The Blessing of NOT KNOWING - Reflecting on Max's 2nd birthday

Pure joy!!! (and this, just 5 mins after throwing up)

I speak for myself when I say, "I know so little."  And as life moves on by, seasons shift from one into another, and the number of our years of existence span longer and longer, we prove how little we really know.  But it is in this "not knowing" wherein we can then learn what was otherwise foreign to us  (enough philosophical introspection already). 

Just about two and a half years ago my wife and I received the great news that we would be having our third child.  Given as we were wanting a third, the news was welcomed with extreme joy and excitement.  It is a big deal to have a child, and somehow the novelty of it doesn't wear off just because it is your third.

The day of the ultrasound we were so thrilled to finally get a bit more insight as to what this little creation may look like.  And it was exciting knowing we would learn the gender of this precious little baby.  But as the technician went about moving back and forth over Emily's stomach, in attempt to gain proper vantage points, Emily noticed it was taking a considerable amount of time.  It at least appeared to her that this ultrasound was taking significantly longer than anything like that from our previous two children.  So she inquired, "Is something the matter?  This seems to be taking unusually long."  To which the technician only said, "I'm not really authorized to say anything about this.  The doctor will meet with you shortly to explain everything." 

Of course something was different.  We later found out there were a variety of soft markers, which at least indicated at that stage there may have been some problem(s).  Of course after further tests, we did find these markers confirmed.  And we found out the news that we had roughly a 10% of giving birth to a son with Down Syndrome.  

What did we know at this stage?  We knew this news hurt greatly.  Nobody desires such news.  It is not that we ever thought anyone we had met with Down Syndrome (DS) was any bit lesser of a person, or anything not worthy of living.  It was that we knew if he had DS our son would face a notably more difficult life, as would we.  We knew it wasn't typical of what we had already been through twice with Ruby and Levi, our first two children, and the unknown is always undesirable.  And so for a number of reasons we knew we didn't want him to have DS. 

Well, we prayed.  We asked our friends to pray.  But realizing even then we didn't know it all, we prayed for not just him but for ourselves.  We prayed that if it was such that he might come to us with DS that we might be granted the grace to appropriately cope with it all.  

The moments leading up to his arrival were full of a certain anxiety.  I can remember before Emily was about to make the final push.  We looked at one another with a sort of "I don't know what to expect, but here we go" look at one another.  It was unsettled in both of our heads and hearts just what was about to appear.  It is enough emotion wondering what he might look like, if there might be any complications otherwise, and just the physical exhaustion on Emily's part having been in labor for 12 or so hours at that point.  But the moment was here.  

Max, hours after delivery

And there he was.  On August 21, 2015 Maxwell Kent Begnaud made his appearance.  We didn't require a test or the expertise of a doctor to tell us.  We could see right away from the physical markers, Max had Down Syndrome.  We smiled.  We cried.  Then we cried some more.  My wife recalls me leaving promptly after the delivery.  I don't fully remember it all, but I'll trust her.  The emotion was great.

I remember eventually having to leave to go pick up our daughter Ruby, after her FIRST day of kindergarten.  As I pulled up to the school the emotion should have been joy over seeing my baby girl after a monumental day.  But I was gripped by sadness.  And tears rolled down my face as I drove up to the door to pick her up.  My heart was caught up in this weighty reality of my son with Down Syndrome.  And it was not because I didn't love Max, or didn't want him.  I was just overwhelmed as to the uphill battle it would be for him and for us in the days, weeks, months and years ahead.

I thought of all the special needs kids I'd ever seen growing up and how many of them were wrongly teased.  I even thought as to how I had teased some (and that grieved my heart too).  I thought of the inability of some to ever attain much independence and the reality that we may have a child at home his whole life.  I had to think of how it would change my ability to interact and engage with Ruby and Levi at the level I would expect as a result of the demands Max would unknowingly place on us all, and so many more thoughts overwhelmed me.  A flood of emotion overtook me and I wept. 

Ruby and Levi looking at Max

All the gravity of this didn't go away for sometime.  In the hours after Max's delivery we expected to sit in the room with him, and in a day or two be able to go home.  But then another matter unfolded.  Max's oxygen levels were really low.  So while Emily fell asleep, and I was away for some matter, Max was rolled into the NICU there at the hospital.  For eighteen days we longed for an answer, but nobody could figure out the problem, neither the solution.  But finally when a bed opened up at Children's Mercy Hospital we motored down there.  Oh, to make your way to the hospital, driving behind an ambulance which is carrying your son, is a most undesirable event. 

Upon arriving it wasn't but an hour later when an echo of his heart revealed the problem.  On the simplest terms: two holes in his heart, and 2 valves that didn't properly shut.  Then we got the news no parent wants to hear.  Max was going to need open-heart surgery.  Fortunately it wasn't necessary that day or right away.  In fact, Max needed to "fatten" up a bit before that could happen.  But in the meantime his heart was failing.  

The months before his surgery marked as stressful a time as I can ever recount.  Max was to be on a scrupulous feeding routine.  We had to measure out milk, and then shift to formula.  We had to monitor it down to the millileter.  And he wasn't gaining weight in spite of our efforts and loss of sleep and sanity in the process.  Further, we had countless doctor appointments with his NINE doctors.   Finally about two months before his surgery he started putting on weight.  Not a moment too soon.  We were days away from having a feeding tube placed in him. 

And then the day came.  We handed him off to nurses who were then going to take our baby down the hall, into a room, where his chest would be cut open and his heart mended (though I still have no clue how that doctor's fat fingers could even get into my son's chest).  There is nothing in life that can rightly prepare you for anything like this.  All we knew is that we didn't want this for him.  We knew it wasn't supposed to be this way.  We knew it was undeniably painful.  We would have rather just seen him come to us  with a heart fully in tact and free of DS. Of course, surgery went well, as did a subsequent surgery on his spine, and a number of smaller procedures. 

Hours after heart surgery

I bring up that rather extensive narrative not to draw attention to us, but to at least give a bit of context on what I first said.  And knowing what little bit we knew was coming or potentially coming because of Max's condition, we wanted a different outcome.  

Well just this week we celebrated Max's 2nd birthday.  It just so happened to be the same day of the solar eclipse (what a party right?!!!).  As Emily and I have processed his life in real time, and then after the fact we have found something evident that we didn't know before.  We didn't know all the great joy that Max would bring us.  We didn't know the laughs and smiles he would give us.  We didn't know the love and happiness he would have for us.  We didn't know the plethora of ways in which he would enhance his siblings' lives.  We didn't know the way his little life would connect us to more people, even families with kids who have DS.  We didn't know what all of this was making us either.  We were becoming more compassionate people.  We didn't know what God was doing, is doing, and will yet do through Max and him being added to our lives. 

So I look at it all and say God was extraordinarily gracious.  God knows what He is doing.   I remember holding Max on my chest when he was two days old.  I whispered in his ear and said, "You have a lot to teach me."  I've ever been reminded of the truth taught in 2 Cor. 12 where Jesus says to Paul, "My grace is sufficient for you, for my power is made perfect in weakness."  That is what I was thinking about when I whispered that in Max's ear.  And while I didn't know much of what all that would look like, I have learned at least in these two years a bit of it all.  And as Max continues to grow and enhance and bless our lives even more I am so honored to be his father. 

Sometime about 8 months after Max was born my wife and I were talking.  She said, "You know, even if there were some magical medicine we could give Max that would free him from Down Syndrome I wouldn't give it to him.   It's all I've known of him and to take that away would mean everything we know of him would be different.  And I love HIM."  I rejoice in God's gracious answer to our rather "uninformed" prayers.  He knows best, now and always.    Next time you think you know it all, defer to the WISDOM and EXPERTISE of JESUS.  He knows it all and promises to use it all even for your joy and His glory.