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!

A Birthday in Heaven

THREE YEARS.

This sweet face would be three years old today. He would be running, he would be laughing, he would be talking. He would be doing so much at three years old. He would be wrestling with his brothers, he would be snuggling with his sissy, he would still be fighting for his life.

Over the past three years, I have found a lot of peace. Things are still difficult and the past few weeks (and those to come) have been filled with ups and downs. But, I have come to realize that our Luke is at peace and that we, too, need to be at peace. The pain and suffering that he would have most likely faced for much of his life was replaced with a miracle: the miracle of life in heaven.

Life in heaven. What is that like? I know that we are taught that heaven is paradise. And I believe that. But I often wonder what it is like. Do we walk in heaven? Do we fly in heaven? Do we recognize & reconnect with those who we loved & knew here on earth? Will Luke know me? Will he remember me? All of these questions are constantly on my mind.

So I have a proposition for each of you: please take the time to respond to this post with your idea of what heaven is like. What things do you believe we will see, feel, and experience in heaven? I know that heaven is more amazing than anything that we could ever imagine, but the human in me wants to know concrete details. As Luke celebrates his third birthday in heaven, I would love to hear your beliefs on what it is like to live with God in heaven. Thank you, in advance, for your thoughts. God bless you all!

A little Belated...

Our little baby turned TWO last month! I wanted to post some pics of his big day. He is growing up and is so much fun. We are so happy that James is a part of our family. Each morning, he greets us with a smile and lots of hugs. He is a joy and we are so thankful for him. Here are some pics:


Saturday will be bittersweet as we celebrate Luke's life on his third birthday. I have been pretty anxious lately and I know a lot of that anxiety has to do with his birthday. Unfortunately we cannot be in Houston to visit his site, but my parents, Nana, and some very thoughtful friends will be there to celebrate. We have some plans with the kids--they are very excited to go to Incredible Pizza for lunch! We will have a cake and release balloons. I will post on Saturday...with a special question for each of YOU!!

Please continue to pray for my amazing nephew Greg. His battle with Hodgkin's Lymphoma is halfway over and he has proved to be quite the warrior. I know that my sister Rita, brother-in-law Mike, niece Clare, and Greg would love any comments or words of encouragement. The site is: www.caringbridge.org/visit/gregpurvis. Thanks in advance for your support for the family.

May God bless you all during this Lenten season!

Healing

Healing.

I've been thinking about this word a lot lately. Not the physical kind of healing, but the emotional kind of healing. The past few weeks I've had quite a few discussions about healing with Tommy, with my family, with my friends.

I've wondered: have I healed adequately enough since losing Luke? I'm not sure...is there a right answer to that question? No.

The truth is, as his 3rd birthday approaches, I fear that others think that I should be healed. That I should remember him, but not get upset when I think about him. That line of thinking makes no sense to me. How can I remember him without getting sad? Should I just pretend that "it's all good" and that my heart doesn't sink each time I see his picture or every time I hear his name?

It finally hit me the other night: he is my child and I should talk about him. I was with some very sweet friends and we were talking about our children. I always have a difficult time with this: do I talk about Emily, Matthew, and James but ignore Luke's life? Should I just keep quiet and not talk about any of them? I mean, why can't I include him when I talk about our other miracles? They each (all four) have their own stories, their own personalities, their own lives. Luckily, these kind ladies listened as I shared about all of our babies.

When I talk about Emily, I mention her keen fashion sense, her willingness to help. When I talk about Matthew, I include his Godliness, his sweet nature. And James? I always tell people about his laid back nature and how he makes us all laugh.

So what about Luke? Can't I tell people about how he fought? How he made sure he would get out of that hospital quickly so that he could come home with us? How he waited until Tommy got home from his trip before he went to heaven? He was sick that entire week. I am confident that he knew he was dying. But he waited, he suffered that entire week so that he could spend his last few moments with his Daddy. I will never let anyone take that away from his legacy. I want to share his eyes with others. I want to share his hair. I want to share his spirit. But then I worry--will I be a Debby Downer? Will talking about him cause others to shy away from conversations with me? Probably. But if he's my child, why can't I talk about him, too? It's such a fine line.

When I write posts about Luke, I understand that people may think that I haven't healed. But I think that writing about him helps me to heal. I am not the same Bernie that I used to be, but I *think* that I am a better Bernie (although at times, the new Bernie makes me mad).

Truth be told, I am not sure how to act. I have no idea. I hope that I am healing, but maybe I'm not. I guess I may never feel healed--part of my heart was torn from my chest on April 18, 2008. How do you get that back? How can I get that back?

Please remember all of the heart warriors, both angels and here on earth during February. It is National Congenital Heart Defect Awareness Month and we need all the support and awareness that we can get! Let's heal these kids both in the physical and emotional sense. God bless you all!

Christmas with Luke

We had an amazing Christmas with Nana again this year. The kids all got things that they wanted: an American Girl Doll for Em, DS games for Matt, Little People for James, among other things. I will post pictures on another day (although lately, "another day" means 4 weeks from now).

I wanted this post to be about our Luke and his Christmas. You see, this was a very different Christmas for Luke. Nana was here with us, Gramma and Grampa have moved to Georgia, and of course we are not able to be with him on Christmas Day. One of the most difficult parts about not having Luke with us is that we are not able to visit his site since it is in Houston. I know, I know. "But Bernie, he is not there." I know that in the spiritual sense, Luke is not in that ground. BUT, it is the place where Tommy and I said our last goodbyes to him. It is a tangible place for us to see him.

OK, I'm getting off topic (which I do a lot, especially if you have ever talked to me--it takes me like 30 minutes to tell a 5 minute story and don't even ask me to repeat a joke I have heard). What I wanted to share with you is a kind act that a special friend did for me at Christmastime.

Hilary and I were in MOPS (Mothers of Preschoolers) together for a few years when we lived in Texas. I had the pleasure of working with Hilary on the leadership team and am so glad that I got the chance to know her. Hilary has gone to visit Luke before, bringing her oldest (Ty) and sharing Luke with him. A few weeks before Christmas, Hilary wrote me and asked if she could go visit Luke for me and Tommy. She said that she didn't want us to feel like he was alone at Christmas and that if it was something that would help us, she'd like to do it. She also asked if I would like to write a letter to him and that she would read it to him. WOW! Her note left me in tears and I couldn't wait to write him a letter.

So, I wrote the letter (through tears) and Hilary read it to our sweet boy. She and Ty brought Luke a tree, with special decorations made by Ty. The picture of his site is at the top of this post. You can see the tree from Hilary and her family, the tree that sweet Nana brought by before her trip to Memphis, as well as the silver Hot Wheels car that Gramma and Gramma brought him before they moved.

I thought you all might want to see the letter I wrote. I'm not even sure that Tommy has read it yet, but I want everyone to know how much we love that little soul and how much we miss him. Luke's 3rd birthday is fast approaching and I find myself getting in a bit of a funk. I am feeling quite anxious and overwhelmed. I fear that people are forgetting him and that others think that I should be over it. You never get over losing a child. It just doesn't happen. The "what-ifs" are pretty rough and they come at you without any warning.

There are many great things happening here: James will be TWO one month from today, Emily is getting an award for an essay she wrote, and Matthew will start baseball soon. Tommy is really enjoying his job and I have some really great volunteer opportunities with Le Bonheur. My nephew Greg is doing AWESOME with his chemo treatments and has far surpassed our greatest expectations. Please visit his site at www.caringbridge.org/visit/gregpurvis and feel free to leave him a message. Like I have said before, he is a great kid and he is going to kick Hodgkin's BUTT! Rita, Mike, and Clare have been an amazing support system as well as Gramma and Grampa (Gramma is a laundry maniac so I'm sure it lets Rita relax a lot more having them there).

Thank you for sharing in our story. Your thoughts and prayers for our family have gotten us through a lot of difficult times. God bless you all.

Here's the letter to Luke:


December 22, 2010

My Baby Boy,

Sweet Luke. My sweet, strong boy. I miss you so much. You have no idea the hole in my heart without you here with us. Your brothers and sister make me and Daddy so happy, but we will always miss our wittle bubba.

Christmas is one of the most difficult times of the year for me since we lost you. I love watching Em, Matt, and James open their gifts, but I can't help but imagine what it would be like with you here, too. Would we be in the hospital, waiting for your Fontan or worse yet, a transplant? Would you be growing up big and strong? Would you be whipping HLHS in the bootie? Would you and James wrestle all of the time?

WOW...you are so much better off in heaven. You don't hurt, and you are beyond happy. I do have a special favor to ask of you: will you please ask God to heal your cousin Greg? He is such a good boy and he loves you so much. He thinks about you a lot. He is scared right now, so I would like to ask you to give him special angel hugs and let him know that he will be ok.

I wish that I could come see you today, I wish that I was at your site, decorating a special tree for you. I pray that you know how much Mommy and Daddy love you and that you know that we would give anything to have you with us.

Please thank Miss Hilary for coming to visit you for me. She has come before and she is a true friend. I'm sure she would love it if you send a birdie friend her way while she is at your site.

Thank you for being our son, Luke. I hope you are amazed at what your legacy has become. Your life has helped so many people: in their faith, in the relationships, and through Luke's Tree. Who would have ever imagined that our tiny little baby would make such an impact on people's lives? Following in great footsteps, I guess, especially at Christmastime.

I know that you are not in your site, but that you are all around us. Still, I can't help but fear that you are cold and alone. I would love it if you could give us a sign that you are near...maybe on Christmas Day? :)

We love you very much and we are sure that you are celebrating Jesus' birth in style up in heaven!

Love you so much baby boy,
Mommy
...and Daddy, Sissy, Bubba, and Bubby

Luke's Tree 2010--in pictures!

We we able to bring these boxes to the families who were in the CVICU on Christmas. They contained blankets, toys, gift cards, etc.

There were 6 patients in the CVICU on Christmas who received the boxes

The Tree

My girls helping organize

More of my girls...

Even more of my girls...they ROCK!

Yup, all those bags are filled with toys for good girls and boys!

Toys, and bikes, and kitchens galore!

Yummy goodies for the families

This is what happens when you give the kid a cake pop!

Emily helped us pass out the wrapping supplies

...and he was a happy boy the whole time

Gramma and Grampa helped us so much...wrapping parent gifts, organizing the gifts, doing gift inventories, picking up & dropping off the U-Haul trailer (yes, we had so many gifts that we needed a trailer to bring them all to Le Bonheur).

THANK YOU SO MUCH TO GRAMMA AND GRAMPA!

With Whitney and Linda--they are awesome staff at Le Bonheur!

ALL GONE!

We would like to thank you all for your support this year. Last year was awesome, but this year was unbelievable! We received some very nice notes and comments from a few of our families and I want you all to know how much they appreciate your help. We are so blessed to be part of such a special project.

Luke's Tree had the opportunity to be featured in not one, but TWO newspaper articles. Here are the links:

www.commercialappeal.com/news/2010/dec/19/healing-hearts-one-gift-at-a-02/

www.memphisdailynews.com/editorial/Article.aspx?id=54541

We are very thankful for the awesome reporters who shared our special project with the people of Memphis.

We are also thankful for the amazing families who we have met on this journey. These families are facing so much uncertainty, but they face each day with a smile and with optimism. Unfortunately, Luke's Tree lost one of its own on New Years Eve. It was heartwreching to hear of this sweet baby's passing, but Tommy and I feel so blessed that we were able to meet his mom and dad (and we even got to see the baby when we brought the gift boxes to the families in the CVICU at Christmas). I was also very lucky to have attended this sweet soul's funeral yesterday. I wish every child could experience the love that this little boy received from his parents and that love was so evident yesterday.

Thank you, also, to the staff at Le Bonheur. Many on the staff adopted families and we would not have been able to do any of this without Le Bonheur's help. I love being a part of the Le Bonheur Family!

God bless you all and have a wonderful week!