The seconds tick by.

Second by second.

Into minute by minute.

Into hour by hour.

Into days.

Into years.

4 years ago we were in the midst of a struggle for a diagnosis. The years of questions evolving from one stubborn cough. Four months later it came down to an unsure “most likely is” but “might not be” diagnosis of Cystic Fibrosis.  (read the full story in parts: 1, 2, 3) 

Last year in May we got the words from the pulmonologist that made Angel’s diagnosis “Absolute“. Because unless you have Cystic Fibrosis…you don’t get psuedomonas.

Then I got the brilliant idea to have Brandon tested.  This spiraled into genetic testing for both Angel and Brandon.

The test results are in.

And still we have no answers.

They both have a defect on the CF gene.

Angel’s is more ‘severe’ than Brandon’s.

In either case the defect found is not a KNOWN strain of CF.  It’s not a known defect…it’s on the gene…but it’s never been seen before.

The official word of the pulmonologist…the one we have trusted for 4 years…the words she’s calling it…the words she’s using…I want to have faith in them.

She says that how she reads it is this:

1. Angel has Cystic Fibrosis. As we have said for 4 years. The defect on her gene is not a recognized defect…but it is CF. It’s quite possible that this unusual defect will mean her CF will continue to be a milder version, we just don’t know.

2. Brandon has asthma.  While he has a defect on the CF gene, also unrecognized, it seems more like he’s a carrier than an actual CF patient. He is to continue to see the pulm for asthma every six months and that is how we will continue.

3. Both of them need to go to a genetic counselor for a more in-depth appraisal of the results. So we can learn more about what it means for Brandon’s future & having children…so we can look more into the oddity of Angel’s defect.

I want to have faith in these words.

I want to have faith in the pulmonologist that has been with us on this whole confusing journey. That is the top in her field. That has guided us this far with an unwavering conviction in everything she says and does. 

My faith is shaken.

Once again I find myself floundering in the unknown.

On a journey that I thought was decided. The path clear.  The stopwatch clicked off.

Someone restarted that stopwatch.

The time is ticking away again.

The uncertainty dragging each second out until it feels like a day.

My faith in the doctors faltering. 

My faith in the tests fading away.

Back into the murky waters of unsurity.

Is it CF? Or isn’t it? 

All I have ever wanted for my children is answers.

One thing I have never received…

Is one 100% without a doubt pure, positive answer.

Not for Riley (we still don’t have a 100% on her, just a ‘likely’). Not for Angel (we thought we had it, but it was ripped away). Not for Brandon (not when he was little & not now).

Why is that so much to ask?

One answer.

I’ve lost faith that I will ever get that.

Just one answer.

Just one.