Confessions As I Anticipate Grief: part 2

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Lately, I find myself having conversations I never imagined. Like the other day with Jayden and Brooklyn’s palliative nurse. Or the one I had with their sister, Ellie, on the floor of her bedroom.

I guess when two of your kids are labeled “terminally ill” these conversations are bound to happen. For those of you new to our story, we have 3 children, the two oldest, Jayden (10) and Brooklyn (7) have a rare and terminal disease, Sanfilippo Syndrome. Our youngest, Ellie (4) is does not.

This piece is part two of a series of blog posts entitled, Confessions as I Anticipate Grief.

WARNING: Friends in painful places, especially for my “me too mamas,” my Sanfilippo sisters. This is a difficult read. I wouldn’t have read it even a year ago. It just depends on where you are in your diagnosis. Just know it is here when you need it. But, I am 7 years in and this is our reality. A tough, gut wrenching, honest, reality. Sometimes it can be too much. But isn’t it all?

My intention is to share truth. Here’s what I promise if you choose to read. You will see me rise. Just like you are rising. We are not just surviving, but thriving in the midst. Death doesn’t win. We don’t drown. I am tired of trying to avoid the darkness, because light is so much brighter when we acknowledge how dark it is. Thank you for showing up in the meeting for a club you never wanted to join. Since we are all members, may these be our words.  Continue reading “Confessions As I Anticipate Grief: part 2”

perms and pink socks

When I was growing up I wanted to be Cindi Lauper. I loved her music, but even more, her style. She was so unique, with her vintage, punk-rock outfits, and ever changing hair colors. I tried dressing like her every chance I got and would go around the house dancing and singing all her songs. I loved “time after time,” “girls just wanna have fun,” and especially “true colors.”

Pregnancy Progress: Third Trimester

This pregnancy has been physically and emotionally difficult.  I have never been a good pregnant person….and toward the last few months, it has really taken a toll. I know looking back you forget most of it, but I wanted to blog about the yucky-ness so I don’t forget!

Continue reading “Pregnancy Progress: Third Trimester”

Jan 16, 2012 Ultrasound, it’s a girl

Baby number three. Still sounds weird. I never thought I would be having a third child, and if you knew me pregnant with Jayden, you may be surprised that even Brooklyn is here. And beyond the walking symptom book I am when I am pregnant, it is even more amazing given the 25% chance this baby girl will have Sanfilippo. In a way, I have been avoiding this blog post. I guess it is because I actually am documenting my feelings towards a third child, and to be honest, I am full of mixed emotions.

Continue reading “Jan 16, 2012 Ultrasound, it’s a girl”

Journey to trusting God, for real….

Speaking of being open to special needs….

Justin and I have been on a journey since we began having children. We used to talk about how many kids we wanted, did we want boys, girls, or a combo… We never discussed having special needs, but did make passing comments once in a while that we would be perfect candidates for the job because of our faith, family, and network of support…. Little did we know…

Continue reading “Journey to trusting God, for real….”