5 Months

5 months today...


Wishing it wasn't so...

Christmas

Another first...

Christmas without Noah...

What can I say...

Unfortunately, we do not have many good Christmas memories with Noah. Most of the holidays were spent either in hospital, or things were heading in that direction. By the time New Years rolled around, we were always inpatient. The holidays have been stressful times over the past few years, last year being the worst. And so this year we can be thankful...thankful that Noah does not need to lie in an ICU bed for Christmas...that he is free to celebrate...what could be better than Christmas in heaven??

And yet, selfishly, I desperately long to be sitting in that ICU room...I would give up a thousand more Christmases...for then our boy would still be alive. Everything we do without Noah feels hollow and empty. I imagine it will always be that way...as a part of me will forever be missing on this earth.

Merry Christmas my sweet boy. I miss you so much...everyday.

Back to the Deep Freeze

We have been back home for a few days now. Our trip went well, and despite the strangeness of it all, we had a good time. So many reminders there of Noah...the little ukulele in Ron Jon surf shop that I so desperately wished I had a reason to buy...meeting Tigger at breakfast...riding the carousel...Christmas at GKTW...watching Wishes fireworks...the list is endless. But we made many new memories...did alot of things we were unable to do last time...enjoyed the sun, the ocean, the food, and the infectious happiness that is Disney...very bittersweet. It really was a nice break from everything, which made it tough to come back...not only to the winter cold, but back to reality...back to our empty home...back to all the reminders of what we no longer have.
Since coming home we've been very busy...thrown right into the Christmas season with concerts, parties and now frantic last minute shopping. Busy enough that I have not had much of a chance to think about what Christmas will be like this year. But the reminders are constant...one less stocking to hang...the train set that sits in our garage, which I had already bought for Noah...no worries about spending another Christmas in hospital, but wishing more than anything that we were there. Thank you to the girls in our small group who have showered me with some fun gifts and an encouraging card for each day of this difficult month. Thank you so much for your support and for recognizing how tough this time of year would be.

4 Months

It was 4 months on Sunday.

We were able to spend the day at GKTW...tracked down Noah's star, rode the carousel and enjoyed their Candyland party. Unfortunately his paving stone was not done yet, which was disappointing...but another excuse to come back again! It felt a bit out of place being at GKTW...like we were no longer part of the "sick kids club". And I couldn't help but feel so very jealous of all those families who still had their children to enjoy.

Our days spent at the ocean were wonderfully relaxing. There is just something about the ocean that is so peaceful and healing. I could stay there for a very long time. We are now in the World, enjoying the Caribbean Beach resort which is beautiful and eating a ridiculous amount of food on the free dining plan. We are enjoying ourselves and spend many moments talking about the things Noah loved or would have loved here in Disney. There are difficult moments of course...a million reminders each day of how different our lives are now...things are far too simple. But there are happy times too and I am so glad that we came.

Off to See the World

These days we are all slowly hobbling along, looking for ways to fill our days and lessen the ache and longing for our old life back. Lately we've kept busy catching up on many things that have been neglected around here for so long. We've done the rounds of maintenance appointments for everyone...optomotrist, doctor, dentist (this one needed a couple of rounds), othodontist (yes, both kids are going to need this), H1N1 shots, and all the puppy shots. And now it's time to get away for a bit.

For a couple of months now we've been making some plans. We've all been feeling the desire to escape, and when thinking about where we should go, the answer was obvious. Back to Disney, which holds so many fond memories for us. And back to visit Give Kids the World...to see Noah's new paving stone, to find his star, to ride the carousel and remember him. It has given the kids something to focus on and look forward to and something for me to fill my time obsessively planning. So in a few days we are off to see the world.


Now that it is upon us, I have very mixed emotions. It has been difficult to try and pack for the four of us, and have absolutely no idea how to even begin without a million medical supplies. And to book our dining reservations for a family of four, instead of five. So why go back to a place that holds so many memories? I'm not sure...all I know is that my heart does not want to be anywhere that Noah is not. It desires to be surrounded by him, and very few places hold as many happy memories for our family as Disney. After such an emotional trip in February, I expect that this one will be even more so. But I am hoping and praying that there will be more smiles than sorrow...more happy tears than sad. A time to remember and also to make new memories.

The Ugly Monster

Anger...

It has a way of creeping up out of nowhere and rearing it's ugly head. Every grief book I've read and every website I've visited talks about anger. And yet, no one likes to talk about it. In my head I know that most of my anger is unfounded, but it seems I can still find many things to be angry about lately...

Anger at the hospital...things I wish had been done differently during those last few days. For all the time in Toronto...putting Noah through that major surgery, only to have him die two weeks after we get home. It all just seems like such a waste.

Anger at the system...at the speech therapist who called the other day to begin therapy with Noah...something I had been fighting for years to get and could never make any headway. Or for the letter we opened last week from the geneticist at Sick Kids, requesting further bloodwork on Noah.

Anger at myself...for not being a perfect mother...for making mistakes.

Anger at those around me...for calling...for not calling...for trying to "fix" me...or not saying anything at all...for being able to move forward, while I am stuck in the past.

And yes, anger at God...for allowing this all to happen...for not stepping in and saving the day after all my pleading...for not answering the "why's". For the unfairness of it all...

I appreciate these words from The Compassionate Friends website which helps me put things into perspective...

"Anger is but one of many emotional reactions to the painful reality of death. It is important to recognize anger as a natural, human response. If we can allow ourselves to be aggravated, irritated, even angered, by relatively minor life disappointments, we are certainly entitled to feel angry when faced with one of life's most devastating experiences — the death of a child. Anger is not chosen, however, whether to remain angry, to refuse to surrender it or to resolve it ....is a choice."

It's a nasty emotion...this ugly monster...

I don't choose anger...but still it finds me.

I can see how easy it would be to allow myself to drown in it for awhile...to remain in that place. Thankfully, the moments of intense anger are fleeting, and end up overpowered by huge waves of grief, leaving a great empty sadness in it's wake.

Hold My Heart

"...One tear in the driving rain,

One voice in a sea of pain

Could the maker of the stars

Hear the sound of my breaking heart?

One life, that's all I am

Right now I can barely stand

If You're everything You say You are

Would You come close and hold my heart..."

Tenth Avenue North

Hold My Heart

Halloween

Another holiday usually spent in hospital...

It is still so odd to be home for all of these things...to know there is not an ER visit lurking around the corner. As frustrating as it was to spend so many of these moments away from home, it pales in comparison to this...this gaping hole left by our little Tigger this year. So many of our precious memories are wrapped up in the hospital. And days like this, I find myself missing the place and the people who worked so hard to help us make wonderful memories there.

And so we try our best to make new memories...but we all feel the longing for the part of us that will always be missing...Our special "Tigger" pumpkin...

3 Months

I still have absolutely no idea how to live without my boy.

I miss him more each day.

And yet time marches on...

God's Garden

God looked around his garden
And found an empty place
He then looked down upon the earth
And saw your tired face.
He knew that you were suffering
He knew you were in pain
He knew that you would never
Get well on earth again.
He saw the road was getting rough
And the hills were hard to climb.
So he closed your weary eyelids
And whispered ‘Peace be Thine’.
He put his arms around you
And lifted you to rest.
God’s garden must be beautiful
He always takes the best.
It broke our hearts to loose you
But you didn’t go alone,
For part of us went with you
That day God called you home.
Anonymous

Thanksgiving

Thanksgiving is upon us...

...a holiday that we always seemed to spend within the walls of the hospital. For that reason, we have not really had much Thanksgiving celebration for years. And so it feels very strange to be at home today. This year we have decided to lay low once again and opt out of the traditional Thanksgiving activities.


I have to admit, I am having a difficult time mustering up a thankful heart this year.

It is hard to be thankful when all that surrounds me are reminders everything I no longer have. It is much easier to feel bitterness, anger and self pity.

But I am trying...


I know that today is not about feeling thankful...rather it is about a choice I have. A choice that does not come easy...a choice that must be made over and over again.


But with God's grace, and through the tears, I am reminded of all the blessings my Heavenly Father has given me. I have a wonderful husband, some very special friends, two amazing children here on earth, and I was blessed to be Noah's earthly mother, even if for only a short time...blessed with so many beautiful memories to treasure. And for that, I can be thankful.

The soul would have no rainbow if the eyes had no tears.

John Vance Cheney

Noah, did you know I needed to see this yesterday??

Normal

Strange, how in the eyes of those who do not know, our family now looks so "normal" on the outside.

I feel anything but normal...

I'm beginning to think our society has this grief thing all wrong. The first few days of grief is so public. Then the funeral is over and everyone goes home and gets back to their own lives. The cards, phone calls and visits become fewer and fewer. And somehow we are expected to pick up the pieces and begin to move on from this place.

But loss changes a person. I am different...forever changed. And I have yet to know what to do with that.

I am beginning to understand why other cultures wear mourning clothes, or noticable items to identify themselves as a bereaved person. The importance of showing others that you have suffered a great loss makes a great deal of sense. Some wear their grief for months...sometimes years. It must make it easier to enter back into society, knowing that there is no need to hide your loss. That everyone knows just with once glance how very fragile you are...that you are a long ways from "normal". And that you can easily identify with others who are also suffering their own losses.

Despite how simple it now is, leaving the comfort of home is difficult these days. Strange to have nothing to pack up...no appointments, meds, feeds or TPN to plan around. Strange to be out in public and not have the looks or the questions...no strangers drawn to us by Noah's contagious smiles. The normalacy of it all screams in my ears...oh how I miss it!

Two Months

Time is now measured by the weeks and months since Noah's death...

It's been two months...I am still so very, very lost.

I miss you Noah.

Small Talk

Small talk...

I hate it.

Lately it seems like such a waste of time and I am no longer very good at those types of social situations. Putting on the mask, and pretending to care about nothing...when all that consumes my mind is Noah.

Last week, while making the obligatory small talk with a stranger, the question came up..."How many children do you have?"

I knew that would come up sooner or later. But, wow...I was definately not prepared for it. My heart dropped and I stumbled over my words, not knowing what to say. Do I say 2? Or do I say 3 and leave it at that? There really is no answer that sounds right. In the end, I said 2, but it was difficult to say anything else after that.

Afterwards, I couldn't stop thinking about it...how terribly wrong that sounded...how guilty I felt for saying it. And how much I wanted to blurt out that I had 3 children, and my son just recently died. How much I wanted her to know how her very innocent question had hurt me.

What a conversation killer that would have been.

I hate small talk.

Four

Noah would have been four today.

Four years.

The first of many birthdays we will celebrate without him.

If it hadn't been for the incessant whining of the puppy to be let out, and the need to get the kids on the bus, I would have pulled the blankets over my head and slept until Tuesday. In some ways, today is as bad as I had imagined. In other ways, it's just another day, in an endless stream of painful, lonely days.

I have been writing this blog in my head for days...wondering what I could possibly write on this day that would describe the vast array of emotions...the empty aching arms...the endless longing to be celebrating with our son today.

There really are no words.

Four years ago today, we welcomed our son into this world, knowing that time was a precious commodity with Noah. What a miraculous day that was! His tiny, fragile body struggled from day 1 and we worried and wondered. If we had known on that day, that we would have almost 4 years with Noah, we probably would have rejoiced. Now we know that 4 years was not nearly enough time. That those years would be gone in the blink of an eye...and we'd be left behind in this state of bewilderment, wondering how this could have possibly happened.
And so we struggled with what to do with today. How do you begin to acknowledge this day...the day that marks the first day we met our son. For it still needs to be remembered and celebrated.

In the end, we opted for a pretty low key day. After school, we went out to the cemetery. Although I had hoped to stay there longer, the weather did not cooperate. How fitting though, that it was a dreary, drizzly day. It would have felt very wrong if the sun had shone today. We each wrote Noah a special birthday message, attached them to four balloons and released them to heaven...

We left four more balloons behind...


...then went out to dinner for some family time.

Happy birthday, dear Noah. We miss you so much today...and everyday. How we wish you were here. We miss your beautiful smile...your infectious giggle....your unconditional love...your exuberant embracement of life. We take comfort in knowing that you are celebrating with the angels today...able to actually EAT your birthday cake! One day we WILL celebrate with you again.

We love you Noah...

Over the Rainbow

Rainbows have become very special to us...

The evening we drove home from the hospital after Noah died, there was a beautiful rainbow in the sky. It felt like a sign...a special message from Noah. I so wish we had stopped to take a picture...but our minds were just not in that place at that moment.

Later that evening, Nicole (one of Noah's home care nurses) stopped by and mentioned seeing the rainbow as well. In fact, I think her exact comment was "Noah, you little bugger, you're playing with us already!" A couple of weeks ago, Nicole showed up with this beautiful gift for us. It took me a while to find a home for it, but now that it is in the flower garden, right by our front door, we are so happy with it.
Thank you so very much, Nicole. This is such a meaningful gift...the perfect memorial for Noah. We are all in awe of the fantastic job you did...we love it!!

"Somewhere, over the rainbow,

Way up high.

There's a land that I heard of

Once in a lullaby.

Somewhere, over the rainbow,

Skies are blue.

And the dreams that you dare to dream

Really do come true.

Someday I'll wish upon a star

And wake up where the clouds are far

Behind me.

Where troubles melt like lemon drops,

Away above the chimney tops.

That's where you'll find me.

Somewhere, over the rainbow,

Bluebirds fly.

Birds fly over the rainbow,

Why then - oh, why can't I?

If happy little bluebirds fly

Beyond the rainbow,

Why, oh, why can't I?"

Charlie

They say a puppy soothes the heart and soul...

We picked up Charlie on friday and already he has been very therapeutic for us all and is keeping us busy. The kids love having him to dote on. This never would have been possible with Noah, but I can't help imagining how much Noah would have loved this little guy and what fun they would have had!

It's been 7 weeks today...how is that even possible???

Lasts

I was reading someone's blog today...another mother who lost her special needs child. She writes about all the unrecognized lasts. All those everyday moments in the time I now think of as "before". I think alot about those moments too as I look back and wonder...if I had only known...

Spending that last week at the lake and not in a hospital room...what a blessing that was. Our last holiday together. We have many precious memories to treasure from those days.

Sunday...just finally being home for the first time in weeks...our last day at home as a family of five. Watching Baby Einstein...napping on Daddy's chest for the last time. Part of me wishes I had known. I would have spent less time doing laundry, preparing to go into hospital, and more time with Noah....grabbed a few more hugs...soaked up a few more smiles...gathered up a few more giggles to store away for today.

Sunday evening...hooking up Noah's TPN, going through our complicated evening routine, and tucking Noah in his crib...the last night we would fall asleep listening to his concentrator...the last night we would share a room with Noah.

Monday morning...dressing Noah in the last sleeper ever wore...settling him in his car seat for his last car ride as we made our way to the ER for the very last time. And later that morning, watching him take his last breaths on his own...hearing him cry for the last time, before he was intubated and the machine took over.

Tuesday morning...Noah wakes up, fighting to pull out his breathing tube. We all frantically race to sedate him again...the last time he looked at me...the last time I saw his eyes.

Wednesday...the frantic action of the end drawing near...a million machines...making that final decision for Noah...

Letting him go...

Then the sudden stillness and silence.

Holding Noah for the last time...and finally, forcing ourselves to let go of his body and walk out of PICU for the last time...without Noah...now a family of four...and the beginning of many painful firsts.

Those moments are so vivid...seared into my memory. Lasts that are only recognizable in the "after".

Beauty From Pain

The lights go out all around me

One last candle to keep out the night

And then the darkness surrounds me

I know I'm alive

But I feel like I died

And all that's left is to accept that it's over

My dreams ran like sand through the fists that I made

I try to keep warm but I just grow colder

I feel like I'm slipping away

After all this has passed

I still will remain

After I've cried my last

There'll be beauty from pain

Though it won't be today

Someday I'll hope again

And there'll be beauty from pain

You will bring beauty from my pain

My whole world is the pain inside me

The best I can do is just get through the day

When life before is only a memory

I wonder why God lets me walk through this place

And though I can't understand why this happened

I know that I will when I look back someday

And see how you've brought beauty from ashes

And made me as gold purified through these flames

After all this has passed

I still will remain

After I've cried my last

There'll be beauty from pain

Though it won't be today

Someday I'll hope again

And there'll be beauty from pain

You will bring beauty from my pain

Here I am at the end of me

Trying to hold to what I can't see

I forgot how to hope

This night's been so long

I cling to your promise

There will be a dawn

After all this has passed

I still will remain

After I've cried my last

There'll be beauty from pain

Though it won't be today

Someday I'll hope again

And there'll be beauty from pain

You will bring beauty from my pain

~Beauty from Pain ~ Superchick

One Month

Today marks one month since we lost our Noah, although it feels like yesterday. We are all so very lost...the reality that Noah is really gone sinks in a bit more each day. I have tried to write this post many times over this morning, but my words are all a jumbled mess and it's hard to see through the tears. There is no way to accurately describe what I am feeling...what we are all feeling. "How are you?" is the question we get asked a million times over. How can we ever answer that question? Usually we give the pat "I'm ok" answer. But the truth...the truth is that, no, we are not ok...I can't imagine ever being ok again. Everyday is a huge challenge...everyday there are more reminders, more things that we miss. How can we be ok when a huge piece of our hearts was ripped out and buried deep in the ground?

Our whole world crumbled in a moment and yet life continues on around us as if nothing has changed. The sun still rises, the birds still sing, plans are still made.

Life goes on.

But for us, life will never be the same. We've heard some comments that now our lives can get back to "normal". I have to chuckle at that. The thing is, that the past 4 years was our normal. Yes, it was a precarious life, a life that was not envied by others. But we were good at that life. We loved that life. We learned how to roll with the punches, how to cope in the busyness. We'd do it all and more in a heartbeat, just to have our Noah back. For we got back SO much more than we ever gave. I hate our new normal...that this is now our reality. That our sunny little boy, who never held back his unconditional love, ceases to exist here on earth.

Yes, life goes on.

But for us, it will never be as full, as bright as it was with Noah.

"You keep track of all my sorrows.

You have collected all my tears in your bottle.

You have recorded each one in your book."

Psalm 56:8

Thank you

How to even begin to say thank you. There are so many of you who have been so thoughtful in the past three weeks. Please forgive me for not getting out thank you cards. I have neither the energy or motivation these days. So I hope you will all accept this post as my thank you.

Thank you for the many cards, emails and gifts we have recieved and for your words of sympathy.

Thank you for the flowers and plants that have been sent. They have brightened up our home.

Thank you for the meals and treats that have shown up at our door. They have helped so much on those days when it is hard enough just to get out of bed.

Thank you to those who have given Kailyn & Joshua gifts and made sure they feel loved and cared for.

Thank you to those of you who helped with Noah's funeral:

Thank you to our small group for taking care of many details.

Thank you Erin for the beautiful slide shows and pictures.

Thank you Dads for being pallbearers.

Thank you to all of you who had a part in the beautiful music for the service (Noah would have loved it!).

Thank you Ray and Ruth for your parts in the service.

Thank you Hilda for the beautiful tribute.

Thank you Doris for reading the obituary and also for your beautiful tribute.

Thank you Eric and Becky for reading scripture.

Thank you to those of you who prepared and served the food.

Thank you to Sysco for your generous donation of food for the funeral.

Thank you to the ushers, the VPU and for babysitting in the nursery.

Thank you to everyone who joined us that day in celebrating Noah's beautiful life.

Thank you for those very special people who have spent much time at our home during the past weeks. Thank you for being here and listening, even when you don't know what to say. You know who you are.

Thank you to all the staff at Children's Hospital who have taken such wonderful care of our family over the past 4 years. Thank you to Doris and Nicole for taking such fantastic care of Noah at home. We have grown to love our hospital family and we will miss you all so very much.

Thank you to the staff at Toronto Sick Kids for your wonderful care in Noah's last few weeks.

Thank you for all your generous donations made in Noah's name.

Thank you to our online friends who have been fundraising in Noah's honour. Noah will have an engraved paving stone on the Avenue of Angels at Give Kids the World that we can one day go and see. So much money was raised that other children who have passed away will also recieve this very special gift.

Most of all thank you for all your prayers. They are what sustains us in these very lonely days.

Saying Goodbye

"The Lord is close to the brokenhearted;

He rescues those whose spirits are crushed."

Psalm 34:18

Thank you Erin for capturing these beautiful memories for us. They are a treasure.

Balloon Release

"...And with your final heartbeat

Kiss the world goodbye

Then go in peace, and laugh on Glory's side,

and Fly to Jesus

Fly to Jesus

Fly to Jesus and live!"

Chris Rice ~ Come to Jesus

The Weight of You

There is a hole the size of the grand canyon in our home and our hearts. The "why"s, "what if"s, "should have"s and "could have"s never end. It hurts to breathe...

So much that I miss...

I miss your sweet disposition...the sunshine in our days...the way your eyes would disappear when you smiled...watching you bum scoot down the hall...untangling your tubes for the millionth time each day...picking up the tupperware left in your wake...hooking up your pumps every night...the smell of your hair just freshly washed.

I miss the sounds of you...your belly laugh...hearing you call out "mama"...your cry...the sound of your bucket trailing after you...the soothing sounds of pumps..the harsh middle of the night beeps...the gentle swoosh of the oxygen concentrator.

But it's the weight of you that I miss the most. I can look at pictures...I can listen to the videos of your laughter...I can still smell you in the last sleeper you ever wore...I can even still turn on the pumps for a moment, just to hear their familiar sounds. But my mind can no longer conjure up the weight of you. The feel of you in my arms...your tiny hands clinging to my shirt as I carry you.

I miss you.

Memories

This first video was played during the service on tuesday, and the second video was played at the end of the service, as we (the family) said our final goodbyes to Noah. Thank you so much Erin...we will treasure these always.

Desperately missing you, sweet Noah, more than words could ever say...

Obituary

Jesus opened wide his arms to welcome a special little one home. Noah Grant John Loewen was sent to us from heaven on September 21, 2005 in Winnipeg, Manitoba. Born with a rare genetic disorder, chromosome 12q deletion, Noah’s life was not easy. Noah spent much of his time in Winnipeg Children’s Hospital, although his family did everything they could to make sure Noah spent as much time at home as possible. Despite the many medical challenges, pain and frustrations, Noah was a delightful child with a happy disposition and a smile that could light up any room. He managed to charm everyone he met, and forever changed the lives of those he touched. Music was a huge part of Noah’s life and never failed to bring a smile to his face. He will be fondly remembered banging on his drum and strumming his ukulele.

In early spring of 2009, Noah was granted a very special wish through the Children’s Wish Foundation. He was able to travel to Disney World with his family to meet his favourite character, Tigger, and stay at Give Kids the World. This was a wonderful time of memory making and moments that the family will treasure always.

Noah spent most of his last few weeks in Toronto at Sick Kids being treated for intestinal failure, where many others were touched by his sweet sunny disposition. In early July, he returned home and was able to spend his final days at the lake, enjoying his Grandparent’s cabin.

On Monday, July 27th, 2009, Noah was admitted to Children’s Hospital and thus began a rapid decline. After his very courageous battle, Noah’s little body was tired. On Wednesday, July 29th, 2009, surrounded by love, Noah was received into the arms of the Father.

He leaves behind to treasure his memory, his father, Brad, his mother, Nichole, his sister Kailyn, his brother Joshua, Grandparents, one Great Grandmother, many aunts, uncles, cousins and friends. Donations can be made to the Children’s Hospital Foundation of Manitoba or to Give Kids The World.