Monday, February 11, 2013

brother and sisters.

 Few things in life make my heart beat in rhythm with perfection like the site of these two together.
They are healing moments.  Moments of clarity and perspective.
 Nora adores Mabel.  Mabel adores Nora.  
There's something to be said about the way they interact.  It is gentle, easy, swift, and natural.
I can't quite put my finger on it but I know that it is divinely planned.  These girls were made for one another.
 Early on, after Mabel began showing symptoms, people began making comments to me about my grief.  They would say things like, "at least you have two healthy children," or "well doesn't it make it easier knowing that the other two are ok?"
Some of the most hurtful things were said to me unintentionally.

But to make it very clear now--
No, it is not easier having two healthy kids.  I don't know what it's like to only have unhealthy children but I do know that Nora and Braden's health doesn't take away from Mabel's unique life.  Knowing that they are healthy is a blessing.  It is wonderful and knowing what we know now, I believe it's a miracle.  But I also know that the pain and hurt that we have endured during our own process of acceptance should be validated and kept separate from Nora and Braden.
 They all go hand in hand.  
Mabel comes with Nora.  Nora comes with Braden.  
They're all ours and they all have a distinct and perfect purpose.  So making it seem like we should 'just be thankful that we got two healthy kids in the mix' never did sit quite right with me.  

We are grateful-grateful beyond words and emotions.  I could never convey how amazing it is to know that they didn't have the struggles that Mabel has had in her life.  But we don't know their futures or what their lives will hold.  Today is only as secure as today and that is the way we live--not in fear but in reality.  
 Our reality is that Mabel has had it really rough.  Her brain seizes and her body twitches.  She can't see well, eat well, or even go to the bathroom well.  She is tired and cries non stop.  She can't sit up on her own, can't seem to grow and has never met one single milestone on time or even close for that matter.  

We don't know that Nora won't some day develop cancer or that Braden won't inherit another rare disease.  We know that every one of us carries several genetic mutations so it actually wouldn't be any more strange than Mabel having Batten Disease.  In fact, although it would be crazy rare, we aren't even sure that Nora and Braden don't carry a gene that would cause them to develop symptoms of NCL at some point either.  

But we choose not to live that way; wrapped in fear and worry.
We choose to live knowing that what we have today is what we are supposed to have which is a healthy, sassy, diligent 6 year old girl who likes to talk non stop.  We are supposed to have a healthy, wild, singing, growling 5 year old boy who is sensitive and caring.  And we are supposed to have a 2 1/2 year old that isn't quite so healthy but is pure and perfect in every possible way; who's smile lights up the world and who's toes smell delightful.  
 Life is hard and messy for all of us.  Ours includes a little extra care and we're ok with that.  
Nora, Braden and Mabel are incredible gifts.  In my mind I cannot separate them by healthy and unhealthy.  They are together, bound by a love that is specific to them as a whole unit-our children.
They know it already and we celebrate it.
"Brothers and Sisters are as close as hands and feet."
Vietnamese Proverb

1 comment:


The bond between siblings can be as strong as parents with their children. May not be perfect but what is?! Love the way they love each other :) Thanks again for sharing!