Tuesday, December 20, 2011

the other side

Its hard to believe that two years ago I was doing the same thing. Yesterday I made an appointment for and ultrasound. A routine, twenty week, gestational age, screen for abnormalities, ultrasound. I was surprised by how emotional it was, just calling to make an appointment. I chose a different location, it was a relief to know that was even and option. I have some pretty strong emotions when it comes to ultrasounds, But baby number two is on the way and hopefully this ultrasound will put some fears to rest.

Two years might as well be two decades ago. I know that all babies turn their parents lives upside down, that even if that ultrasound two years ago had been perfect and everything was all right we would still be two very different people two years later. It would be a different kind of different though. This is the kind of different that makes it almost impossible to put all the fears to rest.

My faith tells me that God will carry me. He has through all of this. But my experience warns me that it may not be easy. God's grace will heal me, but healing is not the absence of pain, is the process of going through it to the other side. And some days I reminded, I'm not so close to the other side as I'd like to be.

Today a friend asked me to connect with a friend. A family who has been given a diagnosis that, in the natural, will claim their baby's life. She shared that this family is considering terminating the pregnancy but has not been able to find a hospital that will do the procedure. For those of you who know me personally and any of you who have followed this blog for any amount of time, its no secret that I feel very strongly about the value of every life, and that I am an advocate for the unborn. But here I walk onto fragile ground.

How can I communicate to this family how much I believe that choosing life is the best choice with out communicating judgment?

I remember that moment when they offered us the choice to terminate my pregnancy. To abort Gideon. I remember saying no, from a place of obedience. But I also remember the turmoil and the pain of those days, vividly. I want to find her and plead with her to choose life for her baby, I want to share my story and the story of others who have carried babies with terminal conditions. I want her to see that it was worth it, even if I had only held Gideon for an instant. But I also need to respect her choice as a mother and a person and offer her the support and compassion that my heart cries to give. I hope and I pray that she chooses life, not because it agrees with my opinion, but because in my heart, I know how grateful I am to have been given every gift that was Gideon’s life and his passing, and my heart grieves for those who would go through the pain of the loss and miss out on the gift that is the life.

Wednesday, October 19, 2011

on the couch

Hello to you all from the couch. Its been a long, long time since I have mustered the sensibility to collect my thoughts into something that could resemble a blog post. Work has been absolutely crazy these past few months. I have a new boss, who is wonderful and challenges me in so many ways. the upside = becoming a better clinician and coworker. The downside = it's hard work and I'm still working out my equilibrium in a new system.

Because I've been working so hard to get my new groove on, I’ve been pretty stressed out, and therefore pretty scattered.

even now, I’m standing in the middle of the round a bout trying to figure what exit to take.

I guess I’ll start with the reason for the couch sitting. the MANDITORY couch sitting. I am 9 weeks pregnant. We found out a week or so ago and let some close family and friends know. We got the word out the old fashion way-word of mouth. I wasn't planning on going public quite this fast. then yesterday it started to look like i was having a miscarriage.

200 miles from my doctor. 3 hours from home. I called Doc and she said to come in as fast as i could get there. I called my boss so she could cancel my appointment with a family later that day. And i called David, sobbing.

The three hour drive did give me time to think. I went the cycle of pity, anger, and hurt. Thank goodness my coworker (who shall remained unnamed to protect the innocent) turned on the radar detector and put the pedal to the medal home. It’s a little embarrassing to sob in front of your coworker. I mean we work in the business of feelings, but still…

In the end, I had to come to the same conclusion I usually do. God is faithful. He will not let a hurt come into my life that he does not have a plan for how to use for his kingdom.

But man, yesterday I was pretty tired of working for His kingdom and wanted some little bit of happiness for my family. (I write that with a little bit of a glance over my shoulder…its raining and that means lightning might not be far away). Thank goodness that what we feel, and sometimes think, in the process of growing is looked upon through a lens of mercy.

We waited for a short time and the doctor did and ultrasound. wouldn’t you know that little olive size stinker…I swear she waved at us. All head and little bitty arms and legs. She did a brief exam and determined that my cervix was closed and declared I was not to work tomorrow, or the next day for that matter. Bed rest until a least a week when she will see me again.

I think I heard her right and I am not even allowed to bathe. For those of you who might come and visit me, I apologize in advance.

David will still be flying to Virginia to visit his sister and his brand new baby niece. I am requesting that he does. He needs some time with baby Hannah. I’m very disappointed I can’t go and see Hannah and my brave Kelsi Grace (my oldest niece who will be very shortly headed to Germany with the Air Force)

in the long run, this couch and I will be glad for it when this moment has passed and they day comes that I will be sitting in this same spot nursing another little one, just like her (or his) big brother.

Wednesday, August 3, 2011

one line. not two.

one line.  not two.

It occurs to me, just now, that it’s not just about wanting to be pregnant. That feeling I get in my chest when I see pregnant women, or when I have to swallow that lump to be able to express the genuine happiness I have for others who are so blessed.   It’s not that being around pregnant women makes me jealous, that being around those with healthy babies makes me envious.

Pregnant women, small babies, force me to confront my loss. Not being pregnant forces me to confront my loss. Not just the loss of Gideon, but all of the other losses that awful waffle pile upon that loss.

I can’t even begin to list them all, all the things I have lost. I don’t want to get fooled in to thinking that when I get pregnant, if I get pregnant again, everything will be ok. It’s just not so. I won’t magically stop missing Gideon so much it aches, I won’t be excited and happy.

More likely I will simply have to, yet again confront more losses. I will never be the same. I wouldn't want to be the same. But that doesn’t always make this process hurt less. Because it does hurt. It hurts physically, the tidal wave of emotions, the sadness and the tears, overflow tsunami like into my stomach, my joints, my head and I am physically impacted by this grief.

Being pregnant will not fix this. I will not “fill” me. And I feel guilty because I know women who have never gotten to bepregnant. Suddenly I just feel selfish for wanting more, when I have already been given more than I deserve. 
but with each negative test (all three of them since testing has even been meaningful she says to highlight just how neurotic she is really being...) fear creeps in. 

and I am challenged once again to turn it over to the one who conquers all fear and replaces it with perfect love.  the One who can fix me, who can fill me. 

Monday night David and I had a conversation about the Israelites in the dessert.  (Exodus 17) They were so ungrateful.  They said "God, you brought us out here to die.  We ain't got not water and we are going to die.  we could have done that in slavery" well, that's the paraphrased version.  I don't want to be ungrateful.  I am so blessed to be Gideon's momma, more blessed that i have ever been.  But I questioned God, i became like the Israelites while criticizing them. Water, seriously they are griping about water.  I want a baby, i want to stop hurting, now that is something to gripe about.  I was angry that God gave them water, but he won't give me something a simple as another pregnancy.  two lines, that's all I'm asking!  This was hard for David to understand, he is a very cognitive person, and for a moment he spoke Vulcan and i Klingon.  his heart broke for me because he couldn't see how i could see the blessing and be whining like the Israelites all at the same time. 

But my head knowing i am blessed doesn't always stop my heart from aching, anymore than being grateful to survive a car accident will make those broken bones and whiplash go away any faster. 

Like the Israelites in the dessert I am thirsty.  What I will learn from them is that God is faithful and He will quench my thirst.  And like the Israelites, i am sure i will be surprised where the water comes from. 

Monday, July 11, 2011

fireflies: Who'd of thunk a bunch of bugs trying to get lucky would be so awe inspiring?

In all reality I am not functioning nearly as well as I appear to be. I cry all the time, every day. Even at that I don't really cry enough. For the past week I’ve been fantasizing about pounding my fists on the ground above where is little body is laid to rest and just screaming. Screaming at the earth because it gets to hold him and i do not.

but i don't, I’ve been much too lady like in my crying and i think the stress hormones are beginning to build up in my system. my stomach hurts all the time, my joints hurt and i am ALWAYS tired.

I am not a huge fan of Sunday's, generally speaking. Sunday's are my workweek Mondays, i usually to into church for the early service and share a quick lunch and maybe some chill time with David and then off to work. My Sunday's at work are all sessions, family therapy and meeting with kids so i don't even remotely ease into my week. to top that off, Gideon passed away on a Sunday morning.

we were supposed to be on the worship team that Sunday. I remember calling our pastor to let him know Gideon just didn't seem right and we were going to stay home with him around 8:30. with in the hour he was gone.

This past Sunday, yesterday makes three months since my mighty little warrior was welcomed into heaven. I am sure with a trumpet blast and some might shouts.

down here i am tempted just to break the pottery.

David and i joined the worship team yesterday, our scheduled day, from a schedule made long before we could even know the sad anniversary yesterday would mark. I had a hunch it was going to be a rough day and so i girded my loins so to speak.

I showed up for work and my very thoughtful coworker had stocked the fridge with some sugar free chocolate (I'm on a weight loss journey but that's a different story) with a little note. I chose my sessions carefully and made it through the day with my tear ducts still intact. By 8:30 my notes were done and i was out the door making my typical bee line for my car.

but something slowed my hasty dash to the car, slowed it to a stop.

lightning bugs. i was suddenly stunned by how beautiful they were, making the twilight sparkle, little orbs of light rising magical from the ground. Something about them, I don't know what reminded me that God keeps his promises, and for a moment, for a short ride home, i was peaceful, still and even a little bit happy.

For me, lately, those moments are a rarity, and I am grateful for them. I was reminded of at least one thing I gleaned fighting to focus against my own distracted mind.

Let us hold unswervingly to the hope we profess, for he who promised is faithful. Heb10.23.NIV

Saturday, June 11, 2011

strawberries, jazz and shrapnel

The first time we went to the local strawberry jazz festival they had a pet costume contest.  We wanted to borrow our friends dog who has almost mirror image markings as Angus, but alas Leftie was busy for the day and one blues brother just isn't winning material.  Curse that tea cup Chihuahua!

This past Sunday was the strawberry jazz festival, and David and his juggling partner, the duo known as "Rave and Dave" performed for the second year in a row.  From what i hear they had a good crowd.  I wouldn't know because I had to work, like i do every Sunday.  Its probably for the best.  I would have spent the whole time thinking about last year's strawberry jazz festival, an event, in a long line of many, that will mark a new kind of milestone in our lives as parents of a baby in heaven.  

Last years strawberry jazz festival was the first time we really took Gideon anywhere.  A few days earlier I had a conversation with the hospice doctor about taking Gideon out.  Dr. Murphy encouraged us to remember that the "bug" that claimed Gideon's life could be anywhere, and was just as likely to be brought too us as we would bring Gideon to it.  "Live" he suggested.  Make memories with your son, maybe not for him, but for you. 

So last year we went to the Strawberry Jazz festival so Gideon could hear his daddy make people laugh.

This year, it was an event that reminded me I live a life fraught with emotional land mines.  Sometimes i see them coming and at least attempt to protect others (and maybe myself) from the blast.  Most of the time they come of nowhere and my poor co-workers/friends/family and even sometimes random strangers have to dodge the shrapnel. 

I think Dr. Murphy's advice still holds, Landminds, bugs, shrapnel.  You can't hold up in your house forever. 

Friday, May 13, 2011

my sweet, stinky headed son

by my watch it is 10:54 PM.  I have a pretty big day tomorrow and should really be sleeping right now.  a year ago right about now I was telling some nurses that it was time to get serious about pushing.  we were so close to holding our baby. 

I believed, we believed that God was going to heal Gideon.  That we were moments away from meeting a little boy who would defy odds.  Who would make doctors scratch their heads and bewilderment and know that only God could be the explanation for such a little boy as this. 

its 10:58 PM by my watch.  One year ago I was one and a half hours away from that final push that would bring our little man into the world.  I probably shouldn't stay up too late, and staying up until 12:28 AM is really too late. 

tomorrow we are having a party, an open house with cake and gifts.  Gifts to be giving to other babies who, I hope and I believe, might be born because Gideon was.  Because somehow their mommies heard Gideon's story and were touched by his courage and challenged to believe that every life deserves consideration.  I am excited about the prospect of loading my car to the brim with gifts given in Gideon's honor to our local pregnancy resource center. 

But really, I'd be more excited to be celebrating this birthday with him, changing his poopie diapers, smelling his stinky head, and kissing those sweet cheeks.

they were such kissable cheeks! 

Right now I am not overwhelmed with sadness.  Just quiet and still.  I made a commitment to myself through this grieving process not to try to make myself feel anything but what I feel.  Right now I feel grateful.  at 11:06 PM I feel grateful.  Because one year ago I was giving birth to my son. My sweet, stinky headed, blue eyed little miracle who, I am a little suspicious, changed the world for better more in 11 months than I have in 31 years. 

Its 11:11 PM and this year I go to bed knowing my Gideon is healed, believing they celebrate birthdays in heaven.  For those of us celebrating down here on earth, I'll see you tomorrow sometime from 1-3.

Monday, May 9, 2011

Dear Little Man

My dear sweet little boy, My mighty warrior, my handsome little man,

Yesterday was mother's day, tomorrow will be a month since you left us.  This comming Saturday would have been your birthday.  I miss you so much.  I wish I could send mail to heaven but even more I wish heaven could send mail back.

I know that you are whole now.  No more head changes, no more darkness no more mean nasty diaper rash.  What a beautiful place to be.  How much do you love grandma Linda, I bet she can't enough of you!  Have you met Jason yet?  What about grandpa Jenkins?  what a hoot they are!

And though I know you are in the best place, I ache to hold you again, to play with your sweet little toes and kiss your cheeks.  I miss the sound of your cry and your baby bird face when you knew you were going to get some mama's milk.  I miss the way you sucked on your fingers and hated to eat any food but what I gave you.  I miss how much you loved to nurse.  I miss your cuddles.  No baby will ever cuddle like you.

I miss feeling what it felt like to be holding a miracle.  I miss holding you.  Being a mom is the job i was made for, and with out you, every thing just feels off.  I walk around all the time feeling like I am forgetting something, my tummy hurts and the other day I didn't even want ice cream.  I'm so scared I won't get to a momma again, and scared that that makes me a bad mom or means i didn't love you enough for my time with you to be enough.

i thought it would get better over time, and I guess that's true eventually.  I think, maybe, it has to get worse before it gets better.  Because I miss you now more than ever.  I cried more today than I have in weeks.  It just flattens me out of no where and I cry like puking with the stomach flu, unstoppable and messy. 

I am sure this is the first of many letters I will write you.  You, my sweet little gnome, have been the most wonderful teacher I have ever had. When the dust has settled and I clean up more of this mess I'll tell you about some of the wonderful things you have taught me

...who am I kidding, I can't clean this up any better than Angus can get his tennis balls out from under the couch.  So I guess I'll do what the dog does after he comes the the conclusion his effort to contort himself under the abyss of the couch has failed.  I'll look up.  Well, I guess that makes one lesson I can tell you that you have taught me boooga.  Look up. 

I love you times infinity and I miss you even more.

Friday, April 22, 2011

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 ....


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.

Wednesday, April 20, 2011

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.

Sunday, April 3, 2011

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. 

Sunday, March 20, 2011


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.”

Thursday, February 24, 2011

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.

Monday, February 21, 2011

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.

Saturday, February 5, 2011

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….

Tuesday, February 1, 2011

update 2.1.11

Its been a busy few months with Doctor appointments and changes for Gids. We have begun to see a pediatric specialist at the hospital where he was born. She specializes in babies with special or critical medical needs. We saw her in November and again in December. We also saw a neurologist a few weeks ago after having an EEG. In addition Gideon had an MRI last week that will hopefully get us connected to the neurosurgeon to evaluate if surgical interventions would be appropriate for Gideon.

The EEG showed no seizure activity but slowed waves. The neurologist suggested that we keep him on the antiseizure medication because of the risk of seizures associated with his brain malformations. He offered to be available for consultation but did not see a need to be directly involved with Gideon at this point as the seizures seem to be managed well. He noted that as long as he is seizure free we can continue to mange the medication by weight and not take blood levels.

Gideon continues to struggle to gain weight. He has not gained weight since August. He is healthy and still in a healthy weight percentile but we are getting concerns. He WILL NOT take a bottle. He will only nurse. this presents a huge challenge because I work full time!

About two weeks ago we put the feeding tube (NG tube) back in out of desperation. It worked well for about a week until he began to vomit blood. we took him immediately to the doctor who explained this was a result of the feeding tube.

I only had to see him vomit blood once to take the tube out. I am all calm now but don't think I wasn't moments away from seriously needing a xanex last week!

He is on reflux medication which seems to also be helping him sleep and will prevent a rehash of the puking nightmare if we have to put the tube back in. My mom came down last week (a HUGE blessing) and has gotten him eating a good amount of rice cereal, fruit and veggies mixed with breast milk and some of my amazing friends have been donating breast milk.

oh yeah and we discovered that I am one of those rare lucky women with too much of an enzyme called lipase. what that means is that when drank fresh my milk is fine, but left to sit, even stored by guidelines, develops a metallic sour taste. the only way to prevent this is to scald the milk immediately after it is pumped which is hard to do when I pump at work.

it has been hard not to get discouraged for sure. sometimes it seems like if its not one thing its another!

On top of all that, my insurance has decided that we don’t need hospice anymore. This decision is based on the fact that Gideon is not “declining”. What that means is that we have to figure out how and where we can get our supplies for his dressing change.

Everyday a new chance to walk in trust I suppose.

That is it for updates for now, I am going to work on setting aside time every Friday for a quick note. Thanks for your patience!

reflections on January 7th.

Yesterday was the anniversary of the day my life got turned upside down.  Turned upside down, thrown up against away and put through the spin cycle just for good measure.  Yesterday as the anniversary of the day we went for our level two ultrasound to determine what was causing our baby's head to measure so small. 

I've been keenly aware the past couple of weeks that yesterday was coming.  I watched pensively as the days were i could say "last year we were normal, last year everything was OK. Last year at this time we were so excited..." slipped away.  

In my life there is a very distinct before and after.  Before January 7, 2010 and after January 7, 2010. 

I would often catch myself saying, "remember last year this time. we were so excited. so full of hopes and dreams..."

what a difference a year can make.  You might say 2010 was not our year. But then again, maybe it was. 

These past few weeks i have been drawn to Psalm 84:10

"Better is one day in your courts than a thousand elsewhere; I would rather be a doorkeeper in the house of my God than dwell in the tents of the wicked." I don't think its inaccurate to paraphrase that verse by saying, "i would rather be the guy who answers the door in Gods house than to be high on the hog living in the mansions of the wicked"

2010 was by far the hardest year of my life.  I have never cried more, hurt more or grieved more in any other year of my life.  But it was also a year that I was drawn more near to the heart of my savior that i have ever been.  That Psalm is constantly reminding me that no matter how much this hurt, how much i just want to make it go awayy sometimes.  I am being made more like my Savior and that is worth something...