The Kids are Alright?

Daddy is a father of two and grandfather of five. Lately the sense of loss in relation to Daddy/Papa's progression has been quite acute. As a mom, I'm supposed to have the answers and offer comfort. That's difficult when I'm struggling just as much as my kids.

Over the last few weeks, my girls especially have struggled.  We’ve shared several tear-filled conversations: Why did Papa have to get this disease?  Why won’t God fix Papa? Why aren’t Doctors only working for a cure for FTD? Will Papa forget us?  If Papa forgets Jesus will he still go to heaven? Why? Why? Why?

In life when we struggle with anything – we usually find ourselves wrestling with the often unanswerable "Why?" When I can’t answer that question for myself, how am I possibly going to answer that for my elementary-aged children?

My tactic: I cry right along with them. 

I don’t know why my Daddy got this disease, nor at present do the doctors.  As for God healing my dad, it could happen, but I’m a realist and I don’t want to cling onto something that might not happen in this lifetime.  Nor do I want my children to relate to God as if He’s a genie if Daddy is healed or that God is a monster if Daddy isn’t fixed.  My oldest often proposed that doctors stop working on cures for other diseases across the globe and only focus on FTD.  To that proposal I try to explain that people whose loved ones suffer from any disease are just as sad and upset as we are with Papa’s FTD.  No one wants to lose their loved ones, to see them suffer, drift away and ultimately die.  Death is loss and separation and we want our loved ones whole and near.

Every parent has their own parenting style.  Mine includes being pretty frank and honest with my kids.  When dumping a mountain of reality on them, of course I take into consideration their age, maturity level and individual personality.  How I tell one child something will have a different approach from how I tell another.  The girls understand Daddy’s disease a lot more than our youngest does.  There is no way to sugarcoat the fact that Daddy will probably forget us or, at best, not be able to speak. Faced between these two, not speaking is what I’m hoping for.  Even as an adult there is so much fear in that fact – how much more so as a child.  It’s hard to distinguish that if he forgets us it’s not by choice, or that we matter little to him; FTD is a horrible disease and it robs the sufferer of their dignity, humanity and ultimately life.  So yes, though Papa may forget us, it has no bearing on how much he loves us. 

As to the deeper theological questions, I’m fortunate to have an in-house theology nerd.  My husband has spent his life & education studying theology, philosophy and the Bible.  I answer what I can then as an easy out say, “you need to ask your dad.”   The other day, my oldest and I were lying in bed: talking and crying about Daddy/Papa.  I mentioned God and she says, “Please don’t talk about Him; I’m very angry with God.”  I’ve been there.  I encourage her questioning her relationship with God.  She needs to develop her own faith.  For most of us our faith grows strongest during hard times.  If we believe that God knows our innermost parts, then doesn’t it make sense to shout out or hurt, pain, anger, frustration, etc.?  Like Shrek says, “Better out than in.” 

Watching Daddy/Papa progress is very difficult.  We’re two years into the diagnosis of a disease where the life expectancy is on average 7 years after diagnosis.  He changes all the time, one week struggling to do what he easily did the week before.  It’s very hard for children because we have to walk this fine line of spending quality time with him, watching to see if he becomes agitated.  It’s a heavy burden for an adult, much less a child to pay close attention to him in any situation.  In this journey we’re on – it’s easy to see the sad, difficult aspects of our life.  My aim is to have these kids enjoy and love their Papa as much as they can and receive what he can give until he’s gone. 

The other day, Mama and Daddy drove up to drop something off at our house.  My kids ran out to see them and say hello.  Daddy was blowing kisses at my younger daughter – it was beautiful.   I’ve become very closed off emotionally and physically – it’s something I’m working on, but it’s one of my coping mechanisms.  Seeing this beautiful, pure moment from my Daddy, I said, “I want to get in on that.”  So I reached into the car, gave Daddy a hug, he pecked me on the cheek and told me, “You’re a good girl.”  Being me and unable to process the emotions at that time, I countered back, “Definitely, when compared to my brother.”  This made Daddy laugh, I said goodbye and walked back into the house – where the tears flowed. 

None of us know when the beautiful moments in life are going to pop up.  No matter what a family looks like or what they are experiencing – we’re all living life.  Every day we experience the beautiful and the ugly, the heart warming and heart crushing, the sacred and the mundane.  The extreme pessimist would focus only on the bad things and see no hope.  The extreme optimist would focus only on hope and not feel the reality of the situation they are in.  I choose to see the beauty amidst the heartache.  In contrast it makes the beautiful moments so much lovelier.  I choose to love and to be loved by my Daddy, cherishing, each “good girl” moment. 

“Now these three remain: faith, hope and love. But the greatest of these is love.”