It’s been hard to keep up with both the caring bridge and this blog lately. To be honest, most days I get to the end of the day and I’m exhausted, so I don’t even feel like writing one post. But I know it’s important to keep everyone informed of what is going on, so I make sure I at least write something on caring bridge. But I do miss writing here, too.
I am tired. I think it’s why most days I don’t get sad about what is happening to us, because I’m operating on autopilot. I keep holding onto the responsibility of so much for my daughter, wanting to at least do some little thing for her. So I’ve become an expert at tracking her meds and measuring them. Once in a while I let Travis do it, but mostly I hold onto it as my job as though no one else can. And when I do relinquish it to him, I worry and second guess him on it. It’s not fair to him, but it’s my need to be in control of something.
For a while, I was just memorizing when she had her meds, but now I’ve gone to taking notes. A lot of that has to do with her needing different meds at different times, so the combinations are different each time. She’s on six different medications now. Two are every 12 hours, two are every six hours, two are every four hours. And she gets formula every four hours as well. Part of the note taking is because the schedule has changed a couple of times since we’ve been home.
I have a feeling that when she does die, I’m going to sleep the clock around – both out of sorrow and from sheer exhaustion. I’ve already started to figure out some things to keep myself and my mind busy when this is all over – painting at my parents’ house (or maybe even my house), exercise, getting back to work, writing, organizing. And now I look at my daughter again and I wish so much that I didn’t have to think about what’s going on or eventually miss her. I hate knowing that she will be gone soon. After everything we’ve been through with the pregnancy, the hospital stays (hers and mine), and all of this year, it sucks that we have to come to this. I HATE IT!
Blooming Joy! 
I hate it too.
It is never easyto say good-bye, but we know Samantha will be free of tubes, medications and all the limitations she has had here. She will be free to run and be healthy. Stay strong (which I know is easier said thn done), you have been such beautiful inspiration to all who read your blog. Prayers are with Samantha and your family.
I hate it too…..
I hate it too. I pray as the psalmist so often prayed.
Hate is a rough word to use, even though it is an easy word to use. Again, find Laura Story’s “Blessings.” You can find her story at laurastorymusic.com:
I heard this song only a few days ago for the first time (her album is quite new), coincidentally (yeah, right!) just as I was thinking of you and Samantha while driving in the car:
We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things
Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise
We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we’d have faith to believe
Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise
When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home
Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise
Don’t think of it as Samantha dying. Hear her talking to you, telling you that in our Father’s house are many rooms and she is going to prepare a place for you and Travis and her. Know that she loves you as much or more than you love her, and that it is certainly as difficult for her as it is for you, perhaps even moreso because she is not capable of logic and theology, but perhaps easy because she has truly the faith of a child.
All the while He hears EVERY spoken need. These rains, the storms, the hardest nights ARE His mercies in disguise.
I’m right there with you…I hate this too.
I hate it, too. 😦
praying for you and little Samantha and your husband Travis.