Monday, July 20, 2009

Sleep Walking

After a day like yesterday I was hopeful. I even let my mind entertain the idea that we could have Many more days like yesterday, filled with lots of time staring into Ryan's beautiful blue eyes. I have been swiftly reminded of the harsh reality of our situation yet again today. Our night was rough again, up countless times between 12AM and 3AM because Ryan was upset and seemed uncomfortable, or his alarms sounded. I cannot tell you the number of times Chris and I have thrown covers off of our tired bodies and stumbled out of our room into his in a sleepy stupor, trying to decide what to do next to help him. We have been "sleep walking" for weeks and seen all hours of the night.

Ryan finally settled sometime after 3AM and we were able to get a few hours of sleep before getting up to get Charlotte off to school and start the day. Ryan finally woke sometime aroun 9:30AM and was up for a short while as I changed his diaper, clothes, replaced the tape on his face that holds his tubes and rotated his NG tube in his other nostril. Those small tasks were a bit too much for him and he then slept until sometime around 2:15PM. He was awake for a few minutes with us on the couch but is now moaning, again. It pains me to hear it. I know that the Dr.'s and nurses have explained that it is just his way of grunting off the excess CO2 in his body and working to breathe. I have been told to try to "block" the noises out, but I can't. They break my heart, one little bit at a time. I was cuddling with him on the couch as he moaned, whispering in his ear, stroking his arm and just holding him the best way that I can without disrupting his position. I can't break this cycle for him and cannot soothe this discomfort away. How can I ignore that?? Not even the Morphine that I gave him almost an hour ago has helped.

I have prayed countless times in the past few days for God to scoop him up and comfort him since I cannot. Every time I pray this prayer, I am sure that if Ryan passes soon, I may feel guilty in knowing that it may be because I asked God to take him. I want Ryan here with us, but when he is like this, I know this isn't Ryan. I know God has a plan for Ryan, but I also know that he will listen to his mother's prayer.

I am sitting here, helplessly typing because I feel I need to do something with my hands. They cannot heal my son. Typing doesn't heal my own heart, but somehow, helps me try to figure out what pieces are missing and how to compensate for their emptiness.

The only comfort I find in moments like these is that when Ryan does finally stop moaning, and pops his eyes open, it is almost as if he has returned to say, "Here I am Mom, I'm back." How is this possible? Is he really here as his body is failing him? Is he only here when God tells him his mother needs to gaze into his eyes again? When he does finally open his eyes, I want to ask him where he has been, what has he seen? I want to tell him that I will miss the depth of the stories his eyes tell. I want him to know that I will hold our locked gazes in my memories forever and that those small moments with him are priceless to me. Maybe God does do that for him... for me...



Anonymous said...

Jenn and Chris-
You are both so strong during this time. I pray that you find a peace about all of this, about how your little one will be with God sooner than you ever expected. May God bless you both, and lift you up, together, to be the best parents you are being. I read your writing everyday, at least once a day. I'm sorry for your pain. I wish I had more to say, or could do more. May God be with you both, and Ryan and Charlotte too.
Megan Oliver(Laura Beth's little sister)

Elizabeth said...

I'm so happy to hear that the trivia night went well, and glad to hear you had a good day with Ryan yesterday. And yet so sad to hear how much turmoil you're in. So many conflicting emotions!

Dear Father, please bring comfort and peace in the joy AND in the sadness. Wrap your arms around this family, as they hold on and prepare to let go at the same time. Amen.

Lisa P said...

My heart is so heavy for you tonight. I know how much emotion comes with exhaustion. Considering how much of each you are experiencing right now, I am so amazed with your strength to write, reach out and express the love for your son and family. What a gift to them. Its at this time that I wish for strength and peace for you all. I know there are so many others out there wishing the same.

Lisa P from GSS

Anonymous said...

For me, you represent the definition of unconditional love for a child. You love Ryan so much that you will sacrifice being with him so he can be at peace and not suffer. There are truly just not many people out there with the inner strength and beauty that you have. Ryan truly could not have been blessed with more selfless giving parents. Thank you so much for sharing your thoughts and emotions. I know it is somehow healing for you, but it is also so healing for all that read it. You remind me everyday what a beautiful gift life is and cause me to step back and evaluate my own thoughts and feelings. I pray for you, Chris, Charlotte and Ryan daily. Not a day goes by that I don't think of your family.
Becky Stang

amyfish said...

our prayers are with you....God give you strength, comfort, peace of mind, and some relief from your constant pain.

Rita said...


Baker Blog said...

Jen and Chris-
God knew what he was doing when he gave those children to are an inspiration to me to be a better parent.

Reva Birk
Labor and Delivery, St. John's

Stefany said...

My prayers are with you and Ryan today and everyday.