1.  Today was the anniversary of Matthew's death.  My husband took the entire week off work and we have been spending the week together as a family.
2.  On Matthew's birthday we headed out to his grave site.  He is buried about an hour drive away so we don't get to visit him as often as I would like but we make sure to go out there to celebrate his birthday.

3.  Last year I was kind of unprepared for his birthday and went at the last minute to try to find some things to decorate his grave with.  Unfortunately, I discovered that September is not the best time to find outdoor decorations.
4.  This year I have been gathering things throughout the year so we would have some gifts to take out there.  We also wanted to have something for the kids to participate in so we made a stepping stone.  We spelled out his name, added a Superman action figure to the center and the kids placed all the glass mosaic pieces.  They were really excited about making a gift for Matthew.
5.  We headed out to the cemetery and gave Matthew his gifts.
The stepping stone.  Flowers.  A #2 birthday candle.  A humming bird.  A little bunny and mushroom.  A drawing (birthday card) the Princess made for him.  And small stones we each decorated.  Mr. Cool and his parents also contributed a pinwheel which was perfect.
The vase, teddy bear, little car and flowers we put there last year for his 1st birthday have held up so I added the pinwheel to the vase.  His little glass dolphin is also still there and though it has been kinda beat up, it has held up better than I ever expected.  After we placed all his gifts we sang him Happy Birthday and had cupcakes.
6.  I love that cemetery.
It is so pretty and there is an "old cemetery" section with the taller cooler looking tombstones.  The little white church was recently restored and I love seeing it right next to "our tree" that stands over Matthew's grave.
My husband's grandfather is also buried there along with many other family members.
I love that Matthew is buried surrounded by family.

I always like to take pictures when we are out there.  Kids, stand by that tree and act natural.


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He wasn't the biggest fan of the bath and that is one of the few times in his life that he cried.  He did love to have his head rubbed though.

Happy Birthday to my sweet baby Matthew.  We miss you everyday.

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The kids had been asking if they could take flowers to Matthew so we stopped at a Kroger on the way and let them pick out their flowers.

The Princess picked purple flowers.  No surprise.  Purple is her favorite color.

The Peanut picked "Crazy Daisies."

I have a confession to make.  I know they are unnatural and flowers are already beautiful just the way they are and I am probably making you all cringe but... I really love crazy daisies.  They are just so bright and happy.

I am now going to give you the story as told by the Peanut.  He saw me writing and he wanted to tell the story.  I loved his version so much I wanted to include it here.  He also chose the pictures.

It's hard to breath today.

6 months.  It's been 6 months since I held my baby boy in my arms.

6 months and 1 day.

Time is my enemy.  I fight it.  It is pulling my Matthew away.

Every day I get farther away from him.

6 months and 1 day away.

Every minute, every second that ticks by, he slips further and further into the past.

Fading.

People say it gets easier with time.  That time heals all wounds.  Some wounds aren't meant to be healed.

Time is what separates us.

6 months and 1 day between me and my son.

I keep moving forward.

Because there is nowhere else to go.

Forward one day at a time.

One day further away.

And I have to keep reminding myself.

That each day forward.

6 months and one day forward.

Is 6 months and one day closer.

Closer to the day I see him again.

Each day that goes by is one day further away.  But it is also one day closer to our reunion.

When I will hold my precious boy in my arms once again.


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It keeps escaping me somehow.  Just out of reach.  I feel like I should have it, like I have almost grasped it.  Then suddenly I am reminded that it is just an illusion.  And I get so frustrated.

Angry with myself.

I should be able to do this.

After all, this is the way it was before.  I had two kids to care for.  I cleaned the house.  Cooked the meals.  Taught the lessons.  Laughed and played.  Kissed the owies away.

It should be normal.  It should just be the way it was.

But of course it isn't.  Because he is not with us.

And he should be with us.

My sister was in town for a few days this week.  She got in on Wednesday evening and on Thursday morning she got up early and left for an appointment.

When I woke up I realized it was a bit late and wondered why the kids were sleeping in so long since they hadn't woken me up.

It was quiet in the house and I was surprised to find the Peanut sitting at the bottom of the stairs casually flipping through a comic book.  I asked him what he was doing.

"Waiting for Aunt Treesa to come down."

I told him she had left for a meeting and he looked at me like I was deluded.

"No, she can't have left.  Her shoes are still here."

Sure enough, her sneakers were there by the door.

"Buddy, she wore a different pair."

He gave me a confused look and asked to go check her room.  He would not believe me until he had confirmed her absence for himself.

Later, the Princess woke up.

She picked out her clothes for the day.

A dress paired with a skirt.
Her argument was that they went together because the skirt was twirly and the dress has a pretty pink ribbon.
Can't argue with that logic.

So I made her tuck the dress into the skirt.

We went on about our day and around noon I told them to get shoes on because we were going to be leaving in a minute.

Is that an outfit or what?

My husband was coming home on lunch and we were going to do our taxes.

She was ready to go and said to me, "As soon as Aunt Tweesa comes down we going to leave?"

Again, I found myself explaining that Aunt Theresa wasn't upstairs.

Again I was faced with a quizzical expression.

Once upon a time I was pregnant.  We had our 20 week ultrasound.  We found out that our little one had Trisomy 13.  We were told he was not expected to live very long.

And then as if all that wasn't enough to deal with, my brother AND a dear friend of mine both started fundraisers for us.

FUNDRAISERS!

On top of that, my brother went and started spreading the word all over everywhere that we needed help.

The nerve!

Our initial reaction wasn't the best.

People started donating their hard earned money to us.  People who were probably living paycheck to paycheck just like us.  Friends, Family, total strangers, someone named anonymous just kept giving and giving.

To us.

Like we ever did anything to deserve that.  I mean there are people out there in the world who are starving to death but someone is donating us money.  We have a house, a car, food on the table, clothes, and more toys than my kids know what to do with but people are donating to us?

Once we calmed down a bit and accepted the fact that people were going to help us whether we wanted it or not, we began to recognize how much we did need it.

Those donations gave us one less thing to stress about as the medical bills started piling up.  We were able to focus on choosing the best possible care for Matthew rather than worrying we wouldn't be able to afford it.  One of my friends mentioned at the time, whenever you add an additional title to a doctor's name you add an additional dollar sign.  And we were seeing some long titles.

When the time came those donations paid for Matthew's funeral.  We had lots of help with the funeral costs. Family donated a plot to us in the cemetery where Matthew is buried surrounded by family.  The funeral home also waived any commission.

While I was in the hospital, my brother and dad took one look at our car, marched in and demanded our keys, and took it to get four new tires.  One of the tires had been patched the year before and we had bought a small air compressor that plugged into the cigarette lighter.  We were filling up that tire every day with air until we finally burned out the air compressor.  Then we went back to quarters at the gas station on the corner.  All the tires were bald, one had a nail in it and the one we were filling up every day, had a gash that looked like it came from a box cutter.  (It had been there when the tire was new but as it wore down it seemed to crack deeper.)  Getting new tires, or at least replacing the leaking one, was on our to do list in the month we thought we still had before Matthew's birth.  Then he came early.

On top of the financial help, we had so many people praying for us.  I believe in the power of prayer, but I can honestly say I never experienced it before in such a powerful way.

January

Started the year off with a cleanish house.  That didn't last long!

February

An Anatomy lesson.  (Seven months later we used the same book to explain Matthew's "broken" heart & told our children their brother might not be coming home.)

March

Softball

April

A visit from a Duck

May

Scarborough Fair

June

The kids went "camping"

July

A trip to the Zoo

August

Dada looks hot too!

September
October

The Princess and the Peanut had their birthday party.

November

We visited Grandad at work. (The carnival)

December

Despite my reservations, 12/25/2012 turned out to be the "best Christmas ever."  The Peanut nails his Dada in the face with a snowball while Mama stays warm inside. Matthew sent us snow for Christmas!

2012 was a hard year but as I look back over these pictures I realize what a joyful year it was.

Linking up with Dwija for 2012 in 12.


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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.