My life.

I’m having a lot of moments lately of, “Holy Sh*t…this can’t be my life.”

I never in a gazillion years did I think I’d be that mom.

The mom with the kid that has to have therapy 5 days a week…sometimes twice a week.

The mom with the kid that spends more time at doctors and specialists office than at “Mommy and Me.”

The mom with the kid that people look at and exclaim, “What the hell is wrong with your kid?”  (Oh yeah…this happened…wait till you read THAT blog…).

But, I am.

I am that mom.

We are gearing up for a special event on October 20th.  I’m raising money for the hospital Evan spent a majority of his life in thus far.  I went to a fundraising benefit last night at my old job.  I walked in to a room decorated with red balloons in honor of Evan.  A wall plastered with hearts of people who had donated to this cause. (Ummm and the answer is “yes”…you can totally donate – http://www.redballoonevent.org/site/TR/Events/General?px=1037482&pg=personal&fr_id=1100)

I talked to people about my son.

I listened as a friend of mine going through her own personal battle told me how inspiring I was and how strong I am and my faith is.

I shared tears with others as I thanked them for their kind words.

I took pictures with our team t-shirt and held up the special little t-shirt our Evan would be donning on race day.

Holy s-balls?

Is this really my life?

You hear and see about these events – the races, the benefits, the jars sitting on counters – for the sick child – people raising money and raising awareness for whatever cause.  You pause for a moment, maybe make a mental note to sign up for run, check your wallet for some spare change to drop in the jar…never really thinking it could happen to you.

But it did.

It happened to me.  It’s happening now.  This is my life.  Our life.  My son’s life.

He’ll forever be that kid that has a special heart.

The kid that was the lucky 1 in 100 to get that heart defect.

The kid that was the lucky 1 in 1000 babies to be born with a cleft lip and palate.

The kid that was the lucky 4 in a million to be born with that rare syndrome that affects his whole body.

Holy s…

Yes…this is my life.

I find it so hard when I get emails or am told that I am an inspiration.

I don’t feel inspiring most days when I pull into parking lots to get out a good cry.  I don’t feel inspiring when I curse the 4 am hour to give medications.  I don’t feel inspiring when I hear my son’s screeching cry as I shove feeding tubes down his throat.

I do what I do…we – the Heartland – do…what we do…because we are the parent of a child that needs us. They need us in ways that aren’t normal.  They need us in ways that make us hate our life and love our life all in the same moment.  They force us to learn about things we never wanted to know about – mortality rates, surgical outcomes, medication side effects.

Holy s…this is our life.

But, it’s ours.  We take ownership of this charge as soon as we’re told “your child has a heart defect.”  We make the choice to let our child fight and not take that fight from them.  We curse that we have to ask them to.  We pray to God and shake our fist at the Heavens in the same breath.

But, it ours.  Our life.  Our son or our daughter.  Our moments we’ll remember forever. Our stories that are legend – the baby who had open heart surgery and not only survived – but is kind of kicking ass all the way around.

I may not believe it most days – as I clean the syringes, call in for medication refills, fight with insurance companies – but it’s the truth.  It’s my life….and you…my blog reader…have been a part of it since the moment you laid eyes on this page.

So, now..make it yours, too.

Don’t just read my blog and “let” it inspire you if it does.  Help me be the voice I so desperately need heard.  Help me advocate for those unborn children who deserve a shot at life despite their special hearts.  Help me advocate for pulse ox screenings in hospitals for newborns because this simple test can save their life.  Help me spread the startling fact that 1 in a 100 babies is born with some form of congenital heart disease…an many of those are undetected.

Let ‘my life’ be and extension of yours.  Learn from my struggles that life can and will go on despite how difficult something you are going through may feel.  Learn from my shortcomings as a parent to help you better raise your children.  Learn from my moments where I slap a 2 year old (I promise you I’ll share that blog…). Learn from my smallest victories that rejoicing in the tiniest moments…are truly the greatest moments life has to offer.

Because, holy s-, yes…this is my life.

But, I’m so privileged I get to share it with you.

 

Comments

  1. First off let me say, your son is precious inside and out. I am a mom of 3 and,no, I haven’t gone through your struggles, but there are days and nights I find myself struggling to be a good parent. Wondering if I’m doing things right or wrong, and I cry a lot as I wonder. When I read and see what your whole family is going through, I realize just how selfish I am, shame on me! I pray that though you may not see or feel peace on the outside, that peace would abound on the inside! XO