September 24th, Matthew was born.
September 25th, Matthew lived.
September 26th, Matthew went home.

Imagine the roller coaster of emotion we were on.  We had gone from finding out our son had Trisomy 13 and learning he wouldn't have much time with us, if any at all.  To hearing the positive news at our Care Conference that, for a baby with Trisomy 13, Matthew had relatively few life threatening issues and he had every chance of going home with us.  To going into labor a month early and not knowing if having him early would put him at higher risk.  To giving birth to a rolly polly, 6lb 3oz, rosy pink, healthy little guy.  Healthy except for the occasional failure to remember to breathe.

This is the part of the story that is hardest for me to share.  Not because it's sad.  It has it's sad moments.  But more than that it is precious.  It's the part of the story I treasure the most.  Because it's the story of our private moments with Matthew.  It's the part of the story that only we know.  And as hard as those moments were, they were also my favorite moments with him.  Because it was in those moments that I felt closest to him.  And in those moments I was surrounded by saints and angels.  Those were the moments when all the prayers, the hundreds if not thousands of people praying for our Matthew, those prayers surrounded us and held us.  They carried us through.

But if I really want to tell his story, I have to share these moments with you.  Because the story is not complete without them.  I want you to know my son as I knew him.  And without the chance to introduce him to you in person, this is the next best thing.

 And he was beautiful!

Once I got back to the recovery room I was able to hold him.
 We started bringing family and friends into the room and everyone had a chance to hold him and love on him.  His brother and sister got the chance to meet him.
The Peanut helped to change his first diaper.

 And he got to hold Matthew's hand which is something he had told me he wanted to do.

Cousins

Everyone of his visitors got to spend time with him and hold him and love him.  He was passed around and around.

Let me tell you about my little "Matt-man."  (Feel free to hum the Batman theme song whenever you say his nickname!)

It's hard to know how to even begin to tell his story.  How do I begin to put into words what is in my heart?  It was really one of those, "you had to be there" times.  But I want to share his story.  Because part of being a mother is knowing your child is wonderful and perfect and wanting the entire world to know how wonderful and perfect he is too.  Before the details start to fade and blur.  I want to introduce you to my 36 hour miracle.  I want you to meet my precious Matthew.

I guess I will start at the beginning.

Friday September 21st was the Princess's 4th birthday.  We took her to Legoland.  Afterwards we took her to the toy store to spend some birthday money she had been given.  She proved her natural shopping abilities by scoring a few deals and walking out of the store with over $70 worth of toys for $30.  It was a happy day.

That weekend was a relaxing lazy weekend.  Not much productivity.  I wanted to write a couple of blog posts telling you about the day we sat our kids down and explained to them that their baby brother might not get the chance to come home.  I wanted to tell you about the name we had chosen for our son.  Matthew meaning Gift of God.  I wanted to tell you about the Care Conference we had just that week discussing all our plans for Matthew's birth.  How the doctors had all acted very positive about Matthew's chances for coming home with us.  I wanted to tell you about making preparations and writing a birth plan and packing a bag.  I wanted to publish the post I had written about two of my friends who have gone so above and beyond the call of friendship duty.  To whom I owe a life debt.  But my computer had gone from making a strange noise, to fan going out and overheating.

5 weeks until my due date.  4 weeks until my scheduled c-section.  Plenty of time.

Little did I know that there would be no more preparations.  No written birth plan.  A half packed bag.  And when all was said and done the list of people I owe a life debt to has increased significantly.

On Sunday September 23rd we went to church.  After Mass we walked around the church festival a bit.  Then we headed home.  I had a few contractions throughout the day.  Just tightening, no real pain.  All the same they had me a bit worried.  See, I never had Braxton Hicks contractions with my other pregnancies.  About a month ago I had contractions.  They were upper abdominal and clearly different than anything I had ever had before so I didn't worry about those.  These however seemed more like "normal" contractions.  So I did my best to relax and kind of hung out in bed all day drinking water and playing a lot of Spider Solitaire.

As the day went on they became more frequent.  I tried to tell my husband not to worry.  This was totally normal.  Inwardly I was starting to panic a bit.

Bedtime and I tried to get some sleep.  But the contractions were becoming more frequent.  And more painful.  I would start to doze off only to be awakened by a contraction.  I started to time them.  They were coming every 15 minutes or so.  I decided to take a shower.  Maybe that would relax me and they would stop.  Me stressing about them was probably not helping matters any.

I took an hour long shower.  Only had one contraction the whole time.

Good.  Now maybe I can relax and sleep.  By morning time they will have stopped.

I went back to bed.  It was 3am.

20 min

12 min

8 min

10 min

I moved to the recliner.

6 min

1 min

6 min

14 min

9 min

At this point I was timing contractions by how many Hail Mary's I would say during one.

7 min (two and a half Hail Mary's long)

11 min (two Hail Mary's)

5 min (three Hail Mary's)

I was panicking.  It was too soon.  My son would have enough problems without being premature too.  I was only 35 weeks.  I just needed at least two more weeks for him to be full term.

I thought of Mary on that road to Bethlehem.  Was she afraid?  Was she in labor as they searched for a place to stay?  Did she fear having no place to give birth.  That her child would be endangered by exposure to the elements?

Was my son about to lose any tiny chance he had at even a few hours of life?

This was not the plan!!  God and I had a bit of a chat.

"I'm not the only one whose plans will be affected!  There are lots of people who have made plans to be here.  Days off work have been taken.  Hotels have been booked.  They want the chance to meet him.  This is not the plan!"

And God answered, "It's not YOUR plan."

These contractions were exactly the same as the contractions I had right before my water broke with the Princess.  Fluctuating between 5 and 10 minutes.  Same pain level.  I knew.  This was real labor.

At 7:30 am my husband woke up.  We decided to call the doctor and head to the hospital.

Today I wait.  I wait for the results of a test.  I wait to hear the results that, to be honest, won't change anything.

The fact is that if the results come back positive we will have a name for what we face.  If the results are negative it doesn't really change anything.  It doesn't make the problems go away.

What I know now is that we are going to be challenged.  Our baby will have needs I can't even begin to imagine.

20 Weeks

When we went in for our 20 week ultrasound, I had a bad feeling.  It was June 13th.  I won't lie.  The date made me uneasy.  June.   My unlucky month .  The 13th.  That just couldn't be good.  

Waiting room before the ultrasound

The ultrasound technician was pretty quiet the whole time.  A few times she mentioned that the baby was moving around and making it hard to see things.

When we finished she told me, "the doctor will follow up with you with the results."

Those words kept playing over and over in my mind.  The doctor will follow up with me?  Why does the doctor need to follow up with me?

I tried to dismiss my fears.  Maybe she just always says that.  Maybe it didn't mean anything.  Maybe.

The next morning I got the call.

What I heard the doctor say was that the baby had a cracked rib and that the technician couldn't find a stomach.

What she had actually said was that the baby had a cleft lip and the technician couldn't find a stomach.

In tears, I ran frantically up the stairs to tell my husband I had to go in to a specialist right away for a more detailed ultrasound.  Thankfully he was working from home and we dropped off the kids with my sister-in-law and went straight to the doctor's office.

Then we sat and waited.  My husband spent our time looking things up on his phone.  At one point I picked mine up.  I couldn't take it anymore and I had to know.  He practically snapped at me.  "What are you doing?"  "What do you think?"  "Don't."  My stomach churned.  All I could think about was that cracked rib.  How could that happen?  Was there no stomach and the ribs were imploding?!

Finally we were called back for the ultrasound.

This technician was more vocal.  She described everything she was looking at.  All I could do was look for a stomach.  She kept focusing on the heart.  I figured she was really looking for the stomach but didn't want to freak us out so she was pretending to look at the heart.  Still, she kept measuring the heart.  I wanted to shout out, "THE STOMACH!  FIND THE STOMACH!!"  Finally she moved down a bit and I saw a little black spot.  Could that be it?  Casually she mentioned it as she continued on.  "There's the stomach and those are the kidneys."  We breathed a sigh of relief.  "Thank you God!  Everything's ok."

Then the doctor came in.

"You guys are here about a cleft lip."

"Cleft lip?"

He stopped and looked at us.  "What do you know?"

"Nothing really.  Something about a missing stomach."

"The stomach is fine."

Then he delivered the news that turned our world upside down.

The baby has a bilateral cleft lip.  It extends all the way up on both sides to the nose.  It's possible that there may be also a cleft palate but we can't see inside the mouth.

Ok.  Not the best news but that's fixable.  Certainly not as bad as the missing stomach we had been fearing.

But.

The baby also has some other "abnormalities."

As we left church on Sunday, my husband told my son to point her out to us if he saw her.

"Who?"  I asked.

"He met a little girl.  He thinks she's cute."

We made it to the car without catching sight of her.

My son, distraught, slumped into his car-seat.

"I really wanted you guys to meet her.  I want her to be my friend."

My husband cast me a sideways glance.

Clearly he was reading way too much into this whole thing.  I mean the Peanut is only 5.  Way too young to be thinking like that!  He has no older siblings and doesn't go to school so how would that idea even enter his head?

The Princess is a Mama's Girl.  She will jump up in my arms and smother me with kisses and cuddles.  Especially if Dada asks her for a kiss.

It's a bit hard on him.  He craves her love and she turns her back on him and runs to me.

I try to tell him not to worry.  One day she will realize the power she wields over him and the tables will turn.

I warn him that she is actually practicing her flirting skills and has it down cold.  The more she runs from him the more he chases after her.  It's all part of her strategy.  She may seem innocent.  But that little brain is scheming.

And now she has started to realize her power.

I should be doing the dishes.  They have piled up again.  Instead I stare at the massive crusty pile and wish them away. But they stubbornly refuse to clean themselves.

I should be cleaning the living room.  It has been overrun with all the things that belong somewhere else but somehow creep back in when I'm not looking.  Then I turn around and am greeted with a scene from a horror movie.  I should be putting all the things back where they belong.  I should be scolding my children and making them put the things back where they belong.  But I lack the energy to follow them around pointing out each item and explaining in detail how and where it should be.  Instead I watch and listen to my children blissfully playing. Totally unaware of the chaos that surrounds them.

I should be writing a blog post.  Something insightful, or eventful, or charming, or witty.  Instead I stare at a blank screen as the words refuse to form themselves.  My head swirls with tiny snippets of thought that flee like butterflies from my net.

A tiny box.  No decoration.  No markings.  Simple.  Ordinary.  Unremarkable.

But inside that box.

A treasure.

I open the box.  A flood of memories.

Memories tucked away, deep in my heart, but never forgotten.

Memories, not shared, but not secret.

An entire existence.  Held in this tiny box.
I remember.

Kids, have I ever told you how I met your father?

It was the winter of 2002.  I was working as a "Customer Service Rep." in a call center.  A friend and former roommate of mine, who worked in the same building, but different department, stopped by my desk to chat.  Let's call her Leeny. ;)

Little did I know a co-worker of hers had passed by and noticed us talking.  He had taken special note of my name plate on my desk.

Later he would play a little prank on her.  "How do you know Rachael?" he asked.  She, surprised that he somehow knew me, started chattering away about going to college together, being close friends, living together with 5 other girls in a rental house after graduating . . . "How do you know Rachael?! she asked.

"I don't!  I never said I did.  I just asked how you knew her."  He laughed.  She rolled her eyes.

But that was enough.  Enough for Leeny to begin to tell him little things about her friend Rachael.  And one very important detail.  The detail that created the first spark.  The detail that gave him his in . . .

This past weekend my husband, kids and I all traveled by car 4 hours to spend the weekend in Oklahoma attending a wedding of one of my college roomates.  I spent the weekend involved in various wedding preparations and other bridesmaid attendant duties.  I will tell you more about that as soon as I get all the pictures scanned into the computer.  (Requires me to go all the way upstairs to use the scanner.  I actually wrote the post on Monday but have been procrastinating on the picture part all week.)

Let me tell you how my husband spent his weekend.

Mama & Peanut

Today my son fell down and hurt himself.  It wasn't a big injury.  All he needed was a kiss from his mama to make it all better.  Mama kisses are magical like that.  He came over.  Sat in my arms as I kissed his "owie," dried his tears, and told him he would be ok.  Then I gave him an extra kiss on the head.  Just for good measure.

"Ewwww!"

"What?  Ewwww??  What do you mean ewwww?"