When our daughter Bella was born with Congenital Nephrotic Syndrome (Finnish Strain), I wholeheartedly believed that not only does God give us more than we can handle, but that her disease and subsequent issues surrounding that disease, would be our one and only burden to bear for our lifetime.
I mean, honestly. God would not give us even more than what we already could not handle, right?!?
This past summer, our Bella as you know, had surgery on both her ankles for something totally unrelated to her disease. It was an intense summer. You can see past blog posts about that.
Then, this past week, we received our third recommendation for Bella to get further testing into some abnormal curvature in her back.
And here is where my raw honesty will be set before you.
I’ve had enough.
And clearly – my body and soul have as well.
I have been sick for five weeks straight.
A sinus infection, another virus, and then the migraines.
Good God, the migraines.
I have reached that point of sheer exhaustion.
Being the mother of a chronically ill kid takes a toll in all the ways one would expect – I have done a crappy job of taking care of myself as all of my time and energy has been poured not only into Bella, but also making sure I never neglect Abeni.
But there are other more subtle and just as intense ways it has taken a toll…
regardless as to whether or not we want to admit it, there is still this stigma in Christian circles that perhaps somehow families who experience trauma of any sort may have some sort of past sin that has allowed for this to happen.
Or, in the very least, people are wary about spending too much time with us. I am sure part of that is us – having Bella changed us permanently. We live with that deep sadness and we have to have strong boundaries in many areas, which tends to put off some people.
At the same time, it is so lonely!! It is difficult being the difficult family – the one who it takes a lot of extra energy and grace to spend time with.
It is difficult to be THAT MOM.
Oh, friends, I am so very weary of being THAT MOM.
So, as I write this in a place of feeling empty and poured out, searching for that well from which to refill my bucket, these questions abide with me::
What does one do when God decides to give you more of the more than you can handle?
I have no idea why.
That is the honest truth.
But this is what I do know – from my head to my toes.
It is not built on emotion. It can’t be or it would be as unstable as a leaf in the wind. It is something I know because I have seen it play out, not only in my own life, but in the lives of so many around me. It is not a cliche, or a salve, or a balm.
It is Truth.
It is the melding of past, present, and future – intellectualism and faith.
It is grace. It is hope. It is mercy.
It is found in one’s everyday experiences and it is also found in the otherworldly.
A dear friend of mine shared this with me and I am sharing it with you. It has brought me a lot of comfort in this season.
The Prayer of St. Patrick
I arise today
Through the strength of heaven;
Light of the sun,
Splendor of fire,
Speed of lightning,
Swiftness of the wind,
Depth of the sea,
Stability of the earth,
Firmness of the rock.
I arise today
Through God’s strength to pilot me;
God’s might to uphold me,
God’s wisdom to guide me,
God’s eye to look before me,
God’s ear to hear me,
God’s word to speak for me,
God’s hand to guard me,
God’s way to lie before me,
God’s shield to protect me,
God’s hosts to save me Afar and anear,
Alone or in a mulitude.
Christ shield me today
Against wounding Christ with me,
Christ before me,
Christ behind me,
Christ in me,
Christ beneath me,
Christ above me,
Christ on my right,
Christ on my left,
Christ when I lie down,
Christ when I sit down,
Christ in the heart of everyone who thinks of me,
Christ in the mouth of everyone who speaks of me,
Christ in the eye that sees me,
Christ in the ear that hears me.
I arise today
Through the mighty strength Of the Lord of creation.