Monday, July 28, 2014

Batten Conference 2014

"but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
Isaiah 40:31
 We just returned home from a 4 day weekend trip to Columbus, Ohio where my dad, the kids & I attended our first batten disease conference. 
 I remember my dad wanting our family to attend last year but we had just returned from our Make-A-Wish trip, I was venturing my way through a divorce and I just didn't think that I could emotionally muster up the courage to try at that point.
Even this year, it took a little persuading from my dad to really convince me that we needed to do this.  I needed it.  Mabel needed it.  And especially Nora & Braden needed it. 
 So I paid for our registration and locked us into going, even though I still felt hesitant, mostly because it's so much work to do anything with three young kids, let alone with Mabel and all of her care.  Being away from home is just a challenge and it can be overwhelming.
 I knew in my mind what to expect at the conference.  Most of the other families had prepared me through social media for the events that would take place, the seminars that I would want to attend and even those that I might not want to be a part of.  I was prepared to meet these families who have carried me through so many dark days in this journey.
There is so much to say about this weekend.  From the moment we got to the hotel and I started to see familiar faces, I was in complete awe.  Mostly of the strength and courage that these, my fellow friends, exuded but also the warmth that was present between us. 

 There was so much to do, so many people to see, so much to learn and a lot to take in.  Over all, I want to never forget the experience of this first conference and the joy it brought to my heart.  I have felt many things in my lifetime but the way that I felt this weekend was entirely new. 
Feelings of acceptance, unification, sadness, triumph, bravery, grief, and hope joined all of us as we walked through the days together.  It was something I've heard others speak of and am so glad that I was able to finally fully understand it for myself.   
 One thing that I walked away from this conference understanding even better than before is that this disease is a distinct journey and distinct process for everyone who is battling it.  There are different phases of that journey and it looks different in each of us. 
I listened to moms talk passionately about their efforts to find the exact mutation that is causing their child's symptoms.  I watched mother's cry from across the table as they spoke of the compassion our children are teaching the world and at how unfair that felt, even though it was a blessing.  I listened to mother's & father's nonchalantly speak about their baby dying in the coming days with such strength and poise that I can't even describe.  I sat with parents whose children left earth for Heaven just months ago and I saw them laugh, eat, cry, and hug with deep gratitude for life and appreciation for their children and the love they have for them. 
In it all, in each of them, I still saw JOY. 
 When I looked at their faces and I heard their stories of searching for a diagnosis, receiving answers, battling with doctors, fighting for medications, accepting the fate of this disease and sometimes ultimately burying their children--I saw joy in heartache.  I saw redemption in suffering. 
I saw proof of a living God among us. 
And I was refreshed because of it. 
 You know, while most families are taking summer vacations to the beach, boarding a ship for a week long cruise or even just staying home to enjoy one another, I was loading my father and children into a car to experience the most life altering 4 days of our lives. 
My children's path isn't like others.  In fact, it's very very different.  And this weekend I was able to show them that they are not alone and it is ok.  They connected with other families whose lives look very similar to ours; from tube feeding to medication giving to wheelchair pushing, to suctioning and even talking about death often. 
They made friends with little girls and boys who have lost a sister or brother to this disease or who inevitably will and on their faces, I saw hope.  Comfort.  Ease. 
And Joy.

 In the last two years I rediscovered a lot about myself.  I matured.  I realized that all of us walk such different paths that it's almost impossible to fully understand another's, only learn to respect it.  And this weekend I was so grateful that I had walked that path and ended up here. 
I looked around and was able to fully appreciate, respect and understand the choices people make, the decisions that are involved and the outcomes that are results.  Each so different, yet each so right for every individual family.  And ultimately, each so very beautiful.
 The weekend was incredibly special for many reasons but more than anything I am grateful that we attended for Nora and Braden's sake.  They walked away having learned a lot, having made new friends and having the honor of throwing out the first pitch at a really amazing baseball game on behalf of their sister and the BDSRA. 
It was incredible and an experience we will never forget.  These memories are etched on my heart forever and that's worth more than I can ever express. 

 Mabel had an amazing weekend. 
I think I came home understanding more about what this disease is overall and what I learned is this: It looks different in every single person that it affects.  It takes a different course and follows no direct path.  Mabel is still very active, very alert and very 'healthy' compared to many children I saw in the last several days.  But being there truly reminded me that we have to be alert because at any moment, on any day, that could all change very quickly.  Our girl may be well and alert one day and nearly absent from me the next.  There is no warning, no clear indicator and no users manual for batten disease. 
 It was eye opening and truly inspiring to see the ease with which these children are loved and cared for. 

 I also came home with an extreme, deep pride for my older children. 
It isn't like I don't know it already but my kids are incredible!  They are brave, knowledgeable, mature and so very wise.  They handle conversations about medicine, progression and death as if it's normal.  I came to realize this weekend that past the sadness of that, it is very endearing and will very much mold them into who they will one day become.  It excites me to know that Mabel will help create in them a world that is full of strength, independence and compassion. 
Their life is different than most, but it is their normal and they have already accepted that.

 We met, in person, so many of our online friends.  I have spent 2 years bonding with people whose voices I had never heard and finally I was able to wrap my arms around them and hug them.  I kissed their children, looked at their eyebrows, mouths, fingernails and breathed them in. 
I truly fell in love with each of them. 
 Nora and Braden proudly pushed their sister in an emotional kids parade Saturday night.  I was moved at the beauty of it all.  There really are no words for how incredible these children are. 

 When it was time to leave I felt an overwhelming sadness.  It's just hard to come back to reality.  It takes some time to soak it all in and emotionally decompress.  Life outside of our little batten island was still happening over the weekend and I have to reintegrate myself into that.  But it was worth it. 
I'm so grateful to have had this opportunity.  I'm so thankful I got to share in it with my dad.  We talked through many things and I think we both walked away with a lot of peace, maybe some unanswered questions but a sincere gratitude for the experience as a whole. 

Saturday  night Nora said to me that all of the talk about batten disease was making her sad.  I hugged her tightly and said "me too, Nora, I understand."
It made me feel like I'm doing a good job at not making this disease the center of their world.  I pray every day that there would be a good balance for these kids.  I want their lives to be full of happy childhood memories and not consumed every day by the heaviness that has, at times, taken over my heart. 
It helped me realize that I don't just 'feel' happy lately.  I really have been.  I really am.  And they feel that.  So as we move forward every day in this journey, I hope that there continues to be a balance for all of us.  I hope that I can continue to fall deeply in love with this wonderful man.  That Nora and Braden can feel happiness in their day to day lives and that Mabel continues to exude the joy of our Father, no matter what path this batten journey takes us on. 
If we can accomplish that, I know that we will be doing the work that God has called us to.
A work full of joy in sorrow and redemption in tragedy. 
He is a God of renewed strength and this weekend, I felt Him near.  

1 comment:

Unknown said...

Beautiful words and beautiful children with a beautiful Mother! My first born, Jason, was a "redhead." Or, as he preferred to call his hair color.....ORANGE. :) Batten Disease is disgusting. I despise it. I wish, hope and pray for a cure.
Kim Brown