It's been 2 years, since Norah's awful diagnosis
It's been 2 year years of some giant changes in our home
Some that I have struggled with, and fought internally and externally. Some battles I still have
Ignorance is no longer bliss
I live in a reality that food desperately matters for my children, especially the one who has type one.
I also live in a reality that I am a minority, in the way I treat and manage this disease for her
That I am rebellious in this way..... and I'm not typically rebellious
It's hard for me, to say anything, to make a stand.
But I will fight for my child, for her best, even if that means I disagree with her dr. or go against the norm
It is very isolating at times, not just the disease, but that we treat it differently.
I have spent more nights alone in these past 2 years than my whole life. Retreating. Not wanting to give the burden for anyone else to worry about. Not wanting to let it go, to still have as much control as I can. Feeling so distant from everyone.
With moments of bitterness trying to climb in
but still hanging on to hope. Being reminded of hope. of something more eternal.
I have mourned the thought of ever having a night away, far far away with my husband. of ever having a break. a moment to breath.
And then on my birthday. I got a gift. A weekend away with my husband. At the beach, seeing my favorite band, needtobreathe! WHATTTTT!?!? Elation was my first response!
But then my excitement was breached with misunderstanding and stress
How could this be possible, who was watching the kids? who would be willing to take on Norah that long (and believe me 2 nights is very long for a type 1)? details? I need details, lots of them.
Brett had arranged almost everything. I just had to get it all ready. As in prepare every bite of food that went into Norah's mouth for 3 days, with detailed instructions and pray that Norah's pump sight didn't come out during that time since only Brett and myself know how to change it. 2 nights is the longest possible trip we could have at this point, with all of the diabetes details. I would love to say that it was all excitement before the trip, but it was a lot of hard work, planning and stress. There were moments I didn't even think it would happen, that I thought something would happen to even keep us from the trip, so my excitement was little, until we got on the plane
And from that moment, every moment was just what I needed, just what Brett and I needed.
And it was just one full day . And we made sure it was just that. Full.
I read an entire book people!!
It wasn't just that we had a weekend away at the beach, it was that we spent it with people really important to both of us, they don't know, but they have been right by us in this journey with Norah. They have reminded and given us of hope in some of our very dark moments.
The great thing about beautiful music is that it meets you in this place, sometimes a dark and hard place. It reaches deep down, it allows you to mourn and to heal and to hope. It brings you closer to Him.
"In this wasteland where I'm living there is a crack in the door filled with light.... and it's all I need to get by"
Needtobreathe sings this song, it is about part of their journey, but it is also exactly about our journey.
They have told me that Norah is a difference maker and that maybe even I am
They have reminded me that there can be "something beautiful" in all the hard
They have told me "if your lost and lonely and broken down bring all of your troubles, come lay um down"
And Brett worked some magic and arranged for us to meet them before the show. Meet these amazing musicians who have unknowingly been on this journey with us . They are so kind.
It was a slice of heaven, I'm pretty sure music in heaven will be exactly like theirs.
We got to be right upfront and center.
And we had another run in after the show only confirmed their genuineness.
I spend a few minutes getting to chat with Seth Bolt (bass player)
And Seth doesn't really know this, but we are friends now.
I'm reading his book and planning on
staying in his tree house someday. With my husband of course :)
Oh probably the highlight, experiencing this with new friends, who we met that night!