Some adorable and dearly loved friends, not from The Hunger Games. The title of this post is from The Hunger Games, I read all three books and saw three of the four movies. You have to draw the line somewhere and I just could not see the last movie. Phillip Seymour Hoffman wasn't even alive anymore when they filmed it for goodness sakes. In The Hunger Games, that line is said as a little cruel punch in the gut to the people whose fate hangs in the balance. Including those who
These are our beautiful girls who have our hearts and so much love for each other, too. Marian giggled her way through the day and is fighting for her health and this life with every ounce she has. The photo shoot wasn't all roses - but looking at these pictures you could never tell! Thank you Shoots & Giggles Photography for donating your time, talent and these treasured photos to us. Dad was at work when we snapped these, as they say when the cat's away the mice will play.
Shoots & Giggles Photography Yesterday and today were two very different days. Both put us face to face with both the grim reality of the NPC diagnosis and also the exceptional people that NPC has brought into our lives, and those that were already there. The two days were in sharp contrast both to one another and within themselves. Today, representing hopefulness for the future and the vibrancy and sweetness of Marian, clutching her belly while throwing herself back on the b
When I was little my best friend Ashley and I used the same after school babysitter. In second and third grade we would wait in the elementary school circle driveway waiting for her to come get us. Sometimes she would be late. I would turn to Ashley and nervously ask, "what if she doesn't come?" Answer, "she will." I'd wait five more minutes and then ask, "but if she doesn't come, what will we do?" Answer, "she's going to come." This wasn't exactly highly reassuring to a seco
Yesterday we got some great news. Marian has an appointment April 7 with an NPC expert in Chicago who has accepted her as a patient, given her a rush appointment, AND can begin administering the treatment if it's not ready in California yet. Our local hospital is hard at work trying to get the treatment approved here so we will not have to travel back and forth to Chicago; however, to know that it will be accessible is an enormous relief. I've really been struggling with the
Emily and Marian, ages 3 and 6 months All I ever wanted was to be a mom. When I was little, when people asked how many kids I wanted, my answer 13. Naturally, mostly girls. I had names picked out and probably took pretend play a step too far pretending my dolls were my actual babies, strapping them to my body with a make shift chinese jump rope baby carrier, proudly strolling through public places, excitedly whispering to my mom, "do you think people think this is a real baby
Well, I must admit, I always kind of wanted a blog, but I never really had anything to say. Not to be confused with not having opinions - which I certainly have no shortage of. I always preferred to live my life privately. Now, unfortunately, I do have something to publicly say, which is this: we need to save our daughter's life. She is 18 months old. And it is freaking stressful. A couple days before Marian's Niemann-Pick Type C diagnosis there was this massive double rainbo