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Posted May 18, 2012

One year ago today my son, Drew Kai Parke was born. Having him join our family was one of the crowning events of my life. He brought unprecedented joy, peace and fulfillment to our family. And although his passing has brought comparable levels of sorrow and grief into our lives, today we celebrate his birth and life.

Son, we wish you a happy birthday. We love and miss you. We are proud to have had you as our son. We look forward to our eventual reunion.

Posted May 18, 2012

In honor of our son Drew's birthday we lit a Chinese lantern and released it.

Posted July 24, 2012

Today is a bad day. One year ago on this day Drew had his first observed seizure. We were traveling home from a friend's house in Rochester when he began to cry in a weird way in the back seat. Alexis also said that he had bubbles coming out of his mouth. Brittany climbed into the back seat to check on him and immediately noticed things were not right. She instructed me to pull the car over. Just after we pulled him out of the car seat his crying waned until it (along with his breathing) stopped altogether...it was the most horrifying moment of my life up to that point. Brittany immediately began CPR while I called an ambulance. She quickly got him breathing again and the ambulance took him to the hospital...

Posted August 3, 2012

Today is bad day #2. It was one year ago today that Drew had his second observed seizure. We were at home relaxing (which was strange because I almost always worked on Thursday nights...but for some reason they said they didn't need me that night), when he started to cry in a weird way again (exactly the same as before). After our original stay in the hospital the doctors assured us that his first episode had only been a bad case of acid reflux...but as his crying/breathing waned this time Britt and I both knew that something more serious was occurring to our son. Once again, Britt began CPR while I called an ambulance. Again, he quickly began breathing again and was eventually checked into the hospital...he would never leave the hospital alive again.

Posted August 5, 2012

Today was the day (one year ago) when Drew had his MRI. He had an EEG the day before that showed some slightly irregular brain waves and so the doctors wanted to get a better idea of what was happening. Our worlds came crashing down around us when the doctor entered the room to tell us the MRI results had come back. "Your son's brain is significantly abnormal. It's nowhere nearly as developed as it should be and is actually atrophying (shrinking)." He went on to explain that he had no answers...he didn't know what had happened to Drew, he didn't know if it was still occurring and he didn't know the full extent of the damage. The sorrow and disappointment I felt during that day was more poignant and hurtful than anything I had ever experienced previously. I felt as though I had failed in my responsibility as a father to protect my son. It was a bad day.

Posted August 6, 2012

One year ago today Brittany and I experienced a bright spot in what was otherwise a nightmare. It was today that several members of my family flew from UT to NY to help us manage during this difficult time. On little more than a day's notice they dropped everything to come help. They joined Brittany's family and dear friends from our Ward (who we consider family) who had been there since the beginning. How grateful we were for the comfort and strength they all provided to us...we would not have survived without them.

Posted August 13, 2012

Today was the day Drew had his third (and final) Spinal Tap. The first one was done only hours after the MRI to determine if there were any infectious diseases that could be causing his brain atrophy. The second had come weeks later to facilitate testing of his neurotransmitters (the doctors held off on and discussed this one for several days because the amount of spinal fluid needed was very high relative to his little body). This final Spinal Tap became necessary as his condition (which had been steadily improving) deteriorated suddenly and rapidly one day. It was done to try and determine if he had pneumonia or meningitis. Anyone who knows anything about Spinal Taps can attest to their difficult and painful nature...especially for a body as tiny as Drew's. Before each procedure I gave Drew a blessing. I also was able to hold him as each procedure took place. As I watched Drew humbly submit himself by laying there and enduring these repeated procedures I wished more than anything that I could take his pain upon myself so that he could rest and be at peace. Witnessing Drew's suffering was the hardest thing I had ever been required to endure.

Posted August 14, 2012

Thanks for posting this Mark. It brings a lot of things back...Over the past weeks as I've remembered last year's experiences, at times it's felt as though I was actually back there (like I was reliving it all over again). There have been nights when I've awakened and for a brief moment actually believed I was back in the sleep room at the hospital...that I could walk down the hall and be with Drew again. I'm saddened when I realize that's not the case. As difficult as the time in the hospital was for us, we were grateful because we were together.

Posted August 14, 2012

This was taken by Brittany on one of the good nights at the hospital before things turned for the worse. Despite the physical infirmities he had, Drew was perfect to us. We could not have loved him more.

Posted August 14, 2012 1:00am

It was at this very moment last year (1:00 am on August 14th) that Drew's condition deteriorated so badly that our choice was to either intubation him (insert a tube that would breathe for him) or let him pass away. Neither Brittany or myself could believe it, only 24 hours earlier his condition had been improving. He had been awake and alert and we had enjoyed some time interacting with and loving him...and yet here we were. Although it was painful to see my son being kept alive by a machine, I was comforted somewhat because I knew that his body could now rest while the machine did the work. That night was long and dark for us...yet we still had Drew with us, how lucky we were then!

Posted August 22, 2012

While the past few weeks have been rough (and the next couple of days will be even worse) we try to hold on to the special moments we had with Drew. He was such an extraordinary little guy. His short life had a more profound effect on me than I ever thought possible. I was proud to be his father (and still am).

Posted August 26, 2012

Then came this night...it was this night last year that God's ultimate plan for Drew was unveiled. While both Brittany and myself had hoped, fought, prayed, fasted, plead and cried for our son's life, it was made known to us in unmistakable terms that God's will was otherwise. We were called on to do the impossible: stop fighting and allow Drew to move to the next stage of his journey. I've regretted that decision literally every day of my life since then. But my regret is borne out of selfishness...MY desire to have Drew still here. I've since come to more fully understand that what occurred that night (while the hardest of all the options for me and Brittany) was the best thing for Drew. His suffering was stopped. His pain was alleviated. His spirit, which had been held captive by his broken and dieing body, was finally given freedom. We mourn his loss and suffer because of his absence. Yet we take comfort in the knowledge of his transcendence. We love and miss him...

To commemorate Drew's life, I've posted a copy of his Eulogy in my Notes for any and all who'd like to read more about his life and what he meant to us.

Posted August 28, 2012

That's my boy!