short time.

Thank you all who came to her funeral vistiation and/or services. It was overwhelming to see all of those who knew/loved our precious angel. I have never seen a turn out like that. Words can not express how conforting it was to have each and everyone of you there.

MY GUEST MAP

Please check out the "My GuestMap" located to the right of the screen (right above our picture show). It is real easy to add a marker to show where you are from. Just use to tools to zoom in to your state or country and click on it. A box will pop up asking for your name and a message. You also pick your face. I think it will be neat to see where all of Cedie's fans are!