On September 17th, 2015, Landon and Nolan will turn 2. TWO!
When you’re battling a life threatening illness, any birthday is worth celebrating.
When you’ve been diagnosed with Lissencephaly, turning two is extra special.
I can still remember like it was yesterday:
We were in the darkened, quiet room where our ultrasound tech was working hard to help us learn everything we could about our little guys. We had already been through quite the roller coaster of emotions the last few weeks. “There’s a little extra fluid, but hopefully it’s nothing” “It’s Dandy Walker, ACC, and absent CSP, there’s nothing I can do.” “You can still terminate” “We see a little connectivity, I see no reason to suspect this is life threatening”.
After all that, we were at our second visit with our specialist of choice and were moving forward no matter what.
We were still excited about the recent developments that there actually were some signs of hope in the cavum septum, corpus callosum, and vermis where we were previously told the brains were in really bad shape.
Things weren’t normal, but there was hope.
And then our Doctor figured out it was Lissencephaly.
I’m paraphrasing, but in the gentlest way possible, she delivered these impossible words:
“I know we talked last visit about some signs we were excited about. But we also said we were hoping to see some more wrinkling on the brain. And that doesn’t appear to be happening. I’m afraid we’re looking at Lissencephaly. And with Lissencephaly, there is a high likelihood of severe developmental delays. And I start to worry more about whether or not we’ll celebrate that 2nd birthday.”
Amidst the tears, the fervent googling began, and I kept seeing two over and over. Life expectancy, two years.
Since that time, I’ve seen posts and updates about families who lost their angels well before that 2nd birthday. But I am thrilled to say that I’ve also gotten to know many families and little fighters who have lived and continue to live well beyond those expectations. I assure you both of those groups would tell you that life is precious, and that tomorrow is never a guarantee.
Within our own family, just since their 1st birthday, we’ve had nine hospitalizations, and two occasions where Landon’s pneumonia became so advanced, that end of life discussions were had, and we feared that he might not make it back off of the ventilator.
So celebrating two is a big deal.
And “tomorrow” is never a guarantee.
And you’ll be hearing a lot about this milestone. ;-)
Like last year, we plan to encourage a “hero challenge”. Rather than send cards, gifts, or mementos to the boys, we are asking that you do something nice in their name. Help them by helping others in ways they aren’t able. More details will follow, and we’ll have a couple of specific projects you can join in on if you so choose. I just wanted to put out this reminder that we have something to celebrate very soon, and we would love your help in making it an extra special occasion.
The theme this year will be “Let your light shine”. And shine we shall.