brave. . .and loved.

"I don't know how to live in this space"...this is what another Mito mom said to me yesterday as we spent the afternoon at Seattle Children's Hospital for a GI seminar. Tricia is  CALVIN's  mom, Ive mentioned this adorable 3 year old here before, asking for prayers. His seizures are worsening and sadly they're literally seeing Mito take over his mind and little body.  We spent our time sharing about our boys and the emotional rollercoaster the diagnoses of Mito has had on ourselves and our families. Naturally our conversation included a few hugs and tears.

Both our boys will go inpatient within the next 10 days, for VEEG's (Video monitored EEG for seizures) 

When I was little girl I remember one of our most favorite pass times in our home was when my sisters and I (shhh, sometimes my brother too) would pull out our BIG Sears Catalog. OK, you can see I'm taking a real risk in revealing my age by telling this story, obviously before Internet and 300 channels of TV. Anyways, catalogs were totally cool (and our encyclopedias!)

We would sit in a circle and take turns cutting out "our family".  Ready to paste them all down on construction paper or simply leave them cut out and make trades as we played.

Us girls would first pick out the most beautiful woman, who of course was very put together in her Sears best. Then we would choose our husbands, tall and handsome in their flannel shirt or polyester 3-piece suit...and even sometimes looking very good in their whitie-tighties! (ok we only chose those ones when we got really silly or desperate!)

Then it was onto our children, this was the most fun and also took the longest. It usually meant choosing up to 6 each! Spending sometimes hours, carefully going back and forth on which ones we wanted to call our own, then spending even more time giving them names. I also remember all of us fighting over which ones we got, each wanting the cutest and most perfect babies.

Basically that's what we envisioned having a family was going to be like. You grow up, you marry a handsome man and have adorable perfect little babies together...we would all live happily ever after, I imagine a dream for a lot of us as kids. 

Certainly, none of our children would be in wheelchairs, have feeding tubes or depend on any type of machine to keep them alive. They would be happy, able and pain free...and burying a child, never.

Living with Mito or any other life-threatening disease changes everything you thought having a family would be. Its very painful for everyone, and we're all learning to find our own way to live in this space...

But we can all agree it has  also allowed us to appreciate LIFE like we never have before, making memories every chance we can. Not taking life for granted, ever...

We know of many familes struggling in our Mito community right now, two of our little friends are beginning hospice care. These beautiful babies have fought very long and hard but are sadly losing their battle to Mitochondrial Disease. I cant even imagine parents having to make these difficult decisions, after working so hard. But to give up treatment also means the end of their suffering, freeing their failing bodies that have been through so much.  So heartbreaking, I cant even find the right words. 

We meet on parenting boards and follow each other on Blogs, for several months and many even years. Praying the new meds help, praying that next procedure goes smoothly, praying their next admission is short...you cant help but get attached. You begin to feel a strong connection to these families, mostly never meeting in person but I know we've surely shared tears with one another.

PLEASE PRAY for these beautiful children

as their amazing families find peace, strength

and healing through this difficult time.



 EITHENE, our fighter & bravest PRINCESS in the whole world

AND

 ZACH , our little warrior.

BOTH continue to show us how precious life is,

praying for more memory making in these final days.

LOVE you Jessica and Jen.