I'm Mad

If you are my friend on Facebook, you may have read a rant about a {horrible} woman at a family restaurant who made me mad.  I took the kids into the restaurant while Tommy parked the car.  From the time we walked in, this woman was giving us looks.  She was whispering to her friend.  She was judgmental and rude.  James was excited.  We were meeting a few friends and he was happy to see them.  James is five.  He has a loud voice.  He was definitely using that loud voice.  But I was trying.  I was trying to keep him quiet.  I was acknowledging his noise level while trying to correct the behavior.  I wasn't ignoring him.  I wasn't walking away.

But I could still sense her dirty looks.  Hear her whispers.  

When Tommy came in, I took James to wash his hands (and to remind him of the behavior that we expect from him).  It just so happened, that she was sitting at a table near the restrooms.  As she rolled her eyes and mouthed "I can't believe this..." to her friend, I apologized.  OK, it wasn't a real apology.  It was a backhanded, passive-aggressive "apology".  

This is how the "conversation" went:

Me:  "I am so sorry that he is misbehaving."

Wretched Woman:  "He really is."

Me:  "I'm so sorry {not really}, but I am trying.  I'm doing my best."

I know that I said something else, but I cannot remember exactly what was said.

She thought James was being loud?  You should have heard me.  But my blood was boiling and my heart was palpitating.  I took James to wash his hands and I sent many glares to her as I ate and enjoyed bonding time with our friends.  

She left without further incident.

You know what?  My heart is still palpitating and my blood is still boiling.  I am literally shaking while I type. 

I'm not upset because she was a rude, wretched, and sad person.  

I'm upset because I'm mad.  Not just at her, but at a lot of things.  And a lot of people.

I wish that this woman had taken the time to understand.  To understand that maybe James needed this time with friends.  To understand that maybe his mommy had a rough day at work and was trying so hard to keep him quiet. 

Maybe she would have been a bit more kind if she knew what that five year old has gone through in his little life:  four surgeries (two of which were major), blood draws every six weeks until he was four years old, ultrasounds looking for tumors every three months, the fact that he talks about a brother who he never met.

Maybe she would have been a bit more kind to his momma if she knew what she had faced:  nightly P/T with her four year old daughter, saying "goodbye" to her newborn as he was flown to a different hospital the night he was born, seeing her week-old son's chest open after surgery, watching as her son passed from this world into heaven, being offered termination for her fourth child, watching that same child go through four surgeries, and holding him down while he had blood draws and ultrasounds.  

Maybe, just maybe.  Maybe if she had known what this boy and his mother have been through.  Maybe she would have shown grace.  Maybe she would have been kind.

But she chose judgment.  She chose to jump to conclusions.  To believe that this kid was a brat who was misbehaving.  She didn't think about that fact that he is phenomenal.  That he is more creative than anyone I have ever met.  That his imagination is out of this world.  That he is so full of love and is so very smart.  

I feel sorry for her.

But that doesn't make me feel any better.  I'm still mad.  

I'm mad that today while cleaning, I had to pick up one of the {very few} pictures we have of Luke, and dust it.  I'm mad that Luke died.  I'm mad that James was born critical.  I'm mad that my father-in-law passed before he was able to meet our babies.  I'm mad that we just lost my brother-in-law, a man who was so good and so very kind.  I'm mad that my sister had to watch as her son battled (and beat the hell out of) cancer.  I'm mad that so many friendships have been lost over the past almost 7 years.  It all adds to the grieving process.

I'm mad that I just can't ever seem to be enough.  I fail so often.  At being a mother.  A wife.  A daughter.  A daughter-in-law.  A sister.  A friend.    

And I'm also mad that this post will probably make other people mad.  But you know what?  Honesty sometimes sucks.  And hurts.  Believe me, I have been hurt by honesty a lot over the years.  

As mad as I am and as much as that {wretched} woman's judgment hurt me the other night, I know that there are people who will forgive me.  I know that my husband will hold me and will tell me that all will be ok.  I know that he will support me whenever I fail and will pick me up when I fall.  I know that my children will always love me.  As much as I think I fail, they will love me unconditionally.  They will always forgive my shortcomings, because sometimes I do succeed.  And sometimes, I can even be their hero.  

And I know that God will forgive me.  I ask forgiveness of Him all the time.  When I am mad, when I am frustrated, when I question Him.  He forgives me.  And He gives me so many blessings:  my husband, my children. my family, and my friends.

To this woman, whoever you are and wherever you are:  I pray that you will leave your judgment at home.  I pray that you will be accepting of children and will remember that we all have good days and bad.  And I also pray that if I ever see you again, that I am granted grace and can offer that grace to you.  

To everyone else, please remember to be kind.  It does no good to take your frustrations out on anyone else.  You never know what crosses other people have to bear.  A kind gesture or word can make a big difference in that person's day.  

I love you.  I love you for reading this.  For saying Luke's name.  For not trying to "fix" me.  For understanding when I just want to complain.  For knowing that I will never, ever be the person I was on March 11th, 2008, the day before that beautiful boy came into this world.  I love you.  Thank you for loving me.  

The Power of Words

April 18th, 2008.  The worst day of our lives.  We had to give our baby boy back to God.  As they were feverishly trying to save him in the (St. Luke's) ER, Tommy and I stood outside praying.  We told God that, if he took Luke, we would be ok.  It's not that He needed permission, as Luke was and is His child.  But I think that He needed to hear it from us.  He needed to know that we were ready to say our "goodbyes". 

And so we did.

After we lost him, we were numb.  Aside from the wake and funeral, I didn't leave the house for over a week.  I wouldn't even go outside.  How could the world go on when my heart was torn apart?  When I was still producing milk, with no baby to eat it?  When I still had the scars of pregnancy? 

But it did.

And it was hard.

Even more difficult were the words that were not spoken, the notes that were not sent, the calls that were not made. 

And it was lonely.

Even as we were showered with meals, phone calls, and visits from so many people, we felt the absence of others.

I felt hurt. 

For 6 years. 

Until about two weeks ago.

A few weeks ago, I received a handwritten note in the mail.  I obviously don't want to go into too much detail, but I can say that this note lifted a huge weight from my shoulders.  While reading it, the sender had asked for forgiveness in not acknowledging Luke's life and death.  I cannot imagine how difficult it must have been to write this note, but what this person did for me was immeasurable.  Six years of bitterness and anger.  Six years of sadness. 

Gone in the few minutes that it took to read the note. 

I had been holding on to these feelings for so long that they had become a part of me.  How wonderful to know that, after all these years, the feelings could become a thing of the past? 

It is no surprise that God chose this time of year to tap this person on the shoulder, encouraging the sender to write words.  Words that made me cry, and made me smile.  I needed this note and He knew it (as did Luke). 

Words can heal.  These words healed that part of my heart that held so much resentment.  And I am so thankful for them.

This year, Luke's angel day occurs on Good Friday.  Could it be any more perfect?  On the day that we recognize the death of Jesus, we will also recall the death of our own son.  As a mother, I cannot fathom what Mary felt as she watched her son beaten and sentenced to death for the sins of others.  But I can empathize with her heavy heart and I can't think of a better mother to emulate. 

Tomorrow on Good Friday, our family will remember that Christ's crucifixion and resurrection on Easter Sunday will bring the promise of new life. 

It is in that new life that we will see our son again.

May God bless you all on this Easter Weekend.

Six.Years.Old

So I had this entire post written about acute emotional pain and how it never goes away.  About how the pain can hit me like a ton of bricks.  About how I thought that when I wrote this post, maybe the pain would go away.   

But it was deleted. 

I think it's a sign.

A sign that I need to focus on our sweet baby boy.  Our bringer of light.  Our own little saint. 

I need to focus on him, not the pain of his absence.

So that is what I will do. 

Focus on him.

Focus on his handsome face.  His awesome hair.  His soulful eyes.

Focus on the joy that he brought in his 5 1/2 weeks.  The happiness that came with each battle he overcame.

Focus on the miracle that he was.  The miracle that he is.

Last night, I asked my father to send me a few pictures of Luke that he has on his computer.  Little did I know that some of these pictures would be new to me.  How could I have missed these pictures when I have so few of them to begin with?  Tommy and I looked over the pictures and my eyes filled up with tears.  What a wonderful surprise.  Thank you, Dad, for sending the pictures.  I know it wasn't easy for you.

So here they are...some of them may be new to you as well.  Enjoy the pictures of our beautiful baby boy.

 

 

Baptism Day * March 17th, 2008

 

They were so proud of him.

 

 

Wittle Bubba with his big siblings.

 

 

Momma and Baby.

 

 

Taking a bottle like a champ.

 

 

Sweet boy.

 

 

Proud Daddy.

 

 

One I had never seen.  First pic with no tubes!

 

 

He looks like James in this picture.

 

This was right before we left the hospital.  In the going home outfit we bought before he was born.

 

Welcome home, Wittle Bubba!

 

I think he is reading the word on the side of the Pack 'N Play.  ;)

 

Not ready...

 

Still not ready...

 

Here you go!

 

Eating with Mommy.  So tiny.

 

Our last family picture.  If we had only known...

 

Thank you, as always, for your thoughts and prayers.  This year has been tougher than I had hoped it would be.  It is unnatural to lose a child.  Plain and simple.

 

On a side note, I have met many of you since Luke.  If you would like to read his story from the beginning, check out his CaringBridge site.  I hope it will give you a good idea of who I used to be.  :)

 

God bless and please pray for peace for us all tomorrow and over the next 5 1/2 weeks.

Letting Go

Something must be festering inside of me if I am writing on the blog in the middle of the year!  I usually save blog posts for Luke's birthday and angel day.  But yes, something is tugging at my heart.  And it has been tugging at my heart for over five years.

Today after Mass, I met with a woman who is starting a ministry called Embrace (http://www.embracefamilies.com/).  Embrace is a loving ministry that offers support to families who are facing grief after miscarriage, stillbirth, or infant death.  Tommy and I have offered to be support for others (and we will also gain support from others) and are anxious to get started.  I was involved in Griefshare at our parish in Tennessee and I was so thankful that there were other people who were grieving, although the losses were all different.

As I was talking with the woman who is bringing Embrace to our parish, those feelings flooded back.

The bitterness.

The anger.

The questioning.

I bet you're wondering who caused these feelings?  Who made me feel bitter?  Who caused anger and questioning?  Why would I even allow someone to make me feel this way?

It's simple, really.  It is because when we lost Luke, the only thing I had to rely on was my faith.  My family and many of my friends were amazing.  They were there when I needed them the most. 

But my faith.  My faith was the only thing that got me through.  I was carried because I couldn't walk on my own.

So...who do you turn to when you want to talk about faith?  When you want to hear about faith?  When you want to grow in your faith?  Most people turn to their pastor. 

You see, I worked at our parish.  I worked there until I was about 38 weeks along with Luke.  Before I knew he was sick.  Before I knew he may die.  Back when I was the old, fun Bernie.  The pastor was, for all intents and purposes, my boss.

When Luke was born, everyone scrambled, especially my work family.  They worked to get meals together and to help get Em and Matt where they needed to be.  They were there when we needed them.  I received phone calls and emails from many of them.

So many of them.  Except for one. 

The pastor.

I never heard a thing from him.  Not when Luke was airlifted on the night he was born.  Not when Luke was baptized on St. Patrick's Day.  Not when he had his Norwood.  Not on the night that he died.  Not on the day of his funeral.  Not on the unimaginable days following.

Thankfully, our previous pastor was there to baptize him.  He was there to say the funeral Mass.  He was there when we said our last goodbyes.  He was there.  For all of this, I will be forever grateful (and the fact that he is now a bishop is pretty cool). 

Why do I care?  Why does this still bother me after all these years? 

Because of faith.  Because I believe that he should have been there.  Tommy and I were broken and needed guidance.  He was not there.  It doesn't matter that there were hundreds of other people who were there for us.  At that time, we needed him.

A few weeks after we lost Luke, I went to pick Em and Matt up from school (which was a chore in and of itself--seriously, I have never felt so out of place as I did when I went back to my beloved school without my baby).  I saw the pastor in the office and he asked (in a very flippant way) how I was (I truly believe he had no idea who I was nor wanted to know how I was). 

So I looked at him.  I felt the tears building up.  I said "you know that my baby died?".

"Oh yes" he said.  I think we made some small talk and he said a prayer with me. 

And while I appreciated the prayer, it just wasn't enough to make up for when he wasn't there to say a prayer.  When he wasn't there to pray over our baby as he lay helpless in a hospital bed.  When he wasn't there to comfort us as we held our baby after he had left this world.  When he wasn't there to say a funeral Mass.  When he wasn't there when our lives had to go on without our boy.

We needed our pastor and he sent his vicar (who did an amazing job) to do his "dirty work".  I felt (and still feel) jaded.  Was our baby not important enough for him to care?  Did we not give enough money to the parish to earn his support? 

I have seen him give other families this support, why not us?

OK, I think I have said enough.  I am sorry if I have offended anyone.  But priests, preachers, rabbis, etc. are all human.  They all make mistakes.  Maybe someone will read this and will remind his/her spiritual leader what is important.

We are all important. 

We are all His chosen ones.

I pray that our former pastor will realize that each and every life matters. 

And I pray that this post will help me release some of the bitterness.  The anger.  The questioning.

May God bless you all!

PS  Emily, Matthew, and James are growing so much.  Em will be 11 next month and Matthew will be 9.  James is 4 1/2, but always tells people that he "just turned 4".  They keep us busy and they really keep us laughing.  We are blessed with them and I am sure that their brother is proud of who they are becoming.    

New Normal?

I think I first heard that phrase used after Luke was born. 

NEW NORMAL.

Huh?  What do you mean?  What exactly does "new normal" mean?  I don't want a new normal.  I just want my son home.  Healthy. All I want is my "old normal" back.  I want that innocence.  I want all four of my children here with me.

I'm sure that many of you have heard the term "new normal" before.  Maybe you lost a loved one, maybe your child was born with an issue requiring long-term care, maybe a car accident changed your life.  New normal.  That's what you hear.

Tommy and I have experienced a few "new normal" episodes over the past five years:  Luke's birth (followed by his diagnosis), James' birth (followed by his diagnosis), two moves across the country.  I have been able to reconcile with each of those new normals.  They each came with their own battles, but I was able to deal with it all. 

There is one new normal that I will never be able to get used to:  Luke's death and the new normal that came with it.  Tomorrow marks 5 years since he has been gone.  I cannot believe that five years ago was the last time I heard him cry or the last time I held him. 

What's normal about outliving your child?  What's normal about burying a baby?  What's normal about living the rest of your life with part of your heart missing?  Luke couldn't live missing part of his heart.  Why is it normal for us to live missing part of ours?

New normal?  No.

As the years go by, there are certain things that sting more than years past. 

The finite amount of pictures.  Seriously.  I am forced to use the same pictures of Luke again and again.  He never gets older.  He will never take another picture.  Thankfully, my father and sister made sure that we had a lot of pictures of Luke.  Unfortunately, the pictures stopped on April 18th, 2008.

His age.  The first year was hard.  The subsequent years were also difficult, but the pain was a lot less acute.  This year?  This year is hard.  He would be five.  Five.  Kindergarten.  Writing his name.  Riding a bike.  More independent.  I fear the fall when kindergarten begins.  Although it will be awesome to see all of my friends' children heading off to their first day of kindergarten, it will also hurt my heart to know that our son never had the chance to have a first day at any school.

The fear that he has been forgotten.  I realize that people move on.  I get it.  Does that mean that I have to forget, too?  I don't expect anyone else to think of him as often as I think of him.  Why would you?  I gave birth to Luke.  I fed him.  I held his hand in the ambulance as he was slipping away.  I prayed with my husband that night, telling God that we would be ok if He took Luke.  These are my memories and they are etched in my heart.  I will never forget.  But as the time goes on, I see it.  I see people moving on.  I hear it.  I hear his name fewer and fewer times.  I feel it.  I feel it in my heart when I realize that I am the only one who is thinking of him. 

Does this sound like a wonderful new normal to you?  Not me.  I don't want it.  I want my old normal back.  I want my son. 

Before you think "oh my, this lady has gone and lost her mind!", be assured that I still have my faith.  I have faith that I will see Luke again.  That our God is a God of grace and that is what He gave Luke (and us) on the night we lost him.  But it doesn't mean that I can't mourn.  It doesn't mean that I have to feel good about our new normal.  It simply means that my son is in paradise, watching over us.  We will see him again and that is what keeps us going.

If you are reading this, you remember him.  Thank you.  Please take a moment tomorrow to say a prayer for those who have lost a child.  So many are mourning and it seems so unfair.  Maybe if we all pray for a second or two, each of these parents will receive a little sign from their angel(s). 

God bless you and thank you.

five years.

Dear Luke,

Tomorrow marks five years.  Five years since you left the safety of my womb and began a fight for your life.  Five years since I first laid eyes on your sweet face.  Five years since I noticed that you had Daddy's nose. 

Five years since I noticed your hands.  They were blue.  You couldn't nurse because it took too much effort. You kept falling asleep.  Five years since my world came crashing down.  Five years since they whisked you away in a helicopter.  Five years since the thought of losing you became real.

Oh baby boy, I miss you so much.  You have no idea.  You can't imagine the pain that we all feel without you.  Mommy, Daddy, Emily, Matthew, and even James.  I know you have met him.  I am confident that he knows you.  I am certain that you showed him the way to our family.  So many people miss you Little Bubba.  Gramma, Grampa, Nana, numerous aunts, uncles, and cousins.  I have so many dear friends who talk about you all the time.  They remember you and they make sure that I know that.  I need that, sweet Luke.

WOW!  Five years old!  That is quite a milestone for boys and girls.  Maybe that is why this year, your birthday is harder for me.  You would be starting kindergarten in the fall.  You would probably be learning to ride your bike without training wheels.  I'm sure you would be quite the swimmer this summer and  you would be having a blast playing baseball with your brothers.  Mommy wishes you were here to celebrate all of those childhood rites of passage. 

I remember taking a walk with Daddy when you were still with us.  I will never forget that walk.  We were talking about you and what to expect for your life.  I remember Daddy telling me, "I don't know what's better, Luke living for just a short time...or having to tell him when he is 20 and has his adult life ahead of him that his heart may start failing and he may need a transplant soon."  Neither is better, sweet Luke.  Frankly, they are both horrible scenarios.   

As I told Daddy tonight, we didn't get the chance to make many memories with you during your short life.  I miss those memories.  How crazy does that sound, little boy?  I miss the memories that we never got to make.  I miss what we were never able to do.  I miss the future that you never had.

Luke, you are truly a bringer of light.  Daddy and I were just talking about what a good baby you were.  You were so easy going and so quiet.  Everyone who met you loved you.  I only wish more people would have been given the chance to meet you.

Wow, were you a precious sight.  Definitely a gorgeous boy.  God made sure to make you perfect on the outside, even if your heart was incredibly broken on the inside.  Your eyes were those of a wise old man, one who had lived a full life and had so much wisdom, more than I could ever hope for.  Under that sweet nose laid a precious little mouth, definitely Great Gramma's mouth.  Very cute and very kissable.  Yup, God made you so perfectly Luke.

Baby, please pray for Mommy.  I have a lot of things on my heart right now and I need some guidance from God.  Please intercede and ask him to help Mommy discern what she needs to do.  Pray for Daddy.  Please pray that he continues to do well at work and that he knows how wonderful we think he is.  Mommy loves him so much and your life and the lives of your sissy and brothers have made that love so much stronger!  Thank you for that.  Little Luke, please intercede for Em, Matt, and James.  Please ask God to remind them how special they are and how loved they are.  You are all so cherished.

Luke, I love you so much.  Thank you for teaching me grace and for showing me what is important in life.  Thank you for helping me grow in my faith and thank you for being our boy.  I hope that you have a happy birthday in heaven and that you catch the balloons that we will send up tomorrow...your sister and brothers are counting on it!

I love you and would give anything for you to be here tomorrow.

Love,
Mommy

*****************************

 



*  This is what gets me through the tough days:

James 1:2-3  Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.

And it just so happens that this verse helped us decide on Sweet Baby James' name.  :)

Thank you.

Tomorrow is the day. Four years ago we lost our precious boy. Four years of missing him. Four years of wondering. Five and a half weeks is too short. Way too short.

I had a short 2 1/4 mile run today to see what sort of condition my knee is in (which is much, much better--thank you for the prayers). As I was running, I thought a lot about this post. I thought about what I wanted to say and how I wanted to honor our little boy.

I don't want to make this a sad post. Believe me, tomorrow will be tough enough without blogging about how down I will be. I think you all know why it will be difficult.

I decided that I want to use this post to say "thank you".

Thank you for giving our family so much support over the past few years. Some of you have known me and Tommy for our entire lives. Some of you have known us since we began our lives together. Some of you didn't meet us until after we lost Luke. Either way, you have all given us so much love and so much prayer. Through you all, we have made it through the bad days and have been able to celebrate the good ones.

Thank you for remembering him. So many of you have visited him when we are physically unable to, whether it is at his special place or at the garden that he shares with Mason and Matthew Bass at St. Anthony of Padua. You have written me notes (and I am so very sorry if there has ever been a time that I haven't responded--I adore each and every kind message). You have posted his picture on Facebook or shared his story on your wall. You have donated to Luke's Tree in his memory. You always remember that I am the mother of four. That I carried four children. You have been a mother, a father, a sibling, an in-law, a cousin, an aunt or uncle, a friend.

For each person who forgets him, many more remember him just by reading this message...

...and for that I am so very thankful.


Thank you to my husband. Tommy is my rock. He is a shoulder to cry on and a hand to hold. He helps me get through the tough moments by letting me cry and just by listening. It can't be easy to deal with me (just ask my parents or siblings), but he does it with a smile (usually). We didn't expect this. We didn't ask for this. But the way in which Tommy deals with losing Luke and how he deals with me are quite admirable. He knows he will see Luke again and that is all that he needs to know.

I also want to thank God.

Each and every day, I see children who are battling this horrific disease called hypoplastic left heart syndrome. The ones who are living are true warriors--they fight and fight and fight. Each and every one of these children matter. Each and every one of them has contributed so much to our world, every day fighting for their lives. Their lives are worth it. They are still here because their job is so very important.

The ones who have become angels did not lose their battles. No. They won. They beat this disease. They did their jobs and God was ready to welcome them home. They fought. Mercy is theirs. Grace is theirs. One day, may we all be so lucky to live in paradise.

Thank you, God, for showing our boy mercy. For showing him grace. He has joined family members and has welcomed even more. No more ivs. No more ng tubes. No more meds. No more surgeries. He is whole and I can't imagine how happy he must be.

I know a lot of you have seen this picture, but may not know that it was taken the night before we lost Luke. It's one of my favorites.

Again, thank you for remembering him and for being so kind to our family through the years. I wish that the people who have met me since we lost Luke had gotten to know Old Bernie. I've changed a lot and I really miss a lot about Old Bernie. I'd like to think that I was a lot more fun and a bunch more exciting! But I am trying to embrace New Bernie--the Bernie who has tried her hardest to be strong, but who still has weak moments.

I wanted to pass along a link to the race that I am running on Sunday. It is called the ZOOMA Women's Race Series and I am excited, nervous, and terrified all at the same time. They profiled my running story on their website and I thought I would let you read a little about why I am running this half marathon:

http://zoomarun.com/2012/04/a-run-to-remember-and-celebrate/

My knee is doing better and I am hoping to "use my whole heart" during the run. I am only looking to finish and could care less about time. Maybe next time...

May God bless you and may you continue to remember those who have gone before us...