Strangeness and Peace 

Driving through the national park while the little one sleeps in the backseat.  We are not only camping tonight; we are camping with the cat for the second time this summer.

The cat is not pleased.

Snow drapes the mountainsides already, like making the mount and look like big women wearing heavy shawls.

Are they trying to tell us something about the coming winter?

I always feel happy driving into the mountains.  Of course, we can’t outrun what actually bothers me, what’s on my mind 24-7 it seems, but while driving, it seems like maybe I could.

There’s nowhere to go that can give me what I’m seeking.

Having a child with DBA is a strange state of stuckness – there are people who get out of the maze, but usually they can’t quite explain how, and so you’re left wandering it, rechecking paths you’ve checked 10 times before, looking for new ones, wondering if the risks of that path are worse the possibility you’d find an opening in the hedge, a way to escape, and to finally move forward.

It can be especially daunting when you know that many time, the new path  it just leads you into a new circular stuck lrpattern.

And yet people do get out.  Knowing that, how could I stop seeking an opening for us?

Adahlia just woke up.  

She doesn’t realize she’s in a maze.  It is the only thing she’s ever known.  

So let’s play in it, shall we?  We’ll find all the wonderful things we can… And I’ll keep my eye out for secret passages.

(I’ve heard of one I think I’m ready to try…)

The kitchen and the freeway

There were other things I was going to say on my next post — I have a list of about 50 things.  Stories about how cute Adahlia is, little excerpts from our lives together.

Last week it was 4 weeks since her last transfusion, and her Hb was somehow 11.8.  It was all I could do not to write about it.  I felt we had been granted some sort of miracle.  But a week later, we retested and it was only 8.6.  It’s okay.  Of course, I’m sad about it.  But I am growing to accept it more, and handling it better.

Humans are actually really good at adjusting to things… for better or worse.

The reason I am posting now is because a 14 year old child with DBA died today.

There is a sense among the general population that this blood disorder “isn’t so bad.”  By general population, I mean the billions of people who don’t have it and don’t live in the same household of someone with it.  To give you a sense of perspective of just how rare of a group I belong to:  there are just 600+ people in the private Facebook DBA Support Group open to only DBA patients and the immediate family of DBA patients.  And its a world-wide support group of people of all nationalities.  Some don’t speak English very well, but we try our best to communicate support and advice.

When Adahlia was an infant, I actually had a well-intentioned but completely ignorant family member tell me:

“At least she doesn’t have Down’s Syndrome.  That would have really changed your life.”

People think that because she looks healthy (and that’s because I’ve worked so hard to keep her that way and invested every penny I’ve had and borrowed against both what I didn’t and still don’t have) that she’s fine.  But she’s not.

Having a child with DBA is like living next to a freeway and being told that once a day for 30 minutes, you have to leave your child unsupervised next to it while you sit in the kitchen with the curtains drawn.  She’ll probably be okay to play in the dirt while cars and semi-trucks race by at 70 miles per hour, right?  Of course, you also could get a knock on the door at any moment to tell you she’s not.  But don’t worry! Just go into the kitchen and make yourself a pot of tea until her time by the freeway is over.  Same time, same place tomorrow, right?

To cope, some of us DBA parents tell our kids things like:

“Some kids have to wear glasses.  Some kids can’t walk.  You have to get blood transfusions.  Everyone is different.”

But of course, there is actually a big difference between wearing glasses or receiving blood transfusions every 3 weeks because your body isn’t making its own blood and is constantly on the verge of shutting down.  While I can’t imagine how difficult it must be for a child unable to walk and run and jump, there is even a big difference between being unable to walk and being unable to… well… LIVE without regular intensive medical intervention that your body builds antibodies to and is actually toxic to it (ie, iron overload).

As a DBA parent, we love hearing news of children and adults who have gone into remission.  But it seems like we more often hear news of the opposite.

And let me tell you, hearing that another child has died, at 14, is a pretty big burst to the “it’s not that big of a deal” bubble.

Adahlia is 5.  So, we’d have 9 more yearstogether?   Some children die much earlier.  But we could get lucky, and she might die in her 20s?  But of course I’m being dramatic.  Some live much longer.  A DBA woman in her 40s just recently died.

There are some people with DBA who are alive beyond middle age.  There’s not many of them, and I’m not sure how old he was exactly, but the one I’m thinking of was a grandpa.  Actually now I’m thinking of two of them.  One of these guys told me a year or two ago that I have a wonderful mind and sense of humor because of joke I made in the DBA support group to lift some spirits.  Both of those guys are now dead, of course, but still.

DBA is a big deal.  It’s an F-N big deal people.

My prayers and love to the DBA families that have lost people this year.  They always handle it with such grace and thanksgiving for their loved one’s life.  Saying things such as, “I’m grateful that she had her childhood, even though it was difficult.”

This is a picture of Adahlia after her last transfusion, the one in which she got blood all over her princess dress.

And here is a picture of the path we all three   (Adahlia, her dad, and I) finished just a few hours ago for our backyard.  Adahila and I have been working on it all summer.

I know its hard to “get” something that is completely outside your realm of daily reality.  I’m not asking for pity nor anything else.  All I am asking for is for folks to just let me be who I need to be.

If I seem odd to you, untalkative, less jovial, less interested, or otherwise disappointing to you, remember my beautiful child plays unattended by a freeway everyday, and I’d love to change the situation and I’ve tried, but I can’t… so we’re just waiting, praying and holding our breath, to find out what will happen next.

Does yours?