Friday, August 22, 2014

Today's Numbers

There is something about knowing your child is delayed. It isn't as heart wrenching if it is just you and google trying to figure out where they are developmentally and what you need to do.

Don't get me wrong, Google has seen my share of tears, but Google doesn't judge those tears. Google doesn't feel the need to awkwardly comfort those tears.

It's something else when an expert tells you. When they tell you the numbers. Tell you not to pay attention to them. When they tell you with certainty that insurance will cover this or that therapy because the numbers are so low. That the numbers aren't even on the chart.

When you hear this, its hard to physically swallow. But you must because if you don't tears will stream down your face. And you would be a fool for crying because these numbers didn't tell you something you didn't already know.

The numbers feel more real though. The numbers you can't hide behind. The numbers try to strip my hope. The numbers show me we need to fight. I'm tired and weary. I don't want to fight but I must and will. We will fight for you Porter. We believe in you.

Saturday, August 2, 2014

One Year Ago

One year ago I took Porter to the Cardiologist due to a heart murmur that his doctor heard at his follow up appointment from his hospital discharge. We were assured by many friends that lots of babies are born with heart murmurs. They are common. They heal themselves. It's no big deal.

Ryan didn't come with because we so believed it would be no big deal.

We had a friend watch Abel and Erni in the waiting room as we thought it would be a quick appointment. That poor friend. The appointment wasn't so quick.

The doctor came in and said he saw something. I immediately called my husband and put him on speaker phone.

Multiple Cardiac Rhabdomyomas.

The doctor has seen this a few times. Only ever associated with the disease Tuberous Sclerosis. He said be careful what you google. Only go to legit medical websites.

Then came the neurologist. The nephrologist. The ophthalmologist. The geneticist.

Tuberous Sclerosis it was.

As I reflect on this year, I've learned a whole new vocabulary. tuberous sclerosis. cardiac rhabdomyomas. tsc2. subependymal nodules. SEGAS. cortical tubers. retinal hamartomas. shagreen patch. ash leaf spots. facial angiofibromas. infantile spasms.

I've learned to love every moment with this child. I've learned that he is a precious gift from the Lord. I've learned to love every little milestone he has, even if it is as small as intentionally letting go of a toy. I've learned happy tears are in place when he finally turns his head to your voice. I've learned Ryan and I are the best advocates for him. I've learned it is hard to figure out how to always advocate the best for your child. I've learned to be amazed at how strong my child is.

I've met a community of women who are walking the same path. I get to cry happy tears with them as their two year old finally takes their first steps or their one year old smiles for the first time in months. I get to cry tears of sorrow when the seizures come back in their little ones as they fight to find the perfect combination of drugs to stop them or at least slow them down.  

I wish I could say I've learned not to google so much, but I'm not quite there yet. I wish I could say I've learned not to compare him to other children. I'm learning this slowly. I have learned to love every moment, every smile, every cuddle.

The day before. Big brother holding the little man.

Little did I know in ten minutes after I took this photo my life change.

Daddy soaking up cuddles that afternoon. Such a precious little man.