Triggers

Have you ever walked by someone who is wearing a familiar perfume and it made you think of your grandmother? Have you ever seen a butterfly and it sparked the memory of chasing them with your best friend? Have you ever heard a name and thought immediately about a loved one who shares the same name?

These triggers are usually happy ones, ones that lead to the memories of wonderful times. I have a lot of happy triggers, like when I go into James' room in the morning and I remember all of the trials he has already endured in his life. Another one is when I see Emily skip and remember when her arthritis caused her to lose that ability. When I see Matthew's bike helmet, I recall how quickly he learned how to ride a two-wheeler (even before Emily did). My parents' mountain cabin is the constant reminder of the night I found out I was pregnant with Luke--an amazing memory. One of my favorites is every day when I look at the bridal portrait on my bedroom wall...it reminds me of the most beautiful day when I married the man God created for me.

I also have triggers that break my heart. They remind me of the hole in my heart that was created the night we lost Luke. That hole will never be filled...it will always be empty. I have a number of triggers that tear me up inside...

* The mention of the name "Luke". I never realized how popular his name is.
* When people ask me how many children I have. The majority of the time, that question leads to a long, drawn out story of our kids. I feel badly for the person who asked, but I cannot ignore the fact that I have four children. I cannot ignore his life. He is mine and I gave birth to him. No one (and I mean no one) can deny the fact that he lived--I won't let them.
* Orange and brown car seats. I loved, loved, loved Luke's car seat and that is where he sat while in the ambulance the night he passed.
* A heart picture...it can be a picture of a real heart or a drawn heart. Any heart makes me think of my heart baby.
* Pregnant women. Yes, I know I have been pregnant 4 times but I will never have that "ignorance is bliss" again in my life. I wish I had that again.
* Seeing children who are the same age as Luke. It reminds me of what he would be doing and how he would be growing.
* Any children's hospital.
* Cemeteries and funeral homes, especially the funeral home down the street from us. It is run by the same company who handled Luke's funeral.
* The box in my closet that holds the letters, Mass cards, books, etc. that were sent to us after we lost Luke. I see it every day and open it every so often. Tommy knows that the end result will be tough after I open that box.
* The smell of hospital soap. Ugh.
* St. Anthony of Padua. The mere act of going to Mass there (when we visit Houston) is a difficult one for me.
* When people tell me I am busy with the three kids. I want to tell them that I have four children, not three. Truth be told, I do that more times than not, but the other times I just smile and say "yes, I have my hands full".
* Medical dramas on tv. There is a reason I don't watch Grey's Anatomy any longer.
* Jimmy John's Sub Shop. This is where Tommy, Em, Matt, and I ate after we found out that Luke was not Ava Caroline. This is also where we decided on his very excellent name.
* His picture. Every time I pass by a picture of him, I take a very deep breath.
* Pulse-Ox machines. Enough said.
* Ambulances. I have always said a prayer when ambulances pass us, but that prayer takes on a whole new meaning now.
* The number of a doctor's office popping up on caller id.
* Matthew talking about Luke. I am serious...this kid has a direct line to God and to Luke. He is so deep and amazing in his faithful thoughts.
* The smell of fresh flower arrangements. I was at Mass last night and walking around with our (now walking) little boy and I smelled a familiar scent: the smell of fresh flowers. There was a beautiful arrangement in the Fellowship Hall. I distinctly remember how wonderful the flowers smelled the day of Luke's funeral. The smell filled the church and later, my parents' house.
* My father. I have said this before, but he and Luke had a very special bond. I still see the pain in his eyes and it kills me.
* The Communion of Saints during the Consecration at Mass. I know that our baby is there at the altar "breathing" on the candles, causing them to flicker. Pretty cool, huh?

Oh, there are so many more triggers, both good and bad. I just wanted to share some of my triggers with you. I am thankful to God for these triggers because they constantly remind me that we have a baby up in heaven who is asking God to hold us when we need Him. I will never forget Luke and I pray that he is in the thoughts of others, too. God bless you all and thank you to all of the brave men and women who have given the ultimate sacrifice for the freedom that we hold so dear.

Growing Up

I remember when I was little...all I wanted to do was grow up. I remember wanting to go to Kindergarten so that I could ride the bus. Wanting to go to second grade so that I could write a special book that only Mrs. Adamson's class got to write. Wanting to go to sixth grade so that I could have a locker. Wanting to go to high school so that I could date. Wanting to go to college so that I could learn more about myself. Wanting to find my best friend so that I could marry him. Wanting to get married so that I could be a mom.

Now? I would like to stop growing up. Seriously, I'm good. It is so cliche', but this is happening too quickly. I see the hopes and dreams that I had when I was a child in the eyes of my own babies. I see the little girl who is about to start second grade, the little boy who will begin kindergarten in the fall, and the baby who *gulp* will attend Mother's Day Out next year. Where has the time gone? Where are my babies? They are growing up and it is too much for me.

This beauty is truly becoming a little lady. She may not be a morning person and she may not always be nice to her little brother, but she has a very gentle heart. I have watched her with her friends and with babies and she is so kind. Is she the typical oldest child, bossy and mothering? Yes. But her heart is pure and she loves with all of it. Tommy and I are so very proud of this little girl. She was awarded a Citizenship Award at school and scored the highest in her class (along with a classmate--they tied) for her reading level. She is an over-achiever and has self confidence that I could only have wished for at her age. She is amazing and we are looking forward to her dance recital next month!

I don't think I am ready for this one to grow up. This is a picture of him after his final preschool program. He is now officially a kindergartner. He is a constant source of laughter and fun. We are so proud of his accomplishments this year. He has really taken to reading and seems to enjoy it (which has really surprised us). He is intent on behaving in kindergarten and is counting down the days until the first day. Matthew's teacher wrote the sweetest thing on his end of year evaluation: "Matthew is every teacher's dream student." I am a very proud Momma, so forgive me for bragging...but if you knew him when he was two years old, you would be proud, too. :)

There really are no words for this one. He has brought such joy to our lives and it pains me to think of all that he has been through. He's a tough one and he gives us a run for our money. He is learning new things each day and he is growing up way too quickly. He is so friendly and says "ha" (hi) to everyone he sees. We are so happy that he is our baby and that we were blessed with his life.

I can't think of Emily, Matthew, and James growing up without thinking of our angel who will never grow up. Luke is perpetually 5 1/2 weeks old. He will always be a baby and we will never know what a grown up Luke would be. We will never get to see him go to preschool, to kindergarten, to college. He will never get married, he will never be a father. He will always be our baby. This is one of the most difficult things that Tommy and I face each day. We are at peace with God's plan for Luke, but as his parents it is still difficult not to think of what might have been.

Before I turn in for the night, I wanted to share the story of the Huggins Family with you. Kyle and Christie have three great children: Lauren, Blake, and Tristan. I "met" Christie through Carter Oswalt's blog (www.caringbridge.org/visit/carteroswalt) and we had a great conversation last week. Christie and I have a great connection because we are both heart moms. Lauren and Blake are twins who were born a few months before Luke. Lauren is heart healthy, but Blake has HLHS just like Luke. Blake is a warrior and has achieved some pretty amazing feats. He has had his first two surgeries (Norwood and Glenn) and will have his Fontan next month. PLEASE pray for this family while they travel to Vanderbilt for this surgery. Tristan is Kyle and Christie's third child. He was diagnosed with a particularly lethal form of HLHS (yes, there are varied degrees of HLHS). They were told that Tristan's heart was so broken that he wouldn't even make it to birth. Christie gave birth to Tristan on May 2nd at 25 weeks gestation. He lived in their arms for an amazing 23 minutes. Christie wrote the most wonderful tribute post to him on her blog at www.kyleandchristieplus3.blogspot.com. Please visit to see pictures of this gorgeous family and please add them to your prayer list. As I said, Christie and I spoke last week and we had an instant connection. She is so strong and really gave me a lot of hope. She also gave me some information on a research study that is going to look at CHDs and genetics. If you are a heart family and would like more information, please drop me a line. Thank you to Christie for sharing your heart and your story...I am in awe of you.

Once again, God bless you all. We are anxiously awaiting a fun-filled summer, full of swim lessons, VBS, and trips to the museum.

Happy Mother's Day!

Happy Mother's Day to all of the amazing mommies out there. Happy Mother's Day to the ones who kiss boo-boos and give unlimited hugs. Happy Mother's Day to the ones who cheer when their baby is up to bat and to those who watch with awe as their princess dances on stage. Happy Mother's Day to the ones who are sitting next to a hospital bed, begging God to save their child and to the ones who have cradled their little one in their arms after they went to be with God.

None of us have the same story, but we all have the same bond. Being a mother is the most important job I will ever do. It is a gift that was given to me and I cherish it with all of my heart. I am not a perfect mommy, just ask my kids. But, I do take my job seriously and realize that it is my responsibility to teach my children to be good, faithful people. I am a work in progress and I pray that God (and my children and husband) continue to forgive my mistakes and applaud my successes.

Again, Happy Mother's Day to each of the beautiful mothers reading this blog. A special thank you to my mother because without you and your guidance, I wouldn't be able to handle any of what life has thrown at me. You are an amazing woman and you need to give yourself more credit for the job that you have done with the FIVE of us. To my mother-in-law Nana, thank you for teaching your son to be strong, caring, and empathetic--he is my rock (and he's pretty darn cute, too). God bless you all and enjoy the recent pics and videos (my sister Rita told me it was time to post some stuff).

Big boy Matthew up to bat!

James loves to eat...seriously, he eats more than Em and Matt combined.

My mom planted some peonies last year in Luke's memory and they really took off this year. Simply beautiful, just like him.

James and my gorgeous girl playing with the Cozy Coupe.

This is the epitome of our Matt.

NO STITCHES! Look at that tiny little tongue. There's also a little hair up there.

This is our sweet boy dancing. He just LOVES to watch Yo Gabba, Gabba. If you haven't seen the show, you need to check it out--it reminds me of a show that would have run in the early/mid 1970s. It's far out, man.

James is walking (sort of). He is not doing a lot on his own yet, but the skills are there and he will walk to get what he wants (i.e. M&Ms or the door out of church). Not to worry, though, as Emily and Matthew were very late in walking and they are just fine. My kids just like to be lazy, I guess. Hmmmm...wonder what that says about me and Tommy?

A note from Aunt Katie

Hi everyone! This is the time that I have been dreading all day. It was about right now two years ago that Luke went into distress at my parents' house. There was a flurry of activity and a lot of fear. I have a lot of memories from that evening, many that I would rather not have. But my memory of the peace that I felt that night is probably the strongest. God gave me the gift of peace that night--I needed that. I know that Luke is where he was always meant to be, no matter how much I wish he was with us.

I wanted to share a note that my sister Katie wrote about her memories of April 18, 2008. I read this today and it really touched me. It is a wonderful example of what Luke means to all of us. Thank you all for your thoughts and prayers, especially today. God bless you all!

I woke up at my parents' house in Houston. I was down for work, and I stayed there so that I would get some time with Baby Luke. He had been home from the hospital for a couple weeks, and it was great to see him at home.

The night before, I had fed him his bottle and snuggled with him. I got to do that. I got to hold him. Two of my sisters never did. That morning, I woke up, got ready for work, packed to go home, and slipped in to his room to see him before I left. He was sound asleep in his bassinet, so I just whispered goodbye, and I headed out.

I had an uneventful day at work, and caught my flight back to Minneapolis. Somewhere above Oklahoma, Luke became an angel. I didn't know until I got home. The phone rang (it was after 11 PM, so that was odd). I asked Tom who was calling, and he said it might be my mom. I asked why she was calling, and he said that it was because she was at the hospital. I asked why she was at the hospital, and he said the worst thing I have ever heard in my life: "Luke died."

I collapsed on the floor, crying, wailing, not knowing what to do. I knew Luke would be okay. But what about my sister? What about Tommy? What about my parents? What would they do? What would I do? What would Emily and Matthew do? Luke was gone. And we were left.

That moment is forever etched in my mind. Those words, the feel of the floor when I hit my knees, the sound of Emma asking her father why I was crying, the call to the airline to get my tickets for the next morning...It's always going to be there. And I don't want it. I don't want to have this. I don't want to wake up every day knowing that my sister and her husband ache for their Baby Boy. I don't want to know that my parents are forever changed.

What I do want is for people to understand how pervasive Congenital Heart Defects are. They are the absolute number one birth defect in the world, affecting 1 out of every 100 children. Some are mild, but some are, like Luke's Hypoplastic Left Heart Syndrome, major malformations that require countless surgeries and hospital stays, and often end in death.

I want people to know that Luke Thomas Haberman may have only lived for 5 weeks, but he did more and fought harder than anyone else I know.

And most of all, I want Luke to know that if I could have traded places, I would have. I love you Baby Luke. I miss you.

Dear Luke

To my sweet, brave boy:

Mommy misses you so much. I look at your pictures throughout the day and still can't believe that you aren't with us. It still isn't real to me. I wonder if it will ever be? How are things up in heaven? I bet you are having a wonderful time, running around and playing with your friends. I pray that you hear me when I talk to you. There are so many feelings that I have right now. Mommy can't even figure them out...maybe you can ask God to help me? I so wish that things were different, Luke. I wish that all four of our babies were with us. I wish that April 18th, 2008 hadn't ever happened.

I wanted to let you know that there are things that I would have done differently if I had known that it was your last day with us:

* I would have demanded an echo at your appointment that morning.
* I would have taken you out in the town, letting anyone and everyone meet a true angel on earth.
* I would have held you the whole day. I wouldn't have put you down.
* I would have taken in your sweet smell.
* I would have stroked your hair.
* I would have made sure that Emily and Matthew held you, snuggled you, and let you know how much they loved you.
* I would have looked deeply into your beautiful blue eyes and told you how proud I was of you, how you had done more in your short life than I will ever do, how thankful I was to be your Mommy.
* I would have told you how much I would miss you. That I would think of you every minute of every day. That I would cry at the thought of you not being with us.
* I would have told you not to be scared and that Mommy and Daddy knew that your life in heaven would be much better than your life with us.

Luke, the loss of our "bringer of light" has been incredibly difficult. You are missed so incredibly much. I just pray that you know how much your family and friends love you and miss you. How much you mean in our lives. How much of a difference your life has made in this world. You are amazing and I look forward to the day I can hold you in my arms again. Thank you for letting me be your Mommy...I am a pretty lucky gal!

Love you my baby,
Mommy

Easter and a BIG Prayer Request

Does he look like a totally different kid to you? He sure looks different to us!

Do you want a shirt like this for your little one? Check out my good friend, Bobbie's, site at http://www.stickymonkeydesigns.com/. Bobbie makes a variety of things, including waterproof labels, room decor, and custom t-shirts. I also have some of Bobbie's Sticky Monkeys (labels) and they are AWESOME!

"But Grampa, I want your hat and Mommy's sunglasses!"

Again, Bobbie's amazing work: http://www.stickymonkeydesigns.com/. If you don't see what you are looking for on the site, just e-mail Bobbie and she can create it!


"M" is for "Matthew"--how cute is that? http://www.stickymonkeydesigns.com/. Bobbie will ship anywhere!
A new favorite: melted M&Ms!


Waiting for Mass to begin--this kid is crazy funny!

This is truly the best pic we could get of all the kids after Easter Mass.

The men


The Ladies


I like this pic of the two of them. Daddy and his little princess...boy does she have him wrapped around her little finger!


Mommy and Daddy

We had a wonderful Easter...we enjoyed Easter egg hunts, dyeing eggs, making an Easter house, and had tons of fun with Gramma and Grampa. Emily was so excited for Mass because it was her first time singing with the children's choir--she did great!

It was wonderful celebrating Jesus' Resurrection. The meaning behind the Easter season becomes more and more clear as I get older. My faith has grown immensely in the past two years and I thank God for that. Some days seem so difficult that the only way I can get through them is by relying fully on God. As a control freak, giving up that control is extremely difficult...but I am trying. I'm not saying I am perfect in my faith...just ask Tommy. I am constantly questioning things and wondering why, but I am trying and that is the best that I can do. I am thankful that Jesus died for my sins so that I can enjoy eternal life with Him and Luke one day.

I had a very special thing happen during the celebration of Jesus' Resurrection: during Mass, I found myself holding the heart locket that my sister Katie gave me after Luke died. She had his name engraved on it and it is simply perfect, just like him. My mother has told me that she feels Luke every so often and I get upset because I don 't feel him. I think that my holding the locket was Luke saying "hi Mom"--he was with me. I needed that. I needed him.

As we get closer to Luke's Angel Day, I feel myself becoming a bit more tense, a bit more clouded, a lot more sad. I don't think I realized these feelings until this week, but they are there and they are intense. I try to put on a good face, but the reality is that I am still in mourning. I am still mourning what my two-year old would be doing right now, what his voice would sound like, what his favorite things would be. I am mourning what could have been, what should have been. Has "it" gotten easier? Yes. Has the hurt lessened? No. To say I am fearful of April 18th would be an understatement. I am terrified. I would rather skip April 18th for the rest of my life. But I know that Luke is safe and that he is healthy. He doesn't hurt and he is whole. I miss him, but I am certain that he is much better off where he is now.

I have a very important (and exciting) prayer request for you all: please remember Carter Oswalt and his family this evening. I wrote about Carter a few months ago and his fight against HLHS. We met Carter's family through our work with Luke's Tree. Carter has been at Vanderbilt in Nashville since December, waiting on a heart. Well, the amazing news is...CARTER'S HEART HAS ARRIVED! Carter's dad, Bo, announced the news on the CaringBridge site this afternoon. The transplant will happen this evening around 11 or midnight and prayers are that Carter's body accepts his new heart easily and that recovery is quick. It will be great to see this family together again, home in Mississippi. If you have a chance, please stop by Carter's site and leave them a quick note...I know they would appreciate your support. Here's the address: www.caringbridge.org/visit/carteroswalt. I can't mention Carter without mentioning the family who so selflessly gave their child's heart for Carter to have a new lease on life. What a wonderful gift to give to a stranger. Please pray for this family as they are in mourning for the life of their child. They are heroes!

Once again, thank you for all of your prayers and support. God bless you all!

Home

Playing with the Elmo balloon that the Tierney cousins sent him

Hi guys! Well, James did as well as we thought he would...DeAnn was ready to send us home on FRIDAY! Yup, two days after having a large part of his tongue cut off, James proved that he is a great eater and that he has a high tolerance for pain. Tommy and I were not quite as comfortable about leaving so we stayed Friday night and DeAnn arranged for Dr. Marsh to give the discharge orders early on Saturday. We left early Saturday morning and arrived back home at around 1:30. James was so excited to see Emily and Matthew and they were eager to see his tongue. I think that they were both a little taken aback by the stitches and "wet scabs" at first, but then they warmed up to it all.

James has been doing very well since we arrived home. He has been drinking from his sippy cup (a little, but it is getting easier) and drinks very easily from the bottle. He has been doing well with his baby food and even successfully ate some pasta and cheese tonight. Tommy and I think that the most difficult thing for him is the frustration that comes from having to relearn how to eat. He still has a bit of swelling, so it is a bit hard for him to swallow. We are constantly amazed by his persistence. He is so happy to be at home with his toys, free to roam around. He is also so so very close to WALKING! Today, he took about 6-7 steps and is gaining more and more balance. I'm not sure who is more excited about this: me and Tommy or Em and Matt! They are so great to James.

Please enjoy the video that we posted below. Tommy took this video of James in his crib. It shows a lot of his silly personality as well as a great shot of his tongue (towards the end of the video). What you are looking at in his mouth are stitches as well as wet scabs (the white stuff). It can take up to 6 weeks for all of the stitches to fall out. We will take pictures every now and then so you can see the amazing job that Dr. Marsh did with James' tongue. We were so very impressed with his entire staff (including DeAnn and Kristin) as well as the staff at St. John's Mercy in St. Louis. What a great hospital! Thanks for all of your prayers. We pray that you all have a wonderful week and God bless!