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!

Some Pre- and Post-Op Pics

In the waiting room before surgery with Daddy

Look at this cutie! What a smile!

Dressed in his gown, ready for his Versed.


Post-Op in the PICU

Look at me, I can FLY!

Going for a ride to the cafeteria with Mommy and Daddy

Didn't Tommy do an amazing job of writing on the blog last night? Today has been a busy day, to say the least. Right now we are working on eating. James doesn't seem to be hurting all that much (he is only on Tylenol), but he is scared to eat. If you all could say some prayers that he starts eating better, that would be great. His IV began to leak earlier (which is what happens when a little boy tries to cruise around the crib when he has an IV in his foot), so they took it out. They will remove the feeding tube tonight, so he MUST eat. Dr. Marsh's nurse, DeeAnn, has been amazing and she is really doing a lot to help our little man eat. The nurses and doctors here have been great, too. And I must say that the FREE ICEES are the bomb diggity (did I really just say that?). Be sure to look at the post below for a funny pre-op video. And this is for Emily and Matthew--we love you very much and we can't wait to see you soon. We hope you love the pics of your baby brother...he misses you, too. And no Matthew, they didn't cut off James' whole tongue! God bless you all and thank you so much for checking up on us!

After Versed

We thought this was pretty cute. James after his versed (AKA St. John's Margarita), right before surgery. Isn't he so cute?!?!

Surgery Day

Well, you all are in for a treat. I (Tommy) get to take a turn at the blog tonight. Hey, don't all of you jump up in excitement at the same time!

The day went as well as can be expected. James' surgery was the 7th surgery for one of our kiddos. Of course, they have varied greatly in severity, but anytime your child goes in for surgery there is a tremendous amount of anxiety that accompanies the day. The nurses and doctors have been fantastic. The facility is also excellent. I have to admit, I did not know what to expect. The only other time we've been to the hospital was for the initial consultation in February. The doctors offices are very dated as the hospital was built in the 1950's. We were pleasantly surprised that the surgery center, PICU, and pediatric wing are all brand new.

James is still heavily sedated, but he is being weened. Whenever he wakes up he cries, fusses, and squirms quite a bit. The best way I know to describe his tongue right now is that it looks like a wad of bubble gum with stitches in it. His bleeding has been relatively light compared to other tongue reduction patients, so that is great news. However, it's tough to watch him as you know he has got to be very uncomfortable.
His arms are in splints to keep him from pulling out the feeding tube. They started feeding him through the tube tonight and that will continue until he is able to eat/drink on his own. We are praying he can do that as early as tomorrow or Friday. One of the really cool things about the hospital is they have self-serve ICEE machines on certain floors. Granted, they are there to encourage kids to drink following tonsil or tongue surgery, but it is also a really nice perk for the parents (get them free also). I can attest that Bernie is quite excited about these machines. We found them late this afternoon and the joy was undeniable. I foresee many trips to the ICEE machine over the next couple of days!!

We thank you for your prayers and ask for continued prayer that James' recovery stays on track with limited/no setbacks. Check back tomorrow as we will have another update and some pictures and maybe a video.

Tommy