#FridaysWithLorelei: Finding Joy. Hold on to Hope.

 We have been very cautious about sharing too many pictures of Lorelei on Facebook and social media for many reasons that I am not going to get into here.  Last year I started doing a #FridaysWithLorelei post, once a week with an update and a picture on Facebook.  And I love it.  It allows me to share a tiny bit of our life and not overwhelm the world and myself with our on-goings.  I thought maybe I should start that here on the blog.  Make a point to do an update once a week.  Or when I remember.  Or when I have time.  Because let’s be real – what’s a lifestyle blog if you aren’t actually documenting your life?  

Like my facebook posts, I may only use one picture for these posts.  I know it’s not normal for blogland – but bite me.  I’m busy and I haven’t brushed my hair in days.  

With that, I just can’t wait until tomorrow!  So I give you the blog’s first #FridaysWithLorelei update:

mitochondrial disease fbxl4

What a week! Michael has been away for work so in addition to my normal Lorelei to-do’s (and work/life/etc) I am also picking up the 1AM medicine and refilling of the feeding bag shift every night. After a few days I am finally adjusting to the middle of the night wake up again. I have no clue how I was even functioning on no sleep while pumping every 3 hours for 8 long months…

Yesterday we redid her lab work (easily with one of our favorites from the VAT team). We got some good news and some not-so-good news. To avoid a long scientific post, I just ask that you pray for Lorelei as one of the meds hasn’t been working and it really needs to work. They are adjusting it to hopefully help balance everything out.

This life is so hard. For a few minutes, I let myself get comfortable. I took her to a park with a friend. I took her to Target. She didn’t puke much last week at all. I listened to so many who say “She looks so normal!” Hours before I found out the labs weren’t stellar I messaged a friend and said “I need a break, let’s go to Key West!”

The not-so-good news yesterday was a punch in the gut reminder for me. Her nephrologist called me and explained as much as he could. Her geneticist texted me for hours. The nephrologist used the sentence “It’s 2017 – Science hasn’t caught up and there really isn’t anything we can do.” Which, surprisingly, didn’t sting. It was honest and heartfelt. It was the reminder I needed.

There is no cure. Sure, we can manage certain parts of mitochondrial disease. But there’s no cure. We are hopeful to figure out the right dosing and the right medications to keep her little body functioning to the best it can. Hopeful (and thankful) for the team we have that is helping us manage her complications.

But there isn’t a cure. We can try our hardest to control the situation but the long and short of it is – she has a disease that will eventually take her life because a cure has yet to be found.

So as we always do, we keep going. We make the best decisions we can for her. We make the best decisions we can for us. We focus on the present and try not to open Pandora’s Box of worry and fear. We trust God. We check things off her bucket list like there is no tomorrow, with the hope of many, many years of adding more and more to that list. She is happy. Her hair is awesome. Her rolls are outrageous. Her personality is wonderful. In so, so many ways, WE ARE BLESSED.

The picture above was taken today in her stander that has been returned! Huzzah!

Please Note: I am not posting this so people feel bad for us or for Lorelei. Please, never feel bad for us. I am writing it because it helps me process.  It helps me cope.  And I hope it helps inform others about mitochondrial disease.  So instead of “I’m so sorry” or “you’re so strong” in the comment section below, let’s mix it up a bit – you tell me what is on YOUR bucket list for you or for your kids?

We all have some degree of dark and scary, not-so-great shit going on in our lives – but we all need to find joy and hold on to hope.

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