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. 

changes

We have an appointment on the 29th to see the plastic surgeon. We have not been working to hard at making a decision about what kind of surgical intervention we might do until we meet with him. It's very possible he could identify significant risks or benefits that we have not even thought off. Our appointment is at 9:15 am. Because of traffic that will be an early morning for the Fords. I am excited to see what he has to say, but nervous too. Over the past few weeks I have begun to grow attached to the idea that we might not have to do dressing changes someday.

there are a lot of things i have gotten attached to lately. One of them was the ease of having someone i could trust and depend on to take care of Gideon while i worked.

all good things must come to an end, I guess. Gideon's babysitter, and my dear friend, has made a decision that what is best for her and her family is to stop being Gideon's full time baby sitter. i can't be mad at her. she is doing what good moms do, setting boundaries, making her daughter the priority. It has been a huge blessing to have her in Gideon's life, and I am happy that she will still be a part of our lives, as my friend. A role that for the both of us, right now, is the best role. She is giving us time to find someone (or some ones) else but as I don't want to take advantage of that- so the search has begun.

I have been grappling with this change for a few days now and have come to the conclusion that it is not finding a new day care provider that is so difficult for me. Finding a new day care provider is incontinent when you have a normal baby and what I am having to wrestle with is what it means to not have a normal baby.

My friend made some suggestions about Gideon’s care. She recommended not going for a home day care setting but finding someone who can come to our house and not only care for him but work with him to build upon what his developmental and physical therapies are doing. He takes a lot of energy, so much that someone who has other kids might not be able to meet his needs.

I have a special needs child. I know, we have covered this before, but that is the way the grieving process works. It happens in layers, in stages. Little things that bring you closer to the awareness of what you are loosing or have lost.

Loosing her or not, I can’t help but think this family was coming to a place of crisis. I’ve been struggling at work a lot. It takes so much energy and I feel like all I do is work and take care of Gideon and I am not doing a good job at either. My job continues to demand more and more of my time and emotional energy just when I need those resources for Gideon. My frustration tolerance is crap. The other night I yelled at Gideon because he could not seem to latch.

I really don’t want to be a mom who yells at her ten month old because he is hungry and tired.

Its not just about finding a new day care provider. It might be about forging a whole new life. Its about deciding if David should find a new job, leaving the one he has had since he graduated high school so I can leave my job, or at least work part time. Should we consider moving closer to my family so we can have a bigger support network? What does that mean leaving behind? A church family we adore, friends who have become family to us, and a host of other things.

How can we even begin to afford a day care provider who will meet his special needs, plus the mounting costs of his medical supplies and possible surgery?

I wish I could say I have serene peace. In the Word of God I know there are answers. In prayer and listening to his voice I know there are answers.

Right now I just have to turn down the volume to the panic record in my brain to be able to even begin to hear God out. And then I remember, I have to trust him to do that too.

So I pray “Lord help me to feel your peace instead of the weight of the circumstances in my life crushing “my” dreams. Show my your dreams for me. Show me the job you made me for. Give us courage if we are to go a new route, sustain us if we are to maintain the old one and give the wisdom to know which path to take.”

the neurosurgeon had a dinosaur bow tie

Let me just say, I love that the neurosurgeon had a dinosaur bow tie.


But I digress. An update for the day. Its really pretty simple. They were very impressed with our dressing change technique and the doctors noticed something we didn’t. Slowly, skin is beginning to grow over the opening. So by leaving things just the way they are he predicts that in anywhere from six to twelve months the tissue will cover with skin, reducing the risk of infection. In the meantime he still has a risk for infection, though the doctor suggested that this risk was not as high as initially predicted because we are doing such a good job of keeping Gids infection free.

Surgery is an option too. Because the tissue on the outside of the head is probably non functioning they would remove the tissue and find a way to cover the opening. He suggested several different ways they might do this and to get connected to the neuro facial plastic surgeon to discuss the options for that procedure. There are risks associated with removing the mass including the possibility that it could impair brain functioning and the risk of infection and anesthesia that is inherent in any surgical procedure. The neurosurgeon thinks that the procedure will likely be brain neutral, meaning it won’t change any functioning in the brain, but pointed out that we can’t really know the impact on the brain until its done. At the same time, young brains are really elastic and over time may compensate for the loss.

A review of the MRI continues to show significant delays in brain development, which is consistent with his progress. However, the MRI does show brain development. It is still an underdeveloped brain, but less underdeveloped that it was last time we looked at it.

So our next step is to meet with the plastic surgeon and go from there. I am very much torn. I sounds like keeping things the status quo is really the safest option, though we will have to spend more time in prayer about this and evaluating the risks and benefits, its likely the route we will take. I really want to do the surgery for all the wrong reasons. Because I want him to look normal, to be able to ride in a car seat or swing in a swing with out craning his neck, to not have that dressing all the time, to not have to always sleep on his stomach or have stinky head. But at this point those are not the most compelling reasons to put in though a very intensive surgical process.

We have not entirely ruled out the surgery, we may discover more compelling reasons to do the surgery as we gathering more information. That being said, we will keep you updated as we learn more.

You are the God who performs miracles; you display your power among the peoples.

so, its my birthday.  31 today.  that's not even old, but i have a funny relationship with birthdays.  I am always a little bit sad and even more so reflective on my birthday.  Today has been filled with blessings as many friends have wished my happy birthday and made me feel super loved.  my son's sweet little gift, to take a nap long enough for me to post i will pay for later (like 2 AM later) is being enjoyed right now. 

though I will confess i had my moments today when i was tempted to walk the path of feeling sorry for myself, i am grateful for my friends and the gentle reminders from God, what his words were to me the last time i had a pity party.  I can share that now because Gideon is peacefully sleeping and not DEMANDING his mamma time. 

When i found myself feeling that way a few weeks ago I felt both comforted and challenged by God.  He challenged me saying

"[I] perform wonders that cannot be fathomed, miracles that cannot be counted." Job 5:9
He asked me, "did you forget who I AM? I made the mountains and i can move them.  I give the blind sight, I make the lame to walk.  I rose from the dead and I can still heal your son."  in other words.  This isn't over yet.  God is big enough to heal my son.  He is big enough to heal how much I hurt. 

He gently rebukes me saying from Isaiah 45
Does the clay say to the potter,
‘What are you making?’
Does your work say,
‘The potter has no hands’?

He reminds me that He is in control.  That he has this all worked out.  That he has chosen me, David and Gideon for a work that will glorify Him if we let him work instead of focusing on what we wish we had or what should have been.

And he comforts me from Matthew 5:4

"Blessed are those who mourn, for they will be comforted."  He reminds me that it is OK to grieve.  In my life right now I face some very real losses.  Though I believe that tomorrow we could wake up to a Gideon with everything right where it is supposed to be, a world with no more bandage changes and infection control, right now I have a son who is pervasively delayed.  Who cannot make eye contact with me and does not hold his head up.  It is OK to be sad for those lost things and His desire is to comfort me. 

Psalm 77:14

You are the God who performs miracles; you display your power among the peoples.

tomorrow is a new day...at least that's what they say

I had a snow day on Wednesday. I was really nice to spend the day relaxing, well mostly relaxing i had to do some work from home. It was supposedly the blizzard of the year. Meh...this Michigander is unimpressed.

Having the day off made me realize how nice it would be to be a stay at home mom. I am seethingly jealous of those of you who get to do it. It might happen for me someday but for now, i work and i pray.

my mom came down this past week and was huge help. It was good to spend the time with her and nice to have someone help out around the house.  Having her here meant that there were lots of little things, like cooking, i didn't have to worry about for the week. we are working on getting the G-man to eat more solids and cereal with fruit or veggies is thus far a pretty big hit.

today however has been completely unproductive. amazing how a good dose of jealousy and self pity can really destroy what could have otherwise been a nice afternoon.

someone who i love very much is pregnant. I won't tell you who, don't ask, she can tell you when she wants to. who is not the point. the point is, when i should have been happy for her i was angry and sorry for myself. I really don't like being around pregnant people, and in all fairness its not their fault i feel that way. i thought it would get easier with time. its not. add to that it is getting harder and harder to be around people with little ones Gideon’s age.

I love you all, don’t get me wrong. I am excited for you as i see your ultrasound pictures up on face book and your super cute little ones who are now smiling, giggling, laughing, crawling, making eye contact with you...but the more i watch his cohorts grow, the more i am confronted by how different my life is. And I am even more tempted to feel sorry for myself. To lock myself in and not expend the energy it takes to be excited for other people. Great these days is the temptation to just shut down and wallow in self pity.

I should be grateful to have him for this long, to have so many people in my life who live him and love me. I should be thankful that I am able to have a son at all. But today instead of being grateful for my loved one I cried for half an hour, feeling sorry for myself.

I am just so tired or hurting, of being broken. Tired of every time I am starting to feel “normal” finding that piece of my broken life like that piece of glass the broom missed on the kitchen floor-jabbed into your foot.

I should put on my big girl pants and get over myself. I should be thankful for the gifts I have been given and be happy for the people in my life who are expecting great things.

I’ll blog about that tomorrow when I get there….