The season of Advent- growth in waiting.

Although being hit with the news of Brady's Down syndrome diagnosis wasn't something we expected, the next conversation was harder for me, personally.  The lead pediatrician from the hospital where he was born came in to talk with us, presumably about the DS.  He told us that they were going to perform an Echocardiogram, which is an image scan of the heart (kind of like an ultrasound), on Brady that afternoon.  He said that many babies with DS also have heart issues and so they wanted to rule out any abnormalities before they could send us home.  I wasn't too concerned, after all, my OB-GYN hadn't heard anything alarming during my pre-natal visits, and the delivering pediatrician hadn't heard anything after Brady was born.  So, they took Brady, I got to nap, and we got him back an hour later.

The pediatrician came back in the room a few hours later to tell us that he needed to talk with us alone (we had a pretty big crowd that had to come to welcome Brady!).  He told us that it appeared that Brady had an atrial septic disorder (ASD), which put simply meant he has a hole in his heart between the top two chambers.  This disrupts the amount of oxygenated blood that could go through his body.  They were going to be transporting Brady to Lurie Children's Hospital where their team of neonatal cardiologists could better diagnose and care for him.

Now that scared me.  Brad and I sent our friends home while they wheeled Brady to ICU, then we prayed and called our parents.  There wasn't anything else we could do- nothing else we knew to do.  So we prayed and we waited.

We were at Lurie Children's for ten days where a wonderful team of doctors and nurses taught us more about what was going on with Brady - they confirmed the ASD and told us that he also has pulmonary hypertension- and we waited.  They showed us how to care for him, what warning signs to look for, how to start therapy services for him- and we waited.  We learned what it meant to rely on each other and God as we just wanted our baby to be well enough to come home and begin our life- that was worth waiting for!

In this season of Advent, we are taught about waiting for the Christ- child, and waiting on His return.  When I hear about things like the elementary school shooting in Connecticut, I cry out, just pleading that Christ would come again soon and heal this broken world.  The waiting is the worst part, and yet it's the part that teaches us the most about who we are called to be.  For Brad and I, the waiting in the hospital (and now the waiting on Brady's heart surgery to fix the problem) has been the most agonizing part- and the most beneficial.  We have learned how to care for a baby with special needs, and how even though all these things are going on, he's still just our baby that we need to grow into a man of God.  There is growth and healing in waiting, we just have to step back and see things through the eyes of what God is doing.

Holding on Tight

This week has been a reminder of how easy it is to rest in  the arms of God, yet, it seems that we struggle against that... we fight with our human emotions and our logic.   As Brad and I have come to find out, God really doesn't ever give you any more than you can handle, because you have to learn to lean on His grace, trusting that He'll carry you through times of struggle.

We got through our pregnancy without much fuss, and on the morning on June 10th, I woke up at three o'clock in the morning with what I though was just stomach pain.  Mind you, I'd made cupcakes the night before and had eaten quite a few, so I just assumed it was that.  An hour of tossing and turning later and I knew that wasn't the case.

Fast forward 10 hours and some pain medication later, I had this little perfect boy in my arms.

Brady Scott DeJong.  Perfect.

Brad and I were pretty  much in awe that we could have had a hand in creating something so wonderful- he was tiny and cute, with a squished little face, grabby hands and  squinty little eyes... I cried, which I didn't think was possible.  

Then the pediatrician on call came in and told us that they needed to talk to us about some of the things they noticed about Brady.  He had almond shaped eyes, and extra skin on the back of his neck.  Two of his toes were a little webbed.  All of these things, they said, were indicative of babies with Down syndrome, a genetic condition.  They couldn't be sure, but they were going to run tests to confirm, and, did we have any questions?

It was a whammy.  We were both exhausted, all I wanted to do was to be left alone with our little baby!  This news didn't really phase me then... I just thought, "oh well, what can you do about it?  It is what it is!  He's still here, he's still breathing, he's still so freaking cute!"  Brad will tell you that it hit him pretty hard.  He went into the hall to get his parents and broke down when he told them what the doctors had just relayed to us.  His dad just gave him a big hug and did what dads do best- stand strong and hold on tight.

That afternoon and evening, we prayed hard.  We prayed  that we would find peace, that 

the doctors would provide answers, and that God would continue to guide this journey.

While we prayed, we held on to our little boy, who still had his squishy face, hands that squeezed  and little squinty eyes that he was not ready to open up.  Now we learned he had Down syndrome.  

And we still thought he was perfect.

That in itself was all that we needed to get through the night, and I know God knew that.

He gives us  the peace we need in the moment, and then the strength to sustain us

for the long haul.  Brad and I are learning how great that strength and peace can be as 

we come to terms with  what it means to be parents of a  child, much less a child with special needs.

Praise be to God for His faithfulness in our lives, and for the way he allows us to rest in his arms daily.