I used to think.

I used to dream of my perfect little baby.
That baby was always healthy, wrapped in little packages of pink or blue.
Perfect reached every milestone right on time.
And grew up to become independent and successful.
Because that is perfect after all, isn't it?

Now that I am older, I know that perfect comes in many ways:
Perfect is two grown men who love their family no matter how it's packaged.
Who made decisions to follow their dad, even when it seemed crazy.
Perfect makes mistakes and learns from them.
Perfect is conquering anxious attachment.
It's learning to trust again.
Perfect is wrapped with bows of surgeries and scars.
Each worn proudly as a badge.
It is bravery to leave everything you've known...... without your permission, when you are two.
Perfect is leg braces, and gait trainers and working hard in therapy.
It pushes through obstacles to find another way.
Perfect rides in a wheelchair.


I used to think that healthy was all I could handle.
I used to feel sorry for the "less fortunate."
I'd hug my child a little tighter and be thankful I didn't have to deal with THAT.
Now that I'm older I realize the secret they knew.
Healthy is lifesaving surgeries.
It's slaying emotional demons.
Healthy is learning to care for siblings who need help.
And being a better person because of it.
Healthy is holding your head up even when it's hard,
and chewing,
and waving bye-bye.
It's rolling to get where you need to go.
Healthy is being extremely brave on surgery number six.
It's not dreading surgery number seven.
Healthy drools when it concentrates.
It's living each moment to the fullest because there are no guarantees.
That's the healthy I am blessed to have.

I used to think I couldn't wait to grow old together.

You know, just the two of us.

Traveling at our leisure, not a care in the world.

Now that I'm older, I realize there is so much more than being well-traveled.

It's finding fun locations that are drivable with all the medical supplies.

It's knowing what places are wheelchair accessible.

And traveling in a group of three.... or more.

I used to think I could never deal with this diagnosis.
I would have never knowingly wanted this to be what we are facing.
No one does....
But then God gave us YOU.

And everything I thought I could handle has changed.
YOU have made me a better person,
a better Mommy,
and brought your Daddy and I immense JOY
 just by being you.

*We had our Geneticist visit today. Although it is not cut and dry, Celia DOES have some form of Mitochondrial disease. The exact type is still uncertain, although it seems to be Complex I (don't google, there are 3 subtypes and we don't know yet where she falls) How it will effect her and her prognosis, only time will tell. Ordinary illnesses can be extremely serious. Dehydration can be life threatening. In their words, she is"fragile".  The good news is, everyone agrees that her cognitive ability is great. We are so thankful for that. We will be starting an intensive vitamin therapy under the Drs direction, and will be monitoring her every 3 months to see how she is responding to it. It is the only course of treatment for mito kids, and it isn't always effective.....

As always, our hope and trust is in God alone.