Wednesday, November 25, 2009


Thanksgiving has always been my favorite American holiday. I love that most Americans take a day out of their busy lives to enjoy family, friends and food.
Thanksgiving is different for me this year. Jacob is on day 25 of seizing. On Monday, we saw yet a new set of seizures where Jacob's neck, eyes and lips are twitching. He's still concious and smiles, but at times it's getting pretty bad and the twitching sort of takes over. This week has been about identifying the new seizures on yet another EEG, and trying to medicate them as best as we can. It was another roller coaster week, and it's only Wednesday. On Monday, we have yet another care conference to decide on next steps in Jacob's care - finding that right balance between seizure control and Jacob coming home some time in the future.
Thanksgiving as most other things is also different when you have a critically ill child. Your priorities are completely shifted. As people find stress in the holiday, we just want to be together as a family. And it's not just empty words. We know how it's to be separated and live with emergencies and crisis on a daily basis.
We also know what thankfulness and gratitude mean. We're every day amazed by our family and friends reaching out their hands to help and support us in all sorts of ways. Sometimes people think they can't do anything for us, but to simply say a word of hope, support us, and be - that's really all there is to it.
This Thanksgiving, I want to give thanks to:
- our Jacob who continues his fight against mitochondrial disorder.

- sister Sarah who is turning into a fine little girl.
- our "steady rock" Joakim that stays calm no matter how much the boat is rocked.
- our families in Sweden and Norway who come to visit when they can.
- our friends who bring coffee to the hospital.
- our friend who brings fresh fruit to the hospital.
- our neighbors and friends who sit with Jacob in the hospital, so we get a little bit of time together outside the hospital walls.
- our friend who slept with Jacob in the hospital to give us one evening together at home.
- everyone cooking for us.
- a family having dinner with us on a Saturday evening in the empty hospital cafeteria.
- all our friends opening their homes for Sarah.
- that phone call or message when a friend knows I am down.
- Jacob's brilliant smile after a long day in the hospital.
- our community of moms with special needs' kids who completely understand our journey.
- our friends who help Sarah make cards and gifts for her brother.
- Sarah's excitement about her day!
- Joakim's and my colleagues and bosses always checking in on us and Jacob.
- Jacob's school who continues to support him in his fight in getting better.
- Jacob's former and current therapists turning into friends and support to the whole family.
- Jacob's nurses and former nannies being key people in our lives.
- Jacob's core doctors never giving up on our little kiddo.
This is just a little piece of everything we get to experience every day. We're truly blessed with support and love in a critical time in our lives.
Gratitude is the memory of the heart.
Love, Maria.

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