We have experienced more than we thought possible in the last few weeks. From the time of our last post we were told Drew had actually stabilized and could perhaps be around for a few more months. It seemed he had reached a plateau and was doing alright - a relative term. He was asleep most of the time and when he was awake he didn't seem to look at us, but through us. His senses were going, and his autonomic nervous system began to fail more quickly. He seemed to enjoy a few long baths and his music therapy, and to relax with snuggles, but he was definitely not the same Drew as even the one we brought in to the hospital two and a half weeks ago. He no longer seemed to have much sense of touch and little we did by mid-week elicited a response. I think Jordan and I knew he was on a mission to depart sooner than later, in spite of what the doctors were estimating early last week. It went so quickly and by Thursday he was in a coma. He had stopped seizing which was a blessing in a way - he looked so relaxed.
Friday was difficult - we were again presented with some difficult decisions about his future. Did we want to cut back his nutrition and just let him start to go slowly? His brain was very ill, but his body still seemed to be functioning well. Did we want to continue to support his body? They thought he would be comfortable as he was apparently completely unaware of anything we were doing to him, but we were having a hard time with the idea of not feeding him. It seemed we would be taking the role of God in deciding when he should go in a way. We thought through every angle we could and still didn't feel comfortable with it. We prayed about it that day and prayed that God would either make the decision apparent or decide it for us. Little did we know how quickly God would respond. He is faithful.
We spent every hour possible with Drew over the last week, even sleeping beside him all night long ("sleeping" said loosely - I don't think hardly a sigh or a visit from a nurse went unnoticed!). Last night we took him out for Chinese... we put him in his kidcart and escorted by his oxygen tank and his feeding pump we went down to the cafeteria for Chinese takeout with our whole family. We made a pretty good parade, all we needed was candy to throw! What a special experience. The nurses got a real kick out of it too - Drew has made so many special friends.
Jordan got some special cuddles last night and I was awake with him alot of the night, trying to keep his little feet and hands warm. I knew better, but that was the only thing I could do for him, besides snuggling in close. By morning we knew something was different and called the family in. We were blessed to have them nearby when Drew returned to God. I held him for 3 hours this morning, as close as I possibly could and loving every second. What a gift. He will warm my heart forever.
Thank you to everyone who has prayed so diligently for Drew and our family through this time - please continue to support us as we transition to this next stage. We have gently closed one chapter but until we have more answers about what Drew's disease was we will not yet be able to close the book. We yearn for your prayers that God will be in our midst powerfully, that He will comfort and guide our family - immediate and extended, that we will be able to get some answers on what his disease was and that as difficult as it is that it will be one that affects Drew only. That is so hard to say, but my heart aches to think of it affecting anyone else. If this experience has taught me anything it is that we must be so much stronger than we think we are! It's amazing how much strength we found through a simple little kiss on Drew's fuzzy little head!
As we left the hospital this afternoon without Drew it had to be the hardest part yet. The last kiss I left with him was both heartwarming and enlightening. It was not our Drew that we kissed, yet with the last kisses, it felt we could leave his body there and continue on without his flesh, but with his spirit. He is in a better place and we are aware of a sense of peace about his departure.
As you read this, we hope and pray that none of you will feel discouraged by Drew's passing. We want his life to bring encouragement about God's faithfulness to those that knew Drew. It would mean so much more to us to know that Drew's life made a positive difference. He has certainly changed our lives. Through everything that he was faced with he still smiled. He learned to play through his seizing movements, to laugh when he got a reprieve, to love in spite of being wronged (too many pokes!), and to smile through it all. He warmed everything in his path and turned our faces towards God. If only I could do so with the same spirit and innocence! What I wouldn't give to have my dear little Drew healthy and here... oh what I wouldn't give. My heart will ache, but better to have known him and loved him than to have never known him.
Thank you for all your encouraging comments, we are sorry we don't get to respond to them all. We will continue checking and trying to post updates. Thank you even more for your continued support! We love you all!