Batten Disease Conference, 2015.

I signed up when she was alive, screaming beside me.  

Traveling would be hard with her this year, I remember thinking.

Traveling without her was harder by a long shot. 

Before Mabel ever died, we decided that many of us would make the trip to the annual batten disease conference this year, as it was in Chicago; just a two hour drive.  When we started planning the trip we had no idea that she wouldn't be with us but as the time drew nearer to her death, I knew.  

We chose to go anyway, and I think all of us are thankful that we did.  Her absence is everywhere.  She leaves a void that just can't be filled.  So we made the best of all we could.  

Day one:  We saw some of the families that I love and connect with throughout the year; families that are strong and really brave.  We went swimming, had dinner, and then visited more with other batten children, their siblings and parents. 

Day two:  We had a really nice lunch, attended some really great sessions, Chris and I went on a 'life goes on' outing to a comedy club with other families who are bereaved and then later, the kids went on their own outing to midieval times with the sibs group. 

Braden had a really hard time the entire weekend.
  In fact, our boy is still having the most difficult time.  He doesn't leave Mabel's room when he is home.  He has found comfort in watching videos on the computer in her bed and strangely I have found comfort in him being there too.  It has kept me from closing the door altogether and forced me to be present with the space.  But as far as Braden and his emotions go, we are still on a wild ride every day.  He doesn't leave the house much and will hardly go with anyone other than me.  That's ok, and I know it's normal but it's been a challenge; this weekend at the conference proving to be the most difficult thus far.

But none of it was super 'easy' for any of us; not by a long shot. 

After attending the first morning session and listening to a researcher who is new to the batten community, my emotions were raw and high.  I sat beside Elijah, the only 'baby' like my girl and wept as I watched his body jerk and rest simultaneously.  I felt silently close to my girl but also jealous for her that her own body never had this kind of rest.  Even in the movements he couldn't control, he slept comfortably.  What a gift that is!

Eventually I got the courage and strength and wrapped him up in my arms.  I held him for what felt like forever and breathed him in.  I didn't realize how empty my arms had been feeling until they were full of him.

Last year our experience with the conference was amazing.  It was exhausting because traveling with Mabel was never easy, but it was completely worth it.  We met families who I have not only stayed connected with but have really learned to love and respect.  I've walked beside them through some of their hardest days and they have done the same for me.  This community is really strong and very unique and even now, after batten disease overtook her body, I can say I feel really thankful to be part of it all.  

The unity that we share rests in something very tragic and unfair but it is still unity, nevertheless and that is rare.

Nora thrived at this year's conference.  She remembered friends from last year (which was my true hope) and seemed to be excited at the chance to be involved in all of the activities.  

I watched her and without trying to over analyze, I think that she did so well because

she didn't have to say a single word to a single person about her sister and what we just went through.  It was if she knew that they knew and that brought her comfort.  She has really grown in the last several weeks and I can see now with such clarity that the last two years of learning to cope with so many changes in her little world has helped her to cope and grieve now in the most healthy ways that make sense for her.  I am just so proud of my girl.  

This year I was so thankful to have my sister and brother drive up for the conference on Friday night.  They got to meet several families and enjoy a full day of sessions, and a really nice banquet dinner Saturday night.  Ash and Rache drove up on Saturday and met us for that as well. 

I watched my sister and brother walk through losing their niece just a few weeks prior to this conference.  I watched them both hold her the day before she died and I watched them sleep beside me as I slept with her draped across me until she took her last breath.  I saw their bodies slumber in tune to mine, pulling and gnawing for my pain.  I watched their eyes meet mine in that room, all of us reassuring one another with our glances; we would survive this, we have each other. 

And then I watched them rise up from that deep sorrow to a place of really deep surrender.  I've watched them experience sadness, fear, anger, yearning.  I've heard their voices tremble over the missing of their girl.  Each of them, a special piece she held in their hearts. But I've seen peace surpass even their own understanding.  

I have felt them uplift me just by walking in the room.  Where they are, I am ok.  

 My prayer is always that wherever we go, we would shine the light of Jesus.  When we smile, let people know Him.  When we laugh, let people know Him.  When we cry, let people know Him.  When we bind together, let people see it and know Him. 

 

And that's exactly what we've done.  

Silently, we've sworn to one another that we won't turn around and walk away.  We won't run from this awful, horrendous thing known as grief.  We won't turn inside toward ourselves and shut one another out.  Oh no, we need each other far more than that.  

Never once have we uttered it aloud but we know.

And we have never left one another.  

The conference was really great.  

I have been asked if I am glad I went, if I plan to go again, will I continue to go, was it difficult, were the kids engaged, did I get anything out of it?

The truth?

I'm glad I went.  I saw hopelessness in the eyes of several families and I prayed in those moments that in us, they would know they will survive.  I prayed that we would be a beacon of hope and light to them on their darkest days.  

I plan to go again for the same reasons, of course.  

It was difficult.  Far more than I anticipated.  

The kids were engaged and I learned alot about what that means and doesn't mean.  For my children; the children in this situation who have lost a sister; the only people here who know what that feels like, this conference is everything.  It will be a vital part of keeping them connected to her.  And in turn, to Him.  

I left with a few pieces of information that I didn't walk in knowing but for the most part, nothing too new.  Batten disease is a horrible thing and it is stealing the lives of our children.  But it is not stealing the joy from the people who love them.  And that is going to need to be a critical reminder on my hard days ahead.  It was easy to find joy when I was holding her in my arms, but where can I find it now?  Who will I turn to and hold on to now?  

When I think back to this conference I will remember the families who are walking out true joy in the midst of suffering and I will purpose myself to never forget. 

Last year we loved the banquet, wheelchair parade and dance party.  This year was no different.  In fact, it was amazing.  Braden still had a really hard time and honestly it's hard to even type out how I feel about him surrounding the loss of his sister.  He feels so big.  His heart is broken.  And mine is just useless when trying to comfort him.  All I can do is what I'm doing and that is loving him so big through it all and being really patient.  I just pray that everyone in his life will continue to do the same for the duration; no matter how long it takes. 

On Sunday morning, the last day of the conference, there is a very special memorial service held for families who have lost children to this disease or anyone who wants to pay special tribute.

 

I haven't written or spoke much about it, but there were many, very specific, researched and thought-through reasons why our family didn't have a public service when Mabel died, so to sit in that room and walk through those motions; that was very hard to say the least.  

However, it was something I never want to miss.  Not ever. 

I sat and watched what felt like hundreds of names and pictures scroll across the wall in front of me.  Beautiful children and adults of all ages affected by this disease that ultimately took their lives.  It was all consuming.  It was beyond humbling. 

I sat and watched people who have now become some of my dearest friends walk the aisle to light a candle in memory of and to honor their child and I felt like I would vomit.  

Sometimes none of it feels real but in this moment, nothing in the world felt more true.  

My child had batten disease.  She was going to live to be between the ages of 4 and 6.  

She died.  

It's so unreal.  

And yet, I'm living here without her. 

This is the time when Nora checked back out emotionally and decided not to help us light a candle but Braden tapped back in and decided he wanted to.  Both true to their own coping mechanisms, I was so proud of them in this moment. 

It was a beautiful and touching service and although no parent should EVER have to sit through it, I am thankful that we are loved so big.  I am thankful for the support we have received and continue to every day.  I am grateful that this journey is not one that I have to walk alone.  It was never intended to be that way and to that end, will never have to be.  

All in all it was a really great experience.  We laughed, cried, met new people, made new friends.  We danced and talked and swam and relaxed.  

Just like we are doing in day to day life; we mended joy and sorrow throughout the weekend. 

 

 

To our batten family:

We love you.  Thank you for your unending support and selflessness.  Never have I been more grateful to know the kind of people that I am surrounded by.  Never have I felt more thankful that my children will grow up knowing those same kind of people.  May they become more like you!

To the BDSRA:

Thank you for all you have always done for not only Mabel, but for Nora and Braden as well.  We feel really wrapped up in your love and support and that has meant everything to us.  

I would never have chose this life to live out.  If given the opportunity I probably would have walked on by.  Instead, God handed it to me, wrapped in a delicate, dark haired beauty and entrusted me with the journey.  I will forever do my best to turn it around for His glory.  

"The one who showed Mercy.  You go and do likewise."

--Luke 10:37