The Next Year

This morning I ran into an old friend at Starbucks.  I haven’t seen him in a while and I could tell he was really uncomfortable.  Yep, he’s heard the rumors.  Luke and I have filed for divorce and he had no idea what to say.

And that’s ok.  It’s been a tough couple of years at the Spence home and coming face to face with one of us unexpectedly is bound to throw you off of your game for a moment.  Ask about Dillan – the kid is a rock star and we love to brag about him.

So here is what the world needs to know:

-       Luke and I are committed to co-parenting Dillan.  This decision is in all of our best interests, but especially Dillan’s.  He deserves to be raised in a healthy home full of love and support and encouragement.  Having two homes is the best way for us to give this to him.

-       The details of how we got to this point are none of your business.  Sorry.  Don’t ask and don’t gossip about us.  Those that are closest to us have chosen to support our decision, not speculate and judge. 

-       Our marriage is not “another causality of CDH.”  Every marriage has a mix of good and bad.  The events of the past 2 years and the way we have both adapted to these challenges have fundamentally changed both of us.  In the end, we didn’t have enough good left to give to each other and need to start new lives apart.

For those going through hard times, those with sick children or insurmountable grief, I am an open book to you.  I will share the lessons that I’ve learned these last years and offer whatever support I can to help you and yours make the right decisions for your family.  But not on this blog.  Please email me or find me on facebook.

This next year will be another time of transition, adjustment, growth and learning.  I don’t know where it will lead us, but I do know that we will all be ok even if tougher days are still ahead.

Hair Ballad Heart

This month, I’ve been rediscovering music. I know that sounds weird to some of you – many of my friends are music junkies.  But between becoming a NPR junkie and Dillan’s desire to listen to kid songs, I kind of just stopped listening to music a few years ago. 

15 years ago, a friend of mine gave me a copy of the Beach Boy’s “Pet Sounds”.  It is one of his favorite CDs and in his words “it sounds like what it feels like to live”.  To this day it is one of my favorite CDs.

But I am a hair band rocker at heart.  The Beach Boys do a lot for my soul, but the fact that Mike Love didn’t spend the 80s with heavy black eye liner and supporting the aerosol hairspray industry leaves me a bit empty inside.

I’ve decided to create a play list of Hair Band Ballads that sounds like what it feels like to have lived my life this past year and where I hope Dillan and I are heading this next year.  My own personal Pet Sounds.  Enjoy the flashback.

GnR – Sweet child of mine

Extreme – More than words

Warrant - Heaven

Poison – Every Rose has it’s thorn

White Snake – Here I Go Again

Queensryche - Silent Lucidity

INXS – Don’t Change

The Kinks – Better Things

The Beatles – Getting Better (ok, not a hair band, but totally valid)

What to Expect When You Don’t Get What You Were Expecting

 We are now about fourteen months out from Maddie’s death.  I want to say that I sit here with some clarity and growth.  Maybe even with some encouragement. I do not.

What I do have is a first-hand understanding of Maslow’s hierarchy of needs and a few bits of advice that may save someone from making the mistake I’ve made. 

Maslow’s hierarchy of needs is the psychological theory that I have adopted to makes sense of life this past year. It is not a perfect theory, but it works for my analytical brain and it affirms all of my self-serving biases.



Courtesy of Wikipedia



In its most basic form, Maslow’s theory states that we derive all motivation in life from the bottom 4 levels of the pyramid.  Those that are lucky enough to achieve self-actualization (level 5) are overall healthier and more fulfilled. Those that suffer a significant lack of needs fulfillment from the bottom levels experience anxiety and tension.  Getting “stuck” at one of the bottom three levels causes emotional and social retardation.  Post-tsunami = level 1, Gandhi = level 5

When Madelyn died, I got stuck at the bottom level.  Most days, this is still where I focus 90% of my energy. This is in contrast to life before Maddie’s death – a period of 15 years or so in which I moved freely between all 5 levels of motivation.

When you lose your child or your child is critically ill, you will lose everything.  You will lose your morality, your creativity, your ability to problem solve, your self-esteem, your confidence, your respect, your faith, and your basic ability to function. You will lose your friends and your family and your ability to get out of bed in order to pee, poop and eat.  And even though you spend all day in bed, you will not sleep nor will you care about sex.

Your friends and family will visit you at the bottom level from time to time.  But no one, not even your spouse, will live here with you. You are alone.

I am sorry that you will experience anything this horrendous. However, I do want to offer some practical tips that may ease your journey.

1.       Fake it. You are stuck on Maslow’s bottom level. I get it. But no one else does.  They expect you to move freely between the bottom four levels and will treat you like a leper when you don’t. I’m proud of you for taking a shower today and dragging your ass to the grocery story – that took a lot of effort. Blurting out the whole story to the checker (I’m totally guilty of this) makes you bat shit crazy. Learn when you can live safely in the bottom level and when you can’t.  Then fake it. And forgive everyone else for not letting you be a bottom dweller.

2.       Find God.  I do not mean find a faith in God.  I mean, whatever your understanding of a higher power, choose an object that signifies God to you. I suggest a teddy bear.  When you need God, take him with you everywhere.  Cuddle him and hug him and talk to him and sleep with him.  When you are mad and God has abandoned you and your family, look that teddy bear right in the eyes and tell it to fuck off.  Then bury it in the closet and completely ignore it until you feel ready to sort things out.  Make no mistake; your child’s story will put you at war with God – maybe for the rest of your life.

3.       Get a Shrink.  If you are incredibly lucky, you have family and friends who will attempt to understand your journey.  They cannot and expecting them to is unfair. No matter how much they love us, they can only hear “I miss my baby” and “My husband doesn’t understand” so many times.  Get a shrink.  A shrink will understand.  A shrink won’t leave you.  A shrink will listen to the same story 500 times and have new insight each time. A shrink will tell you what you need to hear, not what you want to hear, and make you feel good about yourself while doing it.  A shrink will tell you when it’s time to medicate. 

4.       Learn to say “This is What I Need”.  Most of the time, what you need is someone to clean your house, make you food and rock you like a baby.  Pride will prevent you from asking for this as much as you need it. Ask anyway.

5.       Make new friends.  Specifically, make Baby Loss Mom (BLM) friends.  Or moms with sick kids friends.  Moms that are walking in your shoes and who get it. Cherish these friendships and love these women with all that you have.  When your real friends and family go back to “real life” and you and your spouse inhabit different orbits, these ladies will often be your entire world. Email me.  I’ll be your first BLM friend.

6.       Honor your process.  You are shattered and broken.  Just when you feel like you’ve made some forward progress, something will knock you over.  Alternatively, when you feel like things cannot get worse, they will.  Be where you are today.  Draw inspiration from your BLMs and do what you need to do in order to get through the day.

7. Honor their process.  We live in America.  Most of our entire social circle will never know anything other than 1^st world problems.  If you want to be in a community of people that know how to suffer, you need to move to a 3^rd world country.  The relative insignificance of your friends' problems does not make your journey any more or less valid.

I have BLMs who are 20 or more years into their process.  Their pain is just as tangible, but they give me hope.  I will not stay stuck at level 1 and neither will you.  And one day, I will write a post full of clarity and growth and encouragement.



Why I Write

Recently, my therapist asked me what it would take to come out of this deep dark place. a desert island, with a slew of a servants, a sumo wrestler that i could regularly beat the shit out of, a nothing but free time to alternate between napping, grieving and writing.

But mostly it is about the writing.  When i started this blog, we were naive.  this was merely a means to keep our extended family and friends updated on "Baby J" and Dillan, our perfect little lives and shamelessly solicit some baby toys and clothes.

When we were diagnosed, I found myself hopelessly alone.  There are so many amazing mothers in the blogosphere, but i found it really difficult to find my heartache reflected in their writing.  There is a time for hope, there is a time for prayer and for joy and for not giving up.  But there is also a time for real, hard facts.  There is also a time to examine the dark twisty places.  By publicly sharing what i've learned about birth defects and infant death, without sugar coating, helps other moms.  Publicly sharing my worst moments, the darkest places that my mediocre writing can access, lets other moms know they are not alone.

So yes, much of what i write is hard to read.  Its a shitty place to be.  I understand that my story elicits a certain amount of sympathy.  empathy maybe.  from some, pity.  but as much as i am a narcissistic, attention seeking head case, I don't write to garner more support.  If you knew my family, my friends, my own sense of self worth, you would also know what an amazing support network i have.

i write because knowing that you aren't crazy and that you aren't alone is a priceless gift when your world falls apart.  my grief eaters  (http://sandyspencebabies.blogspot.com/2011/09/grief-eaters.html) have served and continue to serve that purpose well.  and i receive so many emails from other moms, all at various places in this journey, all of whom appreciate my unique ability to be precise and even rude, when sharing the details of this train wreck.

there are a lot of people i wish i could block from reading what i write. my colleagues.  my students.  my future employers.  everyone whose has had the audacity to be an asshole this past year to me and my family.  but then i would risk failing to be there for the one person who i truly want to reach - me a year ago.

i need to write because i need to know that when parallel me looses everything, she can find me.  she can reach out to me.  She can know she has a friend.

Parallel Me

Somewhere out there, there is a parallel me.  A Lisa whose hair doesn't frizz 5 seconds after straightening.  Whose has a style that consist of more then "the target sales rack".  She isn't still carrying 15 pounds of baby weight, swearing she's working on it - meanwhile she's oscillating between binges at the gym and Jack in the Box.  Her nails are manicured, her pores are small.  She isn't afraid to wear skirts, even on windy days.  She owns at least one pair of designer jeans and never wears granny panties.

She married the love of her life, has a challenging and fulfilling career and two beautiful children, with hope of more of the way.  She doesn't have any tattoos, let alone three memorial tattoos.  She can exchange more then two words with her husband without it dissolving into a rage filled power struggle.  She knows, generally speaking, what the next 5, 10, 15, or 20 years of her life will look like and isn't deeply depressed at the idea of living the suburban stereotype.  She stills believes she can change the world.

Her best friends call to talk politics or movies or whatever normal girls talk about.  Her phone never rings at 1 in the morning so she can spend 3 hours sobbing with a woman she's never met who just lost her child.

She goes to church and know that her God really does love her.  She is never overwhelmed by how much she really does want to believe in a merciful loving God who answers prayers, but is constantly reminded that he completely failed to listen while we prayed for Maddie and has since abandoned her completely.  She has no idea that he is mean and angry and heartless.  That even under grace, he is still the God of the old testament and is pouring forth a portion of his wrath, right now, on top of her head. (keep your rhetoric to yourself if you are tempted to respond to that one).

She is kind and giving and balanced.  She has no idea that the second year after a child's death is suppose to be much harder - there is no longer enough numbness or denial to hold onto.  Just a vast emptiness.  And she isn't struggling every day to figure out what can possibly fill that emptiness, meanwhile dragging everyone she loves along on a crazy heartbreaking train wreck that may not end well, if it ever does.

She does not suffer from depression or PTSD or existential crises.  She isn't being ironic when her FB post reads "fender bender today - worse day ever".

Or even if she isn't all of this, she knows she has Dillan and that should be enough.  And she isn't filled with gut-wrenching guilt that he isn't and she still needs more...from herself, from the world, from life.

I hate parallel me, but l also envy her so.  Simple stupid bitch.

Maddie's First Birthday

Here are some pictures of the Candle lighting ceremony
we held on Maddie's 1st birthday.  Click on the picture to
be redirected to the photo album.

Thank you to everyone who came out.

NICU Donation Drop

we received so many precious donations. Thank you. Some of the stuff from amazon didn't have a gift card, so i don't know who they came from. and i don't have my shit together enough to ever send thank you cards. but thank you. so much. Lisa Ellison, Sara Sparks, Nicole Miller, BaaBaaBlankies.com, Megan Skaggs, Jenell Costello Cline, Aubin Bryant, Doree Post, Aundrea Meadows Hudgens, all my Naked Babies, our families and so many more that i'm forgetting right now (oh crap, now this sounds like an acceptance award).


I will post more pictures when we have the donations washed and packaged and ready to go.  Then hopefully we will get a chance to take some pictures at the hospital tomorrow.

Brena and Lily helping get our donations ready

Candle Lighting for Maddie

All are welcome to a candle lighting ceremony to celebrate and remember the 1st birthday of Madelyn Erin Spence.

July 5th  2012  8pm at  Laguna Grand park, Seaside

Please bring poems, music, blessings and prayers to be shared during the ceremony.

Two more weeks!

Two more weeks until we celebrate Maddie's first birthday.  Even typing these words brings me such anguish.

Today I went to our foundation's new post office box.  I've been putting it off - scared there wouldn't be anything there.  Instead, it was packed out with small padded envelopes and large parcel pick up slips.  I cried.

And i continued to cry as they brought out box after box and helped me load them into my car.

Thank you for honoring Maddie's memory and helping us reach out to other NICU families.  I am not eloquent enough to really convey the healing power this baby shower is having on my heart.

Our first round of donations received

Book plates for all of the donated books

I wanted to share this note and video with all of you.  The note is from a mom who very recently lost her daughter.  The video was made by a mom who has held me up so much during the last year.  CDH is very real and i continue to interact with families profoundly affected by it daily.


As you know I didn't know about my daughter’s CDH and so I had the baby shower etc. Anyways, I received a gift card from a friend as a gift. That card was meant for a purpose and while it was meant for her, I want to do something special with it since I can't use it for my daughter. I'm going to put it in the mail tomorrow. I think its great what your doing in memory of Maddie. I didn't get that far with my daughter to know how it would be in the NICU away from your home, etc. So my hope is that a family will benefit.

http://www.youtube.com/watch?v=RpWOw0W9

Shhhhh....no one wants to hear about it

I've written about 50 blog post in the past months.  They all are still so full of anger and denial and self pity, i'm withheld from posting them.  I tell myself regularly that I should be past these phases - its time to start looking to our futures and accept Maddie's death.  To celebrate whatever small victories and successes we have.

To continue to share my deeper, darker and uglier emotions is likely to just make me sound pathetic and needy and hopeless.  And i've felt pathetic and needy and hopeless enough over the past year.  Seriously, how much longer can i be completely broken and still trust that anyone wants to be my friend?  how much support can I take, without giving anything back, and trust that i'm not using and abusing those that I love the most?

But I am angry and and I am pathetic and I am needy.  Between Maddie's diagnosis, her time in the hospital, my nervous breakdown and time in the hospital and now the strains on my family, I am completely broken again.  He hasn't said as much, but I assume Luke is fairly close to being completely broken again.  And our brokenness will indeed have a deep affect on Dillan.

I appreciate that so many of you still pray for us. Spending this long in the darkness, i've once again come to feel that its impossible that any of this is actually the will of a divine and loving God.  If anything, I'm living the midst of the divine retribution.  If I lived my life like Job, perhaps I could believe in being refined by the fire.  But I am no Job - I do not feel tested to prove my faith or learn of God's love and mercy (as so many of my grieving peers seem to embrace).  I feel summarily punished and judged and torn apart.

Luke and I are not having an easy time.  Google divorce after infant loss and you'll find a million statistics.  200 word essays that boil down a struggling and falling marriage, a world torn apart, to one or two liners.  Just as in having a sick child WHY DOES NO ONE SHARE ANY PRACTICAL EXPERIENCE?

Madelyn’s First Birthday - a Baby Shower/NICU Donation Drive

With Maddie’s first birthday just 7 weeks away, I am very tempted to crawl into a hole of depression and desperation.  I vividly remember this time last year, especially since my beautiful nephew, AJ, had just been born and I was starting to experience almost constant Braxton hicks contractions.


This is about the time last year when I had to start explaining to friends that we would not be having a baby shower for Maddie until she came home from the hospital.  This is about the time last year when I really had to start forcing people to recognize how sick my baby really was and that she very well would never be coming home from the hospital.  


It is time for Maddie's baby shower. But without the shower.  Ok, i’m really talking about the presents.  Lots of presents.  All of which will be donated on Maddie’s Birthday, July 5th, to the UCSF NICU.  



Ideally, everyone reading this note will be motivated to donate at least one item (unwrapped, new or gently used) from the list below. My family and friends will travel to UCSF on Maddie’s birthday and present the items to the NICU staff in Madelyn’s memory, followed by a commemorative dinner in the city.  Everyone available is welcomed to accompany us.



Ship items to:
The Madelyn Spence Foundation
PO Box 1245 
Seaside, CA 93955


Please ship items no later then June 30th so they arrive before July 3rd. 

Please keep in mind that the needs of the NICU family are much different then the needs of a “regular baby.”  Unless you are sensitive to these needs (based on experience), I encourage you to stick closely to this wish list.

• Visa or Mastercard gift cards.  (Most families suffer a financial 

burden while in the NICU.  UCSF has few chain restaurants and no big box stores within walking distance)

• Journals for mom and dad

• Umbrella Strollers

• Bumbo Chairs

• "Overnight" personal hygiene bags for moms and dads.  (toothbrush, toothpaste, comb, unscented soaps, shampoos, socks, etc.)

• Large, soft 

baby blankets, store bought or hand made.

• Hats, headbands, socks

• Leggings (this was something Maddie was fashionably famous for during

her life within the NICU)

• Mobiles and other crib attachments

• Breast-feeding pillows and pillow covers (boppies)

• Breast-feeding modesty covers (hooter hiders)

• Hand and foot print kits (ink is best, quick dry plaster is ok. 

anything that requires mixing and prolonged drying is out)

• Halo Sleep sacks/easy swaddlers

• Going home outfits (comfy and cute in sizes premie to 3 months)

• Burial outfits (not all families have access to these in their time of need)

• A copy of your favorite books or DVDs

• A copy of your toddler/preschoolers/kids favorite books or DVDs

• Arts and craft supplies (to help decorate the Isolates)

• Shutterfly or snapfish gift certificates

• Books for baby
 for parents to re-aloud to their babies, english and spanish (especially lullabies and nursery rhymes)

In other news, Maddie's headstone was placed.  It is beautiful and gut wrenching at the same time.  

Summer of Sisterhood

Lets face it - last summer sucked for me and my family - especially Dillan. He missed out on a lot of really fun things and even though my family and friends did their best, a child during summer near the beach in California deserves better.  

This is also the first summer in recent memory in which neither I nor any of my closest friends have infants or are pregnant (and huge).  

So I'm proposing a summer of Sisterhood. Every day something different.  Some days the beach, the pool or a hike.  Some days a trip to the children's museum, Gilroy Gardens or the water park.  Some days gather to do each other's housework and gardening (free up more time for crazy adventures).  But all focused on the idea that we will be enjoying our beautiful outdoors and be spending time together.

I would like to invite anyone reading this note to join us as the mood strikes.  Kids, dogs, cats, even the occasional husband, are all invited.  

Tomorrow we are at Brena's house to finish building her chicken coop and work in her garden.  Should be a beautiful day!

Ride Daddy Ride

In just 16 days Luke and our good friend Will, are riding 100 miles in the Sea Otter Classic.  This is our First Maddie's Mob official event.  We are busy training, making race gear and painting race support signs.   Should be a beautiful day and a great ride for them both.  Come on out and support them as they ride through beautiful Monterey County on April 21st.

It will also mark the unveiling of our official Maddie's Mob logo and web site.  The Madelyn Spence Foundation is officially a non-profit corporation in the state of California.  We are working on becoming federally recognized as a non-profit, establishing our non-profit bank account and finalizing our business plan.  All of these things will come and once they do, hopefully so will your support of time and donations!

We miss our baby girl so much but are blessed to have a focus that allows us to share her and honor memory by helping other families in need.

Trend CDH Babies #cdhbabies

March 31st and April 19th are both quickly approaching.  And they are both CDH awareness day.  We have two because we have more then one national support organization.  This is important to you because I'm going to teach you to use Twitter.

Twitter works by connecting people who update their 140 character status about whatever is on their mind.  Their updates are tracked and when enough people start talking about something, it becomes a "Trend".  Trends are followed by all major news outlets, celebrities, and thousands of average people just like me and you.  Major editorial decisions about what the world wide media will report that evening are often based off of trends.  It takes about 100,000 mentions to start a trend, depending on what is major news that day.

My vision is that #cdhbabies will become a top US 10 trend on March 31st and the top international trend of April 19th.  I am asking you to help by committing to post #cdhbabies on your twitter account at least once an hour throughout the day on March 31st.  We need 10,000 twitter accounts to do this for 12 hours to set a trend.  Obviously, posting more often will help.  Reposting this blog or your own version of it is going to be key to pulling this off.  preserving the hashmark: #cdhbabies is essential to making this work.  And having a Twitter account.  

See ideas listed below.

"personal statement"+"website or call to action"+"#cdhbabies"=Successful Twitter post

Examples:
 "I love my survivor.  See what you can do to help cdhsupport.com #cdhbabies"
"800 babies are lost each year.  Help stop CDH by reposting #cdhbabies"
"My daughter is a CDH angel.  Learn more about CDH http://www.breathofhopeinc.com/ #cdhbabies"

Knowing God

Months ago, I wrote about the Crisis of Faith this past year, especially Maddie's death, has caused in my life.  And I'm not sure it's completely over yet, but for the moment, my faith is restored.

Before you shout Amen or roll your eyes (just depends on your perspective), I want to stress that God and I have been working really hard on this together.  And the nature of my faith has changed - drastically - and will likely continue to evolve for years to come.

In reading CS Lewis book, A Grief Observed and Angie Smith's I Will Carry You, I was livid.  Both are wonderful books and a must read during your lifetime, even if you don't know intense grief yet.  But both authors refer to having a crisis of faith, both doubt God, both get mad at Him and both are restored.  What made me mad was that there was no story in their restoration.  They didn't explain or expound or give me anything of the logistics of their renewal in God and in their salvation.

I have tried to bridge that gap.  In this blog, in my conversations and in the book I have written in my head (but not put onto paper so don't get excited), I have tried to explain the hard parts that are usually skipped in narratives.  The parts that are hard to write, hard to read and hard to explain.  I may fail, but I try.

Unfortunately, I can't even try this time.  My faith literally came back in an instant.  It took years for me to start to consider myself a "follower" of Christ, months of crisis to lose my faith and months of living with doubt, no hope and an overly healthy sense of cynicism for me to just realize that God is here.

NOthing spectacular happened.  I suddenly just found that I could legitimately pray again.  I could hear God's word and nothing feel slighted by it.  I could sing the words of a praise song - and I mean sing.  It just happened.

I don't understand why Maddie lived and died like she did.  And i will continue to ask.  I don't know why God didn't answer our prayers with her but do recognize all of the hundreds of thousands of times my prayers have been answered, including during Maddie's life and since she passed.

My hope as I've searched for Jesus these past months is that if my faith came back, it would come back strong enough to stand.  I feel as though I have replaced a house of straw with a foundation of brick.  i have laid one, maybe two bricks upon that foundation but they are solid.

I know that a fair amount of my readers are staunch atheist and that is ok with me.  I firmly believe that if Jesus sought me (twice) and helped me believe in salvation (twice), that I'm either crazy or He is doing what He needs to do with you, even if you never call it faith or salvation or Christ.  It may just be your ingrained ability to love and a live a moral life.  Never the less, whatever you have going on spiritually or otherwise, I am open to so long as you continue to read with an open mind and heart and allow me to express myself honestly.

I know that a fair amount of my readers are very Christian and believe 99% of the dogma that comes with the territory.  And thats ok too.  I did, probably still do in a lot of ways I don't recognize.  I do ask that you take the time to be as the Berans and challenge yourself and your small group.  God does not answer all prayers, He does not work all things out for our good.  Questioning God, challenging Him, asking Him why do not hurt his feelings or cause Him to abandon us.  He does love us and He does work things out for His good.  Praying is about spending time with God and trying to align yourself with His heart and His will.  I have more to say on this issue but recognize that my soap box is bigger then I can handle right this second.

Harmony, Unity and Health

Several years ago, a friend died in Kuwait on his way into Iraq.  It was a horribly tragic accident which devastated a lot of people, especially his family.  I was able to serve his family as the causality assistance officer, basically a liaison between the family and the Army.  His family were members of a small catholic church, his best friend's family the members of a large baptist church.  This is in a small Mennonite town.  Sounds like the beginning to a great joke, but i swear i'm coming around to a point in this narrative.

Because it was a small town and his family is/was well liked and respected, we expected upwards of a 1000 people to attend the funeral.  Clearly too many for his small church to accommodate.  The baptist church was willing to host, but was still a little too small.  So the pastor of the baptist church and the priest of the catholic church, together with other local leaders, convinced the elders of the Mennonite church to allow a catholic service to be held in their sanctuary.  If you know anything about these three sects of Christianity, just about the only thing they have in common is Christ. 

Despite their very different points of views and closely held ideologies, they were able to come together as one body in Christ to honor my friend and serve his family.  It was one of the most amazing acts of true  Christian behavior I have ever witnessed and served as a powerful testimony of Christ's love to everyone. 

Since deciding 2 weeks ago to start a foundation in Maddie's memory, I have been reminded multiple times that many CDH organizations already exist.  Why would I want to go to the trouble of starting my own just to spend my time and effort doing something that someone else already does and probably does better?

My best answer is that it's important to me to feel like I'm actively doing something positive with this loss and doing it in a way I wish it had been done for my family.  My other answer is that we are all one community under the CDH, sick baby, sick child, deceased child umbrella.  To me, it doesn't matter if I raise $500 for CDH families or if someone else does, so long as that $500 is being raised and used to help each other.

More to the point, the Madelyn Spence Foundation may only participate in one sporting event.  We may only do one fundraiser.  We may only help one family establish a benevolence fund.  And after that, we may fizzle out and dissolve into nothingness.  Or, less likely, we may become the biggest nonprofit in the world and raise millions upon millions of dollars.  I imagine that most nonprofits that start, just like most businesses that start, last for 3 years or less. 

But I firmly believe that during those 3 years, we can all serve as force multipliers for each other, spreading the message, raising awareness and hopefully increasing funds for the nonprofits that stick around for the long haul.  Much like the three small churches finding ways to work together and support their community, I am hopeful that Maddie's Mob can achieve the same sense of harmony and unity with other nonprofits when and if appropriate. 

I also wanted to address my health - I was discharged from the partial hospitalization treatment program last week and feel like a new woman.  I am optimistic again.  I am focused again.  I have a hope and a joy and a belief in the future that was missing for far too long.  When the time came where something was going to give and I was sure it was going to be my life and/or my sanity, I am so thankful that this treatment plan was an option.  It truly saved my life as well as my marriage and my health. 

I am now considered an out patient, meaning lots of medical appointments and medication adjustments but no acute behavior health problems.  Dealing with "real life" for almost a week now, I would go further and say I am a much healthier and happier person then I was even before Maddie's death and getting better every day.