Make room on this boat.

I walked the halls of the children’s hospital again yesterday.  It wasn’t any different. Nothing new to report.

My boy was there for more outpatient stuff, therapy, doctor visits and the like.

A couple of weeks ago, we made a couple of stops on our way out to drop off some treats to a couple of families who were going through some pretty rough stuff.

Evan and I were escorted to the private conference room for Jackson’s family.  Jackson is battling a new diagnosis of leukemia.  Yuck.  Three years old…he just wants to play cars and trucks and I’m sure watch, “Bob the Builder” or its equivalent.  His parents are friends of friends of friends…etc, etc.  I just felt the need to send them some love….knowing all too well the ache you feel while you sit and wait on “results” and “tests” and “prognosis reports.”  I cried as I awkwardly introduced myself…luckily…someone in that room remembered us and has been following Evan’s journey.  I cried as I uttered the words, “I don’t know what it’s like to be told my child has cancer.  But, I do understand what it likes to sit and wait in fear…not sure if your child is going to make it.”

I realized then….my Heart Mama journey is unique and special in its own right…but as I walked the halls that day and everyday, as I saw tired parents wearing the “Mom” badge, littles wearing protective masks, parents escorting siblings to visit their “brudder or sister,” children and babies of all shapes and sizes going through their own personal battle and journey.

Within the walls of this place, the place that saved my boy, there are parents holding onto hope that their babies will see another tomorrow.

Within the walls of a home, there is a an empty crib, and empty bed, a stuffed animal waiting for it’s friend to come home and hug it – all it knows is that his “boy or girl” is somewhere and is sick.

Within the hearts of a Mama and Daddy, there is the gnawing fear that lingers in his/her mind, “Will I outlive my child?” And wonder…is there any kind of mercy in this world?

I realized…we’re all in this together.  We’re all in the same boat.  Sailing away on a journey we never thought we’d be on.  Braving treacherous waters…and just begging for some calm.

Mamas, Daddies….any parent that has heard the words, “I am so sorry…” followed by painful words and medical terminology that shouldn’t be in the same sentence as their precious child’s name.

I wear my Heart Mom badge with pride and honor.  I do.  I’d would have rather not been given this charge…but I was.  If you’re just joining our story (thank you, first of all), you’ll see how passionate I am about spreading awareness of Congenital Heart Disease (CHD for short).  I didn’t know much about it when we got the diagnosis for Evan over a year ago.  I didn’t realize how common it was – affecting 1 in 100 babies.  I didn’t realize how sick and twisted it was either….taking more lives of babies and children….than all childhood cancers combined.

But, as I sit here…tired, coffee fueled to get me through the next day of therapy and doctor visits, I’m not just thinking of the Heartland and all my babies I think and pray for daily…my heart is full of ache for the others I’ve been praying for. The other littles battling leukemia, spina bifida, mitochondrial disease, brain cancer….any cancer…any disease….anything that makes us as parents want to question the goodness of this world and the God that put us here.

I find strength in these children where others see scars, bald heads, sunken eyes, sad smiles.  They are the epitome of God’s goodness.

Say what?

There is no other way to describe it.  Behind the scars of our children – there is glimmers of hope and smiles of joy – shining brighter than the pain they are enduring.  I often say, if I was going through anything remotely similar to what these kids battle daily, I’d be asked to sit in a room, wallow in my self pity, with a bucket of Blue Bell ice cream and re-runs of the  “Gilmore Girls.”

I absolutely think it’s unfair that our children have to go through what they go through, don’t get me wrong.  No parent should ever have to contemplate the mortality of their child (which I do….many times a day).

But, its in the spirit and in the innocence of these children that bring masses together.  Many….cursing God.  Others….putting their hope in God.  All….asking God, any god…to save that child so many are praying for.

Ask any parent of a child with special needs, medically fragile, chronically ill, if they’d change their child’s path.  More often than not, many of us, myself included, would stop for a moment, contemplate the question, but then confidently say, “Absolutely not.”

We’re not mean or vicious folks.  We don’t wish this on our children…no way.  I’d be happy to rip off my shirt and ask surgeons to cut into my chest multiple times if that meant Evan didn’t have to endure any more pain.

But, in this long, painful journey many of us are own, we have been witness to miracles – our children.

I read one father’s take on his heart baby who also had Down Syndrome.  They had to say goodbye to their warrior…something no parent should have to do.  But he said, “If God lined up a 100 angels for me to take back down to Earth to be their Daddy….knowing that 99 of them would be perfectly healthy…and the single one, the ONE baby would be you, and all we’d go through as a family…I’d choose you.  I’d always choose you.”

I thought that was perfect.  I would not change my Evan.  I can only hope and pray that his path and his journey will be long and fruitful.  I can only ask for strength and hope as we sail through these waters of pain, uncertainty, doubt….and look for calm waters of peace, understanding, and joy.

Friends…know that my heart wasn’t always like this. Honestly, anger sits in my heart many days.  But, I realize I can’t question God’s goodness in times of trouble and darkness.  Because that means I’d also have to questions God’s goodness in my times of joy.  I can’t just ask…why he gave me Evan.  I’d also have to ask, why He gave me Iz.  I can’t just ask….why did he gave Evan such a sick heart. I’d also have to ask, why He chose – is choosing – to allow my boy’s heart to continue to beat.

There are so many in pain today. So many enduring their battles…watching their children suffer.  I can confidently say….because I have been there…there is still goodness in this world..despite the darkness that surrounds us.

The goodness is in the tiny faces, the sticky hands, the little voices…the ones that are beating the odds, fighting the cancer, surviving another surgery…the hope is in them.

We’re in this together, Mamas and Daddies.  You’re not alone in this journey….we don’t want to be here…but at least we’re not alone.

Prayers always.  Hope always.