I look foward to Sunday.

Why is it that when I am lying in bed, driving down the road, taking a shower, sitting in a meeting...well pretty much anywhere but sitting at my computer I always have such great things to write and then the moment I sit to write, silence. I thought for a minute that I could get one of the tape recorder things and record what I am thinking but then I realized that might enable my oddest habit of all.

I have a tendency to narrate my life, especially since Gideon was initially diagnosed. I think it came in part from the humor of how often i lied when people asked "how are you". Not that I wanted to be fake but not everybody who gives the casual "how are you" greeting wants to hear my saga. so i would say "OK" and a little voice from my imagination would say "she lied as she walked away thinking what a stupid question..."

almost always in the third person. Its weird but sometimes it make me laugh. because sitting there chuckling to myself about what's going on in my head makes me look less crazy.

Oh…i remember what I’ve been writing in my head in the car. At least i remember what i was thinking about. Let's just pretend this post starts ....

here.

I've been thinking a lot about Passover. Probably because it's Holy week and it make sense to think about Passover.  Also because our scripture reading earlier this week from somewhere in numbers or Leviticus where God gives instructions for Moses about how to celebrate Passover. Yesterday was Thursday, in the last week of Jesus’ life it was the day he took his last supper with his disciples. He was celebrating Passover, he was remembering the night when the Hebrew people ate bread unleavened, in haste, ready to head for the door and the border when God gave the word.

I wonder what that first Passover must have been like. I imagine hushed silence as they waited for even greater wonders than they had already known. What could be greater than the wrath God had already poured out on their cruel captors? Where they hungry for justice as they remembered the cruelty of a pharaoh who had thrown their sons in the river? I imagine the mothers holding their sons tight as they heard the breath of the Lord reach through the night air and steal the breath away the first born sons of those whose door posts were not covered in the blood of the lamb. I wonder if the Hebrew mothers grieved for the Egyptians mothers that next morning as they made their hasty exit.

I grieve for them. My heart grieves for the women who had to watch their sons breath stolen because of the stubbornness of a king they could not influence or control. I know what it is like to watch your son take his last breath. I imagine the sound of Egypt that night and what I hear above the excitement and joy of the Hebrews, is the wailing from the mothers of Egypt.

As I write this, as i think about the mother's of Egypt, I am transported to that last morning with my son.  Mingled with the grief of missing my son, is the trauma of that morning.  I don't like to talk about it, it don't like to think about it.  Of all the questions people have asked during this time "what happened" is the worst because i have to talk about what happened that morning.  I have said "he just stopped breathing" because it is too painful to recount the 911 call and the pressure to do CPR when we had already decided not to.  doing CPR while David greeted the ambulance with the dispatcher asking me questions that i could not answer because i was futilely tyring to keep him alive until the ambulance got there so i could run out to an ambulance in my pajamas to give them a DNR.  Confusion and pain. 

I held him for a while, his little nakie self.  He didn't even have a diaper on because we'd just given him a bath and changed his dressing.  I held him and thanked him for staying as long as he did.  I had know it could end this way and maybe that made it hurt less, or maybe that just made it hurt different.

I thought I knew what it meant to wail, at least I new the definition of the word. Two weeks ago I learned what I means to wail. To cry out in choked sobs at the emptiness of arms that should be holding your son. It’s an emptiness I still feel, though the sobs have, for now subsided to more gentle tears.

Yesterday, as I thought about Jesus having Passover with his dearest friends, I imagine he cared for the suffering of those mothers in Egypt. I imagine his father in heaven grieved for the sons that had to die because a pharaoh’s heart was hard. The sons that had to die so his people could be free.

Today is good Friday, a day we remember becuase Jesus became the passover lamb.  He became the sacrifce.  He became the son that died so his poeple could be free.  May your friday, and mine, be filled with comfort knowing that we have a God that loves us this much.

gone home

just over a week ago, on April 10, after nearly 11 months of breathing on his own, my sweet little warrior, was welcomed into the arms of our Savior. 

For those of you who follow this blog but do not know me personally, i am sorry for how long it has taken to let you know of our loss.  As you can imagine, it's been difficult to think in a straight line, much less collect my thoughts on paper. 

as of right now my husband and i have run away from home and am updating you from a comfy king bed in St. Ignus Michigan. Gideon's funeral was on the 14th of April.  What would have been his 11 month birthday.  after the funeral, David and I decided we needed to spend some time just away, time to talk, and grieve, and rest.  I have decided not to leave my position at work, but I won't go back until the end of the month.

Its still very difficult for me to talk about what happened in those last few hours and I don't know that it will ever be easy to talk about.  Someday i will be ready to tell that story. 

For now I am to find my way in this journey of grief.  I am mulling on things to share with you, but I don't know where to start.  I can tell you that it has been a privilege to share this much of my journey with you. I might know you personally, or maybe you found my blog through a friend or however it is that you find a blog that you read, but i have to tell you that i am honored that you have chosen to read this one. 

I know that my story isn't done yet, and neither is Gideon's. 

Thank you.

april fools...

I hate April fools day.  I shared this with my husband who promptly insisted that i must have a traumatic experience with April fools and probed like a therapist just out of grad school into my deep dark secret April fools day past. 

no deep dark secrets.  Just a general loathing for being tricked, lied to, embarrassed and all other things along those lines.  that being said i don't generally play April fools jokes on others.  so when i told everyone on Friday (April 1st) that i quit my job there was no fooling involved, though part of me wished there was.  I wished that i could wake up April second and God would give me wink and say "April fools! your life has not been completely turned upside down by a long series of unpredictable life events that have shaken you to your core!"

"you should have seen the look on your face"

I really did mean for the big news the week to be about our trip to the plastic surgeon.  That adventure was largely anticlimactic.  we didn't really gain any new information so much as shared information.  We were charmed by the personable, surprisingly young, doctor who introduced himself by his first name minus the title doctor.  He wants to do some more consultation with the neurosurgeon and another plastic surgeon and then reconvene.  I wonder if plastic surgeons who do reconstructive work like him get offended by the connotation of "plastic" surgery?

So as we know, I will let you know...several days later when i finally have five minutes that i am not working, nursing, or sleeping. 

But soon, and very soon, one of those will be a much smaller part of that equation.   I have been fantasizing about all of the things i will get done not working full time.  things i will clean, blogs i will update, craft projects i will do.  I am thinking that is a defence mechanism to avoid the complete terror of becoming a one income family.  A one income family whose one income was the less consistent and smaller of the two.

Its a huge leap of faith for us and though i want to fully trust that this is the right thing to do it was my idea, which is generally suspect. there is a strong possibility I will spend a significant amount of time second guessing myself, feeling guilty that i really should be able to be superwomen and work full time and manage all of Gideon's needs. But considering he has not made significant weight gains since August and will only eat reliably when he nurses and i am always rearranging my schedule to get appointments with doctors and specialists and he has not started physical therapy because i can't find time to take him, the superwoman things is pretty much a big fat lie. 

I'll tell myself those are excuses at least a few more times before i am finally gracious enough to myself to give myself permission to have only one full time job. 

so now begins a brand new adventure.  no foolin.