Sick again...

Hi Everyone,

It's odd... for the entire 16 months Grace was ill, I do not recall ever being unwell (well physically at least.) You would think with being in hospital as much as we were that I would have picked something up, but I didn't. I don't know if my body was in "survival" mode and did not slow down even briefly enough to allow illness to set in, or if this was a "gift" facilitating me to be able to care for my baby to the best of my ability. Either way, I was physically well for these 16 months. I am now fighting my 2nd cold of the season having enjoyed only 4 days of being well since my 1st. Seems as though Ian picked this one up at work and I was unwell within 24 hours of him feeling the symptoms. He seems to be a day a head of me and is actually "out and about" today so I'm looking forward to doing the same early in the week. I really don't care about the cold... it's just a cold, but I find being unwell hard for two reasons. One... It makes me realize how unwell a little cold can make you feel. It makes me think about Grace's sever illness and acknowledge the countless days/ weeks/ months she must have felt so extremely unwell yet at the same time knowing no other feeling so possibly just believing this was the way a person always felt. I question whether she was so tolerate of treatment because she didn't know how it felt to feel well. This makes me so very sad...but also very proud of her at the same time. Sad that my baby didn't have the simple luxury of waking up in the morning and experiencing what it felt like to function in a well body. But so very proud that she endured such tragic fate with smiles and ambition, never once suggesting self pity. She taught me so many lessons that I'm so grateful for yet so wish her suffering could have been nonexistent. The other reason feeling unwell is hard is because I'm able to lye in bed and do nothing while sick. Although this may seem like a positive, for me it is heartrenching. When you're actively parenting and you are unwell, you don't have the "luxury" of staying in bed to help your body regain it's health. You have to "suck it up" and carry on with your days responsibilities. Well, last night Ian and I were in bed at 6pm, drinking soup and reading magazines until we dosed off around 10ish. I know to many this may sound luxurious but it's not... it is just lonely. I hate having this "luxury." It makes me miss her so very much. I think this is one of those "be careful what you wish for" things. If you find yourself wishing for some quiet as your children race around "driving you crazy", believe me when I tell you to be careful what you wish for, quiet is very lonely.

Mama misses you baby.
L~

P.S. I'm unable to volunteer at Sick Kids. Since I'm a bereaved parent, there is a waiting period that I must fulfill prior to being involved with the hospital. For now I will just volunteer with Grace's nursery school and focus on fund raising for brain tumour research until my waiting period is complete.

Trip to Sick Kids

Hi Everyone,

Sorry I have not posted in a week, my internet has been giving me some difficulty. Ian and I have been keeping busy. As many of you are aware, Ian likes to build things and has been busy building shelves/storage closets in our basement and garage (this also helps him with his anxiety.) This weekend he worked with a friend to build a deck. Last week a cold slowed me down a bit but I enjoyed spending time close to home with friends and their kids. I miss parenting Grace so much. I try to find some comfort surrounding myself with my friends children. So last week I was going to blog about our first trip to The Hospital for Sick Children since Grace has died. Ian and I were in Toronto for a Raptors game and we planned to attend mass downtown that Sunday evening at St. Mikes since we had not gone to mass that morning. We got out of the game and had an hour before mass began so we decided to pick up a couple of pizzas and bring dinner to two families we know who are currently admitted to the bone marrow transplant ward at Sick Kids. Two children who received transplants at the same time as Grace have been readmitted to that ward since they are fighting graft vs. host disease (a possible complication of donor bone marrow transplants.) As soon as I entered the hospital my heart started to race. The elevator up to the 8th floor is always the worst. Most parents in the hospital are aware that the 8th floor is the oncology floor. When ever I would get in the elevator and press "8", I always felt that others were counting there blessings that although they were in the hospital, at least they were not on "8". We delivered the pizzas and had a quick visit with the two children we knew... both looked very unwell but are fighters and will hopefully regain their health. I hated being there although I would spend a million more days there if it meant being with my girl. When I left I realized how quickly I have forgotten the hell of hospital life. The constant anxiety associated with not knowing whether tomorrow will bring better or worse health for your child. Your inability to save your baby from the overwhelming pain of disease and endless medical procedures. Days... weeks, months with little sleep, no privacy, surviving purely on the dream that your baby will not be snatched from your arms by death. As soon as I returned home I Emailed my social worker asking to begin volunteering at the hospital in some capacity that may help parents survive these unbearable stays. I have to go through some training but should be able to begin volunteering soon. Please pray for the health of all the unwell children at Sick Kids but also remember the parents who want nothing more than to continue to have the opportunity to hug their children. I'm going to work with the hospital to hopefully come up with a way that we could possibility bring some comfort to these parents over the holidays. Please stay posted for more details.

Mama misses you baby.
L~

P.S. Last week I received 7 more donation cards from the hospital drawing my attention to those of you who have place money in Grace's research fund. Thank-you all again so much for financially supporting brain tumour research at The Hospital for Sick Children. For those of you still interested in donating please visit www.sickkidsfoundation.com . Please designate your gift to The Grace Compagnon Stanley Tribute Fund. Thank you all again so much for keeping Grace's memory alive via brain tumour research.

Sweet Nayos

Hi Everyone,

Well I logged on a couple of hours ago with the intention of writing to you all about our day which included our first visit to Sick Kids Hospital since Grace's death, as well as attending mass at St. Mike's Cathedral where Amazing Grace just happened to be the recession hymn. But when I logged on I first checked my Email. Tonight I received a note from a fellow caner mom. Her name is Christy. Christy and I met through a mutual friend, Josee (also a cancer mom.) The three of us had the opportunity to go out to dinner twice during the many months that we survived (not lived... survived) at the hospital while our children under went aggressive chemo therapy. These dinners were always planed as a "break" from the hospital but would result in a strategy session of advocates brainstorming to discover possible care options that may have been overlooked by the professionals... hardly the "break" that we each intended and so desperately needed. Tonight I opened Christy's Email to read the following:


Saraphine Nayohan Karly Cheechoo

November 1st, 2002 - October 4, 2006

My heart aches - we miss our Nayos so much.


I am overwhelmed with disbelief that sweet Nayos' body died one month shy of her 4th birthday. What had appeared for the last year to be dormant residual brain tumour suddenly aggressively progressed and metastasized extensively through her spine. 14 days after her family learned of this progression and one day post her first palliative spinal radiation, Nayos left this earth. How does this happen?? I am devastated and infuriated with this chain of events. Although my fate has been very similar to that of Christy's, for some reason, once Grace had died, I drew strength by thinking that my fate yet devastating was sealed, and by me living this tragedy that others would be spared similar devastation. Receiving Christy's Email was a rude awakening that this disease has not only devastated my reality but will continue to devastate the reality of many others. Other mothers will have to endure the heart ache so overwhelming that you becoming physically ill with nausea. How is it possible for such evil to invaded the lives of those who's only wish is to shower their child with love. I am speechless.

May Grace and Nayos' spirits find one another. May they find peace and joy now free of disease and able to frolic in the clouds as toddlers should.

Mama misses you baby.
L~

Hard Afternoon

Hi Everyone,

So I had some errands to run this afternoon. Some stuff for Grace, some mindless stuff. First I returned Grace's at home medical chart to Comcare (the company that provided Grace's in home nursing). This was kind of weird but didn't seem to upset me much. When I dropped it off, the receptionist was very nice, she didn't ask any questions and I wondered whether or not she knew that I was returning it because my baby died. This thought often crosses my mind. I could be doing something completely unrelated to Grace... like standing in line at the grocery store, and I'll catch someone looking at me, this will make me wonder whether they can tell by my look or the vibe that I'm giving off that my baby has died. Losing a child kind of results in an identity crisis. See if your spouse dies, you become a widow. You acquire a new title to describe to society your new reality. When your baby dies, what do you become? From the reading I've done on the subject, it is suggested that you continue to refer to your self as a parent, even if the child that has died is your only child and you are no longer able to actively parent. But this doesn't really cut it. Strangers in idle conversation have asked me if I have children since Grace has died and I respond "Yes". They smile and ask "boy/ girl, how old etc.?" I then respond "girl, 2 1/2" and try to divert the conversation to their children. It seems unfair to shock them with the "detail" that Grace has died. However this response does not describe to society my new hellish reality. Why is there no "new title" to describe a parent who has lost a child? To help us communicate to others our new reality without having to shock them with "my child has died." I think there is no title because it's not suppose to happen, parents should not have to bury their children.

Anyways, I continue with my errands and go to the Winners at Dorval and the QEW. Next to this Winners is a Shoe Company. As I'm leaving, I see a women crossing the parking lot to enter the Shoe Company when a 3ish year old comes running behind her, only wearing a T shirt, it was quite cold today but I immediately assumed this was the result of this little spit fire insisting on dressing himself. He began screaming "NO MAMA NO!" His tone was similar to that of Grace's when she would plead with me to stop the a nurse from poking her arm for an IV start... He had the same desperation in his voice. Then he continued to say "NO MAMA NO... NO SHOPPING MAMA, PLEASE NO SHOPPING!" His mother then picked him up and carried him kicking and screaming into the Shoe Company. My heart broke and I was devastated for hours. I kept trying to convince my self that he was a well cared for child that was most likely just in a typical 3 year old power struggle with his mom regarding what activities would fill their afternoon. He was not being physically or verbally abused... just being brought shoe shopping... his mom was most likely picking him up winter boots due to our abrupt change in weather. I thought a lot about why this effected me so much... why witnessing this chain of events devastated me and dominated my thoughts for hours. I think it was because his tone was so desperate, pleading not to participate... so similar to how Grace would plead when she recognized that a painful medical procedure was eminent. In that moment I wished that I could rescue that little guy from his devastation... scoop him up and bring him to the park instead of the shoe store. So many times I was unable to rescue Grace because the solution was not as easy as bringing her to the park instead of the shoe store. I had to allow her pleas to go unanswered in hopes these painful medical procedures would save her life. I hope Grace understands this. I hope she knows that I would have answered her pleas and rescued her if I could. If you have the luxury of rescuing your toddler from what in there world is devastating with a trip to the park, ice cream... hell, even a puppy... do it for me. Rescue them if you can because many parents of sick kids can not rescue their children from devastation with these easy solutions.

Finally, I went to the pharmacy to drop off all of Grace's unused prescription meds. Do to the toxicity of many of these meds (chemo etc.) I can not dispose of them myself. Again, when dropping of the meds, I wondered... do they know that I'm returning them because my baby has died? I returned to the car for a good cry because I hated to give anything of hers away... even her chemo. I miss her so desperately... so much of what should have been will no longer be.

Mama misses you baby.
Les

Happy (??) Thanksgiving

Hi Everyone,

So today is Thanksgiving... the day to give thanks right??? So I'm sitting here wishing I could give thanks for what I gave thanks for last year... Grace. Then it dawned on me... I can and I should. Although Grace is no longer physically with me, she was for 2 years and 7 months. I wish she could have been with us for 100, but 2 years and 7 months is still better than having never been blessed with her at all... right?? Of course... sometimes I question this because the hurt is so bad as a result of her untimely death that I question whether having never loved would be better than having loved and lost. However, to survive this tragedy, I must be thankful for the 2 years and 7 months that Grace was physically with me and I must be thankful for her final gift to me... And that is the person I will become as a result of what she taught me through her life and death. Mama will make you proud baby. Grace continues to guild me everyday...

I'm Still Here

Mother and father, please don't mourn for me
I'm still here, though you don't see
I'm right by your side each night and day
And within your heart I long to stay
My body is gone but I'm always near
I'm everything you feel, see or hear
My spirit is free, but I'll never depart
As long as you keep me alive in your heart
I'll never wander out of your sight
I'm the brightest star on a summer night
I'll never be beyond your reach
I'm the warm moist sand when you're at the beach
I'm the colorful leaf when fall comes around
And the pure white snow that blankets the ground
I'm the beautiful flower of which you're so fond
The clear cool water in a quit pond
I'm the first bright blossom you'll see in the spring
The first warm raindrop that April will bring
I'm the first ray of light when the sun starts to shine
And you'll see that the face in the moon is mine
When you start thinking there's no one to love you
You can talk to me through the Lord above you
I'll whisper my answer through the leaves on the trees
And you'll feel my presence in the soft summer breeze
I'm the hot salty tears that flow when you weep
And the beautiful dreams that come while you sleep
I'm the smile you see on a baby's face
Just look for me, mother and father, I'm everyplace!

~Author Unknown~


Thanks to my friend Natalie for sending me this beautiful poem.

Mama misses you baby.
Les

Happy Birthday Nana!

Hi Everyone,

Today was Nana's birthday. To be honest... I didn't realize this until this morning. Through Grace's illness, I trained my self to live in the moment and weaned my self off the Aries tendency to plan tomorrow today. It's odd, I always used to watch the weather network, to anticipate the week and choose appropriate activities based on the weather. I have not done this for months. It is now my natural tendency to plan a day only once I've woken up and been blessed with health. Writing that sounds crazy but it has truly become my reality. So back to my point... It was only once I woke up and turned on Breakfast Televison that I noticed the date in the bottom corner of the T.V. I knew with this being the first "event" since Grace died that Nana would have been happy to let it slip by without recognition but Grace would not have wanted this. Instead I headed to the flower shop and Grace (in spirit of course) and I picked out some beautiful pink flowers for Nana. I delivered them and we had a wonderful two hour chat. We spoke a lot about Grace, a few tears were shed but more smiles were shared. Nana misses you very, very much baby. So does Papa. They are taking good care of Willie and Simba for you. Nana dried flowers from each of the special arrangements sent to celebrate your life. She also cares for original Cat and keeps your special pink jammies close to her.

Mama misses you baby.
Les

Ian's first day back to work

Hi Everyone,

Sorry I have not written for a week. I'm having a hard time figuring out what to write now that I am no longer able to report on Grace's daily activities/condition. Ian and I are doing OK. We still cry everyday for some reason or another. Sunday was hard. We attended our first social event childless. It was a friends daughter's baptism and many of the children there were Grace's age so we missed her very, very much. We got home around dinner time and went to bed immediately to recoup. Today Ian returned to work. He was very anxious waking at 3am and not being able to fall back to sleep. My girlfriend Lesley was here at 8:30am and Jen (with 2 of her 4) joined us at 9:30am. We hung out and chatted... it was really, really nice. I'm so blessed to have such good friends. I know they recognized that with this being Ian's first day back to work that I may have a hard time being home alone, so without even having to ask... they were here to keep me occupied. Ian had a good first day back. He felt very welcomed and is looking forward to moving forward with some projects that have been sitting on the back burner for a while. I have to admit that I was worried about how Grace's death was going to impact our marriage. Since Grace became ill, parenting consumed every waking minute leaving no time to just be husband and wife. Now that it is just the two of us, I have quickly realized that Ian and I are not just Grace's parents, but truly each other's best friend. Even though right now surviving this tragedy seems close to impossible, with my hubby, such good friends and family by my side... It will happen.

I hope all is well with everyone.

Mama misses you baby.
Les