Sunday, April 16, 2017

God showed up...

I'm a huge movie buff. To the point that I often converse in lines from different movies. One of my favorite lines is from Forest Gump. Remember when Lt. Dan goes to help Forest work his shrimp boat and they can't seem to catch a break (or any shrimp for that matter) and Lt. Dan asks Forest, "Where the hell is this God of yours?", and Forest responds, "It's funny Lt. Dan said that, 'cause right then, God showed up."

I just love that last line. And it seems appropriate to share on Easter Sunday the information we found out, on Good Friday as it happens, that we've waited Tess's whole life to hear; what makes Tess, Tess.

But before I get to that I want to remind you of a blog post that I wrote way back when I first started writing the Travels with Tessie Toodles blog. It's the one called, Are you there God, it's me, Joanna?. (click here to read that post).

Basically I wrote about God showing up.

In that post I wrote about some very scary genetic testing that Tess was having done when she was around two years old. How I was basically sobbing hysterically while praying, praying, praying to God, but this time, instead of asking God to "fix" Tessie and make her healthy, I prayed for strength and courage and God's grace to lead me thru whatever may come.

And God showed up. Those big scary tests? They led to nothing. I had nothing to fear from them. They were not the reason why Tess was like she was. They got repeated several times because Tess seemed like such a candidate for a few of the diseases and the testing was done by some of the best doctors at one of the absolute best hospitals in the world, Boston Children's Hospital. But nope, negative on repeat.

You can only imagine my relief.  All of those scary and horrible things I had read about, I could now let go of and move on to hope instead of despair. The only down side was now we had run out of testing options available to us at that time and had to make some sort of peace with the not knowing. To me, it was a fair trade off. Not know, or know and be absolutely frozen with terror? I'll take option one please and thank you.

Fast forward to this past Friday. Because I am a firm believer in God's timing, I found it no coincidence that we found out Tess's genetic results on Good Friday. The day God gave his only begotten son out of his love for the world.

I was nervous when Dr. Craig called and she cleared her throat and said, "I never know how to approach parents with news like this so I'm just going to put it out there."

Then she told us and my very first thought was "God is good."

We talked about what it meant for Tess and us as a family and plans that would need to be made at some point as well as more meetings with palliative care and then we hung up.  I promptly burst into the big ugly cry because my brain went back to that space I was in twelve years ago when I was praying for strength and courage should one of those very scary tests come back positive. I felt as if no time had passed and I was THAT Joanna again, not the one I've become since. I was scared and sad until Charlie looked at me with tears in his eyes and said, "But what's changed? Nothing. Nothing has changed for us or Tess. We've been living this for almost fourteen years. We already live the scary, the terrible, the horrifying and we're still all okay. But now we know why. And that can only be a good thing."

And he was so right that my brain snapped right back to the present and I even laughed at how stupid my overreaction was. Although I have to say in my defense, I honestly think it was a type of PTSD response. Like a flashback in time that I just couldn't handle for a minute until Charlie brought me out of it with that one simple question.

What's changed?

Now you may be wondering how my initial reaction to hearing the news was, "God is good.", when my reaction/mini breakdown was so seemingly the opposite.  It's because Tess does in fact have one of those very scary diseases that she tested negative for all those many years ago. And God is good because I was given the GIFT of not knowing until I was strong enough to handle it. I was shown God's love and mercy because I got all of those years of living with hope instead of waiting in dread for losses. Blake, Ellie and Tessie got the mother they needed and deserved instead of a shell of a mom who was in a state of total devastation.

Because I was so sick myself at the time, fighting cancer and living with chronic pain, I was already scared. Add a child with a rare and progressive neurological disease into that mix, and I know in my heart, I would have not handled it well. At all.

God showed up way back then when those tests kept coming back negative and God showed up again on Friday when we did get them and I was in a place where I was strong enough to handle it.

Tess has Rett Syndrome. (click on it to learn more if you're so inclined)

Rett Syndrome is a progressive neurodevelopmental disorder that almost exclusively affects girls and is considered to be a rare disease. Because Tess can't just do things normally, not even in the rare disease category, one of the genetic mutations she has for this has never been reported before. We will meet with a geneticist in July to go over everything in more detail but from everything I've read, Tess is on the severe side. By a lot. But (thank you Charlie) I say again, "What's changed?" It's almost laughable to me now, to think back to the me then and how absolutely terrified I was of the words, "gtube, apraxia, loss of skills, breathing problems, heart problems, scoliosis, seizures, aspiration, etc etc". You know, all the words that are a part of our NORMAL daily lives now and have been for years.

Besides the peace of finally knowing, and already starting to find our "tribe" so to speak, in Facebook groups and online sites, I also got a gift I didn't even know I still needed; I did absolutely nothing to cause this and
could have done nothing to stop if from happening. I thought I had made my peace with this a while ago and I basically sort of, kind of, had until Dr. Craig told me that. I literally felt a weight slip off of my heart. I didn't cause this. I didn't hurt my baby. Tess's genetic coding is considered a "spontaneous mutation" and it most likely had already set itself up before I even knew I was pregnant.

In other words:

Tess was, in every single way, always meant to be Tess. She is imperfectly perfectly made. And to quote Ellie, "I get a lot of satisfaction from that."

This also means that Blake and Ellie are not at any higher risk for having a child born with a genetic defect than anyone else. It was just the 1 in 10,0000 luck of the draw.

I say again, God is good.

And God showed up and just keeps showing up. And we are blessed. I can't think of a better day than Easter to share Tess's, and our, big news.

Happy Easter, everyone!