Maddie's Mob

Big exciting news!

We are not operational yet, but are far enough along that I feel safe announcing that Maddie's family has gathered together and are in the process of forming the non-profit organization "The Madelyn Spence Foundation".  Our foundation will be nicknamed 'Maddie's Mob' and we have an interm website here:

https://sites.google.com/site/maddiesmob/

1. The Madelyn Spence Foundation raises awareness for babies and families affected by Congenital Diaphragmatic Hernia by telling and retelling Madelyn Spence's story. 
2. Current fundraising efforts focus on providing grants to the families of CDH babies to help with the extreme costs of having a sick child or the death of a baby.
3. The organization will serve as a vehicle to establish and distribute benevolence funds for other CDH families.

For our inaugural event, we are encouraging as many Maddie lovers as possible to Join the Mob at the Goleta Beach Triathlon on July 29, 2012. There are three events to choose from and 10 reasons why you should join us:

1. You can walk for 1 hour or more
2. You own or can acquire a bike
3. You can swim without drowning (most of the time).  If not, you can skip the swim in the duathlon.
4. You've always wanted to spend a long weekend in Santa Barbara
5. You are military and don't have kids so you can afford it (yes this means you, go ahead and register now)
6. You need a good reason to focus on getting in shape over the next 7 months
7. You really want to do something to support us, but haven't known what to do
8. You aren't going to be pregnant on July 29th.
9. You want to attend the first annual Madelyn Spence Foundation Party
and the top reason to Join the Mob:
10. You want to honor Madelyn's memory is a very tangible way.

Within the next few weeks, I will announce the sale of Mob training clothing, including shirts, shorts, hats and more.  All proceeds will go to The Madelyn Spence Foundation's first grant.

Ok, so go register for the Tri and let me know so I can feature you on the web site.  My vision is to have hundreds of members of Maddie's Mob on the course, if not this year then in the coming years.

Things get Better?!?!?! Smack my Head!

Bad Things are going to happen and they don't have to ruin my life.  Or yours.

This simple statement may seem, well, simple to you.  But it has taken me years of therapy and more recently, a month long stay as a psych patient, to figure this simple statement out and own it as a truth.

Its as obvious as saying that alcohol and drug abuse are bad.  Sure you know it, but it isn't until someone says:

"(Those) emotionally dependent upon alcohol or drugs (have the) foundation of (their every) relationship (in) on emotional quicksand. Whatever progress you think you are making as a (person or couple) today will tend to unravel in the future. The reason is that addiction or even psychological dependence on a substance will alter a person's capacity for certain feeling states that are essential for maintaining a healthy relationship. Feelings, like empathy, curiosity, spiritual appreciation, and deference will usually become numbed. Othermore stimulating motivations like pride, dominance, and hyper-reaction will tend to be overemphasized instead." (Adapted from Virginia Satir's The Four Most Toxic Syndromes in a Marriage).

For me, its a smack my head moment.  Of course!  Why didn't I know this sooner.  Again, simply put, you don't know what you don't know.  I had no idea that such horrible and horrific events didn't ruin everyone's life.  In fact, I've spent the last couple of months mystified that my fellow bereaved mothers can continue on.  I've been even more concerned that people who knew and loved Maddie could continue on.

Of course, the real mystery is how I have gotten through life so far without developing a single effective coping mechanism for such tragic loss.  My hypothesis is that some of us end up with PTSD or as pysch patients or with chemical dependencies or some other mental imbalance because we aren't capable (mentally, emotionally or psychologically) of reacting any other way to life's most horrible events.  And we assume that anyone else in our situation would have had the same reaction, taken on the same imbalance and are confused that the great big world of "they" don't seem to see it our way.

The second part of my hypothesis is that the more tragedy we, the imbalanced, have experienced, the more likely each tragedy will tear our lives more and more apart.

But now FREEDOM!!!  my whole world changed today - it doesn't have to be this way!  Once I realized this, I immediately envisioned a mental file cabinet in which I can store all of these amazing coping mechanisms I have learned in therapy.  And when (not if) the next tragedy comes around, I can access this file cabinet and deal with it as a well adjusted adult.

I do not have to be emotionally absent.  I do not have to be aggressive or defensive or deceptive about how I am really feeling.  I do not have to be afraid or ashamed that something horrible happened in which I had no control.  I now get it - that is just life.  And sometimes life sucks.  A lot.  And unfortunately, grief and tragedy are a part of life.  And we can't control it.  But we can work really hard and coach (not control) ourselves through the worse life has to offer and choose to deal with it in a way that leads to a productive, well adjusted and happy life.

For me, intense therapy was the only path for me to start to return to a path of productive, well adjusted and happy.  One more week before they release me to try all of this theory out on real life.  Thank you for all of your support - I am hopeful that I am ready to start supporting my friends and family again.

Good Riddance 2011

Seems like 2011 was the longest and worst year of our lives.  Good riddance.  Time to move on, move forward and start to restake my claim on this thing called life.

If you are a follower of this blog, you know that in the past months I have struggled extreme depression, suicidal ideations and life in general.  And i'm exctied to write this blog today and announce that I feel better.  Not perfect.  Not healed but better.  Almost normal.

Being a psych patient (just found out that this wasn't blatantly obvious to some) over the last few weeks has helped me tremendously.  Being on this side of the treatment, I am grateful I have the opportunity and resources to attend this program.  I regret that mental health programs have so much stigma attached to them because I can see the benefit in the idea of everyone going through a month intense therapy - I wish i had done it sooner.

My family still has a lot of healing to do.  We still have a lot of grieving to do.  But more then anything, I have started to learn how to be sad and how to grieve without feeling the world around me fall completely apart.  Luke and I are relearning how to laugh together again - to truly enjoy each other's company.  I held a beautiful 2 day old baby this afternoon and was just filled with joy.  Dillan continues to be amaze everyone and seems to be responding well to my increased attention and energy.

I don't know what this year will bring.  A large part of me hopes it brings another Spence baby to our home.  I believe we are still walking in the valley - just starting to believe that there will be mountain tops ahead of us.

And did I mention that we finally have smart phones?  Hooray!!!

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.