MAD

I'M MAD!


There, I said it. I feel better. I am MAD.

I am mad that our baby boy isn't here to celebrate his second birthday with us. I am mad that I won't get to see him blow out his candles or smear frosting all over his face. I am mad that he won't be able to run around with the other children at his celebration. I am mad that instead of kissing his face on his birthday, I will be kissing the ground where his body lays.

I am mad that no one thought to cut a lock of his beautiful hair for us on the night that he died. I am mad that no one thought to make an impression of his little feet and hands. I am mad that I have nothing concrete that I can touch and feel aside from clothes that he wore.

I am mad that some have forgotten him, and never mention his name. I am mad that at times, I feel awkward when even I mention his name to those who have forgotten. He was here. He was ours. He was yours.

I am mad that all we have are memories. I am mad that Emily and Matthew lost him. I am mad that James never got to meet him. I am mad that I don't know what to say when people ask me how many children I have or how old they are. I gave birth to four children. I have four babies.

I spent part of the afternoon looking over Luke's home folder that Texas Children's sent home with us. We were told to record a daily weight, daily pulse/ox, and feedings. Surprisingly, I didn't cry. Instead, I searched. I searched for a pattern. I searched for a reason. I searched for an answer. I didn't find much, except the fact that Luke was vomiting quite a bit the week before we lost him. But as I looked at this folder and contemplated its contents, I felt thankful.

I am thankful that Luke didn't suffer the night he went to heaven. I am thankful that God gave Luke his miracle and took him to heaven to play with his angels. I am thankful that we didn't have to watch Luke suffer through and endure more surgeries. I am thankful that Emily and Matthew were in bed on the night Luke died. I am thankful that they were not faced with the chaos and trauma that faced the adults that night. Believe me, it is difficult for me to grasp and comprehend. I cannot imagine how a five and three year old would have processed that evening. I am thankful that, as a result of Luke's life, we welcomed a new, very special soul in James. I am thankful that God continues to send me his own little "messages" in the form of dreams, thoughts, feelings that tell me "it is all going to be alright and according to my plan". I may not have agreed with God's plan at the time, but as He has given me time I have begun to understand what He was doing and how all of His plans come together like a puzzle. I am thankful to have a God who made me human and who still accepts me and all of my human-ness.

Thanks for letting me vent a little...I have so many friends who blog, who are so eloquent and beautiful in their thoughts and feelings. I wish I had one ounce of their ability, but for now I will be thankful for the gift of gab that God has given me. Please remember Luke's birthday celebration if you will be in Houston on March 13th. It will be at Earthman Funeral Home at 11 am. We will have snacks, drinks, cupcakes, and a balloon release. There is an invitation in the post below. Please don't forget about our sweet angel. And please remember those children who are suffering from heart defects (including Asher, Nia, Carlie) and children who are suffering from cancer (Hans, Layla--in her last days, and Katelyn). There are so many other horrible things that affect children and please pray for their peace and healing. God bless!

An invitation to you all...

Please join us as we celebrate Luke and his life. The whole family will be in Houston to celebrate our sweet soul's amazing life. Luke would be two years old on March 12th and we look forward to celebrating with him at his site on March 13th at 11 am. We will have snacks, cupcakes, and a balloon release to heaven. We would love to have anyone and everyone attend. If you can make it, please leave a note in the comments section. That way, we will have enough goodies for everyone. I spoke with Sam at the funeral home today and he let me know that they will put up a tent as well as chairs and a table, so we will be set! Again, if you live in or near the Houston area, we would LOVE LOVE LOVE to have you attend our celebration. Luke didn't have a lot of time on this earth, but we want to make sure that he knows how incredibly loved he is and will always be. God bless you all and don't forget to hug your babies!!!!

We thought James needed another specialist so...

...we decided to get him one! Notice the sarcasm?!?! Anyway, we have "adopted" a new specialist: a pediatric plastic surgeon named Dr. Jeffrey Marsh. We were given Dr. Marsh's name by Dr. Beckwith (yes, THE Dr. Beckwith) as he is the go-to guy for tongue reductions in Beckwith Wiedemann Syndrome Children. Dr. Marsh is in St. Louis, so Tommy and I decided to take James on Valentine's Day for an appointment yesterday. We left Emily and Matthew with my parents (are they great or what?) and traveled through the snow (it snowed a lot in St. Louis) on Sunday afternoon. James did pretty well until the end, when he was tired of sitting in the darn car seat. When we arrived in St. Louis, we decided to find a place to eat on The Hill. For those of you who aren't familiar with St. Louis, The Hill is the place to eat if you want quality, authentic Italian food. We found a parking spot at Rigazzi's. Um, can you say "YUMMY"? Wow, I had an amazing chicken dish and Tommy ate a delicious mozzarella-chicken concoction. James had a fun time eating his chicken baby food, crackers, and bread. There are some cute pics of our Valentine's dinner together. Gramma and Grampa took Emily and Matt to a fancy dinner at a local restaurant and they had so much fun--yay for a super great Valentine's Day.

Yesterday, we had our appointment with Dr. Marsh. It was also my birthday. Yes, I am 21 (again) and I had a wonderful day. My sweet husband also bought me a really cool (and very much needed) gift: a new laptop. Yay for Tommy! Thank you, baby. But I digress...so we met with Dr. Marsh and he had a lot to tell us before he looked at James. Then he looked at James' tongue and told us what we needed to hear: James needs a tongue reduction and without it, his lower jaw will continue to move forward which will cause severe jaw and tooth issues. This was a big deal to us as we had prayed for a concrete answer from Dr. Marsh. That is exactly what we got. Then Dr. Marsh introduced us to DeAnn, who will be the nurse who is in charge of James post-op. We really appreciate the fact that James will be taken care of by a nurse who knows how to deal with BWS kids and tongue reductions post surgery. DeAnn showed us before and after pictures of BWS children who have undergone surgery--needless to say, there were some tummy-churning photos, but we have seen worse. Today, I scheduled the surgery for March 24th. My parents will come up to watch Emily and Matthew again and we will head to St. Louis. Please pray for us as we anticipate this surgery. We are expecting James to be in the hospital for about 5 days. It is a major surgery, complete with an overnight stay in the Pediatric ICU. We are having a number of feelings: hope, anxiety, fear, excitement, and acceptance. We know that this is the best decision for our Sweet Baby James and we are confident in Dr. Marsh's abilities. And it doesn't hurt that people have come from as far as Guam, New Zealand, China, and Italy to have a tongue reduction surgery performed by him.

This is all for tonight...please remember all of the babies and children who are battling for their lives. There are way too many of them and they need prayers. God bless you all and thank you for checking in on us and for all of the birthday wishes for James!!!! Don't forget to scroll down for lots of pictures...

Birthday Fun!

We celebrated James' birthday on Saturday and had a blast! Instead of gifts, we asked everyone to bring items for the NICU at Le Bonheur. I had contacted Becky up at Le Bonheur a few weeks ago and she let me know that they needed onesies, preemie outfits, and toiletries for the parents who stay over with their babies. We brought an amazing collection of items to Le Bonheur today and we had a great time. It was so neat to see all of James' old Le Bonheur buddies who took such amazing care of him. He was presented with a special t-shirt and a certificate thanking him for being a young philanthropist. Thank you so much to everyone who donated items for the NICU--they were very much appreciated!!!! Below are some pictures of our hospital visit today, Valentine's Day in St. Louis, and James' birthday party.

The basket we brought to Le Bonheur...FULL of items for the NICU!

Becky, Me, Matthew (happy as ever), James, and Jane

Gramma and Grampa posing with us (unfortunately, Tommy was out of town and couldn't make it today--he was bummed!)

Jane with James. Look at that BIG belly and that designer belly button!

Valentine's dinner in St. Louis with Tommy and James. I LOVE LOVE LOVE the look on his face!

CUTE Daddy!

Matthew trying to break the boot pinata.

The family before we sang "Happy Birthday"

Grampa and James waiting for friends to come...notice his "sheriff" shirt?

Yummy smash cake...he ate so much that it all came back up a few minutes later!

Look at the amazing cowboy cake that my friend Kelly made for James. She is awesome! Check out her cakes at http://www.kellylowrycakes.com/.

Emily standing in front of the pickles that she helped pour in the bowl. Pickles are her favorite!

Thanks for checking in on us! God bless you all!

It seems like just yesterday...

...that we welcomed our fourth child.

...that we heard his cry.

...that we knew he would live.

...that we saw his sweet face.

...that we watched as they took him.

...that they wrapped his belly in plastic.

...that we couldn't feed him.

...that we couldn't hold him.

...that we were reminded of God's infinite love.

WOW! Can you believe it? James is ONE YEAR OLD! What a day! It seems like just yesterday that we shared the news of Cuatro with all of you. Now he is a great big boy. He is a toddler. When did that happen? We are so thankful that James has joined our family and we are eternally grateful for the joy that he has brought to our family. We had a small celebration at home today, but will have a bigger gathering this weekend. Instead of gifts, we asked that people send items for the NICU at Le Bonheur. I have spoken with the charge nurse there and she let me know what they need: basics like preemie clothes, onesies, and toiletries. We are very excited to deliver the items on Tuesday and show everyone how well James is doing. One day soon, I will update with all of his tricks--he's a funny kid.

I wanted to share bits and pieces from our Caring Bridge posts on February 11th, 2009. I thought it would be great to show just how far our baby boy has come. Keep in mind that both Tommy and my sister were writing that day:

James Benedict Haberman was born and was screaming like a good little boy! They've taken him to NICU, and are evaluating him right now. Someone will post more when we get the details (weight, length, etc.), but for now the doctors seemed pretty optimistic.

It looks like the little man was quite the partier in utero - he had tied two knots in his umbilical cord (from all that dancing), and that is probably why his amniotic fluid was down. It's good that they got him out, and now the process of handling the omphalocele begins.

Apparently, the 4 week early baby boy is well over 6 pounds. In fact, he's 6 pounds 15 ounces. Almost 7 pounds! Holy cow! I just talked with Tommy and he told me that James is rosy and pink, and absolutely adorable. Tommy is on his way to LeBonhueur as I type. Bernie is still at Methodist Germantown, and she's definitely happy to have Baby James here. She needs to get some rest and take care of herself so that she can get over to see Baby James soon.

I [Tommy] just returned from LeBonheur and a nice visit with James. However, you never get used to NICU's and all the monitors and the constant beeping, wondering if there is something wrong with your child.

James continues to do very well. They did some initial blood work and it came back with great results. Although the surgery itself will be stressful, tomorrow might be the most important day in terms of James' prognosis. The doctors will perform a series of tests on James' heart, kidneys, brain, and chromosomes to determine if there are any other anomalies. Please pray that these tests come back "negative" and that the only thing we will deal with is the surgery to fix James' omphalocele.

I was able to meet with a member of the surgical team. He was very happy with James right now. His guess was that surgery would be early next week or possibly over the weekend. He said the omphalocele looks very good and that it only contains small intestines. James also had a couple of diaper changes while I was there which the doctors were also happy about as it indicates that all his intestines/bowels are working as they should

Thank you for your prayers and support. It's amazing to open the guestbook and see all those people thinking about our family.

When I read these words, I still get teary eyed. I think about what a blessing all of our children are and how thankful Tommy and I are that we have them in our lives. We are thankful for our family friends and how supportive they have been over the past year(s). We are also thankful for all of you and your constant thoughts and prayers. We always enjoy seeing your comments and appreciate your taking the time to check in on us. Have a wonderful weekend and God bless!

PS...don't you just love the pics of James? Check out http://www.shannonpaynephotography.com/. She does a great job (thanks to my friend, Katie, for sending Shannon's info.).

Mommy...

...is the only job I ever wanted.
...is what I call the strongest woman I know.
...is the sweetest word my children say.
...is a privilege I wish Daddy could have. :)
...is something I became when Emily was in my womb.
...is a badge I wear with pride.
...is everything I ever prayed to be.
...is the opportunity to teach.
...is the best benefit of being a woman.
...is the scariest, yet most amazing thing I will ever be.
...is security for little ones.
...is a blessing that I was given.
...is the gift given by God to carry a new life.
...is the one thing, the one thing I long to hear him say.

* In Honor of Emily, Matthew, and James and in memory of Luke Thomas*
MOMMY loves you all!

Seriously, Bernie.

I cannot understand why I have been so bad about blogging lately. I mean, how hard is it to let everyone know about our lives? How difficult is it to share our triumphs and our sorrows? The truth is, I was never really good at blogging. I will let you in on a little secret: I have another blog. I started it when Emily was 3 and Matthew was 1. You know, the days when the only health issues Tommy and I had to worry about were ear infections or tummy bugs. Looking back on the old blog, I have to laugh. It seems as if we were always at the doctor's office for something. But thankfully, those trips to Dr. Irani were for the "little" things. How I long for the "little" things. For some odd reason, the blog just stopped. I just stopped writing. Maybe it was the dawn of Facebook or the fact that I started working again that fall. I'm not sure why I stopped, but I did. I don't ever want to stop this blog. It represents so much to me: a legacy that no one, and I mean no one, can take away from our family. There are some great pics of Em and Matt when they were wee little ones, so please check the other blog out at: http://www.houseofhaberman.blogspot.com/. Let me know what you think! :)

As for our family, we are doing great! We had an amazing Christmas with Nana. Matthew had a wonderful Christmas program at preschool and Emily was a lamb in the Christmas pageant at church. Emily and Matthew finally got their Wii and James got a bunch of fun toys. I think his favorite one was the Busy Ball Popper from Playskool. James had a clean ultrasound last month and his AFP numbers (from the blood test that checks for liver tumors) were low (which is a good thing). Please continue to pray for James and that he does not develop any tumors. We were so thankful to be able to enjoy Jesus' birthday with our family. We can't imagine the celebration that Luke had with Jesus that day.

Now on to the heavy stuff...I'm not going to lie. It's been difficult lately. I'm not sure why. It may be because holidays are always more tough without Luke. It may be that his second birthday is in a few months. It may be that his legacy is about to be one year old. I'm not sure why. What I do know is that I miss him like crazy. I miss him so much. I still can't believe he is gone. I recently had one of those moments: the kind where I can't believe any of this has happened. Did we really lose a baby? It's just not possible.

It is at difficult times when God steps in and shows me the way. I may not know it at the time, but He does. This evening at Mass, I had to take James into the narthex. *side note: the kid loves to hear his echo, which is not such a good thing during the gospel reading* So the naughty (but extremely cute) boy and I walked around the narthex for a little bit. While checking out the information table, I saw a pamphlet on St. Therese. I know a lot of friends who know a lot about St. Therese, but I didn't know anything about her...until tonight. WOW! She has quite a story, filled with death and heartache. Therese was the youngest of 9, but only five of them lived to adulthood. Her mother died when she was four years old. Instead of dwelling in her sorrows, Therese decided to look for God in everything. Therese spoke of her "little way", looking to God as a child. She taught others to look for God in everything: in flowers, in kind gestures, in a smile. As I said, Therese did not dwell in her hardships or her sadness. Instead, she sought out God during these times and learned to trust Him. Trust. Trust Him. I could learn a lot from this young girl's life (Therese passed away from Tuberculosis when she was 24 years old).

I needed this tonight. I needed to remember that I must trust God as a child trusts his/her mother or father. Do I like the fact that we lost Luke? No. But I know that there is a grand plan and that God knew me before He formed me. I need to remember that even when I hurt, I can use my own "little ways" to make the day brighter for another person. Therese suffered silently, but showed kindness to others. I need to be more like her. I need to be more childlike in my faith. I pray that God will help show me the way.

On a super great awesome exciting note...we are coming to HOUSTON! We are going to spend spring break in H-Town. We are so excited to see our friends and family. I was talking to my amazing friend, Nicole (you may remember her as the brave neighbor who changed out our toilet seats before we put the house on the market) the other day. She has her own little miracle baby, Billy, who I cannot wait to meet. Anyway, Nicole and I were talking and she asked when we were planning to return to Houston. After a quick discussion, she and I devised a plan in which we would come during spring break. The most amazing part about it, you ask? We will be there to celebrate Luke's birthday with him. That's right, we don't have to wish we were at his site as we will be there. The even more amazing part, you ask? We are going to have a birthday party for him, right there at his site. We will have cake and goodies, along with 38 balloons to release...one for each day that he lived. If you live in or around Houston, please consider coming to Luke's birthday party. We would love to have those who can make it come to celebrate our angel's 2nd birthday. More information to come...

Thanks for listening to me ramble on tonight. There is just so much to share. Please scroll down as there are a few pictures from Christmas. Also, in case anyone wants to know, Luke's Tree had over $7000 in donations from all over the United States!!!! That is amazing and we are so thankful it was such a success. We are working on becoming non-profit, so if any of you have done this and can offer some advice, we would love it! God bless and take care of yourselves!