Friday, December 12, 2014

Giving for Obie

The messages of love and support we've gotten about Obear are wonderful.  Our family that was able to travel to California and our Cali-FAF (friends and family) have been over-the-top generous with their time and food-delivery.  We are humbled by the fabulous people in our family's life!

Quality Time

That being said, there are only three meals a day (and those of you with kids know that doesn't even REALLY happen with a newborn at home), so we can't accept food delivery offers from everyone (and some people are just too far away for that to be practical).

So what can you do for Obie?  Oberon (and his parents) would love it if you donated to one of his favorite charities, as they all have either touched us specifically or support families like ours.  (Most of the time, you can even donate in his name, which would be very special to us.)

National Organization for Rare Disorders

Abbreviated as NORD, this 501(c)(3) supports the identification, treatment, and cure of rare disorders through education, advocacy, research, and service.  When things wind down, we'll share more about Oberon's diagnosis, but he has at least one rare disorder.  NORD has a page with resources for his condition and a general overview.  This type of support (simple as it is) is extremely helpful for families when a loved one is diagnosed with something rare and foreign.  Their charity navigator score is pretty good too.  Their slogan is: Alone we are rare.  Together we are strong.  Click here to donate to NORD.

Foundation for the National Institutes of Health

FNIH is an independent non-profit that creates public-private partnerships to support the National Institutes of Health (NIH) in conducting scientific extend healthy life and to reduce the burdens of illness and disability.  These partnerships coordinate resources of NIH with industry, philanthropic organizations, and the public paving the way for more collaborative and efficient research.  Topics researched by FNIH that are of particular interest to Oberon are Genetics, Cancer, Imaging, and Neuroscience.  Click here to donate to FNIH.

JW House

JW House Logo

JW House is located on the Kaiser Santa Clara campus (where Oberon was born and treated in the NICU).  It is a guest house for families of hospital patients to take a break, have a meal, or even stay the night.  They have toys and games for kids and a wonderful volunteer staff making everyone feel welcome.  We took advantage of their fully stocked kitchen a couple times and even had our Thanksgiving dinner here.  We used their sinks to wash breast pump equipment and they helped our families find places to stay nearby for a reasonable price.  All of these resources helped us spend as much time with Oberon as possible when he was in the NICU.  If this isn't cool enough, add in that the whole thing was dreamed up by JW, a boy who was battling brain cancer!  He wanted a place for families to be close, because no one should go through tough times being separated from their loved ones.  Click here to donate to JW House. 

Now I Lay Me Down to Sleep

NILMDTS provides remembrance photography for parents suffering the loss of an infant.  We didn't know this service existed until the social worker at Kaiser mentioned it.  She contacted a nearby photographer with NILMDTS, who has been amazing to us and already provided us with beautiful images of our beautiful son (with many more on the way).  She came to the hospital to take pictures, and then when we were discharged home she came again to our house so we could get some images of Oberon in his nursery.  Along with providing priceless mementos for Chris and Elizabeth, these photo sessions were happy experiences for our family.  We got to have those moments of posing with Obie and having him pee a little on the prop blankets, just like every parent!  Click here to donate to NILMDTS.  And check out the fabulous, generous, and uber-responsive Abby Alger if you have any bay area photography needs.  She's a rock star.

Donations make Obie smile.

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