Tuesday, December 29, 2009
Sunday, December 27, 2009
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.
Monday, December 14, 2009
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.
Thursday, December 03, 2009
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.
Monday, November 23, 2009
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.
Thursday, November 19, 2009
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.
Friday, November 13, 2009
Monday, November 02, 2009
Thursday, October 29, 2009
Tuesday, October 20, 2009
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.
Monday, October 12, 2009
...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.
Friday, October 09, 2009
Tuesday, October 06, 2009
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!
Tuesday, September 29, 2009
Sunday, September 27, 2009
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.
Monday, September 21, 2009
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.
Saturday, September 19, 2009
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.
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!!
Wednesday, September 16, 2009
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???
Tuesday, September 08, 2009
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".
Wednesday, September 02, 2009
Saturday, August 29, 2009
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.
Tuesday, August 25, 2009
Friday, August 21, 2009
Monday, August 17, 2009
Thursday, August 13, 2009
Monday, August 10, 2009
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.
Saturday, August 08, 2009
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...