Four Little Ladybugs

Today we finally got through the red tape of coordination and got Eric's DNA sample overnighted to Baylor's lab in Texas. A thorn out of my side and hopefully a way to lead to answers. 6 years ago I was OK without having answers, now if I can get them I want them. Although it's scary to look in the face of your genetic constitution and how it's manifested in your children.


This is the week that Ava's depletion panel sequencing should be completed. It bothers me that someone out there will know something that I won't be able to for about another week. My mind has been working over time thinking of all the scenarios of what we may or may not be faced with. Trying to prepare for the worst and hoping for the best. This is extremely difficult for us as we grapple with the impending information. On one hand ignorance, while not really blissful, is easier than facing the facts. One the other we feel beaten down and unable to deal with this anymore. There are just so many areas that we are concerned about. In a way it's good that there's too many to enumerate. Then we don't get bogged down in the details. As the top of the page says 'God is in all the details'. When you think about what it takes to form the very gene that we are having sequenced and all the options each piece of DNA holds, it's impossible to not see that God designed us down to every allele and variation therein.

I can't tell you how many times since Ava's birth I've said "I can't do this anymore" or something of similar sentiment and intensity. Then I see today,and this minute and think: OK, I don't WANT to do this anymore (and sometimes I feel like I will crumble right there on the very floor I stand on) but here I am still "doing this". By His grace and His grace alone I can do this. Whether I want to or not. I am. I hit a bottom and something happens to pick me up and keep me going. I take comfort in that as I have no idea how long of a haul "this" is or what "this" we will be faced with.

I did a little research this weekend on the specific gene that the geneticist thinks housed Eric's problem. I kept a pen and paper next to me so I could look up some of the medical jargon for a clearer understanding. I feel like if we get the news that there is a mutation on POLG1 then I need to know what they are thinking. This was mostly motivated by the geneticist's statement that if there is such a mutation then Ava may need a liver transplant. What I found was confusing and somewhat encouraging at the same time. What I learned for sure was that the hope I hold close to my heart is not unrealistic.

I am finding that it is incredibly difficult to know how to advocate for our daughter when I don't know what we are up against. I have a million questions, all at this point, hypothetical. But I don't want to get caught off guard. No one makes good decisions in that situation.

Knowing all this I can take great comfort in that God is in control. When the questions swell and I feel as if I will be overcome I give my concerns to Him. My mind quiets and the dust begins to settle. Sometimes my questions come into focus and I narrow in on that path for research. I know He is guiding us. I know that it is because of God that Allan and I are able to face each day before us during this agonizing wait. I know that these results may very well be inconclusive, and He will continue to guide us. We ask Him to let us know- when and if Ava needs to go to the hospital, which one to go to, when to slow down the testing, which test to run next, how to feed Ava. We've committed it all to Him. I find fault that I try and control the information. But the truth be told, I really am glad that I am not the actual one in control.

One moment of clarity that I recently experienced is that Ava is no Speedy Gonzalez. At birth she was a poky eater and fairly laid back. She is still poky. She is making positive progress, but won't win any races doing it. I think I need to get her the story "The Tortoise and the Hare" so that one day I can best explain how she and Elaina are so different. Eric made great and quick progress and then quickly backslide. Ava just chugs along, wide-eyed and as cute as can be. She gets really feisty when she's hungry or feels that she has suffered an injustice (shots, blood work, sisters on her head while she's hungry). She gains skills, slowly but surely. I think she is slow in weight gain because she burns the calories while she eats. She is that S-L-O-W. (Or I'm that impatient.) She continues to amaze us everyday. The other night she was super interactive. She was intent on watching my mouth. I yawned, and she yawned back at me. It was precious.