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.