"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Wednesday, February 24, 2010

We Knew Nothing

Three years ago, we knew nothing.

We knew nothing of NICUs.

We knew nothing of ventilators, intubations, and extubations.

We knew nothing of dysmorphic facial features.

We knew nothing of Ativan and Fentanyl.

We knew nothing of corpus callosums and kidney problems.

We knew nothing of suctioning and saline bullets.

We knew nothing of congestive heart failure and Lasix.

We knew nothing of possible seizures, spinal menengitis, and lumbar punctures.

We knew nothing of PDA's and coarctation of the aorta.

We knew nothing of The Children's Hospital in Denver.

We knew nothing of doctor's rounds and nurse's compassion.

We knew nothing of Pierre Robin, tracheomalacia, and oral aversion.

We knew nothing of tracheostomies and g-tubes.

We knew nothing of DMEs and home equipment and supplies.

We did know about IUGR and a two vessel umbilical cord.

We did know about ventriculomegaly.

We did know about frank breech presentation and a scheduled c-section.

Compared to what we didn't know, the list of what we did know is very short. We were innocent. We were naive. We were ignorant.

But, more important than anything on either of these lists, was one more thing we did not know.

We knew nothing of the strongest love known to humans: the love between parents and their children. We knew nothing of how far we would and could go to make our baby better, how nothing else matters in the whole world when your child is sick. How "sleeping" in nothing more than a closet with a mattress was comparable to a five star hotel if it meant that we got to be across the hall from our sick little girl. We knew nothing of the love that would allow us to move Heaven and Earth to save our precious baby's life so that she could come home with us and live a "normal" life someday.

Three years ago, we knew nothing. And today, even though we know more than we ever wanted to about raising a special needs child, we are grateful for the education.

I made and posted this video a year ago in honor of Marissa's second birthday. A year later, just before she turns three, it is still poignant and sums up how I am feeling today.


ANewKindOfPerfect said...

Wow ..... I seriously have tears running down my cheeks. Marissa is SUCH an amazing girl! I can't believe how much our little ones overcome.

Kendra said...

That video made me cry the second time around, too! Thankfully I still don't know what most of what you said means, but I thought it was very well said from a mom's heart. What a little sweetie! So exciting she's almost 3! Adelyn loved the video, by the way...."BABY! Baby!"

The VW's said...

It is amazing what you can learn in a matter of 3 short years! What amazes me the most is the profound impact it can have on you as a person though! Our little ones are the best teachers that I know!

Marissa is such a blessing to this world! I can't believe that she's almost three?!!

Thanks for sharing your inspirational words and thoughts! Love and Hugs!!!

Colleen said...

Oh my goodness, that was beautiful!! It's true that we didn't know about these medical terms and hospitalizations, but what we do know is how much these kids touch our hearts and lives in so many ways!

Nana and PaPa said...

Well...ya did it agian...you made me cry...lol...imagine that..all kidding aside, it's amazing to look back to 3 years ago at the ups and downs and the emotional rollercoaster of not knowing whether Marissa would even survive, and fast forward to today and how absolutely AMAZING she is and how many positive changes have occurred. Wow..Marissa has truly been a blessing to all of us...family, friends and blog family. The song is quite approriate for your video. Until you are a parent yourself, you truly don't completely understand the sacrifices a parent is willing to make for their child. Marissa is coming up on a wonderful milestone. Thanks for the look back in time. We love you guys
Nana & PaPa

Lacey said...

Sweet, sweet video. She is so cute, and I love her white hair she had even at birth!

Michelle said...

So close, yet so far away...yes? Crying now...

Christine said...

You made a beautiful video! Itbrought tears to my eyes! I love her little face and how you can tell that it's Marissa from the first day she was born.
Thanks for sharing it with us.

Jessica mommy to Alex/ RTS said...

Love this! Love this!

Team Carter Jay said...

I LOVE it!!
What a sweet sweet girl :)

DevonLeah said...

I started to cry before pushing play lol that hits so close to home and I totally felt you on your post. What we have HAD to learn is unreal, but you dont think twice aabout doing it for your precious one. Precious, precious video....Love to you all!!!

Sherry C said...

Beautiful post, all this was new was to me too I barely stepped in a hospital before Ashley was born except to have my kids. I don't know why I don't have your link on the side bar of my blog I'm going to add it.

Michelle and Sean said...

What a miracle! Great post! Truely amazing your journey!!