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.

Hello Again.

It's been a while. It's been a long while. I didn't even write a post on April 18th. Not sure why, I just didn't do it. Not that the 18th wasn't just as painful as it was over three years ago. Not that my heart wasn't in pieces on that day. N0t that the physical pain still cut so deeply. I don't know why I didn't post.

I think there are many reasons as to why I haven't posted since Luke's Angel Day. Frankly, I'm really not sure if anyone reads the blog any longer. The messages have become fewer and the views have dwindled.

That's OK.

It's OK because I am in a place where I don't need to blog my feelings as often. Truthfully, those who care know how I feel. They know that my heart still hurts each time I hear his name. They know the awkwardness I feel each time someone asks me about my children. They know me. They know my pain.

I still hurt.

It's really difficult to put my feelings into words. It has been three years. Believe me, I realize that. I realize that each and every morning when I wake up and remember that one of my children is missing. He doesn't get to play with his brothers and sister. He doesn't get to fight with them. He doesn't get to laugh with them. Maybe I should be over it, I don't know.

But I'm not.

I'm not over it. I'm not over missing him. Will I ever be? Most days, I do really well. I remember Luke with happy thoughts. I remember how gorgeous he was. What a good baby he was. How amazing he was.

Then there are "those" days. There are days like Tuesday. Days when all of the bad memories come flooding back. Days when all I can do is cry. Days when I yell to God, asking Him "why Luke? Why my baby?". Days when the anger at people is so raw I can physically feel it. Days that I wish I could erase.

A lot of times I feel so abnormal. I feel like I am stuck in this alternate world all by myself. Everyone else seems over it, why not me? Why can't I let go? Why am I so alone?

But then I think.

Why should I let it go? Why does it matter to me if others have forgotten my angel? It's their loss, right? I carried that sweet life inside of me for nine months. I felt him move, his hiccups, his tiny kicks. I knew him more intimately than anyone else. I know that I will never get over losing him. I will never stop talking about him. I don't think I should ever apologize for talking about him. If no two people grieve the same, then why should I not be allowed to grieve the way that I need to grieve?

When I began writing this blog, I was in a much different place than I am now. I had recently lost my sweet baby. I was *secretly* pregnant with my fourth child. It was a place where I could come to vent, to ask for prayers, to express my emotions. The blog really helped me. It has helped me stay connected with friends and family. It has helped me develop new friendships. It has helped me share my innermost feelings.

Now it's different. I don't need the blog like I used to. I don't think to myself "I need to blog about this". I don't check it daily for comments or views.

It's strange to see the evolution of my grief: I can "see" it on this blog. My grief is still overwhelming at times, but it is getting better. I pray that one day the grief will disappear, but truthfully I'm not sure if that will ever happen.

On a side note, please continue to pray for my nephew Greg. He has completed his chemo for Hodgkin's Lymphoma and will begin radiation soon. His battle is almost complete and we are so thankful for complete healing. I am so proud of my sister Rita for her strength during Greg's treatment. She has taught me a lot. I am so happy for Rita, Mike, Clare, and Greg. God bless you all!

Closer.

As Luke's Angel date grows closer and closer, I really have no words for the way I feel. In some ways this year has been easier. In other ways, much more difficult. It pains me as his memory is wiped from many people's minds. It is difficult to mourn when I feel the judgement of others. On the other hand, the sad moments are further apart and they are replaced with thanksgiving that God saved Luke from a lifetime of suffering. I wanted to share a guest blog post that I wrote for Congenital Heart Awareness Week. You see, heart moms are a close knit group and I have met many awesome women through our experiences. One of those moms is Michelle who I "met" through a mutual friend last year when her son Sawyer was born. Sawyer was born early and, like Luke, had a major heart defect that went undetected in-utero. Sawyer passed away at two days old from complications due to ToF and PA. You can visit Sawyer's page at http://www.sawyersheart.blogspot.com/ to see the wonderful things that Michelle and her husband Erik are doing to help others. Here is the entry. Truthfully, it's pretty blunt at times. But remember that it was posted during National Congenital Heart Defect Awareness week and it was my duty to make others aware of the ugly truth about heart defects. I guess you could say that our heart story began in July 2008. We found out that we were pregnant with our third child. We were overjoyed with the possibilities that a new life would bring to our world. After all, Emily and Matthew had already brought us such joy (ok...with a bit of frustration at times). To add a third child to our family just seemed like the perfect plan. The pregnancy continued without a hitch. When we went for the “big” ultrasound, we found out that our baby was a girl. To say that Emily was excited to have a baby sister would be an understatement! I remember asking the tech if she saw what I saw (as in, a little penis) and she told me that she thought she saw “something” but that no, it was a girl. But she was healthy and that is all that really mattered to me and Tommy. About 9 weeks later, I was still not convinced she was a girl, so I had my OB check the baby's sex once again. She assured me that there was a little girl hanging out in my tummy. Even though I took her at her word, I still knew that something was not right with our little girl, Ava “Caroline”. Fast forward to 37 weeks pregnant. I went for our final ultrasound to make sure that Caroline was head down for delivery. At that time, I asked my OB to check the sex “just in case”. Lo and behold, she saw testicles. Yup, Caroline was a BOY! My OB sent us down to get a more in-depth ultrasound to double check the testes status. It was confirmed: Caroline was a Luke. I remember hearing his heartbeat a lot during that final ultrasound, but when I asked the tech about it, she blew me off and told me she was listening to the artery in his umbilical cord. I knew that something wasn't right with Luke. March 12th, 2008 started out as an amazing day. Tommy and I woke up (but did I even really sleep?) bright and early. I called the hospital to make sure that they could handle our induction. We kissed Emily and Matthew goodbye and arrived at the hospital a bit before 7 am. The induction went well and I laughed through contractions. It was perfect. And then we had this amazing baby boy. Luke Thomas. The signs appeared to me almost instantly. When the nurse gave Luke to me to nurse, I noticed his hands. I know, I know. Most babies have bluish hands right after birth. His hands were not “blueish”. They were blue. I asked the nurse and she dismissed it. Then he kept falling asleep while he nursed. I knew that something was wrong with my baby. My parents brought Emily and Matthew to meet their baby brother. The pictures of them holding Luke in the hospital room are the last pictures we have of our innocence. As the family was leaving, the nurse told me that she detected a heart murmur. That is the moment that we lost our innocence. A few hours later, we received Luke's death sentence: Hypoplastic Left Heart Syndrome (HLHS). This sounds harsh, but it is the truth. It is how I feel. Luke was transferred via helicopter to the Houston Medical Center. The few days before Luke's Norwood surgery were mostly a blur. But there are certain memories that are so vivid: the sight of our baby with monitors and iv's all over, the smell of the hospital soap, the cardiologist telling us how quickly hypoplasts can die. Luke had his Norwood surgery on March 18th, when he was just a week old. He sailed through surgery as well as recovery. He came home 13 days post-op and was eating out of a bottle rather than an NG tube. Amazing—just like him. It was good at home for a about a week and a half. Luke was growing, he was loved, he was such a good baby. It was the last week of his life that I noticed something was wrong. Again I knew that something was wrong with Luke. Luke had begun to have some issues while eating. He was having trouble drinking from the bottle and he was vomiting a lot. We went to the cardiac clinic on April 18th and our suspicions were (once again) dismissed. The cardiologist told us that Luke must have had reflux and wrote us a prescription for some anti-reflux med. I accepted her diagnosis because I trusted her, but I knew something was wrong. We lost Luke that night. I don't talk much about what happened or how it happened. We lost him and that is enough for me. Why share this story with you? Why do I keep repeating that fact that I knew something was wrong? I share this with you because I want you to learn something from Luke's life. I want you to trust yourself. Trust your instincts. Be an advocate. Let the powers that be know that you are concerned about your child's health. Whether your child has a cold, a suspicious bruise, or half of a heart...be an advocate. The thing that affects me the most in regards to Luke's life and his death is the fact that I was not the advocate that he needed me to be. I failed him and the guilt that comes with that failure is overwhelming. Almost three years later, I am confident that he is much better in heaven than he would be here with us. I just wish that I had pushed a little bit more. A few days after Luke died, my OB came to visit me and Tommy at the house. While talking with us, she shared that she had seen thickening on his heart during that final ultrasound. She admitted that to us. But then she saw his testicles and forgot all about his heart. That is a problem. Although testes are important (especially to the man to whom they belong), the fact that she “forgot” about his heart is absurd and unbelievable. This is the problem, though: heart defects are hugely under diagnosed. May God continue to bless each and every one of you!