Unscientific Poll on Children’s Health

http://searchourhearts.wordpress.com/poll/

This poll is unscientific and meaningless because the data is only as good as the feedback we get from those who decide to answer the questions.  There is no control group, no adjustment for population statistics, no way to verify data.

So why do it?

1. Appease our curiosity.  These are questions that parents of children with birth defects often ask themselves.  This gives us an opportunity to see what other parents have to say.

2. To see, in black and white, that parents of “normal” children have some of the same things in common with us and we didn’t cause the birth defect.

3. If (and that is a big IF) happen to stumble upon a common link, we may be able to share our results with much smarter researchers.

She's really gone

Madelyn is really dead.  I still don't believe it.  I'm learning that I have been working really hard to keep her alive - visiting her every day, working around the clock on things for her or CDH, telling strangers I have a baby and implying that she is at home, and so much more.

With everything I have, I am willing her alive.  And a few weeks ago, when my depression was at its strongest and I became suicidal, I was completely unable to accept that she is gone and not coming back.  If Maddie is gone, then everything I have done and felt since she died is not really about her - mostly it is about me.  And I think it is repulsive to make my child's death into something selfish and narcissistic.    But its true, at least somewhat true.

I don't think it is an all or nothing thing, but right now I don't know healthy grieving limits.  It is all consuming, hard work that is interfering with my day to day life and my ability to move forward.  I don't know how long this paralyzing phase is healthy for others, but for me, I need to move past this phase because it has become unhealthy.

I have to accept that Maddie is gone.  That it isn't my fault.  I can not change anything.  These three things are mountains I need to find a way to wrap my arms around.  Just now, typing that mountain line, I got this visual, only with a mountain instead of a globe:

I guess I'm saying that I am really making progress in my hospital program - learning a lot and identifying huge issues that need to be worked through.  But I am still very dependent on the program, my meds, my family, my friends and all of you.  The only way I will ever be able to see around these mountains is creating a "circle" around each mountain.  I feel frail and weak - like a deer on new legs.  

At first I was afraid, then I was petrified...

The thing about life is that you have to experience it to understand it.  It seems like such an obvious statement, but I often forget.  I fall into this pattern of thinking that I understand someone else's life, thoughts and feelings.  But I am most surprised when I think i know what to expect and things turn out totally different - much more intensive and profound then I ever imagined.

When I left home for West Point, everyone said it would be hard.  I didn't understand. I was smart, hardworking, in good physical shape and determined - how hard could it be? It wasn't until I started to experience the extreme amount of daily stress and pressure, the complete loss of personal space and time, the constant demands and homesickness (oh I missed my mommy!) that I started to understand.

Same with going oversees for OEF and OIF.  Again, it wasn't until I lived in constant mortal fear for myself and my soldiers (not just from attacks - mostly from the day to day stresses that cause suicide and mental breakdowns), until I watched families fall apart during the deployment, and careers end because of bad personal decisions that I started to understand that war changes people forever.

Then I got married and everyone talked about how hard marriage is.  We were in love and it wasn't hard to spend 24/7 together, how hard could it be?  Learning self-sacrifice, patience, obedience (oh yeah, I said that - a conversation for later), shared- goal making...well you get the picture.  Then came kids.  It truly does fundamentally change you to be 100% responsible for someone else's everything.  Food, water, exercise, security, stability, spirituality, education...again, you get it.  The most profound change with having kids is structuring your day to accommodate their minute by minute needs and happiness.  Kids are why there are drive throughs - you get hungry when your kid falls asleep in the car and you hate the thought of waking them up to get food because you are so hungry you are dizzy....but i digress.

Even though I have had bouts of depression and have been no stranger to mental illness, I had no idea.  You know the commericial "Who does depression hurt - everyone".  That didn't make sense to me.  I could control my depression and make sure (so I thought) it wasn't hurting anyone else.  

About a year ago, I had a great conversation with another West Point Grad/Stay at home mom.  We laughed about how we could led hundreds of soldiers and millions worth of equipment through downtown Baghdad but were brought to our knees by toddlers who refused to potty train and take scheduled naps.  This is normal.  Every parent (whether or not they've been to Iraq) experiences failure.  

But depression, at least for me, is not being able to get past the failures.  It is my mind telling me that I am a huge failure as a parent, will always be and am damaging my family by even being here.  After a while, my mind gets so loud that I can not try anymore.  I can not push it aside and accomplish even the most simple things because the war is my head is so intense that I am exhausted and defeated and have failed even before I try.  And when you live like that, you can't simple grow out of it, man up or hope it goes away.  It is insidious.  An out of control weed.

My therapy systematically starts to translate the things in my head (and there are millions of damning statements) so I can give voice to them and figure out for myself if I am going to chose to believe them. But I have to pinpoint each thought and break them down completely.  I have to own the truth.  And I have to eliminate each of these statements, because the continuation of even one will spread and grow out of control.  

My therapy also involved figuring out if and how my neurons are misfiring and if my hormones are raging.  Medication helps control these things so I can actually make my mind work hard enough to examine myself.  

Yesterday someone in group shared that they were told that Therapy was a bunch of rich white people sitting around bitching about their problems and they should all just move on.  And maybe that is true for some groups.  But there is heartache and ruined lives in my group being rebuilt.  And i want to rebuild my life.  I want to be brought to my knees by normal things, not everything.  

I wish I were me

Well, we are keeping our chins up.  And working on hard to find good reasons to laugh.  I am still pretty freaking hilarious. 

Today was my first day of the partial hospitalization program.  I think it will be a good program overall but expect to have good days and bad days.

A few years ago I helped a friend check into rehab for drugs and alcohol.  Over 48 hours, I got a crash course in insurance, rehab programs, recovery options, disability and all of the in and outs that go along with an entirely new world.  It was hard work - medically, financially and logistically speaking - work that my friend later admitted that he would never have been able to do on his own.  Work that his family wasn't capable of doing at the time.  Work that, left undone, would have prevented him from successfully completing rehab (still sober by the way).  At that time, in that moment, I was the only one who could do what he needed done.

Sometimes I wish I were me so that I had someone to take care of me that way.  On the surface, i'm basically a full time working mom right now.  Thousands of full time moms are perfectly capable of being awesome at work and coming home and being awesome at home.  These past few weeks, as my depression has increased, so has the number of tasks and appointments (and babysitters) needed to get me into a mental health program that will actually help me deal with this crisis.  There have been roadblocks, overlong appointments, medication request denied and so much more. 

But i'm not me and i don't have me to take care of me.  Everything that has needed to happen has happened.  I am in the program and things are getting taken care of - medically, financially and logistically speaking.  Even broken as I am, I can still move small mountains when I need to.

I am not whining.  Again, I am writing to the unknown someone who may some day read this.  To the someone whose child has died (or is sick) and overnight, their wife is a different woman.  She needs your help.  She needs you to make the calls, arrange child care and make dinner.  She needs you to decrease her load, even though it is unfair and you already do so much.  She needs you to trust that some day she will be able to do it again, but only if you help her help herself.

Maddie's Memorial Garden - Phase 1

Today mom, dillan, some neighborhood kids and I spent the day cleaning up part of the yard and starting a memorial garden for Maddie.  I have to say my absolutely favorite is her bird bath - it looks like aged brass and is etched with various flowers and birds.

I need to buy more bark.  And i left enough room for others to add plants when they come to visit (hint hint).  My mom is going to add a cute little kid's bench we spotted at a garden shop in PG and also a vine plant (after we paint the house).  Eventually there will also be a plaque or mosaic or something with her name and dates.  What you see are 2 butterfly bushes, 5 cyclamens (2 pink, 2 white, 1 red), and a blue eyed fuschia.   Getting a visual yet?

Special thanks and shameless plug for Seaside Garden Center for donating the flower plants. 

Random Acts of Kindness

Thank you so much for the outpouring of love and support.  Things are very tough for us all right now and will continue to be for some time to come, but we are all working hard to get to a place where life can move forward.

Also, thank you for the poem contributions (not to late - see previous post!).  I have another assignment for you, if you are willing.

This Sunday at 7PM (your local time) please remember to light a candle for all of the children lost too soon.  Burn your candle for an hour and help create a world wide wave of light and love for our babies that aren't here this holiday season.  Luke, my parents and I are attending a candle lighting ceremony at UCSF.  I will write about if next week, maybe even post pictures.

In loving memory of Madelyn Erin Spence this holiday season, I am asking you to commit random acts of kindness.  To anyone, for any reason (especially awesome if you commit a random act of kindness to someone in your family).  Here are some simple ideas:


- pay for someones coffee behind me in the drive thru
- hold a door open for someone
- tape quarters to kids gumball machines
- send a card to someone out of the blue
- buy a few extra items for a charity
- yield a parking space in a busy lot

But please don't stop there.  If you get thanked, look them straight in the eye and say "I did this in loving memory of Baby Maddie".  If they engage, briefly tell them her story, even directing them to our web site if you want.

But the best part (for me anyway) is going to be when you email me and tell me about it.  Just as I'm going with the "when i heard about your daughter" poem, I plan to take excerpts from your response and create some kid of short story or narrative or something. 

On a side note, i'm still waiting for an opening in the day program at the hospital.  it looks like i'm going to start next week. i don't know how much of the process i'm about to go through i will share here.

Hello Eeyore - Part 2

I don't want to write this blog.  I want to keep what I am going through right now private.  Already when I walk in a room, I am the woman who just lost her baby.  I fear that by sharing this, I will be the woman who lost her baby and then had a mental breakdown to everyone I know.  I don't want to be that woman, but it is the truth.

It has been a long week of doctor appointments, adjusting meds and making time to rest.  Lots of psycho-analysis and reflection.  We have been working our way up the least invasive medical path available.  Last night we made the decision that I need full time intensive treatment.  Our local hospital has a partial hospitalization .  its a 9 to 5, monday through friday program.  i could be there one week or for months.  This is the path I am hoping that my doctors and our insurance allow us to pursue next.

Each day for about 3 weeks I've slide further and further into a hole of despair and self-loathing.  I am full of anger and guilt and hate.  The details of all of this I will keep to myself for now (although I am willing to share if someone in a similar hell privately emails me) but on a very basic level, I am stuck trying to make sense of Maddie's illness and death. I do not have the coping mechanisms needed to work through the emotions that come with this journey.  Although I have a wonderful support system, I am very self-aware, I am properly medicated, I am resting, I am in counseling and I acknowledge that most of what I am feeling is completely illogical, i continue to slide deeper into this hole.

There are three treatments that we are pursuing right now to help me to feel better:  I've already mentioned the medication and the psycho-analysis.  The last is to test my hormones and see if they are out of whack.  What you are seeing unfold in front on your screen is a severe form of post-partum depression due to infant demise.  Hormones are likely are huge culprit in these overwhelming feelings.

To be clear, I am not in danger of hurting myself. No one around me is in danger.  But if i do not get help and find a way to move on, my marriage and my ability to parent, not to mention to be a daughter and a friend, are in grave danger.

I love the outpouring of support these blogs bring with them and I appreciate you reminding me of what a wonderful support system i really do have.  But I do not write for sympathy.  And I definitely do not write to exploit what happened to my family for attention.  Both of these things have been suggested.  I do write because its therapeutic to me.  And i definitely write because of the confidently emails I receive that say, thank you for writing that, I feel the same way but didn't have the words.

I wish I could just stuck this up and drive on.  I wish I could flip a switch and be better.  That I could stop my whining and get on with life.  I wish that I knew a why out of this that didn't involve trusting the care of my family to someone else for several weeks.  But I plan to get through this, to work hard at it and to emerge as my best self.

Collaborative Poetry

So I would like to try a little experiment.  I could give you a bunch of background and context but I'm going to try not to.  Luke always jokes that everything with me comes with directions and instructions.  Then no one follows them and I get mad.  So I'm going to try to skip the directions and let you decide how to proceed.

The idea is that I will post a phrase (kind of like 3 minute fiction on NPR) and you will write back the very first thing that comes to mind. Long or short, beginning, middle or end.  Rhyme or no.   Depending on how good this turns out (and if anyone actually participates), I will self-publish all of the poetry and make the books available to you to purchase (at cost or a slight markup for charity....dang it, starting to add too much context).

Here is our first phrase:

"When I heard about your daughter..."


And here is my first entry:

When I heard about your daughter, the glass fell and shattered on the linoleum.

Hello Eeyore

Eeyore. This is me.  A lot lately.  Well, not just lately.  Really since March 1, 2011 when Maddie was first diagnosed.  Everything is wrong, not that any cares, its my fault and it figures.

And I have to tell you, I'm starting to hate myself.  This is not me.  I'm a hopeless romantic and optimist.  I make people laugh and have the strength to help others when they need me.  I can take on really complicated, impossible tasks and do them better then anyone else.  I move and I shake.  Or at least, I use to.

For a long time now, probably longer then I care to admit but at least for several years, I haven't been these things.  I've made excuses.  I've rearranged my life to accommodate or hide my new "self".  I've accepted that things have changed, and I'm not as capable as I was and just lowered my expectations.

But what do you do when your expectations are already so low that you can't lower them anymore?  What do you do when your expectations of yourself aren't enough to get you through the day or take care of yourself or your family?  What do you do when you start to feel like friendships are starting to morph from valued relationships to obligated pity and drudgery?

Well, I've stopped the ride on my Pity Party and demanded to get off.  I've let me inner circle know that I need help and I'm at a breaking point.

There is a time to mourn.  There is a time to be pathetic and a victim and not care that nothing is getting done.  But at some time, these things have to exist simultaneously with progress and real life and love and fulfillment.  Life is a gift - i'm squandering mine in depression and forcing Dillan and Luke to join me.

In the world of bereaved CDH parents, many of them are pregnant again, trying to get pregnant or already holding their beautiful angel babies.  This is wonderful news and I'm so happy for them.  But this means they aren't on anti-depressants.  It means that there are people capable of living in a world in which their child has died without the help of drugs.  These people are moving forward, making plans for the future while working through their grief.

Right now, I'm not one of those people.  I am stuck.  I am severely depressed and guilty and angry and helpless.  I have asked for help.  Tomorrow I will go see an intake counselor.  In spite to my medication, therapy sessions, doctor appointments and wonderful support network, I am not healing.   I am open to whatever they suggest, even if that means checking myself into an intensive inpatient program.

I have support.  We have a plan and I have help.  I share this because I feel like I'm the only one in the CDH community who has ever gone through this.  Who is still so broken 4 months after saying goodbye.  But I know I'm not.  I hope this post will give someone else the courage to connect with me and let me know they have been here and they healed.  I hope this post will help someone else know they are not alone and maybe one day, they can see that I've healed.

I no longer want to be Eeyore.  I just want to be me again.

Merry Christmas Maddie!

Walking Through the Valley of the Shadow of Death

I think it's not overly melodramatic to state that I feel I've been walking through the valley of the shadow of death since we first found out Maddie was sick (March 1, 2011).  That was just about 9 months ago.

I've learned that this is a very long, wide valley. There are lots of hills along the way and ever time I think I am coming out of the valley, I realize it was just another hill and I am are headed back in.  The valley is hard to walk through, slow going and incredibly lonely.  Sometimes I briefly, even repeatedly, meet others walking through the valley and walk beside them.  Sometimes they carry me for a bit, and sometimes I carry them or we drag each other a few feet. But for the most part, I walk alone.

The amazing thing about walking through the valley is that at some point I became aware of the fact that I am walking on a well worn path.  There are others ahead of me and too many behind.

What really humbles and astounds  me is the goodness of our nature.  For some reason, it is on our nature to leave directions to others while experiencing new paths.  Road signs, helpful hints, rest areas, etc.

I am so deeply thankful to the CDH families ahead of me in the valley.  For sharing their stories and educating me.  For following our story and praying with us.  For sobbing when Madelyn died and remembering to check in every so often.  CDH Moms are the reason we have support organizations like Breath of Hope, Project Sweet Peas, and CHERUBS.  And so many more.

These moms looked behind them and saw me and said, I can help her.  And they did.  That they had the empathy and energy to do something for me is humbling.  That they somehow got far enough through the valley to look behind them and care gives me hope - one day the shadow of death won't be so dark and heavy over my life.

My friend Aubin Bryant has started to look back and see other CDH families.  Her son, Liam and my daughter, Maddie we're bunk mates at UCSF.  Our families became (and remain) very close.  It was Aubin and another great friend who helped us pack up and head home the night Maddie died.  They even cleaned our room at the Ronald McDonald house so we wouldn't have to worry about it.

Liam is very much alive today and has overcome so many complications associated with his CDH.  His struggle and Maddie's short life have inspired Aubin to reach out.  She has started an organization, Feathers of Hope.  Her goal is to reach out to other CDH families by sending them homemade cards.  Cards of encouragement, support and solidarity.  I think her efforts are beautiful.  I half think she's crazy because I also know how busy she already is.  But for the most part, it's beautiful.

I hope you are able to find a small way to support her, even if you don't personally know a CHERUB.

Playing with God

In the past few months I have not been shy about the fact that I am disappointed in God.  So disappointed that I have often felt that He can not exist, does not love me, or is not a diety who is actually involved in our lives.  And I still cycle through these feelings on my bad days.  But I am having fewer bad days and continue to put a lot of effort into my "grief work".  I feel as if there is a healing happening, although I am not now, nor do I ever expect to be, healed from Maddie's death.

I have read many books, articles, interviews, and blogs these past months.  I have spent countless hours chatting, talking, writing and thinking about all of the hurt in this world and how it is possible that my God could allow any of it to happen.  This morning is my first real breakthrough after all of this hard work and I plan to share it as best as I can.

I finally came to the conclusion (with the help of CS Lewis) that i did not know my God at all and it was time to start over in our relationship.  Time to challenge some of the common and modern Christian notions (especially the ones that never sat well with me) and tear them down only to rebuild my relationship in stone.  If you have been a regular reader of my blog, you have heard all of this before.

I am not going to spend too much time putting everything into context.  If you feel like you need more context, I suggest you read a Grief Observed by CS Lewis and Tracks of a Fellow Struggler by John Claypool.  If you are not a Christian reading this, I hope my words will help remove some of the resentments you must have against us.  And if you are a believer, I do hope I don't offend but also challenge you to explore your own relationship with God on a deeper and new level.  I will try to remain true to biblical principles (although I admit my understanding is still weak) and not to blaspheme (although this may be a matter of perspective).

There are several modern and common Christian "truths" that I am going to call out now.  I believe they are false.  Not lies, but not complete truths - a term I learned a lot about at West Point - equivocation. I don't pretend to have any complete truths either, but do hope to stumble my way closer to the "truth". I will list them now and then address them one by one.

1. We are called to worship God without ceasing.
2. Without God, we are sentenced to eternal damnation.
3. Anything that separates us from God is sin.
4. We need Jesus for our salvation.
5. We are called to mold ourselves into His likeness so that we witness and spread the light.  This is what the commandments are all about.
6. The bible and prayer are the only ways to know God.
7. you have to go to church
8. Why is there evil?  Why did all of that stuff happen in the Old testament?
9. What did Maddie die?


Hang with me my friends.  One ancient and common truth is that we are God's children.  This I wholeheartedly agree with.  I also believe wholeheartedly that life is a gift from God.

Time to debunk some of the above half-truths:
1. We are called to worship God without ceasing.
I often give gifts to the children I love.  And nothing makes me happier then to see them play with my gifts as if it is the most wonderful thing they have ever encountered.  I recently gave Dillan a small leapfrog computer and he spends hours on it every day.  He tells everyone he meets about his new computer.  It makes my heart sing.

Life is our gift from God.  We are to treat it with gratitude. We are to maintain it, indulge it and love it.  Just as it is hard to watch a group of children laughing and playing tag without smiling, it should be impossible for us to fully live our lives without our heart singing out to God in thanks. 

The idea that God would create millions of people to sit around all day and remind him of His wonderful and great and powerful character is lame.  I image Luke's godson following me around all day worshiping and mimicking me.  I imagine it would take about 2 hours before he was on a plane back to the east coast with a note that said "never again".

But now imagine God in heaven watching all of his children loving this wonderful gift he's given us.  Laughing, sharing it with one another, working together to fix it when it breaks, finding new ways to love life.  That is a God i can relate to.  That is a God i can understand and love.

2. Without God, we are sentenced to eternal damnation. 
Being without God is like a child who never plays.  This child isn't damned.  But as a parent, I know that play is an essential part of my relationship with Dillan.  It is something I greatly mourn in Maddie's life.  There is not necessarily damnation without God, but you do miss out on this one very important and amazing part of life. Just as Dillan may not be in a mood in which we are able to play together, I would never forsake him for it.  I would just wait until he is ready again.  As many times as necessary and however long it takes.

3. Anything that separates us from God is sin.
Just as I don't have the luxury of playing happily with Dillan for hours on end, neither does God have the luxury of watching me fully live life 24/7.  Sometimes, I'm just not that into my gift.  Sometimes I abuse it.  Sometimes I purposefully break it or try to break someone else's gift.  Sometimes I take it for granted, forget about it in my closet or throw a fit when my gift isn't doing more then I want.  These things are sin my friends.  Sin is when we stop loving life, stop appreciating our gift from God or think others have better gifts then us.  These things may separate us from God as well. 

4. We need Jesus for our salvation.
I love my dad.  He is a great dad and a wonderful grandpa.  But he is also a single man in his mid-50s.  He does not regularly play with small children.  But when he comes to my house, he plays non-stop with Dillan and all of our little playmates.  He gets down on the floor, creates new games, laughs and has the patience of a saint.  Without Dillan, this kind of play with a stranger's child would not be possible without it being really weird and probably inappropriate.  Jesus is this bridge for each of us.  By making friends with God's only begotten son, we can play nonstop with His father without any barriers.   If we chose not to be friends with Jesus, we inhibit our ability to play with God and, again, fail to fully appreciate the gift of that is life.

5. We are called to mold ourselves into His likeness so that we witness and spread the light.  This is what the commandments are all about.
I can think of nothing I want more in this world then for Dillan to grow up and remind me of Luke.  I married a great man and would be proud to have Dillan emulate him.  The same is true of God.  We learn his character and seek his ways because he has set an example for us that will help us be kind, loving, well rounded people.  That will help us learn to love our gift and play with Him with gratitude.  The greatest commandant - to love God above all others and to love our neighbor as ourselves - is all about playing nicely.  Most of my favorite memories of friends and family involve playing for hours and being silly, laughing like loons.  Having enough in common and understanding how to best interact with one another allows for this kind of fun. 

6. The bible and prayer are the only ways to know God.
Imagine if I called you every morning and we talked about the exact same thing at the exact same time.  And we finished each call with me telling you everything that needed to change in the world and expecting you to spend the day fixing it.  then i said a quick "i love you bye" and hung up.  That would not be fun, would not be a friendship and would quickly turn into a toxic relationship filled with disappointment on both sides.  This is how most Christians spend their quiet time with God, at least as far as I know.

Every night, my son crawls into my arms and we read stories together.  He asks me a million questions and I do my best to answer them.  This is why we read the bible and pray.  To crawl into his lap and rest for a while.  to learn what it feels like to have his arms around us, smell his smell, learn his breathing and read his stories.  We learn more about him this way and him about us.  We can ask him a million question and he will do his best to answer them.  We can squirm and drift off and turn the pages too soon.  We can whisper silly things to Him or tell him about our day once the books are done and we are cuddling in the dark.  We can just feel his arms around us and feel safe.  In addition to play, this is how children bond with their parents.  He gives us His word and the power of prayer to be close to him, to be vulnerable with him.  But these are not the exclusive ways to spend time with him. 

7. You have to go to church
You don't.  But church (and it maybe a church you have yet to find) is a weekly family reunion.  It is where we can all come together and play with God and our siblings, including Jesus.  It is where we find experts to help us fix our gift of life when we break it.  It is where we become experts to help others (not just within the church family) that need help fixing their broken lives.

8. Why is there evil?  Why did all of that stuff happen in the Old testament?
I don't know. "There is a more honest faith in an act of questioning than in the act of silent submission, for implicit in the very asking is the faith that some light can be given" (Tracks of a Fellow Struggler by John Claypool).

So many things in our history are nonsensical, both small and large. The crusades, the holocaust, disease, murder, hang nails, and stubbed toes.  Without God, not only are we not able to play with him and fully enjoy this gift of life, but horrific things exist along side miraculous things for no purpose.  All is just random and luck and chance.  No silver lining, no cause, no light.

But with God, I can ask why. I can ask why all day every day and know that I honor Him by asking and that one day there will be an accounting for these things.

"I am really honoring God when I come clean and say, "You owe me an explanation." For, you see, I believe God will be able to give such an accounting when all of the facts are in, and until then, it is valid to ask" (Claypool again, I love this guy).

9. What did Maddie die?

I don't know.  But I do know that babies with Congenital Diaphragmatic Hernia were not meant for this life and that any of them survive past delivery is a miracle of modern medicine (a fact I firmly believe has God's handy work all over it).  So each minute of the 34 days with her was a miracle.  Each moment of our pregnancy with her is a miracle.  She is a gift from God.  Dillan is a gift from God.  And not necessarily gifts from Him to me and Luke.  That is part of the truth and I don't know the rest of it yet.  But their lives are Gifts directly from God to them.  Much different gifts, enjoyed by them in much different ways.  I will spend the rest of my life learning about their gifts as well as my own.

I take great comfort in the fact that every moment of Maddie's gift was full of unconditional love and devotion.  I can't say that is true of Dillan's life, even though he is so young.  But Maddie never knew a moment separated from the watchful eyes and loving care of her family and her medical team.  That fills my heart with such joy and gratitude.

I will close with this final idea.  For the most part, I am relearning  God primarily through analogies.  I have always thought, learned and understood most things through either direct experience or through analogies. You have to live life to understand analogies.  The more fully you live life, the more analogies you understand.  I believe God does this on purpose.

"What God was trying to teach...throughout his whole existence was the basic understanding that life is a gift - pure, simple, sheer gift - and that we here on earth are to relate to it accordingly." (you guessed it, Claypool again.)

Make me eat cat food?

so in a moment of pure spontaneity, I promised my college friend Erika, that I would eat 9 cans of 9 lives cat food if she and her blog fans could collect 500 signatures for the petition to pass the CDH research bill. Not my finest moment and one of those bets I really hope I win, but at the same time, really hope I don't too.

Check out Erika's page here: https://www.facebook.com/BloomingWellness

Sign the petition here: http://www.change.org/petitions/to-increase-research-to-save-1600-babies-born-each-year-with-congenital-diaphragmatic-hernia

I'll keep you updated and if it happens, I will post the video here before making public on You Tube.


(Erika isn't completely nuts or exploiting me. Her original question is what amount of $$$ would it take you to eat 9 cans of 9 lives. The rest is my idea to help our Babies.)

Stay Tuned.

I wish I was a Baller

There is a catchy song in which the rapper laments how short he is saying he wishes he was a baller. wishes he was taller. wishes he had a girl who looked good so he could call her. i'm not really sure what the rest of the song says (don't google it grandma!). Doesn't really matter. Just trying to set the tone of this blog so you get interested enough to read.

i've begun to accept Maddie's death as a reality. I spend fewer and fewer moments of my life praying and begging for God to reverse time or completely replicate her DNA and put her back in my womb. I haven't heard her phantom cries or expected a call from UCSF admitting it was an elaborate hoax for a while now. I miss her daily and am still mourning all of the details of the life she has not been living. But somehow, I'm beginning to make peace with her death. Emerging (maybe only for a minute) from the great darkness that has enveloped me for months.

But I wish I was a Baller. Ok, not really. But i do wish I was an artist. It makes me sad that there will be no more pictures of Maddie. And that there are details of her face that my untrained eye doesn't recognize as uniquely hers. I wish I had the talent to learn the exact bow of her lips and arch of her bow so that I could draw or paint or sculpt it. So there would be more of Maddie. More angels. More shading. More expressions. More everything. Explore her face without the tubes. Draw her with and without dimples (don't know if she had them). Put to paper what my mind's eye sees when I imagine her with hair and smiles. Pigtails. Scraped knees. Sheet wrinkles on her cheek just after she wakes up. Things that never were, but could be if i had the time and the talent.

I also wish I could write. Not my blog. I love writing my blog and based on some of your feedback, you love reading what I have to say (probably because you are crazy). But i wish I could do with Madelyn's life what Gregory Maguire did with Oz. What Christopher Moore did with Jesus's life. I wish i could take a story so familiar, but view it from a new angel. Create a world in which Madelyn still lives and grows. Fight all of the fights we would have had. Meet the man she would have married and imagine the grandchildren she would have given me. Add depth to her "character" and meaning to the life she would have lived. I wish i could write fiction in a way that would allow me to bring her to life for a few moments at a time, even if it is all fantasy.

I wish i had some kind of musical talent so i could create something incredibly simplistic yet beautiful in her memory. Something that would move the masses to cry and long and love all at the same time. Something that would inspire you to reach out and hold the hand of who ever is near.

But there are things we cannot change. I am an extrovert with just enough literary talent to share my heart on this blog without fear or apology. I am incredibly pragmatic and unable to imagine too much of a fantasy world. I cannot form a complete image of a world in which Madelyn still lives and breaths and grows, despite me wanting that more then anything in the world. I am a wife struggling to remember how to love her husband the way he deserves. I am a mother trying to balance my grief and duties. Trying to parent in a way that will not pressure my child to feel as if he has to make up for what we lost with Maddie.

I have also accepted that my relationship with God is a life long journey and have found some peace by calling a temporary truce with him. I have not denounced my faith, nor has it been renewed. But i recognize that much of my understanding of God and his character were like a house made of sticks, and then came a storm. So now I am determined to very carefully rebuild my understanding of God brick by painful brick. But i will not rush it or cut corners. And if that means I have to walk blindly for a while, I am ok with that. (and i'm really mixing metaphors here, hopefully i make a little bit of sense to someone out there).

It hurts. and i'm still sad. tears are so commonplace now that i rarely bother to wipe them away. but we (my family) are starting to emerge.

Jamie got a Maddie Tattoo

Our entire lives our mom has asked us to promise two things: never start smoking and never get tattoos. I'm happy to report that my brother, sister and I are all cigarette free. However, Madelyn's diagnosis, life and death have been a game changer for the whole family. Yesterday I sent this text to my brother "Right now your baby sister is getting a tattoo while your mom watches" Mom went a step further and even helped pay for Jamie's "Ink".

Needless to say, I am touched by my sister's love and devotion to my children. She is an amazing Aunt and Godmother and Sister and Best Friend. She has been so strong and courageous, allowing me to be weak and raw for the first time in my life. I love her and I love her new Tattoo.

Luke, Jamie and Lisa all show off their Madelyn Tattoos

Matching Madelyn Tattoos

Where's the Resentment?

Several other parents, two with CDH survivors and one with a beautiful healthy baby girl 2 days older then Maddie, have asked me if I resent them. They've all asked it with varying degrees of sensitivity and concern and astonishment. And I get that. During my pregnancy with Dillan, two of my girlfriends lost their first babies. We were all due about the same time. I was heartbroken for them, completely without words and very aware that my son would be a reminder of what they didn't have. And i shamefully admit I distanced myself from them out of fear of my own inabilities.

But I find I don't feel that way, at least not in the way people expect. Yes, I do see little girls and little babies and pregnant women and think, what if? Yes, little things set me off when I mourn something else that we didn't get to share with Maddie. And yes, most definitely, there are times when I actively avoid being around small babies because it just feels like too much.

But I have not once resented any baby. Side note - Parents are another matter, but that has more to do with dumb things said and done. Back to not resenting your kids. I think the biggest reason I still am so in love with every baby i get to meet and make faces at them in the grocery store is because i've always been a mom at heart. My sister was my real life doll until she got loud enough to tell me how much she hated it. I started babysitting - practically full time - before high school. I've always been more comfortable in social situations hanging out at the kid's table. I've loved my kids long before I found my amazing husband and love my kids even more now that I've gotten to share them with him. Children represent everything right in this world for me.

Another reason I'm not resentful is because I do not feel like God had a quota. It isn't a one for one kind of thing - if Maddie had lived I don't think another baby would have had to die in her place. So while I am reminded through your joy of some of our losses, I don't feel like our losses are your gains.

Finally, I also feel like I have a realistic idea of what it is to have a newborn, a toddler, a child, to raise. And while I miss Madelyn so much, I am not missing a perfect baby. I am missing a baby who would have pooped on me. Vomited. Spit. Yelled. Fought. Had tons of doctors appointments. Missing the entire baby, not just the parts I would've have taken pictures of, keeps me grounded. Helps me remember that sharing in your child's life is not all joy all of the time. But it is what I want.

Last night I had a dream in which I was holding a newborn. My newborn. A son. We had named him Nathaniel James. My friend was with me in the dream and based on the age of her kids (1 year old Belle was 3 or 4 years old), it was several years from now. The dream felt so real. So peaceful. So complete. As much as Maddie will always be a part of me, of us, and can never be replaced, I really long for the day when I get to try again. When Maddie becomes a big sister. When Dillan gets to fully embrace being a big brother. When Luke holds another of our children from the first time and I watch the tears well in his eyes and my heart breaks with joy. it will come, but not tomorrow (or even next year realistically).

I have a pile of books to read - all previously read by loved ones and sworn to help me glean something as I walk through this darkness. But I tend to prioritize reading books suggested by other bereaved parents. I also tend to prioritize books I can read on the kindle (man, I love that little thing!). today i started reading Tracks of a Fellow Struggler by John Claypool. I'm only about 20 pages into it, but already want to recommend it to everyone I know (lets face it, you'll eventually deal with some kind of grief even if your babies are all happy and healthy). Its a collection of sermons written by Claypool in the days, months and years following his daughter's diagnosis of Leukemia. She passed away at 10 years old. Claypool is/was a Baptist minister and starts his first sermon by asking a lot of the same really big questions i've been asking. Again, I'm at the beginning, but have been tempted to post more then one of his insights into grief.

i think often of the feel of Maddie's skin. The few cute little noises we heard her make. Her lips. The feel of her hair. The pads on the bottom of her toes. I miss it all. She was real. She is loved. I still struggle daily to accept that she is gone. Physically, I have two little blood stains and a small lock of her hair. That's it. Can you imagine? Please imagine - seriously. Look at your child and try to imagine which 34 days out of their entire lives would be enough. Which lock of hair off of the beautiful head would be enough? Try to count how many times you would need to kiss them, squeeze them, touch them in order to say goodbye? which moment of their life would you lock away in your minds eye - your "go-to" memory of them? God, I pray you never have to. if you already have, I'm so sorry.

so many of you have already done so much for us, i don't know how my family would have functioned without you. no show of support or love has gone unnoticed or unappreciated (despite the lack of thank you cards that I really hope to one day write and mail out).

I'm rambling. and i ate 3/4 of a pints of ben and jerry's while writing this - good for the soul, lousy on the saddle bags. thank you for continuing to support us.

Entertainment Therapy

I'm not sure if I have shared this publicly before or not, but I have a history of depression. Looking back, I can clearly see the times in my past when a depressive episode has ruled my world. I never really accepted it (who wants to claim a sickness that no one can see, diagnosis or deal with? just makes you a victim right?) until after I returned from Iraq and had some pretty intense PTSD. My PTSD mostly presented itself as rage or depression or self-destructive behavior, so I spent quite some time really mad, really sad or really drunk. Eventually I went on medication, started therapy and got both the PTSD and depression to a manageable place. (as a side note - i rarely drink anymore either)

Then Maddie got diagnosed. By the time she was born, my motivation to engage with the world in any way (except as it related to helping Maddie) was gone. By the time she was two weeks old, the uncontrollable rage had returned. But what do you do with rage when you are sitting in an NICU 12 hours a day? I use to hope that someone would honk at me as I limped across the crosswalk in front of the hospital - that way I could very loudly, maybe even physically, explain to them that there are sick people around hospitals and it takes more time to cross the street after you've just had major surgery. Never happened though. In the days before Maddie died, I had made appointments to start seeing therapist and figure out a way to safely medicate the depression/rage/PTSD away while still being able to produce usable breastmilk. I had joined the gym at UCSF so that I could start finding outlets for my energy.

after Maddie died, I spent the first few weeks unmedicated. I needed to feel my grief and it was ok to be completely immersed in it because we had so much help. I've been back on anti-depressants. I will be on them for a while, especially since I can barely function most days even with them. I still grieve, but its not constant and I am able to do the things my family needs me to do, even if I don't do anything as well as I use to.

So one of my doctors has "prescribed" entertainment therapy. Basically, I force myself to engage in "normal" behavior that I would have really enjoyed before Maddie died. I've taken this prescription pretty seriously and put it to use every chance i get. Most days, this just means a walk on the beach, playing at the park, or vegging out in front of the tv. It also means hours playing reasoning games on my Kindle, reading and naps. Cuddling with Dillan and dakota. Not calling anyone out of obligation, even if I still love them with all of my heart. This last week we had an impromptu girls night. last night after bible study, we talked about farting for 45 minutes and laughed so hard Bekka almost peed her pants.

The way I feel after doing something I enjoy so much last for a while, but not long enough to get me through the day. And then I still have reality. So most nights, by 10 or 11 at night, I'm lost and a lonely and beating myself up with everything I suddenly cannot manage to accomplish. I miss Maddie so much I want to die and hurt all over, like some kind of acid has been injected into my veins while my organs have all tied in knots. then i sleep, some nights better then others, and i wake up and figure out what i can do that day that will make me feel just a little bit better for just a little while and hope that Dillan will go along with whatever i have in mind for the day.

last night at bible study, our assistant pastor came and held a Q&A session with us. our bible study group is really close - they are my family. and as such, they have all suffered horrific heartbreak over Maddie's death right along with us. we warned Ro ahead of time that we would be cynical and hostile and mad. And he came and was vulnerable and honest, even if sometimes I got lost in his answers. But three things really stuck out from our conversation.

1. The first circles back to a thought I've been having a lot lately. That the only life as important as Maddie's is Dillan's life. And as I ask God and myself why Maddie suffered through her 34 days only to die, my answer is Dillan. We were meant to have Maddie as our daughter. We were meant to love her and hold her and share a lifetime with her. We just assumed it would be our lifetimes, not hers. But if Maddie had lived our lifetimes, Dillan (and any future children) would have had his life dramatically altered, perhaps in a way that would have cuased all of us more guilt and more grief over the years then even Maddie's death has and will cause.

2. Ro shared a story about a local woman who lost a baby and, in her healing, started an organization that helps troubled pregnant women. Although I'm sure she would rather have her baby, she feels as though God has given her thousands of babies and sisters through her work. Ro talked about the blessings God has in store for us. Right now, any blessing that positions itself as if to say Maddie's death was necessary is an insult. But I hold onto to hope that one day I will find myself in the midst of a blessing that would not have been otherwise and that I will be able to embrace it. Even though I would rather have Maddie and no other blessing for the rest of my life.

3. Heaven (which I have never really doubted because every fiber of my being knows that Maddie's soul is still alive and that I will one day be reunited with her) is infinite. It has no beginning, it has no present, it has no end, no tomorrow or yesterday. And Maddie is in Heaven~Ok, stay with me, here comes some circular, faith based logic bound to drive some of you crazy~And if i believe in Heaven and if I believe that I am going to Heaven and if I believe that Heaven has no timetable, then Maddie has never been separated from me. I may feel separated from her, but she has her entire family in Heaven already. She already has us and she knows her mommy and her daddy and her brother. She is playing with us right now. She has never known a moment without us because we held her as her eyes closed here and we were already there when she "opened" her eyes in heaven (yes i get the logically flaw and that by this reasoning, she has never left heaven either. but there is a beautiful narrative and a beautiful pictures that this reasoning allows my heart to embrace my daughter in a way i haven't been able to before. so you aren't allowed to look for all of the flaws in what i know to be imperfect reasoning.)

These thought doesn't relieve my grief. They don't bring me peace or make me feel better. They don't really even help me stop doubting God and his ways. But they do start to provide a context, a way to start logically organizing things in my head that I think will eventually help me move forward. When I look at my family, including my extended family, and when I look at myself, I still see all of the pain and heartbreak and longing. But I see growth from a month ago. I see healing, even though it is just a hair's breath compared to the brokenness we all feel.

Please continue to support us - most moms says that they were months were after the first 6 months. Please continue to pray for the Williams family - their baby Levi died on Friday. Please continue to pray for Maddie's NICU buddy Liam who is back in the hospital and stumping all of the doctors. Please start praying for Jessika whose baby Rowan will be born in 3 weeks with CDH. Rowan has a much grimmer prognosis then Madelyn ever had and will have a long hard fight.

Pregnancy and Infant Loss Remembrance Day

Tomorrow, October 15th is Pregnancy and Infant Loss Remembrance Day. At 7PM is the International Wave of Light. Where ever you are tomorrow at 7PM, please light a candle for Madelyn, our family and all of the other families who have lost a baby.

The International Wave of Light invites participants from around the world to light a candle, starting at 1900 hours on October 15 in their respective time zones, and to leave the candle burning for at least an hour. The result is a continuous chain of light spanning the globe for a 24 hour period in honor and remembrance of the children who die during pregnancy or shortly after birth

life and death decisions

Maddie's NICU Buddy Liam is back in the hospital and may be facing additional surgeries.  Maddie and Liam spent 24 days side by side in the NICU.  Our families grew close, our toddlers became friends.  Please consider making a donation to his family as they continue to fight and prevail in their CDH battle: Donations for Liam

Early after we were diagnosed, someone told me that I may have to make some really hard decisions in order to avoid making even harder decision later.  i've watched about 50 other families on their CDH journey struggle with the same decisions we made.  And universally, each family has made the best decision for their baby and for their family. For some this meant aggressive medical care at all cost.  For some this meant conservative care, some choose to let nature take its course and some choose termination.  And in each case, it is clear to me that the parents know their baby and their family the best and are making the right decision.  They know exactly how hard and how long to fight, even though we all have doubts along the way.  The parents with growing CDH babies seem to be wonderfully equipped at meeting their family's needs.  The parents who lost their babies seem to be working toward peace and acceptance.


I recently read a book called "Loving and Letting Go: For Parents Who Decided to Turn Away from Aggressive Medical Intervention for Their Critically Ill Newborns."  It is the opposite of a "right to life" book and talks extensively about how sometimes the most loving and merciful decision a parent can make is to prevent or release their child from suffering.  The author quotes a neonatalogist as saying "If God gives you a baby but takes away the heart, lungs, brain or kidneys, maybe He's trying to tell you something".  

At first reading quote, I was really offended.  It seems too crass, too honest, too confrontational to be compassionate.    I was looking for affirmation that we had made the right decision when we took Maddie off of support, some kind of comfort.  And here was this expert saying we never had a chance.  


But as I finished the book and thought about this quote over the past couple of weeks, I realize that this offensive quote is very affirming.  We did give Maddie the best chance at life considering what we knew during each stage of her development.  And when there was no longer a chance at life, we let her go.  


But in reality, Maddie could have "lived" longer.  We had additional medical options that could have kept her heart beating and blood circulating.  She would have been in pain, unable to be held, constantly sedated.  If she had ever come off of life support (slim chance but who knows) she would have had severe mental retardation that would have affected every aspect of her development.  She probably would have been on dialysis for most of her life.  In and out of the hospital.  Sick or sicker, but never healthy.  She may have needed a trach tube in order to breath.  Likely would have needed medical assistance her whole life to eat.  There are many parents raising children with all of these complications, if not more, and despite the demands of care, they love their child and considering them a blessing and a joy.  

The term "life" is a bit subjective.  Many people, including western medicine, talk about life as a heart beat and a pulse.  And I disagree.  Without brain function, without any hope of consciousness, happiness, sorrow, love, independent thought, free will, the ability to thrive and interact there is no life.  A body and a pulse do not make a life.  I held a body and a pulse in my arms and Maddie was no longer there.  



I would like to think that I would have risen to the challenge if our journey had taken a different road.  But, we never had to see Maddie go through anything as extensive and invasive as what I describe above - and I have to be honest, I'm relieved.  


I wish every moment of every day that my little girl was still alive.  That I could just hold her one more time.  Just see her or touch her or smell her or whisper in her ear.  I want her more then I want my next breath.  But I feel relieved she isn't still struggling for every breath she takes.  I'm relieved I don't resent my daughter for taking over my life, our lives, our family, because her care demands so much.  I'm relieved that Dillan isn't going to live in the shadow of his sister's illness.  I'm relieved we aren't fighting so hard for life that we are causing Maddie prolonged suffering.

She is my angel baby and there is a hole in my heart and things will never be ok again.  But she is at peace - the turmoil and suffering are mine.  And as her mommy, if she can't be at peace alive, I am thankful to be the one suffering her death.

I’m a Stinky Poopy S$&t Head

Ok, so the title of this blog is suppose to make you laugh. I read that people are more open to supporting you during your grief if you make them laugh every so often. The same book also said that oscillating between grief and happiness will make my "healing" more healthy and well rounded. So we’ll see if there is any truth in that.

But I am a stinky poopy s$&t head, at least some of the time. I don’t sleep well anymore and in my groggy middle of the night reflections, I remember some things with surprising clarity. Last night I was thinking about when some friends of our lost their baby. And I prayed with them. And I said everything wrong. I said all of the things that make me want to punch someone in the face now when they say them to me. Things like "we know this is your will" and "she won’t be suffering anymore" and other things that I’ve previously posted about. Because even though I sometimes think those things and can grab onto a second of hope from them, it doesn’t help me to hear you say them. It helps me a lot more when you acknowledge how much this sucks and how unfair it is and that you don’t know why God would allow anything to happen to babies, especially to my baby. So thinking of what I prayed over my friends as their daughter lay dying a few feet away, I feel like a jerk.

I also have been wanting to write advice to other parents who are facing losing their child. As if anything I have to say can actually make the process of watching your baby die easier. Granted, there are things that we learned during and after Maddie’s death that I wish we had known before. But knowing these things may have made the grieving easier, not her death. Not living without her. Not imagining her as an active part of our lives every second - none of that gets easier.

I do know that if Faith and Love and Effort and Hope only could keep these babies alive, they would all live long happy lives. While all (normal) parents love their children in a way that is indescribable, I feel ok telling you that parents of sick children love them even more. There is little you take for granted or feel inconvenienced by when you know the alternative is death.

I have a theory that all children, at one point or another, need their parents to fight for them. Most children put us through this as teenagers or adults when they make stupid decisions and need their parents to help them out of it. And when your time comes to fight for your child, you have accept that you can’t control the outcomes, just how hard you fight. And that sucks. And when you lose the fight, even temporarily, and lose your child, even temporarily, you doubt everything you’ve ever believed. You distrust everything ever said and done. You agonize over every decision you’ve made. But somehow, you don’t stop fighting, you just find a way to change the rules of engagement and your expected outcomes. And for a while, it doesn’t suck as bad.

Ok, well I feel like I’m rambling. Plus I’m at my mother in laws house and she just finished making Pink cupcakes (henceforth referred to as Maddie Cupcakes) for Maddie’s 3 month birthday. I’m going to go gain a few more pounds in honor of my little girl.

Please remember to pray for Liam, Levi, Rowan and Memphis and all of the other CDH families.

Permanent Maddie Bracelet

Here is my second (and hopefully last) tattoo. the heart is inspired by the heart shape in her ear. The script is inspired by the "maddie" signs my brother made to decorate her isolette at the hospital. At some point, I think it will get the entire tattoo shaded in a pale pink or a lavender, but for now, i'm just going to get use to looking at it every day and remembering my girl.

Grief Support on Facebook

I just started a grief support group for CDH parents on facebook. Its a secret group (invite only). Please let me know if you want an invite or if you want to be an admin and invite others to join.

Grief Eaters

I feel compelled to keep writing. Today, not because I have much to share. But because 3 beautiful babies have died in the last 3 days and their mommies are hurting so much. Because, if you do the math, 100 babies in the US have died because of CDH since Maddie died. 100 babies have also survived this defect but still have mountains to overcome. Because I talk to these other mommies and learn from them and they say that they learn from me.



I’ve been thinking a lot about suffering and God and joy and faith. And I can accept that God has called my family to walk through this grief for His purposes. I can accept that I will heal and learn and hopefully, become a woman who isn’t so paralyzed by her sins. But I can’t accept that there is a purpose for Maddie’s suffering. I don’t know of anything that makes it ok for the innocent to suffer and then die. How is anything accomplished through this?



A wonderful CDH mom sent this article to me: http://www.irishtimes.com/newspaper/health/2011/0607/1224298494116.html#.Tn7JFTMJGdw



In the article, she talks about Grief Eaters, people who surround mourners and absorb some of their sorrow. I love this term (for more reasons then to obvious Harry Potter reference). I have been searching for it for weeks. I think i knew i needed Grief Eaters even before Maddie died. It was one of the reasons I was so confused when everyone offered to give me “space” I love my Grief Eaters! Everyone who comments on my posts, who pour their heart out over their own grief. Everyone who tries to make things better, knowing that they will fail miserably. Everyone that I have lashed out at over the past few weeks, in person and online and on the phone. Some of you deserved to be yelled at, but you still showed up to eat my grief.



There are days when i have enough reserve to be someone else’s grief eater and it feels good. Having not walked this road, you may think that taking on someone else’s burdens right now would be too much. But it gives me strength to know that i’m not entirely useless (despite my messy house and 3 straight days without leaving bed much at all). I do think it is important to know that my definition of suffering and burden have changed pretty dramatically over the past months. There are hardships, like being broke, losing a job and getting a bad hair cut. Losing a pet or the death of an acquaintance are harder hard ships. But suffering and burdens, those are all together different.



I’m reading A Grief Observed by CS Lewis. I recommend it just as it was recommended to me. Something that causes one to suffer is all consuming. There are no breaks from it while the suffering ensues. CS Lewis compares grief to losing a limb, somehow you learn to live a new life, but it different then before and the feeling of the missing limb never quite goes away. In fact, it still causes pain or itching. Even with a prosthetic, the limb never returns. I have never lost a limb, so I don’t know if this is altogether accurate but i do know that is how my grief feels. And when it comes, I can’t bear it alone and need my grief eaters.



Please remember the families of Baby Silas, Baby Nathaniel, and Baby Brayden today. I don’t know how the social ‘cliques’ in heaven form, but if there is a CDH playgroup, i look forward to the day when I get to hug all of these babies and whisper in their ears how much they are loved and missed as they play with my Maddie.

Reoperative Pediatric Surgery Text Book

Free text book on Google that discusses subsequent surgeries on CDH (chapter 6)and other types of babies. One of those things I wish I had read before we had Maddie.

The day Maddie died

There are several things about the day that Maddie died that I haven't shared publicly. 

Most obviously are pictures.  Luke and I have decided to keep all of her final pictures offline and share only with family and close friends.  These are the most intimate reminders we have of her final hours and just have not come to a place where it feels right to publish them.  But  I do want to let you know that we have a lot of pictures of her from August 7th and that I am so grateful to Now I Lay Me Down to Sleep for being there when we needed them most and providing us with these precious keepsakes.  Here is a shameless plug for the photographer who volunteered her services that night: http://www.photosbynano.com/

We also have a bunch of pictures of the funeral.  I asked a friend from work to document the day, knowing that it would be a blur and I would need pictures to remember.  He did a great job capturing not only the events of the day, but the emotions, special moments and relationships.  Here is a shameless plug for him: http://www.facebook.com/randyandronphotography

There are some burdens from Maddie's death that weigh heavily on my shoulders.  The night the PICC line started to leak, the night she failed her extubation, the night everything seemed to start spiraling out of control, was the first and only time Maddie had a nurse I did not trust.  I knew i didn't trust her by 9PM, but didn't ask for a new nurse until 11PM.  I stayed that night until 1AM.  She was/is a good nurse.  But she was very by the book, one thing at a time and easily distracted.  I knew Maddie was a complex little girl and needed someone who could multi-task, think about consequences and trust her own judgement.  This nurse was obsessing about how to set up Maddie's lines (IV, central and PICC) and charting.  She seemed unaware of the respiratory problems I was witnessing, unconcerned or even defensive when I pointed them out.  At one point, she completely left the room for about 2 minutes after having checked Maddie's breathing mask.  She didn't notice (and neither did I for about 60 seconds) that the mask came off when she checked it and Maddie was struggling to do all of the work on her own. 

Of course, the fact that she was obsessing about Maddie's lines turned out to be a good thing - I know she did her due diligence and the PICC line leak was not the result of flippant decisions.  And once I spoke to the charge nurse at 11PM, Maddie's bed became the center of wonderful team work with at least 1, usually 2 nurses that I did trust helping in her care.  When I left to go home, Maddie was stable, intubated and resting quietly.  But it is likely her PICC line had already leaked up to 80 cc of TPN into her chest and I didn't notice either.  I'm her mommy and I didn't know something was so wrong when I went to sleep that night.

I was able to discuss most of my concerns the next day with our favorite neonatalogist and one of our favorite nurses.  Both of them felt confident that nothing I had been bothered by the night before contributing to Maddie's ongoing problems. 

I don't blame this nurse (or anyone at UCSF for that matter) for anything that happened to Maddie.  The staff at UCSF truly was phenomenal and even a bad nurse there is a great nurse elsewhere.  But I do wonder if another nurse would have pushed to reintubated earlier in the evening.  If another nurse would have noticed the leak sooner, taken different actions, done something to change the course of events.  Something that would not have allowed Maddie's little body to be pushed so far that she had nothing left to give.  Of course, these are questions that can never be answered but I have to work through in my grief in order to get to a place of acceptance. 

The day Maddie died, I didn't get to the hospital until after 11AM.  I slept in.  Played with Dillan in the Ronald McDonald house playroom.  I think I even took time to shave my legs that morning.  Mom, Dillan and I were just dropping my brother off at the hospital before making a Target run when Luke called and told me to get there immediately.  I hadn't planned on going in until after 3 or 4 that afternoon.  I just didn't know how much ground she had lost.  I had no idea how bad things really had gotten and that we were mere hours away from making the worst decisions of our lives.

We had the opportunity to do more for Maddie.  We could have put her on ECMO (life support).  But we were cautioned she may never come off of it and that her brain damage was already pretty severe.  Placing her on ECMO at that point would have been considered "Medical Heroics." Defeated, we accepted this and made the decision to let her go.  Now, I constantly wonder how bad the brain damage really was.  Was it complete?  Would she just be blind, maybe a little slow?  Would she have had any quality of life worth living if we had done ECMO?  Would a few days on ECMO have been enough for her to flush our the TPN on her own, recover from the pneumonia and start fighting her way back toward health?  We never even asked about dialysis once they told us her kidneys were gone.  Would that have helped?  Questions I didn't have the sense to ask the doctors, but probably would still wonder about if I had. 

As she was dying in our arms, for a moment she opened her eyes and moved a little.  I can't remember exactly if she moved a hand or yawned or cried, but i remember her showing some signs of life.  In what may have been her last moments of consciousness, her mommy didn't tell her it was ok and that I love her.  I burst into tears and told her that she wasn't making it any easier.  She had been in a medical coma since Saturday morning and these two things happened as the medication started to wear off.  It wasn't until weeks later, when reading about the death of another precious baby, that I realized we never checked to see if she was still in there.  We didn't test her reflexes or open her eyes to see if her pupils dilated. We didn't ask for a brain scan or ultrasound to see how much activity was still taking place.

I am left constantly wondering if we gave her enough of a chance to fight for herself.  If we really did all that we could to give her every chance to live. 

So I go back to the pictures.  They remind me how far gone she really was that day.  How ravaged her little body was by the time she died.  That she really was a different baby, clearly sick, clearly exhausted, clearly dying.  That as much I as torture myself with these what ifs and should ofs and how comes, there really were no other options.  That we could have done more to sustain her body, but that Maddie was already gone, never to return.

There is more I need to say, but I am now exhausted.  It will all have to wait until my mind can form what is left into words that my fingers can type.

Crisis? of faith

Again, another hard post to write.  Something I’m not sure how to say.  not sure how to put out there but need to share.  In 2005, I was “born again”.  Learned to love Jesus.  Started to walk the holy path of righteousness.  What ever you want to call it, you get the idea.  And those of you who have walked with me before then and since then can attest to the fact that my life and my behavior, probably including my fundamental nature, changed dramatically.  My salvation was so complete and so powerful that I have had very few moments where I doubted my faith.  God made his presence known so strongly then that I could no more deny his existence then I could deny that i have two big toes.  Until now.

Doubting God, lacking faith, being shook up...all normal after such a huge loss.  And, if any of you are still doubters, losing a child is the biggest and hardest loss anyone can ever experience.  And i really appreciate all of the prayers and encouragement, even from those of you who regularly say the stupidest things.

But here is the cold hard truth, almost everything I have learned about God in the past 6 years rings false right now, in this moment.  So if I continue to believe, I have to relearn my God and my understanding of him.  Perhaps this will bring me to a deeper relationship, more mature, a better person, a better Christian...who knows?  Perhaps I will learn that God does not exist and its all been a fallacy.  Every moment that I thought was real, every time i felt i heard his voice and was lead toward his will, a figment of my imagination.  I don’t know.

but i do know that i have decided to not walk through this “crisis” in silence.  I will not hide my doubts, my anger.  If you choose to follow me, you are not allowed to read my words and say “see, i told you there is no god” because i don’t have the wisdom to bring you to that conclusion.  and you are not allowed to read my blog and decided to love god simply because i have, that makes you stupid.  and you definitely are not allowed to throw cliches at me meant to “encourage me in my walk”.  please share your personal experiences.  please share with me the meanderings of your heart and your mind.  please share with me actual, Biblical wisdom, theology, background, context.

so right now, in my socks and sweats and this dog hair covered couch, i don’t understand how  a loving and merciful God can exist in a world where beautiful babies die in their parents’ arms.  in that same world where sick parents intentionally hurt or even kill their babies.   again, those of you who know me know that a few things have been true about me since i was a very small child. and the biggest truth is that i have always wanted to be a mom.  and i don’t understand how its possible that i was created with this heart for children, this very specific love for my children, that i have had since i was a very small child but still have my daughter ripped from my life.  given this horrible defect, given some hope and then, shes gone.

cause the things is, no matter how much God understands my pain and weeps besides me, he had a choice.  He chose to let his only begotten son die for all of his millions of nonbegotten (is that a word?) children.  As any (normal, healthy, stable) parent will tell you, they will do anything to keep their children safe. There is nothing I would not freely give for my children, including my salvation.  Madelyn and Dillan are it for me.  There is nothing more important in any world.  I didn’t have a choice.  I wasn’t allowed to die so that Maddie could live.  I wasn’t allowed to do anything except sit there and pray for a miracle that never came and i don’t understand why.

So here i sit trying to come to terms with her death.  Trying to understand the Christian belief that everyone has a purpose and God has his reasons.  And I have to say, it all feels like crap.  Perhaps his purpose for Maddie was to use my words to further his kingdom (took the words right out of your mouth huh?).  Well, la da dee.  Maddie was more then that to me.  And maybe one day, i’ll be better, stronger, wiser, whatever.  Keep it and give me her.  any silver lining, any positive that i can possibly imagine coming from her death pales in comparison to the reality of her alive.  all of the outcomes are less then Madelyn Erin Spence.

Perhaps his reasons are too big and complex for me to understand here on this earth - well, try me.  Break me with it God.  Put the whole weight of it on my shoulders because nothing can be bigger or harder to carry around then the grief of watching my beautiful baby fight so hard just to die.

I”m trying to understand how she is whole and healthy and happy in Heaven.  And i really do find great comfort in that image.  BUt even Jesus needed his earthly mother for 33 years before he had completed his purposes to serve at God’s right hand.  Jesus still needed to spend some time on this earth.

none of it makes sense.  none of it is ok.  there is no peace.  i am constantly tormented.  the world mocks me and my empty arms.  So where is God?  where is my unshakable faith?  what the hell are any of us suppose to do in a world where babies can die and everything you thought you knew can vanish in a moment?

The Money Blog

i’ve been wanting to talk about the financial impact of Madelyn’s illness and death but i’ve been hesitating quite a bit. One reason I’ve hesitated is that I don’t want to seem like I’m hinting that we need money and trying to pull heart strings to get some. We are doing ok, even with all i’m about to share. another reason is because it is pretty taboo to talk openly about personal finances. But i think that with everything else i have shared openly on my blog, money is the least intimate.

The big reason i want to write this is for the friends and families of other sick children who are following our blog. I want to give context to all of the fundraisers, loans and hard times that are left once a family finally comes home, with or without their baby.

Madelyn’s medical bills totaled close to $1.9 million. My medical bills, including all of my prenatal treatments were close to $100,000. We have good insurance, so our out of pocket is less then $5000, most of which will come out of our HSA.

Additional out of pocket expenses include about $4500 in living expenses while Madelyn was in the hospital. Hotel, travel, food, incidentals. This is on top of our normal mortgage and bills. This does not include all of the money that our friends and family spent in their support of us, but if it did, I image the total would be closer to $8000 or $9000.

Madelyn’s funeral expenses will end up being somewhere close to $4000 once we buy and install a headstone for her. And finally, Luke and I both took the summer off of work, losing about $11,000 in wages. I would have taken the summer off even if Maddie had been healthy, but I don’t make even a third of what Luke makes teaching over the summer.

Like I said, we are doing ok. We knew this was coming and we saved a substantial sum ahead of time. During Maddie’s life and right after her death, we received many generous donations which have helped more then I can say. All in all, we are fairly close to breaking even and hope to start saving again soon. We work daily to honor the intentions behind the donations and are not indulging in much that could be considered frivolous (except maybe an occasional starbucks and my new tattoo).

I think about some of the people I have met through CDH and know that their expenses are comparable to ours, but they didn’t have a chance to save ahead of time. They do not have the support network we have. They still have very sick children who will continue to be expensive for years to come. They ran their own business, were in school or lost their job, completely losing any income they had before their child was born. They are also very modest and humble and grateful for what they do have and would never ask for more.

I think about how I thought of long illnesses before Maddie came and assumed that people just meant medical expenses when they talked about the financial burden. And I assumed that insurance would cover most of that financial burden. It’s hard to imagine how “living” within the confines of a hospital can be so expensive day to day.

I want to close with this: if you are a friend or family member of another sick child, please throw yourself into supporting them. I know you are doing it emotionally. Maybe physically. But if they hold a fundraiser, do more then show up to support them. Dig deep and do without for a while to help them make ends meet. If they aren’t throwing a fundraiser, consider organizing one for them.

Assimilating Maddie

Figuring out how to include Madelyn in our family, even though she is not physically with us, is a part of this grieving process. I’ve read that several times. I’ve heard it from all of my doctors and confidants. She has a place in our family and finding out where and what that is will help us to think of her without our hearts breaking. We will one day be able to embrace all of the moments where her life was pure joy and not be so overwhelmed by the hurt. At least that is the plan even if it is not where we are now.

I think that I’ve felt that I need to separate Maddie from her CDH in order to include her in our lives going forward. I often said during my pregnancy that I wasn’t going to let CDH define her life. That we would walk the CDH road and then, hopefully, get to a point where we could put it aside and just let her define herself. But I’m realizing that she was here such a short time and that her illness was such a big part of her life, that there is no separating the two. To mourn her is to mourn our brief home in the ICN. Our short friendships with the medical staff. Taking care of her involved some diaper changing and holding, but also involved hours of research, testing and immersing ourselves into a medical culture that would help us make the best decisions for her. We are slowly having to let all of that go.

Madelyn had her own life, her own spirit, her own body, all of which were, and will forever be defined by CDH - at least on some level. We know she was feisty and she was a fighter by all of the things she was able to overcome and pull through. We know she was alert and curious. We know she wanted to be loved and touched and demanded to be the center of attention. She was able to show us all of this through her illness, because of CDH, not in spite of it.

So I have to learn to process that. To really accept that there will be few times where I can remember Maddie and not remember the tubes, wires, sounds and smells of the hospital and that is ok. That it is ok for us to remember her exactly as she was and how she lived and not have to focus on the hard parts. If it were me, I wouldn’t want my last heartbreaking moments to stand out more then all of the wonderful, cherish-able moments.

I’m still struggling to figure out every day things. Yesterday I sent a birthday card and decided to include Madelyn in the signature block. I don’t know if I’ll always do that, but it felt right just then. I’m also rehearsing my answer for the first time someone ask me how many children I have or if someone asks me how my baby is doing. Although I don’t have the perfect words yet, I have a few scenarios and each time I run through them, the panic subsides a little bit.

i’m also writing for myself now. Well, technically, I’m writing to Maddie, for Maddie, about Maddie. And although I don’t edit myself much when I blog, i find that my tone is different when I write to her. Both methods are therapeutic, but my letters to Maddie are much more impulsive and abstract, disjointed. Although we still feel the love and support from everyone, the overwhelming display of it stopped about 10 days ago (3 weeks after she died). Incidentally, this is also when my milk dried up and when I started to feel like other people where silently begging me to stop talking about her and grieving so publicly. This last part may or may not be true, but my private journal has given me a place to expend all of that emotional energy without having to think about how it’s being perceived.

This morning was my postpartum check up with my regular OB. Without using as many words as he did, he was able to confirm what I already knew in my heart - we will be ready for more children physically before we are ready emotionally. He does not feel that we will need to manage my subsequent pregnancies as if they are high risks, although we will do more testing then a normal pregnancy just to reassure us all. He also doesn’t feel the need to put a limit on how many more c-sections i can have. We aren’t sure about how many more, if any, biologically kids we will actually have. But knowing that we aren’t limited, medically speaking, is reassuring in and of itself.

So I image when we feel like we aren’t just surviving any more, when the grief isn’t so big it takes up our whole world, when we can remember Maddie without falling apart and when we are strong enough to face another pregnancy and all of the associated risks of any pregnancy, we’ll start talking about having more kids. I don’t know if that will be 6 months or 6 years, but probably washing a sink full of dishes without melting down is a milestone that i will have to reach first.

This morning I sent off paper work requesting all of our level 2 ultrasounds, all of Maddie’s chest x-rays and her complete medical record. I also sent off paperwork to the milk bank authorizing them to donate all of the milk i pumped for Maddie to an ICN. Both of these things help me to validate her life. The records are something tangible and official I can hold. I can pour over and remember every day of her life. The milk proves to me that she had a life worth living and worth fighting for, and now, another baby will benefit from her life. Will grow and thrive.