Christmas #2

Today marks our 2nd Christmas without our little boy. In some ways this day has been easier than last year...in other ways, it is still just as painful, if not more. There is a huge gaping hole here, and every joy that today brings is, and always will be, laced with grief. These are bittersweet moments. Thank you for those of you who took the time to remind us that Noah is not forgotten. That means more to us than you could ever know.

Before we opened our gifts, we trudged through the huge snowbanks to decorate Noah's grave for Christmas.

Kailyn made a special snow angel for our little angel...I miss you, my sunny boy full of more joy than any child I have ever known. I miss celebrating this special time of year with you. However, I know in my heart that you are celebrating today in a way that we can't even begin to imagine...celebrating at the foot of the King, with more gifts than we could ever give you, and all the food you could never have here on earth.

Team Noah

In spring of 2009, Noah was granted a very special wish through the Children's Wish Foundation. Our family was able to spend a wonderful week at Disney World where Noah met his favorite character, Tigger. The Wish Foundation gave us this opportunity to create memories which we will cherish always. Now it is time to give back...

On Oct 17, 2010 11:45 AM, our family will be participating in the Wishmaker Walk for Wishes in support of The Children's Wish Foundation of Canada. Thousands of Canadians in over one hundred communities will gather together to help create the magic of a wish for children with high-risk, life threatening illnesses. These children are coping with things most of us can only imagine and the wishes they receive provide a ray of hope during a difficult time. The Children’s Wish Foundation of Canada has never refused an eligible child and has granted almost 15,000 wishes! Wish requests continue to increase and they are currently providing 3 wishes a day! I hope you will join me and help to create the magic of a wish by supporting my efforts in the Wishmaker Walk for Wishes. To sponsor me online, just follow this link http://my.e2rm.com/personalPage.aspx?SID=2801767 and access my secure fundraising page.

You can help The Foundation even more by spreading the word about this exciting event! To encourage others to participate or to sponsor me please pass my website address along. It's easy; just paste the above link into an email. Join us on Oct 17, 2010 11:45 AM! Visit The Children’s Wish Foundation website and learn more about how you can create the magic of a wish!

Thanks for your generous support!

Five Years

Five years ago we were blessed with an amazing treasure that turned our world upside down and forever changed who we are.

Today we celebrate our son and remember his life...

Thank you to others who also remember our Noah and continue to leave us treasures at his grave...

Happy birthday Noah. Wish we could be celebrating with you. Missing you today and always, my sunny boy...

Another Anniversary

One year ago today we buried our son.

I can no longer think back to what Noah was doing one year ago at this time. And that makes me terribly sad.

Thank you to those who have remembered us this past week in special ways. And thank you to the person who visited Noah's grave and left this stone...

One Year

One year ago today, we watched helplessly as our son slipped away.

I do not know where the time has gone, or how I have managed to live 365 days without my sunny little boy. Most days now I can say that I find glimmers of hope. I can find things to smile about and be thankful for. But it is still so very difficult to find true joy in this new life. My mind is no longer focused on the things of this world, but instead, my soul aches as it never has before, for something more...something beyond this life. I cling to the hope of life beyond the grave and I wait impatiently for the day when I will see my Noah.


This is not at all how
We thought it was supposed to be
We had so many plans for you
We had so many dreams
And now you've gone away
And left us with the memories of your smile
And nothing we can say
And nothing we can do
Can take away the pain
The pain of losing you, but ...

We can cry with hope
We can say goodbye with hope
'Cause we know our goodbye is not the end, oh no
And we can grieve with hope
'Cause we believe with hope
There's a place where we'll see your face again
We'll see your face again

And never have I known
Anything so hard to understand
And never have I questioned more
The wisdom of God's plan
But through the cloud of tears
I see the Father smile and say "well done"
And I imagine you
Where you wanted most to be
Seeing all your dreams come true
'Cause now you're home
And now you're free, and ...

We have this hope as an anchor
'Cause we believe that everything
God promised us is true, so ...

We wait with hope
And we ache with hope
We hold on with hope
We let go with hope

~With Hope~

Stephen Curtis Chapman

(written after the tragic death of his daughter)

Our little Noah, you touched our lives in a way that words could never express. You were such an incredible, courageous little boy who could somehow capture the hearts of everyone you met. We were so blessed to hold you in our arms, even for such a short time. We will forever treasure those beautiful years.

Missing your bright smile. Missing your precious laugh. Missing hearing "mama" repeated over and over again. Missing how our lives revolved around your needs.

Missing you today and everyday...

Last

It's been a tough month...

My mind can't help but relive "this time last year..." over and over again. Those days and weeks leading up to the end...had I only known then...had I only stolen more hugs and kisses, or taken more pictures...had I only taken the time to treasure all the mundane moments.



One year ago today, we headed to the hospital...never believing that this time would be our last.

The Myth of Getting Over It

When our first child is born, a loud voice says, "Runners, take your marks!"

We hear the starting gun and the race begins. It's a race we must win at all cost. We have to win. The competition is called "I'll race you to the grave."

I really want to win.

Not everyone wins...

I'm soon going on stage to speak before a crowd of parents and loved ones impacted by the death of a child. My address is titled, "The Myth of Getting Over It." It's my attempt to answer the driving questions of grieving parents: When will I get over this? How do I get over this?

You don't get over it. Getting over it is an inappropriate goal, an unreasonable hope. The loss of a child changes you. It changes your marriage. It changes the way birds sing. It changes the way the sun rises and sets. You are forever different.

You don't want to get over it. Don't act surprised. As awful a burden as grief is, you know intuitively that it matters, that it is profoundly important to be grieving. Your grief plays a crucial part in staying connected to your child's life. To give up your grief would mean losing your child yet again. If I had the power to take your grief away, you'd fight me to keep it. Your grief is awful, but it is also holy, and somewhere inside you, you know that. The goal is not to get over it. The goal is to get on with it.

Profound grief is like being in a stage play wherein suddenly the stagehands push a huge grand piano into the middle of the set. The piano paralyzes the play. It dominates the stage. No matter where you move it impedes your sight lines, your ability to interact with the other players. You keep banging into it, surprised each time that it's still there. It takes all your concentration to work around it, this at a time when you have little ability or desire to concentrate on anything.

The piano changes everything. The play must be rewritten around it. But over time the piano is pushed to stage left. Then to upper stage left. You are the playwright, and slowly, surely, you begin to find the impetus and wherewithal to stop reacting to the intrusive piano. Instead, you engage it. Instead of writing every scene around the piano, you begin to write the piano into each scene, into the story. You learn to play that piano. You're surprised to find that you want to play it, that it's meaningful, even peaceful to play it.

Steven Kalas
ForMomsOnly's Journal January 31, 2010

I`m still trying to figure out what to do with that piano...

11 Months

11 months...

Summer has kind of creeped up on me out of nowhere. I'm finding it to be a really difficult time of year. We are surrounded by signs of new life, warmth and sunshine. It's a time of year I have always loved. But this year, it brings with it so many reminders...the canola fields in full bloom...a stab to my heart as I remember those fields, surrounding us in their beauty on the day we buried our son.

I am not exactly sure what to do with this all. The memories are both comforting and haunting, triggered by the smallest of things, at the strangest of moments. As much as I want to remember my boy all the time, to have him close to me always, I find that I must push these memories aside in order to get through the day. It becomes a constant battle in my mind. In time, I hope to be able to make some sort of peace with the memories.

Vote To Refresh GKTW

Please help refresh Give Kids The World Village with just a click of your mouse!!

By voting once a day, every day in June you can help Give Kids The World receive a grant of $250,000 through Pepsi to refurbish the Village villas. For those of you who have followed Noah's journey, you know what a very special place GKTW village is to us and to so many other families. We are so grateful to them for the amazing week we spent at the Village, and the very precious memories that we will always cherish.

Please help us give back to the village!!

Follow these easy steps:

1) Visit http://www.refresheverything.com/givekidstheworld and click the "Vote for this idea" button.
2) A pop up window will appear where you will enter your information and sign in.

3) After signing in, you will be taken back to the Give Kids The World page. Click "Vote for this idea" to submit your vote.

4) Tell your friends, family and colleagues to "Vote 2 Refresh" GKTW.

5) Repeat once a day, every day until June 30.

It really is that simple to help GKTW reach this amazing goal!!

An Ugly Pair of Shoes

10 Months...

What can I say that hasn't already been said...

Exactly one year ago, I was frantically preparing to leave for Toronto. Our time in Toronto is so closely tied to that last week we spent with Noah. In my mind, it will always feel like the beginning of the end. So there are many memories attached to this month.

At the beginning of the month, we attended the Children's Hospital Memorial service. It was beautifully done and it was so nice to see some familiar faces that we have missed terribly. We were given this poem that has become a favorite of mine and helps put into words this journey of losing a child.


I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable Shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.

I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.

I now realize that I am not the only one who wears these shoes.
There are many pairs in the world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by
before they think of how much they hurt.

No woman deserves to wear these shoes.
Yet, because of the shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.

I will forever walk in the shoes of a woman who has lost a child.

Author Unknown

Thank you to our wonderful friends for the amazing dinner yesterday evening. Thank you for remembering this day.

Mothers Day

What to do with this holiday...a holiday that celebrates motherhood...where everywhere you look, there are reminders of what can no longer be.


This holiday has kind of creeped up on me, but now that it is here, I can't help feeling so very lost and so very, very empty.

In my googling last night, I came across this interesting tidbit..."in the US, Mother’s Day started with a proclamation written by Julia Ward Howe. She called for a gathering of women to mourn the sons killed in the civil war and protest the futility of “their sons killing the sons of other mothers”. It wasn’t until 1962 that it became the hallmark celebration of commercialization that we have today." Somehow it made me feel better to read this...to know that this very commercialized holiday began like this...with mothers, like myself, gathering together, mourning the loss of their sons. I appreciate that it has grown into a day to honour mothers, but a day such as this also brings with it much sorrow to so many of us.


Today, I think of my own mother. I am so very thankful for her and for the support she has been to us all during these past years. I love you Mom!!


I think of my friends, and the wonderful mothers that I am privileged to know, and how I often marvel at their "supermom" skills.


But most of all today, I think of those who, like myself, woke up this morning unsure of what to do with this day...with the bittersweet experience of celebrating motherhood with their children...yet at the same time, mourning the loss of being able to mother all of our children here on earth.


I miss my little Noah...


I miss being known as "Noah's mom"...


I miss everything that being Noah's mom encompassed.


I hate that I am no longer able to do the job of mothering my boy here on earth, but in my heart, I will always be "Noah's mom". And no one can ever take that away from me.


So on this day, when it just plain hurts to do anything else, I will choose not to focus on what could have been. Instead, I choose to focus on the incredible gift I was given in mothering this beautiful child. I marvel that I was chosen for this task, and I would do it all again in a heartbeat...for that's just what mom's do. And I mourn for those who will never in their lifetime experience a joy such as our Noah.

9 Months

9 months...
9 months we waited for our son...from the moment we knew of his existence on this earth, to his birth.

Now, 9 months has passed since his soul left this earth...

On the outside I think I look like I am doing ok. I have taken on a new job recently, a job which hits very close to home and emotionally is tough...but I can't imagine a place I would enjoy more and it is the perfect job for me in every way. I have also taken up running again...this has become my therapy. But on the inside, I am still so very fragile...one moment I will be ok, feeling like I am strong enough to handle this...the very next moment I am blindsided by a scent, a sound, a memory that I had pushed aside.

The rest of the family is keeping themselves busy as well and we are all finding ways to fill the days. Kailyn still struggles with sleeping issues, but they are slowly improving with time. On a side note: to the person who is responsible for the delivery of a single white rose to Brad's office on the 29th of each month, thank you!! We do not know who you are, but the gesture is so appreciated!!

Dancing With The Angels

Memories surround me
But sadness has found me
I’d do anything for more time
Never before has someone meant more
And I can’t get you out of my mind

There is so much that I don’t understand
But I know

You’re dancing with the angels
Walking in new life
You’re dancing with the angels
Heaven fills your eyes
Now that you’re dancing with the angels

You had love for your family
Love for all people
Love for the Father, and Son
Your heart will be heard
In you unspoken words
Through generations to come

There is so much that I don’t understand
But I know

You're dancing with the angels

Walking in new life

You're dancing with the angels

Heaven fills your eyes

Now that you're dancing with the angels

We’re only here for such a short time
So I’m gonna stand up
Shout out
And sing Hallelujah
One day I’ll see you again

I will be dancing with the angels

Walking in new life

I'm dancing with the angels

Heaven will fill our eyes

When we're dancing with the angels

When we're dancing with the angels

Monk & Neagle ~ Dancing with the Angels

Easter 2010

We spent the Easter weekend away, attending a wedding...a beautiful way to celebrate a holiday fill of hope and promise. Another holiday "first" behind us. I wish I knew what to do with this huge void...this empty space in our lives...in everything we do. I will never get used to this...nor would I want to... Wishing we could be celebrating with you, Noah.

8 Months

8 months later and it is still so fresh...so raw. I desperately miss my joy, my sunshine...

Grief is a tidal wave that over takes you,
smashes down upon you with unimaginable force,
sweeps you up into its darkness,
where you tumble and crash against unidentifiable surfaces,
only to be thrown out on an unknown beach, bruised, reshaped...
Grief will make a new person out of you,
if it doesn't kill you in the making.
Stephanie Ericsson I have become quite skilled at putting on the mask. But inside I am still tumbling and crashing...

Held

Two months is too little
They let him go
They had no sudden healing
To think that providence
Would take a child from his mother
While she prays, is appalling
Who told us we'd be rescued
What has changed and
Why should we be saved from nightmares
We're asking why this happens to us
Who have died to live, it's unfair

This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We'd be held

This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To lilies of the valley and tomorrow

This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We'd be held

If hope is born of suffering
If this is only the beginning
Can we not wait, for one hour
Watching for our savior

This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We'd be held
We'd be held

This is what it is to be loved and to know
That the promise was when everything fell
We'd be held

This is what it means to be held.....

Natalie Grant ~ Held

7 Months

I thought this month perhaps I might feel different...no 29 on the calendar to throw me off. We were able to spend the weekend with friends in Vegas where I was able to laugh like I haven't laughed in a very long time. Definately a good thing. And yet, still it hits me like a ton of bricks, leaving me reeling. I find myself back in that PICU room all over again...feels as if it were yesterday. I ache for my boy...

Don't be mad if I cry

It just hurts so bad sometimes

'Cause everyday it's sinking in

And I have to say goodbye all over again

You know I bet it feels good

To have the weight of this world

Off your shoulders now

I'm dreaming of the day

When I'm finally there with you

Save a place for me, save a place for me

I'll be there soon, I'll be there soon

Save a place for me, save some grace for me

I'll be there soon, I'll be there soon

I have asked the questions why

But I guess the answer's for another time

So instead I'll pray with every tear

And be thankful for the time I had you here

So you just, save a place for me, save a place for me

I'll be there soon, I'll be there soon

Save a place for me, save some grace for me

I'll be there soon, I'll be there soon

I wanna live my life just like you did

And make the most of my time just like you did

And I wanna make my home up in the sky

Just like you did, oh, but until I get there

Until I get there

Just save a place for me, save a place for me

'Cause I will be there soon

Save a place for me, save a place for me

I'll be there soon, I'll be there soon

Don't be mad if I cry

It just hurts so bad

Matthew West - Save A Place for Me

This New Road

"One of the things so astonishing and costly about losing a loved one is that, while the sun continues to rise and set, newspapers continue to be delivered, traffic lights still change from red to green and back again, our whole life is turned around, turned upside down.

Is it any wonder we feel disoriented, confused? yet the people we pass on the street are going about their business as though no one's world has been shaken to the core, as though the earth has not opened and swallowed us up, dropped us into a world of insecurity and change.

It will take us time to learn to walk this new road. Time, and a lot of help, so we don't stumble and fall irretrievably. Those who have had their own experiences of loss will probably be our most helpful guides - knowing when to say the right word, when to be silent and walk beside us, when to reach out and take our hand. In time, we will be helpers for others.

I have entered a new country. I will be patient with myself. I will look for companions of the way."

Healing after Loss - Daily Meditations for Working Through Grief by Martha Whitmore Hickman

Today my heart is heavy...another family is just starting down this new road and will bury their son today. This is a special family to me, who were in Toronto hospital while we were there, and helped make my time there so much more bearable. I got a kick out of how Ethan loved to compare tubes and meds with Noah. My thoughts are prayers are with you today and in the days ahead.

Another beautiful spirit gone so soon...another backpack left at the pearly gates...

http://www2.caringbridge.org/canada/ethanjakob/index.htm

6 Months

Another day...another milestone...

Can it really be half a year since our world turned upside down?? Half a year sounds so long, yet often it feels like just yesterday that I held Noah, or heard his infectious giggle, or picked up the tupperware off the floor for the millionth time. I'm sure some days I still here Noah dragging his pumps across the floor.

A couple of weeks ago another boy we met at the Oley Conference lost his battle. I was able to attend his service online (thank God for the wonders of the internet). At the service someone talked about the image they had of that young man standing at heaven's gates, and dropping his backpack (his TPN backpack that was such a part of him), leaving it behind at the gate as he entered heaven. I love to think of Noah doing the same. Knowing that he no longer needs those things does bring some comfort. Kailyn decided there must be quite a pile of backpacks there already.

Someone asked me when the pain of this intense grief becomes manageable. It made me stop and think. And I realized that, yes, somewhere in this time, the pain has become more manageable. No, I don't miss him any less, the pain will always, always be there, and many days the aching of my empty arms is still so very intense. But I am slowly finding ways to put one foot in front of the other...to put meaning to it all...to begin to figure out how to live this new life without my son.

Bedtime Prayers

"Dear God, I pray that Noah's having a good time in heaven..."

Joshua's bedtime prayer, every single night.

New Year's Resolutions

NEW YEAR'S RESOLUTIONS FOR BEREAVED PARENTS

I Resolve:

That I will grieve as much and for as long as I feel like grieving, and that I will not let others put a time table on my grief.

That I will grieve in whatever way I feel like grieving, and I will ignore those who try to tell me what I should or should not be feeling and how I should or should not be behaving.

That I will cry whenever and wherever I feel like crying, and that I will not hold back my tears just because someone else feels I should be "brave" or "getting better" or "healing by now."

That I will talk about my child as often as I want to, and that I will not let others turn me off just because they can't deal with their own feelings.

That I will not expect family and friends to know how I feel, understanding that one who has not lost a child cannot possibly know how I feel.

That I will not blame myself for my child's death, and I will constantly remind myself that I did the best job of parenting I could possibly have done. But when feelings of guilt are overwhelming, I will remind myself that this is a normal part of the grief process and it will pass.

That I will not be afraid or ashamed to seek professional help if I feel it is necessary.

That I will commune with my child at least once a day in whatever way feels comfortable and natural to me, and that I won't feel compelled to explain this communion to others or to justify or even discuss it with them.

I will keep the truth in my heart--the truth that my child is always with me in spirit.

That I will try to eat, sleep, and exercise every day in order to give my body strength it will need to help me cope with my grief.

To know that I am not losing my mind and I will remind myself that loss of memory, feelings of disorientation, lack of energy, and a sense of vulnerability are all a normal part of the grief process.

To know that I will heal, even though it will take a long time.

To let myself heal and not feel guilty about not feeling better sooner.

To remind myself that the grief process is circuitous--that is, I will not make steady upward progress. And when I find myself slipping back into the old moods of despair and depression, I will tell myself that "slipping backward" is also a normal part of the mourning process, and that these moods, too, will pass.

To try to be happy about something for some part of every day, knowing that at first, I may have to force myself to think cheerful thoughts so eventually they can become a habit.

That I will reach out at times and try to help someone else, knowing that helping others will help me to get over my depression.

That even though my child is dead, I will opt for life, knowing that is what my child would want me to do.

~From the Brooksville/Spring Hill FL. TCF Newsletter

Goodbye 2009

It's been a difficult year to let go of...

moving on into 2010...

a year that holds no memories of Noah...a year without my sunny boy.

I'd much rather hang onto 2009...the good, the bad and the ugly...

for 2009 knows my son.