Tuesday, April 10, 2012

Stephen Update: Hard to Write

Here is the latest update on Stephen. It sounds like he is very close to the end of his life here on Earth. The emotions that we deal with are so hard....I wonder if it is possible to cry tears of sorrow AND tears of joy at the same time? Sorrow that he will no longer be alive, that I will never hear his sweet little voice again or see that sweet, shy little smile. Sorrow that someone so little, who still had so much life left to live was taken so soon. And joy, that he no longer has to suffer. Joy that he is at peace in the loving arms of Heavenly Father and Jesus. Joy that I will see him again, perfect and whole and healthy. Joy that families are FOREVER. 

It is hard for me to believe that this journey is so close to being over. It seems like just yesterday I did my first post on Stephen, asking for prayers in his behalf as the family had just discovered the grapefruit sized tumor growing in his brain. It seems like just yesterday he went in for his first brain surgery and we all held our breath awaiting the news to find out whether the surgery was successful. It seems like just yesterday he was accepted into St. Jude, where he had the best health care treatments possible. It was such an incredible blessing. It seems like just yesterday I was able to take part in a tremendous outpouring of love from YOU, my blogland friends and family, with the nest necklace fundraiser. And now...his book is coming to a close, the very last pages of his life are being written as I type. His story is a BEAUTIFUL story.

 It has been such a roller coaster, hasn't it? Thank you for all of your support and prayers for him and his family through this! I know with all my heart that your prayers were heard and that they held the family up, giving them hope, comfort and support that they needed so desperately. And now, this will probably be the last update we will have on little Stephen, until he passes on.

Hard to write
After a few "good" days with Stephen, he has finally made another significant turn towards his mortal end.

If you've tried to call on the phone recently, sorry. We haven't answered. Amber and I are sitting beside him right now as he sleeps. Not much could take us away from this spot right now. His breathing has slowed way down to a breath about every 30 seconds now. It's consistent, steady.

Yesterday, we finally gave Stephen all the gifts from China we were holding in a box until he got older. We would have originally given him these things on significant birthdays or occasions as he grew older. Perhaps the hand carved two-dragon stamp of his Chinese name when he turned 16. Maybe the hand-made fan created with feathers that a Chinese woman in a village wanted him to have when she saw him with us for his wedding. The American-looking Barbie with a Chinese baby that the White Swan Hotel gave us towards the end of our adoption trip for when he had his first baby.

These and many other gifts, we presented to him last night as he struggled to have the strength to sit up on the couch. Still, you could tell he was delighted to have them and his smile leap out from his weary mouth and eyes as he graced their weight with his slender hand and lucky fin.

Obviously, it was emotional for both Amber and I and neither one of us felt up to writing last night. We attempted to go to bed last night, but Stephen could not stay asleep. He was very restless. By midnight, he was awake again. I lay next to him to listen and watch.

He whispered to himself in riddles much of the night. His arms reached into the air over his head as if he were conducting a soothing orchestra. At one point I crept closer to try to decipher his words and decide if he was awake or asleep. I listened to him recite random numbers and phrases like, "not now, maybe later," "Rebecca, yes" and many other things I couldn't make out.

I moved even closer to see if his eyes were open. They weren't, but then he opened them and looked at me. His lips puckered up for a kiss. I got the corner of his mouth and that wasn't good enough for him so he insisted again. My lips met his dry, cracked ones and he was satisfied. I lay back down and he went immediately back to nonsensical whispers and pulling at his bear blankey.

I must have finally fell asleep about 4am with him still gong on to wake just before 6am hearing him blow kisses towards me while still whispering to himself. The morning had begun and he had only existed somewhere inbetween sleep and awake all night.

By this morning he was growing more agitated and still could not rest peacefully. His body was in a constant state of movement. He even tried to get up out of bed a couple times by himself. This is very dangerous since he can not stand or walk by himself any longer.

All this is not caused by drugs. There is nothing on his medication plan that would cause this. These are changes within. He does not know where, what time it is or who he is with half the time. This morning he thought Rebecca was beside him. When we told him she wasn't, he got upset.

Finally at about 11am, we decided we needed to give him some Lorazepam that we had perscribed for anxiety. We wanted to try that out before using the Versed (sedative) that was given by Hospice for the same kind of end-of-life symptoms.

An hour later, about noon, he drifted off into a deep sleep. Now, at 2:45pm his breathing is still constant but even less frequent than at noon. There is an occassional gurggle in his throat and once in a while he twitches ever so slightly. His eyes are narrowly open and his jaw is slack - an eerie glimpse at what is to come.

For now we rest with him. He is at peace while he sleeps. Amber and I increasingly feel the time is coming near when he will rest in eternal peace. We have cried much of the morning together in anticipation of that time. We pray and muster all the faith we can that the Lord will heal us, but in this very moment can not imagine how we will ever rest again once that time comes. So for now we sleep with our darling Stephen. We hold his little body close and treasure this very moment as best we can. Sleep sweet Stephen, sleep.


4 people leaving some love!:

miss.e.motional said...

Oh...so hard. My thoughts and prayers are with Stephen and your family. Love, Melissa

Nighttime Crafter said...

There are no words that can make this any easier, just know that Stephen is loved by many. HUGS and LOVE to you and your family.

Lara said...

I have tears in my eyes right now. The realities of life can be so hard. I haven't even met this boy or his family, but my heart hurts for them. Thank you, Natalie, for sharing his story. It touches us all. How sweet the knowledge that families can be together forever. Wishing you and your family comfort and peace.

Faye Hayes said...

Thanks for sharing this family with us. This poor family losing a child. How hard it must be to lose a child. I cry so many times ready these posts thinking what it must feel like. I know some what what they feel like when I was worried about Rhett and his kidney trouble. I pray for Stephen and his family and for the comfort and peace that they will need at this time. xoxo