On September 21/05 we were blessed with a beautiful son. Born with a chromosome 12q deletion (q15q21.2), the challenges were many...cleft lip/palate, complex feeding issues, developmental delays, failure to thrive, multiple infections, blood clots, asthma, sleep apnea, GI and pulmonary bleeds, TPN dependency and kidney issues. Noah embraced life and taught us how to love. On July 29/09, Noah's journey ended, leaving us on a new journey...this journey on the pathway of grief...
Mothers Day is a tough day. I think that no matter how many years go by, it will always be one of those days that will always be, well, just plain crappy. Although I love spending the day with my other kids, the void in our family is so much more noticable on a day like today. This year Brad was away in BC on business. But Kailyn & Joshua did what they could to make the day special. I awoke to them creeping in my bedroom, with some rewarmed pancakes they had found in the fridge with fruit and yogurt. Along with that came the traditional homemade cards from school of course. It was very cute and I was touched.
We decided to laze around in bed, skip church (another place I don't particularly enjoy being on mother's day anymore), and instead, head to the cemetery so I could spend the morning with all of my children. We always enjoy seeing what others have left at the grave. I love that there are others out there who care enough to stop by the cemetery. Thank you!! We spent some time cleaning up the grave a bit, and had some fun taking pictures. It turned out to be a beautiful morning in between rain showers.
I miss my little Noah so very very much. I miss having my identity wrapped up in him and being known as "Noah's mom". Oh how I long just to hear him call me "mama" just one more time! I am so very proud that I was given the precious gift of mothering such a beautiful child on this earth. Those years are a treasure to be carried with me always. Miss you buddy.
It's been exactly 18 months since I held my boy. 1 and 1/2 years...it seems absolutely unbelievable to look at those numbers. How is it even possible that I have lived that long without him????
Some people still ask once in a while how we are doing. Other's have stopped asking altogether...assuming I guess that we must be "over it" by now. Although we will never, ever be "over it", in many ways we are doing "ok". Somehow life does go on...
Brad no longer has to play "Mr Mom" at home and keep the household running. This has given him much more time to devote to his business, which in turn has helped it grow tremendously. Although he misses Noah so much, he loves to share Noah's story with everyone he meets.
Kailyn has struggled with sleep issues since Noah's death. She was spending every night in our room during the first few months. Gradually the nights have improved, and she is able to sleep through the night in her own room. She did decide to claim the room on the main floor that was meant to be Noah's room. It is still decorated with many "Noah" touches and she is much happier there. She still has some pretty emotional days where she falls apart, but for the most part she has adjusted well.
Joshua has never shown much outward emotion or grief. But I know he processes things in his own way and every so often out of the blue, he'll sigh and say "I miss Noah." He still prays faithfully each and every night that Noah will have a good time in heaven.
As for myself...my life has completely changed. I have been back at work for about a year now. I did take a different nursing position with home care as I really needed a fresh start and my job is really a perfect fit for me right now. I have time that I never had before....time to take care of myself, to exercise, to eat right, to spend time with friends, to enjoy my other kids, to travel, to sleep through the night. It has taken me a long time to figure out how to live a "normal" life. As strange as that may sound, I really had forgotten how to do that. I am still in the process of learning how to live this new life. It's one day at a time.
Slowly, I have sorted through Noah's things, giving some away and storing or displaying the most treasured ones. We sent boxes of medical supplies to Romania to be used by a missionary couple. My mom made a beautiful quilt with some of our favorite items of clothing that we snuggle up with on the couch. But the crib still remains in our room. I don't know why that is the one thing I have been unable to tackle, but there is a comfort in having it there. There have been many days where I have felt ready to take it down, but both Brad & I just never seem to be able to get around to doing it. Perhaps it is the huge gaping space it will leave there, or perhaps it is just one last reminder that our lives are completely changed. And so for now it will continue to sit there for as long as we need it to.
The waves of grief still hit me...some days just as intense as if I was back in that ICU room...some days it still takes all my willpower to get out of bed. All I can do is ride them out, knowing that when the wave subsides, I will be able to laugh and enjoy myself...until the next one hits. I long for my old life back. I long to be eating crappy hospital food...to wake up with an aching back from sleeping yet another night on those hospital chairs...to be stuck in that hospital room thinking I just might go crazy watching baby einstein for the millionth time...to be woken multiple times a night from beeping pumps...to fall asleep to the gentle rise and fall of the oxygen concentrator. I miss planning my day around Noah's TPN schedule and meds. I miss the people who loved and cared for my son. I miss the craziness of our life with Noah. I just really, really miss my son.
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.
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!
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.
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.
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...
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.
I am mom to 3 beautiful children. I also work casual as a nurse. Our life is a crazy one, and nothing like we ever expected it would be. Yet, this journey has changed me and the way I view others. And it has helped us slow down and enjoy the most precious things in life. I wouldn't trade those lessons for anything.