Another step in our journey

Our road has taken another unexpected turn, one filled with blessing and challenge. If you would like to continue to follow our journey follow this link.

http://clarkkiddos.blogspot.ca/

Celebration of Drew's Heaven Birthday

September 28, 2009 - Miracle Beach, Vancouver Island, British Columbia

Tears. Love. Sorrow. Joy. Ache. Gratefulness. Prayer. Desire.

God in all.

Love through all.

Peyton's idea - "for my Drew"

A heartfelt kiss for Drew bear - only a bear, but a representation of so much more. This is a replica of the bear that lay with Drew every night and lays with him still. I kiss the bear, not idolizing it, or thinking it could actually pose in some way as Drew, but as a way of capturing a moment where I can connect with my Heaven son. Drew, I miss you.

The strength of the Rock that holds my family.

The incredible healing touch of God through the life of a child - I'm forever grateful.

I never walk alone. Praise God!

I will love you forever Drew - you have left your handprint on my heart. My soul eagerly anticipates the day when I will get to see you again, by God's grace. Kisses for you Baby Boy.

Tournament a Success!

I learned shortly after my last post that the final value of the funds raised by the golf tournament was $13,000, and it was matched by the CN Miracle Match, therefore bringing to total value to $26,000! We are so pleased to be able to contribute this much to the Alberta Children's Hospital Foundation! Thank you again to everyone for their amazing support.

I will resume regular posts soon!

Day for Drew 2009

First Annual Drew Clark Memorial Tournament!

(My shot at closest to the pin... gotta work on it! There is a ball there, but you might have to click on the picture to see it.)

Welcome to Glen Eagles Golf Course - Drew Clark Memorial Tournament

Mama with a few of Drew's favorite nurses

Thank to the family for all their support putting things together the day before!

The first annual Drew Clark Memorial Golf Tournament was a fabulous success! To all who participated or supported in any way, whether through donations or prayers, we owe you our deepest gratitude. We were overwhelmed at the support shown! There were 92 golfers, 145 people in attendance for lunch, and hundreds of people who participated through donations and the raffle.

Tuesday, August 11 dawned bright and cloudy. There were ominous dark clouds to the west of Calgary, where we were all heading. Jordan and I said our prayers on the way out there at 6:00 a.m., hoping that it would clear as the sun came up. We really wanted this day to be one that uplifted everyone who came, and that provided an opportunity to celebrate our Drew nearly a year after he left. We were also hopeful that the turnout would be good, and that we would be able to help some other families through any funds that we could raise. It felt odd to be asking people for donations, and at the same time, to be receiving donations - how were we in this position anyway? "Odd" puts it lightly. I was constantly overwhelmed at people's eagerness to help and to donate to this effort - why would they go out of their way to do this? Who were we to ask this of them? Would people really want to help? Would they be glad they had? These were only a few of the many things swirling in our heads as we went through the day.

People began to arrive and they just kept coming. Nicola, Aisling, Stephen and I greeted and guided people as quickly as they arrived, and I continued to be amazed at the turnout. The team had done a wonderful job of organizing (not due to me, I'm sure!) and things were off to a smooth start thankfully, in spite of the cloudy and now breezy morning.

Nicola at the putting green

8:00 a.m. - The gunshot sounded - the golf carts were off. It was set up in Texas Scramble format so everyone drove to their respective holes, and Nicola and I were off to our designated holes while Aisling set up for the luncheon (what an amazing effort she pulled off!). Nicola headed up a putting contest for the brave of heart, all the while managing to keep things on task and running efficiently. Nicola and James had decided we should change my location and role at the last minute, and they were easily able to persuade me to participate. I was at hole # 3, and I had the opportunity to try my swing against every golfer willing to take the challenge. Who would get closer to the pin? I determined that I am going to have to work on my game before next year, because out of 92 golfers I only got closer to the hole than 50 of them. That said, perhaps I won't, because I really did want everyone to beat me in order to be entered in a prize draw, but I didn't want it to look like I was pretending not to hit well. Maybe I will stick to my one golf game a year pattern...

At one point, I was sure it would rain. Drew's neurologist was there playing and about mid-morning his foursome came by hole #3. He mentioned the word, "rain," and it wasn't 2 minutes later when it began to spit. There had to have been more than one of us hoping our prayers for no rain would be answered right then! Thankfully, it quickly passed, and the clouds relented. They didn't clear, but I am actually glad they didn't, for there were more obvious sunbeams that morning peeking through each passing cloud than I have seen yet in a 4 hour period. It made me smile to think Drew was watching and celebrating with us. This was all for you my baby.

Lunch was amazing - there were even more people there! Where did they all come from?! And again, it made me think, "How are there possibly so many people here?" "How could we ever let them know how much this means?" Wow. Overwhelmed doesn't describe our state of being.

Once the the final donations were received and final tallies were done, we got the official numbers from Nicola - with your help we were able to raise $12,000 dollars. And every dollar of that will be matched this year through the generosity of the CN Miracle Match Program. $24,000! For our little Drew and others like him!! In one day! How do you say thank you for this, especially without tears streaming!??? I would take my Drew back in a heartbeat, but since wishing and praying doesn't bring him back, this is one of the best ways I can think of to show him how much we love him!

The funds raised through the tournament will go toward a Next Generation DNA Short Sequencer for the Alberta Children's Hospital. We are hopeful this machine will be able to provide families like ours with answers sooner, allowing for better support of their children. Our medical team did an outstanding job, considering they had little or no idea what they were working with for the first part of last summer, and still only a theory for the rest of the summer - we know it wouldn't have provided us with better treatment options for Drew, but it could for other families. (The Next Generation DNA Short Sequencer can be used to read genetic code in biological samples and can provide 50,000 times more usable data than current technology. The Alberta Children's Hospital would also be the first one in Canada with this technology - we had to send so many tests away, which only increased the wait. This technology would have an immediate impact on the hospital's ability to diagnose children with or at risk of genetic diseases and could increase what the clinicians currently are able to test for exponentially.) We couldn't make a difference for Drew, but we can for others like him. I hope our future is untouched by this disease again directly, but when I think about the possibility of another family member dealing with this again in any generation, it only serves to increase my determination to do everything I can to make the outcome different. That seems impossible, but genetic sequencing did too not so long ago. This is just the first step we can take in what might seem to us like Mount Everest. The mountain is long and the trek will be tough, but the views will be amazing, and the rewards even greater when shared with a team. Thank you for joining us on this effort!!! Please continue to pray God will bless our efforts and our direction.

Check out the tournament website for more pictures in the next few days - www.adayfordrew.com.

Thanks again to everyone!!!

Tuesday - gone, but where?

Our aim last weekend was a relaxing weekend, with time for reflection, rest and relaxation, with some kid-chaos thrown in of course. The outcome would lead me to believe Murphy follows us around.

We went to Drumheller for an extended weekend thinking it would be a hot location, if there is one to be had in Alberta, and for some outdoor activities and dinosaur hunting. It's only an hour and half away, but is an area a little like the Grand Canyon, on a smaller scale and known for its dinosaurs. We arrived Thursday and it began to rain. It rained (rephrase... down poured!) for 36 hours almost non-stop. Our tent would have floated away with us atop the air mattresses, calling for rescue. Emphasis on "would have." We called the family we were to camp with and said we thought we would stay at a hotel instead of setting up in the rain so they insisted that we stay with them. In their trailer. With triplet boys Peyton's age. We were so thankful for a dry place to stay, but I am sure we drove them to insanity - two families and four four-year-old boys in a trailer was an adventure that put the dinosaurs in the area to shame! We cut the trip a bit shorter than originally expected and headed out Saturday morning to get home in time to dry out before Monday.

We settled back in after the last drops evaporated to find our rhythm again after all the adventures of the last couple weeks. Drew's tournament was so incredible, it was definitely a highlight of the last couple months and we were beyond thankful for all the participation! We are still working hard to get all the last items wrapped up, totals tallied, and thank-you's out.

Our rhythm was a little stymied by a jig in it the early part of this week. Peyton decided he needed to check back into the hospital just to keep us on top of things. His visit was a short one this time, but it threw us for a pretty good loop. He had his last surgery in April after which he had not really had any problems with his stomach. We noticed he started having a few tummy aches again in the last few weeks, but there was so much going on, it could have been from stress or lack of fluids due to irregular routine. I worried about it a little, but hoped they would subside with better diet management and routine. No. We were back at it again, watching our son writhe in pain and unable to do anything to help other than offer heat packs, kisses and snuggles. The helplessness that had passed with the experiences rushed back in a flood and threatened to overwhelm. Jordan and I looked at each other with disbelief, confusion and discouragement reflected in each other's eyes.

In honesty, the thought went through my mind for the first time, "This could have all been averted if we would have caught the appendix before it burst - why didn't we catch it?!?!" I felt anger. Anger at the medical world. Anger at life. Anger that my son knew more suffering at four than I had ever known. Who was I angry at though? When I put a voice to it, Jordan handled it with tact. He reminded me that there was no way ANY doctor would have known about Peyton's appendix until after the fact due to its location, and that Peyton was going to be ok. He allowed me my anger, and watched as it subsided, turning into resignation and hope. I remembered a conversation from a very recent conversation where I said with conviction, "With every new low we experience, we seem to reach a corresponding new high," and I wondered where this would lead.

Peyton walked into his room in the emergency room, looked around (while clutching his tummy) and commented on the similarity of this room to the one he was in last time he was throwing up so much. He climbed up on the bed like it was his own, circled like a cat before he snuggled in, and asked me to turn the tv on. No fear. Just fact. Ok. He fell asleep right before each procedure - where did I say Murphy was?? Jordan took him for his X-Ray, held him upright in a sitting position while he snored away, and carried him back to his room, all while he slept. Peyton might have continued sleeping had we not decided to poke him to start an IV! I was surprised he had fallen asleep in the first place, in spite of the tummy cramps, but it seemed to help the cramps subside (chicken first, or egg?). We tried to wake him up before poking him, as that seemed altogether too cruel of a way to wake a person, but he was determined to keep sleeping, wet washrag to the face and all! The needle did the job.

If someone woke me with a needle, you'd want to plug your ears. If someone woke Jordan with a needle, there would be someone on the floor, and it wouldn't be him. The nurses placed bets as to whether or not Peyton would wake tearing at things. He woke with a gasp and saucer eyes, ready to scream, but allowed only gasps out, and wondered why he was being invaded. It only took one reminder that staying calm meant they would probably only have to try once, to bring him back to sanity (or to squelch every natural instinct in his poor little body!). He immediately switched tracks and told them calmly but forcefully, "I'm DONE." (translation - get out of here!)

Peyton was amazing to watch. Had you watched from the outside, where you could not determine age, you would have thought he was far older than his four years. Once the IV was started, he maneuvered the line deftly, and sat there playing on Jordan's blackberry with an unnaturally straight left arm like there was nothing wrong, and certainly not something that might cause discomfort to a normal, inexperienced hospital newbie. (I cringed just thinking about it.) The only time he actually showed his age and allowed a window into his mind was when he was uncertain about a possible intervention. We told him he had to do a pee test and he thought he had to get a "pee tube" (catheter). He furrowed his eyebrows and the window into his experiences opened with a whoosh. We quickly clarified and he immediately closed the window again. My son is far more mature than I am in some ways I'm afraid. My dear brave boys. I wish I could take both of their ailments away and make them my own for their sake. Strangely enough, I believe I will always say that I am thankful for these things we have learned through, (though I would take them back if I could) for through these things we have learned what love really is, and how much I would do for my children. I would take on so much if I could just make it better for them... my words - but nothing new to someone so much greater than I. Does He really love me as much as I loved them? I had no concept before our journey. I am sure I still don't, but I know how much I would do for my sons.

More to come on the tournament...

Amazing...

The tournament was AMAZING. We are leaving town for a few days to catch our breath and I will post about the success upon our return. All I can say it that it was an absolutely amazing day and thank you so much to everyone who came out. Even more, thank you to Aisling and Nicola (and their husbands/cheer squads) for pulling together such an incredible event.

Thanks to everyone who purchased raffle tickets too or who made donations - each one had such an impact on Jordan and I, and will go so far. Thank you.

More to come soon!!!

Tournament Day!!!

We are very excited about tomorrow and are very hopeful that the day will be a success! What would make it a success? If people are reminded of the purity of love, of the wonder of a child's smile, and of the value of community support, it will be a success. To those participating from a distance, if I could give each of you a hug and a thank you that comes from the very depths I would in a heartbeat. We cannot say thank you enough.

My greatest fear for the day is that we will not be able to adequately convey how thankful and amazed we are at the outpouring of support for this event and our family, or how thankful we are for their involvement. How do we possibly put that into words?!

A verse read Sunday gives me renewed strength this week as we have opened up Pandora's box again... "You will grieve, but your grief will turn to joy. ... Now is your time of grief, but I will see you again and you will rejoice, and no one will take away your joy." John 16: 20, 22 I am so grateful for the joy we experience in spite of the grief, and was reminded on the weekend that we do get to see Drew again, and will see his and our keeper too. That is a source of joy for me! And nothing can change that, no stressor, no distraction, no person, nothing at all! A good friend said, "Perhaps Drew is praying for you." What a thought.

Please pray for the success of this Day for Drew.

Check it out at www.adayfordrew.com.