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...

If I had known.

It started so innocently this evening. Sitting in Mass. Listening. Singing. Braiding Emily's hair. Then it hit me.

Four years ago tonight is the night that I sat in Tommy's car. I cried. I screamed. I yelled out to God. Frankly, I'm surprised that none of the neighbors called the police on this crazy lady. All the while, I had a beautifully perfect baby boy waiting inside for his Mommy. A perfect child with a horribly broken heart.

I asked Tommy if today was truly the anniversary of the day that I sat in his car and fell apart. He confirmed that it was.

Then it happened. Right then and there in church. The waterworks. The quivering lip. The deep breaths.

And it made me think.

If I had known.

Known that Luke would not live longer than his 5 1/2 weeks here on earth. Known that he had less than a week left with us. Known that he would be gone in a few days.

There are a lot of things I would have done differently if I had known.

I never would have put him down. I know of parents who made sure that their sweet angels were held by someone each moment of their precious lives. I would have done the same for Luke if I had known.

I would have allowed Emily and Matthew to play with him more. To hold him more. Frankly, they were robbed of time with their brother just as much as we were. Maybe more.

I would have savored each and every cry. The smell of his hair. His feet. His eyes.

I would have been able to prepare myself for what happened after he died. The viewing. The funeral. The grief.

I would have let more people come to meet him and to hold him. He was so very fragile that we had to be careful who was around him. So many people never got to see him until his funeral. That wasn't fair to them. That wasn't fair to him.

I would have spent less time worrying and more time enjoying. If I could only look at him one more time. Hold him one more time. Kiss him one more time.

I would not have spent an hour in the car that night. Crying. Screaming. Yelling out to God.

I would have marched inside, grabbed my baby boy, and loved on him. I would have prepared myself and him for what was to come a few days later. I would have told him how I felt about him. I would have told him how proud I was of him. I would have told him how difficult it was going to be for me to let him go. How scared I was. How much I needed him here. How much I would need him when he was in heaven. I would have told him how thankful I was that he was given to me. I would have told him that giving him back would be the most difficult thing that I would ever do in my life.

But the truth is that none of us know. We need to live life to the fullest and that is one of my biggest regrets with Luke. I still have issues with worry and with fear, but I pray that I am getting better. One day at a time.

Please remember our sweet boy with a thought or a prayer on Wednesday.

Mommy is running her first half marathon on the anniversary of Luke's burial. My knee began giving me (a lot) of trouble in today's run, so I ask for prayers that ice, meds, and TLC will ease the pain.

Thank you and God bless!

Four Years Old

Once again, it's been a very long time. Maybe I'm busy. Maybe I'm healing. Maybe the blog thing is no longer for me.

Whatever the reason, I haven't been blogging. If you are friends with me on Facebook, you can be pretty sure that you know what's going on in my vida: we moved from Tennessee to Georgia in the fall, the kids are getting big, we are all making new friends while missing our old friends, and Mommy is training for a half marathon to be held on the anniversary of the day that we buried Luke.

I felt the need to blog tonight, though. To remind people that tomorrow is our baby boy's fourth birthday. To remind everyone that he is a part of our family. To remind them that he lived.

WOW, did he live.

At first, I thought about writing Luke a letter. To let him know how much we miss him. To let him know how much we wish he was here. To let him know how much he means to us. To ask him about heaven. To ask him if he misses us. To ask him what it's like to live in paradise.

But these are things that I wonder all of the time. I believe that Luke hears me when I cry. That Luke knows when I miss him. That he understands the void that is in our lives without him here. I don't need to write him a letter in order for him to know my heart. He knows his Mommy. That's for sure. He applauds me when I am up and he helps me when I am down. No, I don't need to write him a letter.

But I do need to write you all a letter, to let everyone know what things are in my heart. Here goes nothin':

Dear (insert name here), :)

Four years ago tonight, I fell asleep, anxious to welcome our newest addition: a sweet baby boy filled with surprises. I loved him as soon as I knew that he was in my womb. As soon as I knew I was a mommy for the third time.

That morning, Tommy and I woke up, full of anticipation and joy. I laughed through my contractions and I remember vividly the nurses telling me how funny it was that I laughed. When Luke was born, the first thing I noticed was his nose and then his ears as they laid him in the warmer beside me. I didn't notice his hair at first, but I noticed it quickly after. Luke was my only child who was born with a lot of hair.

Then things started to change. I started to notice things that weren't quite right: his blue hands, falling asleep while trying to nurse, general lethargy. The nurse must have noticed, too, because she checked his heart again and heard a "loud" murmur. Later, we heard the news: Hypoplastic Left Heart Syndrome.

Luke lived through the Norwood Procedure (open heart surgery), a vent, numerous blood transfusions, countless meds, ng tubes, and many other procedures. He came home eating from a bottle and gaining weight. The first week and a half were good. Tiring, but good. He ate, he gained weight, he slept. The week before he died, Luke had some issues: he was vomiting a lot and his sweet little nose was turning pink while he would sleep. Doesn't sound like a lot, but it wasn't Luke. That was new for him and new to us. When we alerted the cardiologist on April 18th about these things, she dismissed them and prescribed some new meds for Luke to begin that night.

He never got to take those meds. Luke died that night. Luke died a scary and distressing death. I don't talk much about how Luke died. But it is ingrained in my head and sometimes I can't even believe that I was able to live through it: through the initial comprehension of what was happening, through the realization that he was dying, through the ambulance ride, through the time in the ER, through the prayer that Tommy and I said, telling God that we would be ok if He took our baby. How did we live through that? Did it really happen?

The feelings that I felt the day of Luke's birth as well as the day of his passing have changed. The feelings I have now are different. I still miss him more than anything. I still cry sometimes when I think of him. I still "introduce" him to strangers.

But my feelings have changed. In some ways, this fourth year of his everlasting life in heaven has been more difficult than previous years.

It has become increasingly clear that people are forgetting about Luke. I have to be ok with that. He wasn't their child. He didn't grow in their womb. Why should I be so selfish as to think that everyone would remember him? But still. I want people to remember him. I need people to remember him. Especially family. I don't expect anyone to understand this and many people may think that I am being unfair or that I am expecting too much. Maybe I am. But I have to be honest.

But I have to let you know that I'm okay. Really, I am. I don't need a counselor, or meds, or anything. I need my family, my friends, my support system.

I need to grieve.

I am Bernie. I grieve the way that I grieve. I never took a class on how to deal after your baby dies. I never learned the right or wrong things to say or do after burying my son. I can't grieve the way that another angel mom grieves and she cannot grieve like I grieve. I am not able to turn off my sadness because it has been four years. I am not trying to make anyone uncomfortable by talking about him. He is my child, just as Em, Matt, and James are my children. Just because I talk about him doesn't mean that I love them any less. I love them more than anything and am so blessed that they are mine. But I am missing one of my babies. I don't have him here. I am begging everyone to understand that and to be respectful of that. Please. There is not a time limit on grief. It is what it is.

Tomorrow we are celebrating Luke's birthday with the kids. We will celebrate, as always. Tommy and I want them to remember that we always celebrated Luke's life and never forgot him. When they grow up, we want them to look back fondly on March 12th as a day of joy and thanksgiving for a special soul who we lost way too soon. Tomorrow, we are checking Emily and Matthew out of school early (James doesn't have school on Mondays) and the five of us are headed up to Dave and Buster's for some family fun. We'll come home and celebrate with cake and a balloon release up to the heavens. They have no idea where we are going and keep asking us what we are doing. They seem really excited, which is all that we want. Gramma, Grampa, and Nana will visit Luke at his site tomorrow, something that we haven't been able to do for two years. Something that pains me each and every time I think of that sweet boy.

I'm sure that this letter rambles (of course, if you have ever had a conversation with me, it's not surprising), but I wanted to talk about our brave boy. Our boy who did so much in such a short amount of time. A boy who was so much stronger than I could ever hope to be.

If you are reading this, I know that you remember him. You may even love him. Either way, I am truly honored that you have read this note. Thank you.

Happy happy birthday to our Wittle Bubba. We miss you. We love you. We are so glad that you are our always baby boy.