Little Bella has captured the hearts of our family and everyone that meets her. We want to share her story with all.

Thursday, October 13, 2011

Emotions and Thoughts and Thoughts and Emotions

Be forewarned…Bella’s birthday is rapidly approaching which means I am reminiscing and thinking and feeling a lot of different emotions. 

This post is mainly about grief.

I’ve just re-read every email I ever got from her mother.  How I treasure those!  I hope she is well.  I can’t imagine what Bell’s birthday must invoke in her and their family.  Today I wish we could sit and have a good cry together.

I’ll let you in on a little secret about adoption.  Adoptive mothers aren't allowed to grieve.  You may not believe me, but it’s true.  I was actually told to my face once, “But why are you ____(can’t remember the word she used)?  You knew.  You chose her.”  Yep.  We chose her.  We chose to bring this beautiful little girl into our lives.  But no.  How can anyone really know anything that will happen to a baby?  I have a friend that adopted a beautiful healthy little girl.  She died of cancer before she was old enough to start Elementary School.  “But you knew.”  I knew that she was a sweet baby with Down syndrome.  I knew that her heart needed to be repaired.  I talk to several doctors who told me that once she was repaired, she’d be fine (they were still telling me that as we went home from the hospital after her repair.) 

I didn’t know that she would take our lives and totally, meaning 100%, change them.  Our little homeschooling family became a public school family.  You can’t home school when Mom lives at the hospital.  This overprotective mother who was involved in every aspect of everything in my children’s lives had to hire a nanny and resort to occasional calls home to “see how things were going.”  A million things are different now.  A few years of my children’s lives are gone.

Am I complaining?  I don’t think so.  I think I am acknowledging.  Life is filled with change.  Lots of it.  It is never static.  It is constantly evolving and changing.  As a child my life changed often.  We moved a lot and my Mom did a great job keeping life normal and safe for us.   As I remember it, though, I would just start over again each time, like walking through a new door.  Here we are now, no looking back.  As I get older, I want to stop and turn around and glance back through the door and pause to remember.  But a part of my heart feels that as betrayal towards my Bella.  I’m trying to use my older, more experienced voice to teach my heart that acknowledging pain, suffering, and difficult times is not weakness nor does it demonstrate a lack of love.  Instead it allows my heart to heal from the realities that hurt and were painful and to more fully embrace life – all of it.  Life is not always happiness and bliss.

I had a moment yesterday.  Bella was in the living room on the vent sitting on the floor.  She was being so delightfully ornery that she made Jason and I laugh.  And at that moment a very sad feeling streaked across my heart.  A feeling that we had been denied this – this fun, this energy, this normal fun toddler moment for so long.  Playing with her sister.  Keeping us laughing.  That was what I thought I was choosing when we chose Bella.  Instead we got a medical education.  We learned about death and saying good-bye.  We learned about her fight and drive to survive.  We learned about “the system” that drives me crazy – hospital protocol, clinic protocol (each of the millions of clinics that we see has their own), nursing protocol.  We learned about therapies, crash carts, and ambulances.  We learned about doing the best thing for a child.  In the process our hearts have been smashed, torn to pieces, and ripped to shreds.  Sitting here three years later, I do believe that I am a better person for all of this.  I know more than I ever wanted to know about some things and not nearly enough about others.  Through it all I have been protected and upheld by my Father and His Spirit.  I really cherish some of the worst days with Bella because they were the days when I felt Heaven’s help physically.

When Bella’s mother cried as she said good-bye to Bella and when she talked of Bella’s beginnings, I could sense her grief.  I could see her sorrow.  But I didn’t feel that I could touch that kind of pain.  I could respect her and love her, but that is all.  Now it is different.  Now we could sit and sob together.  I could weep and not feel that I’m not entitled to this pain.  I have now walked the road of sorrow.  I am know acquainted with grief.  As Bella’s birthday approaches, I grieve the idyllic infancy she should have had.  I grieve for the pain free years of discovery and toddlerhood.  I grieve the pain we all, both her biological and adoptive families, have faced.  I grieve.


Heather said...

I can relate to this post on many levels. We knew of Zoey's heart defect at her 20 week ultrasound and from there we knew, because of the type of defect that she would be born with Down syndrome.And form there I just imagined this smiley, happy, adoring Down syndrome child and that was that. the she was born.Born into congestive heart failure, born having suffer a stroke inside of me, a place that was suppose to be safe. Born with a form of leukemia and then seizure and then, full blow leukemia and now anew diagnosis of CP because of the stroke. Forget about the gtube and all the rest of the little things.

Anyway, isn't better that we didn't know. Isn't it better that our blinders didn't allow us to see what could happen. Isn't it good we now know but just try to cling to our faith that tells us we have no control?

I watch some of these other children, even Bella on some levels and I see them using two hands and trying bear weight and then I see the other's,what I call lovingly,"the typical Down syndrome" child and my heart is sad on some days.

Sending so much love to you and your fighter girl. Finding it hard to believe that I found you, your girl,over 2 years ago. And because I did and because I have watched this journey of her's, I see the miracle daily,in everything she does. Thank you for sharing her with me. I am blessed.

Tia said...

I get it. I "chose." I have my wonderful girls. I chose them knowing their multiple, complex health needs. I chose them knowing there would be difficult days ahead.

I didn't choose heartbreak. I didn't choose to watch my child lag behind her classmates because her wheelchair only goes so fast and on this one particular day no one has remembered to slow down for her. I didn't choose to have to decide between brain surgery that might kill her or no brain surgery which would leave her in pain and potentially cause her to lose her arm function.

I chose my girls and I love my girls and I cannot contemplate a future without them (except that I know now, more deeply than I did then, that I will outlive them both). But I did not choose to have to watch my girl gasping for breath, fighting exhausting seizures, trapped in a body-wracking spasm which even the strongest pain relievers don't touch.

I chose my girls. I choose my girls still. They are my heartbeat. But I still mourn for what we don't have, the future we might have had. And yes, there are those "but you chose" voices - and those who seem to think giving them back might be an option (although they don't seem to think about what they mean by "back").

It's hard. And then she smiles, and it's beautiful and everything slips into the right place. And then she twitches, and the world slants sideways a little, but on Christ the solid rock I stand, all other ground is sinking sand. Doesn't make it right. Or fair, or just. But makes it bearable and I'll take the heartbreak as a gift for my child. When other people let me feel it.