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.