Our days are filled with the “give and take” nature of a sometimes invisible disease process. Most days when things are going well, there is nothing to give, and it takes nothing from us. Well, almost nothing. Or maybe its just that we’ve already given so much, we don’t notice what is being taken. But other days, the days i want to throw things at the TV when smarmy, smug pregnant women tell me that THEY are going to give THEIR BABIES the best things in life by breastfeeding/using similac/no enfamil/cloth diapering/huggies/drinking V8/taking 5hour Energy, or the commercials about chubby babies playing and cooing happily make me want to break down in tears for the fact that I was too busy pleading with God for my child’s life to enjoy that roly-poly time most babies get – on those days, it feels like so much has been taken from us. From her. From my friends who have had to bury their children.
There is a song that is sung in our church as part of our worship service. It is called “Blessed Be The Name of the Lord”. It is based on a Psalm, and is basically the Psalmists way of saying – no matter what happens, i’m going to CHOOSE to praise you, God.
(lyrics by Matt Redman)
Blessed Be Your Name In the land that is plentiful Where Your streams of abundance flow Blessed be Your name Blessed Be Your name When I'm found in the desert place Though I walk through the wilderness Blessed Be Your name Every blessing You pour out I'll turn back to praise When the darkness closes in, Lord Still I will say Blessed be the name of the Lord Blessed be Your name Blessed be the name of the Lord Blessed be Your glorious name Blessed be Your name When the sun's shining down on me When the world's 'all as it should be' Blessed be Your name Blessed be Your name On the road marked with suffering Though there's pain in the offering Blessed be Your name Every blessing You pour out I'll turn back to praise When the darkness closes in, Lord Still I will say
You give and take away You give and take away My heart will choose to say Lord, blessed be Your name
That last part is so hard to sing most Sundays. it always has been. Because if i can’t sing it, then i am just doing a bunch of lipservice.
it’s not REAL. it’s just a religion, not a relationship. But that’s probably a whole other post. What I am trying to say here and now is this – our lives have been affected by mito in ways that are hard to
even put in to words.
Somedays I feel “angry” at all that has been “taken” from my baby, or from our family:
The ability to eat and enjoy so many foods without pain (and usually other medical issues that result if she tries!)
The ability to play outside like a regular kid.
the ability to go places as a family (she usually stays home with her nurse to not over-stress her body)
the ability to swim, take a bath, splash with her sisters on a warm day in the sprinklers.
the ability to go climb into her own big girl toddler bed.
the ability to have a body free from tubes and wires and sensory overloads and not-quite-up-to-par functions of body systems
the ability to live a pain free, happy go lucky life free of hospitals and specialists offices
I could really get going on the things that i feel are “taken”. It would be SO EASY some days to give in to the bitterness that takes root so easily in the soul when life doesn’t go “just like we hoped it would”.
But the truth of the matter is, that it has not taken HER from us, so what really do we have to complain about.
And the truth of it is, that all of that, up there, is not the focus of our lives, and i never want it to be what takes front and center stage here on my blog.
With the bad comes the good.
So what have we been given, what blessings have been bestowed upon us “because” of what Kendall’s diagnosis brings us…
We have been given an insight into what “priorities” really means.
We have watched our daughter exhibit a strength and bravery at her young age that would make ANY parent proud.
we have been the recipients of people giving of their time and money to help us stay together in times and places it seemed impossible.
we have witnessed the GOODNESS of human nature – and let me tell you – that is a priceless gift indeed.
we have stood on the edge of a dark cliff, looked the abyss in the eye, and said “not today – you’re not takin her today”. the incredible amount of strength and confidence you get from being able to be in that place is an indescribable feeling. Most people will never know what i’m talking about. And for them i am both
incredibly happy, and incredibly sad.
We have seen people exhibit “friendship” and “walking beside us” in ways that are so much deeper than surfacey lip-service.
We have learned what it means to be “rich in happiness”, and how extremely healing a good deep belly laugh can be.
We have learned the meaning of “simple joys” – of rejoicing in the mundane, the miniscule, the miraculous – a first smile after an illness, a new word whose timing
is surprising, a mess made that represents a milestone met.
We have learned that CHOOSING TO BE GRATEFUL is to choose life.
We are learning that making that choice is rarely easy, but it is always worth it.
I read a blog post recently (go HERE to read it for yourself), and it struck such a chord of resonance
in my soul. It speaks of a word the Israelites would use after they had been given a blessing (seriously just go read her blog,
she explains it WAY better than i ever could!) How often can we say “Dayenu” – it would have been enough. when I think about this struggle
between “give and take away”, I realize that it is not quite right. We were never promised that we would
be “given” anything in life. No one ever sat me down and promised me that i would have four beautiful
baby girls and they would all be happy roly poly Gerber babies free of problems and brattiness.
No one promised that our lives would be without storms and cold nites and hard days and really crappy stuff.
No one has ever promised me that Kendall would be healed completely and live a totally normal life.
No one ever promised us that WE would love from one sunrise to the next.
And so in our good times and our bad times, we must learn to say “Dayenu” – It is enough.
It is enough that we are given this breath, this moment, this day.
It is enough that we have what we have been blessed with by our God.
It is enough that we have memories, treasured times, blessings, life.
God is good when our prayers are answered, and HE IS GOOD when they are not.
It is not mine to say “you give me this, you can’t take that away”.
And so I will continue to sing, with tears in my eyes, and the words faltering out, and with a slight tinge of jaw clenching because
these words are not easy to get out:
you give and take away.
you give and take away.
my heart will choose to say,
Lord, blessed be your name.
Many many thanks to Lore, author of the blog referenced above, for her post that inspired this post today.