Wednesday, September 29, 2010

not set ablaze

I have a reoccurring nightmare that Gideon’s bandage falls of and I can’t fix it. In this dream his brain is exposed and I have forgotten to bring the tender tape to put the bandage back on.

Sunday at church we noticed that some of the gauze was exposed from under the tender tape and I forgot to restock the diaper bag with the extra tape. So David left me to fend the screaming toddler and the colicky baby all by myself to take Gids home and fix his dressing. Fairly innocuous but after months of nightmares I was fending off a full blown panic attack.

Let me back up. Part of our daily routine is changing the dressing that covers the encepolocele, the exposed brain and nervous tissue that protrudes from the back of his head. We lay down a chucks pad to create a clean field on the bed. David opens the sterile saline and carefully pours it into the packages of sterile gauze while I cut the chin strap on his current dressing. I put on sterile gloves, unwrapping them for their sterile dressing, not touching the outside of the gloves or anything else while David removes yesterdays dressing. I remove the sterile gauze making sure not to touch anything but the gauze and his brain. Cover his brain with the gauze and wrap it all in Walgreens tender tape. The best invention ever. We would be housebound if hospice hadn’t made that discovery. All while wearing masks to prevent any germs we might breath on him and headlamps because our bedroom is not well lit.

By far the suckiest part of my day. Its not to great for Gideon either, he HATES it.

So where was I…oh yeah, the reoccurring nightmare. I guess its like any parent anxiety dream, any normal parent anxiety. I am pretty sure every mom under the sun wakes up in the middle of the night and checks to make sure her baby is still breathing. Most mothers have the luxury of being able to chuckle at their paranoia and go back to sleep. But I get a text from the baby sitter that he is fussy, he doesn’t wake me up at six to be fed, something feels a little off today and fear and panic begin to wrap their boney fingers around my insides and squeeze until I can barely breathe.

And a still small voice does not say

“chill out, its just mom paranoia”
“he’s not sick its just his teeth”
“he is just sleeping in today”

I try to tell myself those things and the grip around my gut just gets tighter. Instead the still small voice says

“even if he is sick, even if he is gone tonight, I am still God. I will still hold you, I will still love you.”

And I can breathe.

When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.
Isaiah 43:1-3

Friday, September 24, 2010

this "normal" life

Four months. 

we celebrated four months on September 14th. We have cake every month.  we celebrate months because we may not get years.  for three months we had cake at PJ's ice cream and coffee.  I cried while ordering the cake.  it's pretty hard to explain why you are ordering a cake that says "happy 1/4" with out the waterworks. 

since last I wrote...
My grandmother passed away mid July and we went home to her funeral.  it was a crappy reason to see everybody but maybe it was grandma's way of making sure everybody got to meet him. 

Gideon started nursing, really nursing in August.  it was such a strange transition, all of a sudden, like he had been doing it all his life and those days of agonizing attempts to breastfeed were like a different life. 

Part of the reason i haven't posted anything new in a while is because i have been busy, the last "new" thoughts i posted was when my grandmother passed away.  But mostly because i have been kind of stuck.  not stuck in a bad way, or a good way.  Just, not much going on, while a lot is going on all at the same time.  going back to work has been really hard on me.  i am just so tired every way around.  And other than Gids learning to nurse, its' been a pretty boring life. 

To tell the truth, i am pretty worn out and tired most of the time.  i try to stay focused on the positive and live each day with gratitude but I'll admit chronic stress takes a physical toll.  everyday i think i just can't do it anymore, i am just too tired.  it's a very good thing God never gets to tired or my goose would be cooked. 

one of my favorite books about grief and loss is called Tear Soup.  eventually i am going to get myself a copy. I use it at work for expressive therapy about grief and loss but i think i have really learned more about grieving from it than the kids ever will. Soup making is a metaphor for loss and one of the points the wise old woman Grandy makes in the book makes is how strange it seems that others have gone back to their normal lives while her soup still has a long way to being done.

sometimes i wonder...when will my story become old news?  Not that it is about me, or that I need everybody to be paying attention.  But i wonder, are you sick smelling my soup? 

it would be OK if you were.  Sometimes I am.  I'd like to just forget how I live in the balance between grieving and joy and sometimes I'd like to just pretend that everything is completely normal.  well as "normal" as anything ever is. 

Wednesday, September 22, 2010

June 30: $275


Cost for a child gravesite at mound grove cemetery in my home town. Plus $100, as I understand to dig the hole and cover it back up again (there was a much more graceful way of saying this but I can't remember) grave markers can range from simple granite $675 to bronze with a vase for over $1000. You can fit one child and two adults in the mausoleum but only if one of the adults is cremated.

I am adding this to the list of things I just wish I didn't have to know. I am planning to file it right next to how to cover and encephalocele with tender tape and how much the dependant live insurance policy at my work is.

Now I don't really mind being cremated, after all, I’m dead. David is not a fan of the idea and since I am going to be buried with him I’ll respect that. Besides the only reason I would really want to be cremated is so that my ashes could be spread somewhere cool and I can't really think of anywhere I would want to be dusted so to speak. Except maybe my backyard.

Imagine what that might do to the property values.

We were doing some financial planning today and for some crazy reason I thought I might be a good idea to find out just how much the dying part of this story was going to set us back.

It was not a good idea. It really knocked me out more than I expected. It was just going to be a casual phone call. Just to find out, can you fit three people in the mausoleum. That spot right above David’s mom. It moved from casual inquiry to find an exit strategy fairly quickly, when I had to say umm humm to avoid blubbering to the cemetery lady. She probably gets that a lot. But my exit was not quick enough to keep me from digging myself in too deep, finding out more than I ever want to know. $275. But I will have to know.

That’s the part that really sucks.

Up to this point we really haven't thought our talked too much about the funeral. We figure why preplan. People die unexpectedly all the time and their funerals go just fine, well as much as a funeral can be fine I suppose. I know one song that I want to be played. It’s called "I will carry you" by Angie and Todd Smith and I love it. I love it because it captures our story with Gideon. Our choice to hold him while we are given the time.

It starts like this

"There were photographs I wanted to take, things I wanted to show you. Sing sweet lullabies; wipe your teary eyes, who could love you like this..."

I have it memorized. I sing it to him. Sometimes it feels like the only song that makes sense to sing. We took family photographs a few weekends ago and it occurred to me how blessed we are to have this time with our son. These were some of the photographs I wanted to take.

I really love this photograph of Gideon. Jessica did a beautiful job of capturing our family and I can’t thank her enough for this. From the moment I saw how beautifully she captured our wedding, I knew I wanted her to take photographs of my children and I had no qualms driving a week old baby to Michigan to do it. What she does with baby portraits is nothing short of astounding.

But I have to confess I have a love/hate relationship with this photo. It is so beautiful. But so obvious that something isn't quite right with this little boy. It is, at least to me, a painful reminder of all of the photographs we won't be able to take.

That first birthday party with cake all over, his first steps, first day at school...

I am probably repeating myself these days. I don’t really go back and read my previous notes too much. I wish I had more news to tell you, something exciting and new. A lot of life is lived in the ordinary I suppose.

I am pretty stuck on the same dance moves lately and I am not doing them well. I catch myself swear word angry a lot these days. I try every day to breastfeed Gideon. Every once in a while he latches and gets a few calories the old fashion way. But sometimes he just doesn’t get it and screams at me to drive the point home.

It makes me want to break things. Maybe I should just go to the dollar store to get a stash of pottery that I can smash.

$275 worth.

6/18/10 show me the money

I am hurting today. It started yesterday as a sat and held him for a while, just the two of us, skin to skin. He slept peacefully on my chest and my mind wandered. Every day we have him I love him more. He is becoming a part of our lives. The longer he is here the harder it will be when he is not. It is so wonderful to have him, but bittersweet too.
I’d done so well for a few weeks, warded of the ache that bleeds so many tears. This isn’t want I was planning on being my next thought to share with you. I just got so busy living and loving my son that I put of telling you about the lesion I learned on the way to Wal-Mart to buy diapers.

But today it hits me the temporariness of this gift. The gift of his life. It is a beautiful gift. Sometimes when he wakes me up four times in the middle of the night it is hard to remember this is the gift. I caught myself thinking the other day how much work newborns are. They are cute and cuddly for sure but the sleep deprivation can easily become the focus of my thoughts. I remember thinking, man I have to do all the work of the newborn and won’t get the reward to watching him grow out of this stage. I pondered on this a bit as it became uncomfortable familiar. Like being pregnant and complaining that I had to go through all the uncomfortable of pregnancy and might not even get to hold my baby.

Ugh. There I go again. What’s in it for me? Where is my reward for all this work?

Why God, why won’t you, why didn’t you, why haven’t you yet, healed my son? All this work, all this investment but no return.

Then He reminds me. Gently. This is the gift. Having your son for as long as you have had him is a gift. Every moment is a gift. And I remember it’s a gift I don’t deserve. I still believe God can heal my son. I still believe I could take that bandage off one night and everything would be perfectly whole. But even if it never is, even if this life is filled with pain and I don’t see physical healing, I will praise His name.

Because I believe that God wants to bless us and we can and should ask and prepare for that blessing. Physical healing, wealth, health all of those things are icing on the cake, gifts are given because we are loved but sometimes gifts that are withheld because we are loved. But I also believe there is no greater reward than the spilled blood of Christ. With that I am learning to be satisfied.

My son is teaching me to stop seeking the gift and start desiring to be with the giver. So today I will trust my God that He sees my tears and holds them. That he wants to hold me through my hurt. That His will is perfect and that is enough.

update 6/9

I have had a lot of people asking me how little man is doing so instead of sending lots of different messages i thought i'd write a note.

it will probably be a short one today. not much has really changed. we are kind of settling into life with a newborn. he has been really stable (knock on wood). he is eating and growing.

we met with the hospice doctor on friday and had a conversation about what are lives are going to be like. his suggestion-as much like any other family with a newborn as possible. there is no "safe" place. the "bug" that takes his life could be lying here in wait just as well as about anywhere else.

of course we are not going to be reckless. we are going to try to avoid places with lots of germs like hospitals and nursing homes but other than that we can't live in a bubble.

the truth is, we all live on the edge of death. we are all one ran stop sign, one nasty infection, one clogged artery away from the end but we don't constantly go around thinking about it. we would all go crazy.

can you go over that last step again for the 100th time?

“That my heart may sing to you and not be silent.

O LORD my God, I will give you thanks forever.” Psalm 30:12

The Devil likes to make us believe we are alone in our pain, that how we feel is what is real. One thing I have learned and am always relearning is that my feelings do not determine my reality.

Feeling in a place that is unreachable is not the same as being in a place that is unreachable. I am not alone. In the past few months I have been humbled by the families who have shared their stories of loss with me and my world has changed in so many ways. I have been comforted and amazed at the courage of mothers who have shared their losses with me, whether sharing your story of loss in pregnancy, the loss of babies two days old, or children you have watched grow to young adults, you have touched my life in ways I cannot describe. I am beginning to see how much our loss and grief binds us together if we let it. Beginning to see that all of our lives are touched by hurt, pain, suffering and loss and that a life without loss is an illusion not worth maintaining. Like I’ve said before, pain is not a contest.

I am not a member of some crazy exclusive club were the entry fee is the loss of a child and only those people understand my pain. It’s not exclusive and it’s not a club. It’s a family. A family bound together by the loss of a child. A child bound so that we could all become members of a family that shares in suffering and joy.

I will only be alone and unreachable because I am the one not reaching.

And I am learning to reach. All the time, God has been waiting for me to realize something very important and take his hand to begin something. Life doesn’t begin again when this is “over”. First because it will never end. Our lives will never be the same. We will always be parents who have lost a child. But the question is becoming, why do I want it to be over? Why am I in such a hurry to not hurt anymore?

Because hurting, well, hurts? Who wouldn’t want to get the heck out of that like greased lightening? But What if running away from the suffering, the hurting isn’t the point?

Psalm 30 has become one of my favorite Psalms of late. (Don’t tell my mom but I am even thinking about getting some of it in a tattoo). Verse 11 in particular:

“You turned my wailing into dancing;
you removed my sackcloth and clothed me with joy”

I discovered the other day, thanks Henri Nouwen that I have been reading it all wrong. Even though somewhere I knew my understanding was off, my heart tricked me into thinking it was saying “when my mourning ends, if I can just get through this rough patch, then I will dance”.

grieving and joy, mourning and dancing, I am being shown, are not mutually exclusive. I believe it is God’s deep desire to dance with us while we grieve. To teach us how He can use the suffering in our lives to create something in us, and perhaps even among us, which powerful and beautiful. And the good times, can really be only be good, when woven when these hard times. These times of hurt in our lives are not just something to get over and through and try not to think about. No. I am learning to stop waiting for life to begin when we can “move one”. I am learning to live fully right now. To smell, to touch, to breathe in every moment of this time with Gideon even though sometimes it hurts more than I can describe.

I am learning to reach for my Father’s hand and let him teach me the steps. For those of you who have had to learn choreography with me, I can see you chuckling right now. It’s going to be quite the process, learning this dance but what a show it will be.

You are welcome to join. No auditions necessary.

“Father, thank you. Thank you for wanting to dance with me when I am so unworthy. Thank you for your Son, for allowing me to share in the sufferings of Christ. Thank you that I never have to bear this hurt alone, that you invite me into your family, that you paid the entry fee. Take what I have, take my life, I lay it down on your alter and pray that you can make it into something beautiful. I give you my son knowing that he has always been yours. Thank you for the loan. For letting me having him for a while. Teach me to love and to live fully and use our lives to bring you glory, to bring others who are hurting comfort, and to show some who may not know the power of your touch in their lives how awesome it is to be in this family”

updates from the land of life with a DNR on the fridge posted to facebook May 30

We got a new fridge by the way, ours died. David and Daniel found a good deal on a very slightly dented one at Lowes and it came today. And because in the state of IL DNRs must be on display, it’s one of the few things transferred at this point to the new fridge.

This all seems to have started with the fridge. I doubt that it is really the fridges fault. Friday night after we went to go look at fridges, feeling brave enough to take Gideon out of the house, David noticed that Gideon was feeling hot. We took his temp and he was running at 102.4 fever. I don't need to tell you this is not good. It’s not great for a normal baby but for Gideon sick, even just a little sick is really complicated.

We called our hospice nurse who advised to alternate Tylenol and ibuprofen to bring down the fever. She was able to get us back on continuous care for a few days and our nurse arrived early Saturday morning.

He has not gotten up too much over 100 degree fever since Saturday but we suspect that is because we are still pretty consistently dosing the pain/fever reducer medications.

Saturday was the worst. He was cold, clammy and pale for a lot of the day. He just hasn't been himself either. He is almost never awake and he eating very little, maybe a third of what he normally does.

I wish I could tell you what that means but I don't know. None of us do, not even the hospice people. It could be something he bounces back from, it could be the beginning of the end. We just don't know. I am torn between which one I really want it to be. Of course I would love to have him longer and I am shattered when I think about what it will be like when he does go home. At the same time, getting better means going through this again. Which isn't really comfortable for any of us, him included.

That being said I really don't know how to ask you to pray. Since nothing seems to be changing we are going back to once daily check ins tomorrow. this means that David and I will be responsible for pain medications, Benadryl (he also has a rash) and his seizure medication along with monitoring his temp to make sure the fever stays down. I am most worried I won't know when it is time to break out the big drugs. he has seemed really uncomfortable lately and that worries me. I have one job as a mother right now and that is to make sure my son does not suffer pain while he is here with us.

well two jobs. love the stuffing out of him and make sure he is comfortable.

I will do my best to keep you updated but we are pretty consumed with just living right now. I might be slow to answer my phone. talking on the phone really wears me out. every time it rings I kind of cringe. it’s hard to explain but it’s just one of those normal easy things that suddenly becomes like running a marathon. I guess at some point we should organize some kind of phone chain so David and I don’t have to call a lot of people to update them.

I know that everyone who calls just wants us to know they care and I love that about my friends and family. it’s just something about this process, like I said, that makes simple normal everyday life things feel like climbing Everest.

Though I am sure that is a "normal" part of grief and parenting a terminally ill child it really stinks. This “normal” is the pits.

read with care intially posted to facebook May 28

I went to the library to get a book yesterday. It was a more difficult task than I anticipated. I know that she told me that adult nonfiction is on the 3rd floor but somehow I ended up on the second floor. The children’s section. A nationally recognized children’s library. I got off the elevator and before I could slip back on unnoticed it disappeared to the floor I was probably supposed to be on. I think I just stood there for a few minutes, I am not really sure. I vaguely remember looking over at the librarian and saying something about adult nonfiction on the third floor. I pushed the button for the backstabbing elevator and felt that familiar wave come over me. The one that turns a fairly sane thirty year old women into a heap of tears and snot. I don’t even remember if there was anyone on the elevator going up, I just looked at the floor and hoped not to make a total fool of myself. The book I was looking for wasn’t even on the third floor. I gave up, left the library looking a little dazed and ordered the book on

It’s hard to describe my world right now. Not because it is hard to come up with ways to describe it, but because it is painful to do so. My son is so beautiful. I love the way he grips my hand. I love to feel his little feet and the way he looks at me with those huge blue eyes. People say he looks like me. He does have my eyebrows.

But I live in never land right now. Not too unlike the storybook land where lost boys remained children forever evading pirates and flirting with mermaids. My son will never grow up. He will never talk. Never crawl. Never walk. Never go to story time at the local library. Never audition for school plays or try out for the football team. He will never tell me jokes. Never bring his first girlfriend home. Never, never, never. Who hid the mermaids on me because this version of never land sucks.

My son is beautiful. And I will have to let him go. Now I know that God can still work a miracle, I am not ruling that out. That would be awesome. It’s just not what I think he is telling me is the road we are going to walk with him. Our road is paved with different miracles. For now I live in limbo. It’s not a pleasant place to live. It is filled with joy that cannot be separated from sadness. The two are married now and I can’t remember what it felt like to be just plain happy. I think it might be a long time before I feel happiness that isn’t tinged with the sadness of this life.

I don’t want to live like this forever. I can’t live like this forever; waiting for my son to die so David and I can begin to put the broken pieces of our lives back together. But wanting to begin that means ending this. Ending this means watching my son die. What kind of mother wants her son to die? I live in a world where I cannot separate my love for having him here with me from my hurt knowing it has to end. Where I can’t begin to heal from the current grief, something I want desperately, to feel normal and happy for a bit, without knowing that wishing for such comes at a terrible price. I suspect that most parents of terminally ill children feel much the same, but I don’t know that. Right now David is the only other person I know going though this.

So many times, no matter how much others try, and we don’t want anyone to stop trying, we are in a place that is, unless you have been there, unreachable. We won’t be here forever but that doesn’t stop it from being searingly painful right now.

Forgive me please if I am short with you, if I give you a blank stare. I am sorry if it feels you are walking on eggshells around me. I hate that it is this way. I don’t know what to tell you I need right now. I know that I may need to talk. Please let me. But please don’t make me talked either. If I tell you I’m “ok” or “fine” please just believe my lie and don’t take it too personally that I just don’t want to talk about it in that moment. It’s just awkward to say to people I feel like crap but I don’t want to talk about it. Fine just seems so much more socially appropriate. I think David and I really just need listeners who don’t ask too much of us right now. If you can avoid it, please don’t ask us to make too many decisions right now. Even small things feel overwhelming. I might need a hug but I might need some space too. I am a private griever and sometimes, though I am generally an affectionate person being hugged when I am not in the right place for it makes me feel trapped and uncomfortable. But if you ask me if I need a hug I will tell you the truth and be grateful that you are willing to give me my space if that is what I need.

I live in a land of “never”s. I serve a God who will never leave me or forsake me. A God who will never let me go. Thank you for understanding.

birtday story

I am, as you can probably imagine having a hard time gathering my thoughts. As much as I can remember through the fog of these hours this is the story of how Gideon came into this world. For those not to interested in the labor and delivery part I’d skip to Friday morning.

Wednesday at 8:00 PM we were admitted to hospital. I remember telling the receptionist at the desk we were there to be induced and we had an appointment at eight. She gave me a quizzical look and asked if I was excited, I must have looked surprisingly subdued for a woman about to have a baby. I opened my mouth and nothing came out but a choked sob. What do you say when the moment when you are supposed to be overjoyed is filled with ache? When instead of biting my nails with excitement in the waiting room I was breathing slowly to what felt like the rhythm of a funeral march. David graciously recued me and answered “our baby is not expected to live for very long”. Faces fell, apologies were muttered. After having to retell our scrip a few times “we understand our son’s poor prognosis, please take some time to review my doctors notes about our birth plan….” I was hooked up to my IV as prep for tomorrow started on the topical medication to get things moving. This medication has to work overnight so I got some sleep on Wednesday night. David got less sleeping on the "bed" next to me across the room.

Thursday morning I was dilated to two so they started the pitocin. I was able to visit with my dad and my sisters in the early drips of pitocin before the contractions took all my attention. I really couldn’t tell you much for the time line though I know my water broke after lunch and I ended up having an epidural not to long after my water broke. Though I am sad that I could not have the natural delivery that I wanted but I know that overall we made the best choice for Gideon. The anesthesiologist was not only merciful but skilled and I was able to lie on my side during the procedure. Shortly after that I had to ask David if I was still having contractions. A moment of levity, he chucked looking at the monitor “oh yes you are”.

I started pushing around 11:45 pm and at 12:28 am Gideon was here.


Gideon was quickly snatched up by the nicu team. It is all a blur but I remember that I could tell he was not doing well breathing and it seemed like an eternity while they were working on whatever it was they were doing. I am not sure I am even ready to know those details yet. The first time I saw him he had a breathing tube in. David sat next to me holding him while they finished taking care of me (I’ll spare the details on that one). We all just watched him. I remember David’s first observation. Gideon you have your mothers eyebrows. There are two of them!

Then I got to hold him. I think I knew that my holding him meant that he would not be with us for long. That was always the plan, be with us if his condition looked bad, treat him if it looked like he could live longer and spend time with us later. I remember thinking how strong he was as I had to hold his head so the nurse could "breath" for him. Our family all came in (after I was covered up of course) and welcomed him into the world. We were so excited he was alive. Excited and hopeful. I told Gideon that if he wanted to meet his puppy at home he was just going to have to breathe on his own.

Then it was just us and the doctors as everybody filtered out.

Though I know many of you are very curious, there are details of this moment I am not ready to share this publicly and might never share. what I will tell you is that it became obvious to me in those few minutes how severe Gideon’s neurological conditions was and how soon he would likely go home to be with his Father in heaven. David told me later that he had known from the beginning. The first part he saw of our son was the part that told him something was very wrong.

David convened the family back to tell them what they had not scene and began to develop a plan to say goodbye. We knew the photographer was coming in a few hours and decided to go ahead and leave him on the respirator for that short time so we could have memories of time alive with us. We also wanted to talk about organ and tissue donation. So David took Gideon to clean him up a little bit in the nicu and I got ready to move on to recovery.

Where I stayed just long enough to drop of my stuff before I too made way to the nicu. My family had to find a quiet space to wait.

I found my two boys there in the nicu. Gideon quiet with David's hand resting on his chest. I almost said tiny but really my son is moose. At 8 lbs 10.3 oz and 18 in long he is a big baby...but to me he still looked so small. I watched painfully as the nurse tried several times to put an IV in his hand and feet. Thankfully I had not had to watch as David had watched other nurses try the same.

Eventually they decided to put his IV in his belly button, which is a longer process and required and x-ray after it was finished to make sure it was placed right. I remember telling the nurse that we were going to take him off the respirator and wondering if it was worth all the work to put in this kind of IV. She reminded me that to even considered organ donating this was a step to take, even if we were going to let him go soon. The nurses promised to look into organ donation for us.

We finally moved up to a room they had for us with family to spend some time with our son. Based on the monitors Gideon was not attempting to breathe at all on his own. There we waited and talked and watched. We were blessed beyond words to have a photographer from now I lay me down to sleep come and help us create memories of our family and of Gideon. There were lots of tears in that room.

Our pastor came and anointed Gideon and we prayed. We met with the representative from gift of hope who let us know that they might be able to use Gideon’s heart valves. We were overjoyed. Our son was going to be someone’s hero.

Then, after everything we needed to get done was done, David and I decided to spend our last few moments with our son just the three of us. I can't think, or I couldn’t think at the time of anything in my life that has been more painful than that moment when took out the breathing tube. We told him we loved him, and that it was ok to go home. We took a few pictures, memories of him without a breathing tube and waited.

I’ve never watched anyone die so I am not sure what I really expected. What I didn't expect was to watch him take slow steady breaths and more slow steady breaths thinking what do we do now? What do you do when you are ready to let go, but go doesn’t happen? We were left to do the same thing Gideon was doing. Breathe. The next few hours are really a blur. I think David and I fell asleep some with Gideon sleeping on my chest. Breathing.

And so continued the advanced course in taking things one step a time. I am, right now, by the way working on my PhD in that particular area of study.

I really should say the next few days were a blur. We were faced with agonizing choices, which in retrospect with all the information were easy choices. I am left to wonder why it was that God put us through that process and didn’t just make it as easy as it ended up being. David has done more research since our decision not to do the procedure and more than one source as verified that encephelceles with microchepaly should be considered inoperable. Confirmation we made the right choice. I was at this point and really to this day continue to be really tired of having to make these kinds of choices. That might be why I still cringe when people ask me to make a decision, even stupid small decisions are a lot for me these days, but I am getting ahead of myself. This, I believe, brings us up to the last note I entered shortly before we left the hospital.

Incidentally it also brings me to the place where I need to take a break. Hopefully soon I will be able to share more about what life is like with our beautiful son.

Friday, September 10, 2010

update may 17, 2010

I started working on a note a few hours ago to tell you all about our journey the past few days and I have just realized it is too much information to handle all at once.

I will instead, for now, give you a brief summary of where we are at right now. I have not been intentionally elusive, we've just had some hard decisions to make in the past few days about our son's treatment. Things have changed lightning fast at times and to walk you though all those changes right now is too overwhelming for me and probably not what matters right now. I will at some point sit down and tell you more about the whiplash journey that past few days have been, but I think that now is not the time.

As of right now it looks like we will be going home tomorrow. I can't thank you enough for all your thoughts and prayers. There have been so many I think it may take me weeks to read and fully appreciate all of your kind words, thoughts and offers to help. I know that many of you have asked what you can do to help so I will take some time at the end of this note to give you a sense of what David, Gideon and I are already getting and might need.

Gideon's diagnosis has changed. He does not have aprosencephaly as diagnosed prenatally. He has another condition that is more common but does not essentially have very different outcomes. The name of the condition is encephalocele in addition to microchepaly. The doctor was correct in his findings that Gideon's brain is not only small and underdeveloped but also not structured right. Medically speaking Gideon will never talk, walk, crawl. He will never develop or be able to more than he can right now.

As a result of his condition he is at a very high risk for infection. Though it might be possible to opt for a procedure that could reduce the risk of infection and prolong his life, overall the surgeon who does this work has told us compassionately and frankly the risks for Gideon dying and experiencing undue pain and suffering are substantial and we have opted not to do this.

It is impossible to know how long Gideon will live. Predictions are that he will, with in the next few weeks or months succumb to an infection and we will, when that time comes make sure that he does not experience pain and that he goes peacefully to be with his Heavenly Father, where he will be healed, completed, whole and waiting for us.

Our goal is that his life be as filled with love as we can make for the time we have. The quality of his life is our top priority. Could God still miraculously heal Gideon? I believe he already has. After some research we discovered that only one in five babies with his type of this condition even survive to be born. God has given us this gift for a time and we will treasure every moment. We ask that you will pray for peace in our lives, strength to deal with our loss, wisdom to see what we have gained, and that we can cram as much joy and love into his little life as possible.

We pray that God will show us what Gideon is here to do. What lessons he is here to teach us. He has already touched our lives. I can't even begin to tell you what he has taught, but I will. Someday when things settle down and the grief of lost dreams has moved from the opened stage to the healing stage, I will be able to share some of the amazing things this little boy has shown me.

David and I, though heart broken, have a sense of peace about letting Gideon go home. We are not going to fight his home going; God is sovereign and we trust that he can use a short life just as much as a long one.

We are blessed to be working with some wonderful people from seasons hospice who are experts in pedapediatrice. We will have, at least at first a nurse with us 24 hours a day. Both the wonderful people at my church and a group fearlessly lead by my college roomie Erin number one are coordinating meals for us. (For the record Erin Ward you are only number two in sequences I love you both the same:)

Erin found me a moby wrap so I can keep Gideon with me as much as I want and I have a pump. My wonderful cousin Liz Videan has found us a bassinet will be up in IL this week; until then I am not above using a dresser drawer (though finding and empty one in my house might be a trip...I could probably empty the lingerie storage for a while...)

If anyone knows of a recliner that we could borrow or buy that would be awesome. We have found it to be a nice way to take naps with Gideon as he loves to be skin on skin and is best if he can sleep on his stomach. He also is fond of his furry daddy's chest. He seems completely content, by the way to latch with David not me..... We have clothes enough for the summer thanks to Braylon and Kale. We have a car seat from Tony and Coleen Mason.

We welcome visitors but we'd like to try to keep him infection free for a long a possible, we might not be able to let everyone hold him. We would also like a couple of days to gather our thoughts and rest. But if you would like to stop by let me know and we would love to have warned I've gotten over the whole not asking for help thing and might just put you to work. (Somebody has to throw the ball for Angus aka "Kong duty")

Thank you again for all of your thoughts and prayers. This journey is far from over and I have so much more to tell you about the last few days. We will try our best to keep you updated but we don't have Internet at home and I probably won't be leaving the house much. Thank you again for being a part of this journey.

Saturday, September 4, 2010


as many of you know our son gideon daniel ford was born this morning at 12:28 am. My time is short now so i will have to give more details on that later.

as friends and family have been updating we took him off the respirator this morning expecting he would pass soon after. he has continued to breath on his own up to this point.

i think that is important that we let you know some other important details. I have waited to share those detail on face book until we were able to tell family members in person. That gideon survived delivery and this long is no doubt a miracle. We are loving every moment holding him but it is very clear based on his condition, those moments are going to be few. The information is graphic so i will not share it here but it is very clear that will go home to be with the father very soon. We may be slow to update as we cherish this this time. Thank you.

Update 5/11/2010

Our doctors appointment was yesterday. We decided that it was just too early at that point to be induced. Truth is we hemmed and hawed until she suggested a compromise. Thursday. She said that it could be a several day process. They will have to use a gel to soften things up before they can even begin the pitosin.

Looks like I might be getting comfy at university hospital!

We’ve decided not to wait past this week because of her concerns for mine and Gideon’s well being. Its not a decision we have made lightly or with out a lot of prayer.

That’s the newsy stuff. If we go into labor naturally before that my friend Sara will be periodically updating my face book but other than that, its just a waiting game.

I can’t thank you all enough for your words of encouragement and your prayers. Sometime when the dust settles I hope to have the time to thank each of you individually. It is really amazing to think that people all around the world are praying for us.

I’ve had so much on my mind these past few days. The closer we get the more we fight a battle against fear. The Devil likes to make us believe there is no hope. Sometimes it is so easy to get sucked into that lie.

I find myself fighting against being angry and bitter and resentful. Those are my enemies these days. Just as this journey has revealed strength I didn’t know I had, it has also revealed some very ugly things in my life that I must bring to my maker to refine. It was at my doctor in town that I found myself really, well, ugly.

It was a very young girl, she couldn’t have been more that 20, I am guessing close to 17. Coming for her follow up carrying her beautiful baby boy. With her, I can only assume her boyfriend. Who nonchalantly proclaimed when he discovered how long that we had been waiting that he just couldn’t wait that long because he was on parole and he only had so much time away from home. And the ugly in me came to the surface. Why to they get to have a healthy baby? Do they even know how to be parents? Do they have any concept of what it takes to provide for a baby? Why do they get to have a beautiful, healthy baby boy….well you get the point. Like I said it is not pretty. Not pretty at all.

It’s even worse then the “why me monster.” because I can usually step back, I realize, why not me? This judgmental ugly me is what I must turn over the refiner and pray that walking through this fire will remove that in me.

God, grow compassion in me and not resentment. Grow love, and not anger. Teach me not to judge others and remove the cancer of judgment in my life. Help me to remember that only through your grace are any of us worthy to approach your throne.

monday splat 5.10.10

Monday mornings. Big collective ug. Sunday has been the first day of my workweek for a while and Tuesdays before that so i haven't had the Monday foreboding for a while.

but today is a bit of an ug Monday. 8:45 appt at university hospital means up at 5:45. Our doc told us last week that if i had not gone in to labor by today she wanted to keep me and induce. Today. Monday.

although we have been mostly anti induction only doing it if necessary, not just because Gideon is taking his time (a personal choice based on our research) we have decided to go in with open minds. Our doc is very knowledgeable and up to this point has proven trustworthy.

which means if she has viable reasons today could be the day our Gideon comes.

that for me is a lot to chew on right now. it feels something like standing on a the edge of cliff waiting to get a giant shove into the unknown. All i can do is pray and trust that God will catch me before i splat. Catch me or give me wings.

either way its his strength. Not mine.

waiting 5.3.10

i cannot fully express my gratitude for so many of my friends and family that haven chosen to stand in the gap for david and i. The gap between where our strength runs out and the unknown of all of this.

i continue to learn and grow in what it really means to be the body of Christ.

we are waiting to meet with the nicu doctors who are doing there rounds. We will meet with them to discuss a care plan for Gideon. Our goal to be prepared for a miracle. To love our son and provide to most compassionate and hope filled care we can in the face of what in earthly terms are impossible odds. Nothing, we know, is impossible with God. We wait for the word of the Great physician who has not made his plan known to us yet. We wait for a joy though veiled, we know is promised. We wait to dance with Gideon. We wait to know if that will be on earth or in heaven.

We do a lot of waiting these days.

don't tell my boss but...April 28, 2010

I am at work, and should be working. But somehow anything that requires me to think about work just isn’t connecting today.

We saw our doctor yesterday. Gideon weighs about six pounds. Small but she suspects the measurements are being dragged down by his head size and his hesitant to diagnose a growth restriction. She thinks I will go into labor soon, before my appointment on Monday. We plan to meet with the neonatal doctors on Monday to talk about a care plan for Gideon. We are going to talk about some options after he is born. Mostly David and I want to emphasize our desire to hold our son if our time is going to be short.

I want to breathe in every moment I have with him. I want to remember his smell, feel his toes, touch his hands, and kiss his face. Everything. I continue to believe that God can, and God will do something amazing. At the same time, I need to prepare my heart for the grief that might be part of His miracle for our lives.

I know I must be prepared to praise Him no matter what, but right now...I just want to break apart. I am crying today. I am hurting today. When I think about my family coming to see him. We should be celebrating, not talking about holding him while we let him go. I am in a place of brokenness right now and it’s hard to write. There is a lot I want to tell you about, like what a blessing my friends have been, there are good things happening.

Right now, in this moment I am sad and so very broken. Somehow I have to pull myself together to run a therapy group for 18 teenage boys in 20 minutes. So many thoughts I want to share and I’m afraid I might not have time too. Hopefully Saturday, or even later this week I will have more time. Time and more thoughts collected. Until then, thank you for your thoughts and prayers. I know they have kept me going this far

thoughts 4/14/10...because of a pee test

28And we know that in all things God works for the good of those who love him,[j] who[k] have been called according to his purpose. 29For those God foreknew he also predestined to be conformed to the likeness of his Son, that he might be the firstborn among many brothers. 30And those he predestined, he also called; those he called, he also justified; those he justified, he also glorified.

31What, then, shall we say in response to this? If God is for us, who can be against us? 32He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? 33Who will bring any charge against those whom God has chosen? It is God who justifies. 34Who is he that condemns? Christ Jesus, who died—more than that, who was raised to life—is at the right hand of God and is also interceding for us. 35Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? 36As it is written:

"For your sake we face death all day long;

we are considered as sheep to be slaughtered."[l] 37No, in all these things we are more than conquerors through him who loved us. 38For I am convinced that neither death nor life, neither angels nor demons,[m] neither the present nor the future, nor any powers, 39neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

Romans 8:28-39

I am so grateful that God has promised he will work this out for good. In my good moments I can really embrace this and praise God for what he is doing and going to do through this time. I cling to this passage as a comfort and promise.

If Gideon is born just the way the doctors predict he will be, I am suspicious that it is not that God didn’t heal him, but that there was nothing he was to be healed of. that Gideon was made exactly the way he was supposed to be for a plan, and a purpose. That his life, however how long or short, was exactly the way God meant it to be. God, after all, does not make mistakes. Just because it seems like one to us doesn’t mean God made a mistake. In some bright moments I am able to embrace this. I am able to be so grateful that I get to be the one who brings Gideon into the world, who shares his story with you. I am grateful for being used by God for this purpose.

In my not so good moments I want to scream at him. “I don’t care about your stinking plan. I don’t care what good you are going to do with this. This hurts too much. It cannot be worth it! I want my son, whole, healed and mine to keep until I am old and gray and move myself onto the promised land long before him”.

A lot of the time I hover precariously between the two. Wishing I could be serene enough to only see the former, but knowing that I am still being perfected by Christ, trying not to beet myself up too much for the latter.

Today I had some quite time to sit when my doctor sent me to St. Mary’s hospital to keep tabs on my blood pressure for a bit. Just a precaution, nobody panic. I am getting better at solitude. Better at listening. But it was hard today, being in the place where if everything had gone like it was “supposed” to I would be delivering Gideon. Hard not to be angry and sad. And I am weary of the battle I fight against despair. Sometimes I am just so tired it aches to move.

Thank you for listening. Thank you to my friend Jared who called just to check in on me. my La Leche League friends who without even realizing it have met one my greatest needs. Something I said to my husband…I could really use this but something that I would, in my control freak, perfectionist self, never admit or ask for. To my coworkers who don’t freak out when they catch me crying at my desk, to my boss who doesn’t haggle or question when I have to spend my afternoon in the hospital and not at work. My church family who emails me to let me know they are thinking about me and praying for me.

For these things and countless others I am grateful in ways I cannot express.

summer on the way Thoughts: 4/9/10

I’ve been watching the trees very carefully this year. Every late spring/early summer I look up and think “wow when did the trees get green?” so this year I am taking note-everyday. Watching them turn greener and every time I remember to notice-it makes me smile. It’s nice to smile.

At the same time it’s hard-wanting to slow things down and notice the small changes. Enjoy all the moments while at the same time wishing I could just be over and done with this very uncomfortable and dark time in my life.

It’s been a long time since a posted anything and I could blame it on being busy. It’s not because I haven’t a thousand things on my mind to post. Just making the make sense of it all at once sometimes is more energy than I can muster.

I’ve started a note in my head lots of times. According to the calendar I am due in less than a month and the closer I get the more difficult this journey is becoming on my emotions.

I cry pretty much every day. I cried every day this week. I usually feel better after a good cry-it seems to help. It was a bit awkward to have my doctor walk in on my having my daily meltdown. She asked me if I wanted to talk to the hospital social worker. I told her I am a social worker. She asked if I was having thoughts of hurting myself or others. I only quipped that I had contemplated kicking David for his gum chewing (For the record I was able to ask quite nicely when the my nerves couldn’t handle even the gentle chewing)

Sometimes I am cranky lately.

The truth was I was getting what I needed from my wonderful, patient husband who just listens and lets me cry.

I’ve found myself a lot in that place, where if you been following my for a while, you know I’ve been before.

Thinking about miracles. The beauty of belief in a loving, powerful God is hope that Gideon could and very well might be an amazing miracle. The kind that makes doctors scratch their heads.

The dark side-and it’s really a small price to pay- is that everything is so unknown. I can’t quite rejoice, can’t quiet grieve yet.

Sometimes knowing something bad is going to happen feels more safe that not knowing what is going to happen at all.

I was lead the other day to re-read the story of Shadrach, Meshach and Abednego. Three Jewish kids in captivity still trying to worship the one true God in a land that did not agree. One day the king decided everybody is going to bow down to him and when these three don’t he threatens to throw them in the furnace. (That is the seriously abbreviated version) their reply from the book of Daniel.

16 Shadrach, Meshach and Abednego replied to the king, "O Nebuchadnezzar, we do not need to defend ourselves before you in this matter. 17 If we are thrown into the blazing furnace, the God we serve is able to save us from it, and he will rescue us from your hand, O king. 18 But even if he does not, we want you to know, O king, that we will not serve your gods or worship the image of gold you have set up."

And David and I found an answer to our questions about miracles. We have decided to think as the example they have set for us. Our God CAN, our God WILL, but even if he doesn’t heal our son, we will praise him.

Its saves me from having to think too much about if God will heal Gideon or not. All I have to focus on his that no matter what he does, faith is trusting him no matter what happens.

Perspective....thoughts 3.28.10

It’s amazing how God has such a powerful way of putting things in perspective. I only wish that it wasn’t in the way it was today.

I heard news today that a young lady I know, lost her month old baby to SIDS. I can’t even find words or imagine how painful that would be. I am held so accountable by this, by my friend Dianna who shared her story with me, by the compassion and losses that my friends have opened their hearts and shared with me.

One thing I have learned is that pain isn’t a contest. Mine is worse than yours, anything you can do I can do better…that kind of thing just isn’t how it works. I am so tempted sometimes to feel sorry for myself and throw myself I nice little pity party. I wouldn’t wish what David and I are going through on anyone. But if I could ask one thing it would be that when you think of David and I please also remember those who are hurting so much more. Those who go through more painful things than I can imagine. As difficulty as our situation is, I know I can’t compare it to how painful it must be to try and try and try to have a family and to be told no. my heart breaks for this young mother who lost her beautiful son with no warning. Most of all, my heart breaks for those who must face these painful times without God, without knowing how much our savior longs to hold us, cries with us, grieves with us and promises our brokenness will not go to waste.

How many times have I missed the opportunity to share this with others? how often have I not told others about what our Savior wants to do in our lives, how much he longs to hold us, because I was too afraid?

It reminds me of a drama skit from high school. The one where some kids talk about their scars and realize that it’s their scars that connect them to each other and to the cross.

So I pray, and ask you to join me in this prayer.

Father, Abba, please hold Megan right now. I don’t know if she knows you but let her know you, and know you more during this time. Put people in her life that are not afraid to share your love and grace. Capture her tears and let them become the rain that grows beautiful and powerful things in her life. Teach us all to open our hearts to those in pain and not be so blinded by our own we don’t see what you are using us, using our pain to do. Humble me God.

In the words of a beautiful old hymn by Kate B. Wilkinson

May the mind of Christ, my Savior,

Live in me from day to day,

By His love and power controlling

All I do and say.

May the Word of God dwell richly

In my heart from hour to hour,

So that all may see I triumph

Only through His power.

May the peace of God my Father

Rule my life in everything,

That I may be calm to comfort

Sick and sorrowing.

May the love of Jesus fill me

As the waters fill the sea;

Him exalting, self abasing,

This is victory.

May I run the race before me,

Strong and brave to face the foe,

Looking only unto Jesus

As I onward go.

May His beauty rest upon me,

As I seek the lost to win,

And may they forget the channel,

Seeing only Him.


Dr. Suess

March 27, 2010

I have to pause to send out a huge thank you. David and I have been doing pretty well emotionally over the past few weeks. A fact that I can only attribute to what I believe are the answered prayers of friends. All of you who have been lifting us up and praying for our peace. And we have had peace. More that we really should.

I have made a decision not to make myself sad or worried. To embrace those moments of clarity and hope. I guess I really have decided no to try to make myself feel anything. Most of the time that means embracing the great peace that God has given me. Sometimes like tonight, it means not running from my sadness or grief.

Tonight we went to go see suisical Jr. a local theater production all with kids under 16 years old. They did such a great job. The dancing was flawless the music was great and man can those kids act! (Shout out to Dylan and Olivia!) I worked backstage for a couple of productions and I love it. The kids have so much energy and they are so, well, not the kids I work with to put it mildly. I was so excited during Charlottes Web to be a parent volunteer someday. So looking forward in Miracle on 34th street to my whole family being in a show together.

And it hit me during the middle of intermission. Though I will probably be a parent volunteer someday and watch one of my children on stage showing of that talent inherited from dad, I may never watch Gideon shine on the stage. Hear him talk on an on about how fun it is to be in a show, or complain that Milton made the dancing to hard or proclaim victory or Chester cheetah chewed a chunk of cheep cheddar cheese (though I am not sure I will ever claim victory of that particular vocal warm up myself…)

So I have to say again. Thank you for your prayers. I am more that certain they get me through moments like these.

what really goes on in my head sometimes....3/26/10

Ok, so every since we met with the brain specialist and were given a fatal (at least medically speaking) diagnosis I’ve had some weird questions. Well, you could say straight up morbid questions. I am not sure who to ask so if anyone here is an etiquette expert feel free to chime in.

Keep in mind I am still convinced that God gets the final word in this. But I can’t help but wonder.

Birth announcements. Do we send them? How old does he have to make it too to send birth announcements? Do you send them if he only lives a few hours, days, weeks? What about funerals. I have been to funerals of babies who have died from SIDS but babies stillborn or who only life a few weeks? If you have a funeral who are you supposed to invite? Do you have a small funeral with just family or open it to anyone who would like to (well does anybody really like funerals let me rephrase that) would want to support David and I and our families?

Do you submit and obituary to the paper? What do I say when people ask me how many kids I have? When people who know I am pregnant now but don’t know the details of what might be to come ask me someday how my baby is?

This brings me to my favorite question of late.

How are you? To which I am always a little tempted to reply “how much do you know?” I don’t really mind the question per se, it’s just, and what do you say to people who don’t know or don’t know the latest? So if you ask me how I am doing and I get a weird look on my face please don’t take it personally. It’s just not as easy of a question to process as it used to be.

These are the somewhat weird and not necessarily spiritual things I think sometimes.

Thursday, September 2, 2010

head over heals (3.25.10)

I must confess I am madly in love with someone I have never met. And I fall more in love everyday. Today Gideon was doing something funky. I am not sure if he was doing pregame stretches or what but he has been making his presence known today. I loved it. I love every minute of it. And I love him. Every day I love him more. As much as I love my son, it is only a small drop of rain compared to the ocean of how much our Father in heaven loves him and loves me. Contemplating this love, forces me to think about difficult reality.

Why if God loves me this much, must I go through this pain. If He loved me an iota of what I love Gideon and He loves me so many times more, why must I go through this dark place. Why doesn’t he just rescue me and make it go away?

I am not so naive as to believe I am the first one to ask these questions, volumes have been written on the subject. But somehow, when you have to face it yourself, thousands more books about it won’t make it easier. I know God can heal my son. I pray in faith that He can. But what if Gideon is not healed? What if we must face loosing our tiny son before we really even have him? Is God still in that? Does God, as some suggest, guarantee physically healing to those who ask in faith. We are asking. If Gideon is not healed is it because we didn’t have enough faith? Because we didn’t pray right? Would God will for our son to have so short a life with us? Or did we just not get it right somehow?

Now, I am no spiritual giant, but I remember that Jesus said something about faith like a mustard seed…

And the other alternative, that God would will this kind of pain in our lives just doesn’t seem congruent with a God who loves us as He does.

I don’t know if God wills this kind of pain in our lives, but I am suspicious he allows it. Because God’s will for us to draw close to him and sometimes, I suspect that means rivers filled with pain and not just plenty must come in to our lives. We know that his word says in Jeremiah that He knows that plans for us, to prosper us. Is it possible to prosper we must go through some thorns too? Like that cademons call song “I had to walk the rocks to see the Mountain View”; maybe our journey must have those painful moments because of what is waiting on the other side. And we do know how it ends. Us with Him. The ultimate healing. And I am filled with wonder that my sins are washed away.

Perhaps as Angie Smith suggests, life is not about healing, but about bearing our wounds for Christ, as He bore our sins to the cross. Bearing these wounds and sharing them, sharing our love and sharing his love with this broken body that is called the church. Physical miraculous healing, God does, or perhaps sometimes does not do because He is God, sovereign and holy. God so powerful that we could not survive in our human bodies at the sight at Him. Moses himself had to be hid in the cleft of the rock while God passed by. How wonderful that a God who could crush us with his justice and holiness chooses instead to hold us with his mercy and grace. And maybe it is this mercy and grace that knows when we need the showstopper miracle and when we need to know the miracle of being held. He sees the end and knows far better that I do what I need. I suspect that His end for our story is far more creative and wonderful than mine.

We pray every day for God to give us what we want. A healed and whole Gideon. But we have also begun to pray for something more. For the first time in my life I can say and mean it to God that I want my son healed and I want this pain to go away. “But more than that God, I want to be as near to your presence as I can be.” Whatever that means. So will my son not be healed because I haven’t said God WILL heal him and instead say God please do…but I will trust you even if you don’t?

If in the end, I am with Him, close to Him, I think I will be like Job, put rightly in his place after chapters of presenting what he would argue to God, and just stand in awe as those questions fade to dust and I just get lost in his presence. Job only heard God from a cloud. Someday we will see him face to face.


Anger, grief, suffering and healing have had the major run around in my brain this week. I’ll start with the easiest…when I am not so tired maybe I can remember the great insight I have had on the others…(note some sarcasm implied with “great insight”)

Anger is a secondary emotion. That is fancy pancy clinical speak for the fact that you feel angry because you feel something else. Sad, hurt, disappointed, confused, lost, lonely, embarrassed…it’s a huge list really. If you have ever worried with severely emotionally disturbed children (or adults I suppose) you know that anger is almost always the emotion they identify when they get themselves in trouble. Angry. So I teach about feelings a lot. I talk about feelings a lot. I deal in the business of feelings. Its fun.

Fun when they are other peoples feelings. The kids I work with often eventually figure out that really they like to feel angry. It often makes them feel powerful and safe. Anger is safer than sad or lost or confused because it isn’t vulnerable. Its easier and a lot less scary to be mad get aggressive when all your life you have had to be to protect yourself. I really don’t like to feel angry. I don’t like how out of control it feels, how powerless I feel when I am angry. I don’t like what I think and what I say when I am angry.

When you are in pain its hard to not lash out at people. My boss once said, explaining so much about the kids we work with, simply, “hurt people, hurt people”. And when you are hurting its so tempting to lash out at others.

Anger is an inescapable part of the grieving process. With God’s grace may it not result in more hurt people.

Ephesians 4:26 "In your anger do not sin"

one baby shower

Thoughts Saturday, March 20, 2010 at 2:57pm

Its been just over a week since we met with the geneticist at university hospital. I realized that if I wait until we have updates regarding Gideon it might be a while before we post. I have a sense we are not going to get much news about his little self for a while. My next appointment at university hospital is Monday the 29th and that is just a regular check up. I don’t have any ultrasounds schedule for a while. I guess they figure at this point they know all they need to know and nothing is going to change.

David and I visited his sister and her husband yesterday in Gurnee. We had a great time and it was nice to get away, but hard to tell them the news. I was thinking about how when we first got the news that something was wrong, when they were saying he would likely be delayed but they didn’t know how much, how that would be good news now.

There has been a lot on my mind this week. I have had good days, and really bad days. On one hand it would be nice to have internet at home so I could give more recent and immediate updates on my thoughts, on the other, time has a nice ways a censoring my extreme and often dangerous foot in mouth syndrome.

I am afraid that though this process I have given an impression that I am handling this very well.

I’m not.

Wednesday I cried so much I had a snot trail hanging from my nose and I didn’t even care. I don’t know that I have cried in my life so much, and so hard, and so unrestrained as I have in the past few months and weeks. I have learned what it means to sob, to cry out to God in ways that perhaps in the past I would have been too proud to be able to do. This has been a humbling journey for me. I am humbled by the faith and the prayers of those around me. I am confronted with how much I have to depend on God. My faith is week, but my God is strong.

I had my first and only baby shower today. I was so wonderful just being with this group of people. My neighbors that have become family. People who have been in my life for as long as I have memory of life. But I feel guilty accepting gifts. We planned to go ahead and have one shower before we realized just out bad the medical prognosis was and decided it would be nice to have one “normal” pregnant event. I really just want to be with some people who I don’t get so see a lot and who make me laugh. I am thankful for today, for their support and compassion as I am thankful for all the support poured out on David and me. I think I will buy a car seat. Its up to God if we will need it in may or somewhere down the road.

Wednesday, September 1, 2010

update 3.13.10 (warning it’s a long one)

Three doctor’s appointments kept us busy yesterday. Two fairly routine, a regular check in with my OB here in town which keeps us from having to go up to the city every two weeks, and the other my ninth ultrasound in the past six months of my let to double check and make sure the asymmetrical swollen preggers feet wasn’t something more nefarious than my poor posture or baby putting the pressure on my left leg.

The third, an appointment with a geneticist and brain malformation specialist at university hospital. It was not an appointment we were looking forward to. Though not a meeting filled with good news, it was a meeting filled with compassion. The doctor shared with us that he and his wife lost a baby at birth. He reviewed the MRI images and clearly articulated and showed us what lead him to his conclusion, comparing our son’s brain images with that of a normal child. Between David’s biology major and my recent trainings at work regarding trauma and the brain we were able to follow what he said pretty well. I can’t promise I will be able to explain it so great.

He noted that though the images were blurry he can still see enough to identify what he believes to be an accurate diagnosis. It is a very rare disorder called Aprosencephaly. He noted that we could look it up but there is very little research regarding this condition because it is so rare. Gideon’s brain does not have important structures that are vital in the correct formation of the brain. Ventricles are fluid filled spaces in the brain where the fluid that protects and bathes the brain is made. They also create the pressure to push the rest of the brain structures and form correctly during brain development. A genetic goof has very early on prevented Gideon’s brain from forming. The microcephaly is secondary, it is a result of the abnormalities in the brain.

The only good news from this unexpected pre-natal diagnosis is that is very unlikely to be a recessive trait disorder. Our chances of having healthy, normal babies in the future are as good as anyone out there.

At this point in time his brain stem appears to be functional. The brain stem regulates the very basic life functions, breathing, and heart rate. That stuff.

This has several implications. There are several possibilities when Gideon is born should God’s decision for his life not be one of miraculous healing. One possible outcome is that he will be born and with in minutes not be able to breath. That he will be able to breath on his own but over the next few hours or days develop apnea as his underdeveloped brain is unable to provide the information the body needs to function. That he could come home from the hospital with us and live from a few months to nearly a year before his brain simply cannot provide the information his body needs to survive and he will die either from an apnea (trouble regulation breathing) or not be able to swallow and regulate basis bodily functions. This doctor predicts that it is very, very unlikely that Gideon will see his first birthday.

And so we face some very difficult decisions. Fortunately the doctor informed us that legally we don’t have to worry about allowing the Lord to take Gideon home by not instituting extreme medical procedures. But morally and ethically what to do is a lot grayer. The miracle of modern medicine doesn’t come with a handy instruction manual when it should and should not be used. How will we know if we should let him go or fight for him with all that medicine can offer. As the doctor said, we can keep anything alive but we are left with the question, is it right, is it humane, is it God’s will and desire that we should do so?

David could not have said it better. “I don’t want to get in the way of God doing a miracle, but I don’t want to try to do it for him either” so I will carry Gideon to term. For two more months he will be safe in my body, I will provide for him and protect him while I can. But when he arrives will I be able to make the best decision for him or will I be seduced by my selfishness and hold on when I should let go, or let go when I should hold on?

We can only pray and hope that those are decisions we will not have to make. That God’s power will be revealed in that delivery room though healing. Though we know that is power will be revealed through his grace and peace no mater what the outcome.

As David and I make these difficult decisions we covet your prayers. There are many who will have strong opinions about the decision we make. Please understand that David and I will make decisions about the intensity of medical interventions we will utilize through a great deal of prayer and hoping and believing that these are back up decisions because of the wonders God can show us in the end. Ultimately we will be obedient to God and trust that our support team will join us in prayer with us and continue to offer compassion and love as we face these trials.

Thank you for being a part of this journey with us. It’s not over yet, and we will not see this news as final. We will continue to trust in God for all he has for us. And as Angie Smith, wife of Selah singer Todd Smith reminded in her blog, my prayer is most of all that God will bring those things into my life that will make the soil rich for his love to grow. That I will not simply pray for sunshine but for what will make my life a place where God and be glorified. Even if that is rain. Thank you Amanda for helping me find Angie’s blog and for sharing your story with me. To know that I am not alone offers immeasurable comfort during what is so far the darkest time I can recall in my life. Thank you all for helping me to believe the light at the end of the tunnel is not a train after all.