Balloons

To plan your own child's funeral is really a sucky experience. Really sucky. Who EVER thinks they will have to plan their child's funeral? Nobody. Never. It's the unimagineable. The unthinkable. It's the thought that would never enter a parent's mind in a million years because it is SO sick and wrong.

But, unfortunately... we had to. We had to plan a funeral for our son who was 17 months and 25 days old. A twin brother. A little brother. A soon to be big brother. A grandson. A nephew. A godson. A friend. He was all of those things. But he was so much more. SO MUCH MORE. He was the absolute perfect child. Best kid in the room. He'd have won any smile contest. He'd have won any wiggle contest. He'd have won any hugging contest with his tight grip. And, he'd have easily won any kissing contest with the cute puckering and smacking of his lips.

I carried him in my womb for 35 week and 5 days. Then, for 17 months and 25 days, we held him, we loved him, we kissed him, we hugged him, we fed him, we watched him grow, we shared him with family and friends, we showed him the world he lived in, we learned his likes and dislikes, we learned what would make him smile, laugh or cry, we learned who could make him giggle the most, who could tickle him best, we learned who he was most attached to - and I'm very happy to report, that was yours truly... mommy!

He taught us all how to wiggle, he knew how to make us laugh, we learned he LOVED balls, loved to play catch, and had an early talent for catching. We learned what foods he liked and disliked, his favorite foods, and tricks to make him eat. We learned that he was the easiest child in the world EXCEPT for when it came to feeding him. We learned about his favorite outside toys, and his love for riding on cars and trucks up and down the neighborhood sidewalks and throughout the house. We learned which TV shows were his favorite. We learned about his love for balloons. We enjoyed watching him and his twin brother openly show affection towards one another, kissing, hugging, and pointing to each other's eyes, ears and noses. We enjoyed watching their numerous little twin battles that would take place throughout the day. We enjoyed watching Matteo's true love for his big sister's attention and love... and how he'd follow her direction just so he could be part of her daily play. And, she loved him right back, always being very motherly to him. And, it was so fun to see the two of them cuddle while watching Diego or Dora on TV. Both Rocco and Gabby had a very special and different bond with little Matteo.

Matteo touched our lives in SO MANY WAYS.

When planning Matt's funeral, I went into overdrive to make sure my child's funeral would be perfect. This would be our last salute to our little guy... a way to honor his memory. We wanted to make sure everyone knew who he was... what we miss about him, how much he was loved, and how much we missed him. I wanted the world to know that he was the best. The greatest. That he could not have been a more perfect child. It would not have been possible.

Thanks to a LOT of help from a LOT of family members and dear friends in so many different capacities... I think Matteo's funeral was probably as near-perfect as such an event can be. We were joined by family and friends from near and far. We are still in complete awe of EVERYONE who dropped everything to travel here and be with us. Having their love and support meant the world to us. Thank you just doesn't seem to be enough sometimes.

At the end of the funeral, there was a balloon release. Matteo loved being outside, he loved birds, he loved rocks, he loved bugs, he loved water, and he LOVED balloons. Two very dear friends of mine took on the huge task of coordinating and planning the balloon release. I was again in complete awe of their help and generousity. They got the most perfect balloons and spent the morning blowing them up with helium.

The balloons were all printed with:
Matteo
Tate
Martino
January 10, 2008 - July 5, 2009

It was such a beautiful way to end the funeral. We all watched the balloons hover and take their time flying into the sky. They took their time and did their own thing, just as Matteo always did.

The kids LOVED the balloon release. We told them we were sending the balloons up to angel Matt in Heaven.

As a large group of balloons was hovering above us, a big flock of blue herons (large, white, stork-like birds with black-lined wings) flew through the balloons in the shape of an "M". It gave us goosebumps. Matteo LOVED birds. Was it a sign? OF COURSE it was.

I think little Matt WAS able to see all of these colorful balloons. I think he helped them to hover over us for a while. I think he sent the blue heron's flying through in the shape of an "M" to let us know he was with us. That he is ok. And, I think he was able to see/feel/know how many people were there to celebrate him. And, all I can do is hope he knows that we're constantly thinking of him... missing him... and loving him.

Ever since Matt's funeral, Rocco seems to be on a mission to release every balloon he can get his hands on into the sky. It's almost as if he has a plan to send every balloon he touches to his angel brother in the sky. Truly. I'm not kidding - the kid is determinded to release every balloon into the sky.

On Sunday, August 16th, the mass intentions at our church were for Matteo so we of course went. Rocco was in church with us for approximately 5 minutes and then he was out the door with Dan. Dan said he ran over to the grassy area where we did the balloon release... and he looked up into the sky and kept saying "boon". That's how he says balloon. It made tears well up in my eyes. Six weeks after Matteo died. Five weeks and one day after Matt's funeral. And, my now 19 month old baby remembers this event.

Perhaps there IS hope that he will retain memories of him and his twin. What a gift that would be... truly.

Included with this blog are photos from the balloon release after Matteo's funeral.

Minnesota trip... because "Life is for Living"

We had planned a trip to Minnesota a few months before Matteo died. Tickets were bought. Plans were in the works. It would have been my family's reunion. My brother, Mark, and his family would be visiting from Shanghai, China. My brother, Jon, would be visiting from Alaska with his wife and daughter, whom we hadn't yet met and whose first birthday we'd be celebrating on August 1st. And, my brother Dave and his family conveniently live not too far from my parents in the Minneapolis area. So - it was going to be lots of fun seeing all the little cousins play together.

And then everything changed. Well... for us anyway.

After Matteo died, it was a very difficult decision as to whether or not we would still go. Until a week before the trip, I was convinced it would be too difficult to go and I just didn't want to leave the comforts of our home. Nor did I want to leave the place where all of our memories lived with Matteo. And sadly, the thought of it being anything close to a family reunion was incredibly painful... as there is no way it could be. Obviously... we would be missing a HUGE part of our family - Matteo. And, to think just a year ago... we were in MN with him for his & Rocco's baptism.

We ended up deciding to go... mainly, for the kids. We wanted them to have some MN-type fun. To get an escape from the cloud over our home in CA. And, we wanted to see them have fun with their cousins... even though it would suck at the same time to watch the fun being had and not see Matteo being a part of it.

We also decided to go because... well... life is for living, right?

The highlights for the kids were the Carver County Fair (rides and seeing/petting animals), rides at the Mall of America, boating on the lake, swimming and playing on the beach, Gabby went tubing (w/Dan), and of course LOTS & LOTS of playtime and fun with their cousins, Alexa, Callie, Maddy, Emily, and Ellie. All girl cousins - Rocco and Matteo are/were the only grandsons my parents have to date.

Dan & I were able to see some relatives we hadn't seen for over a year. Dan played golf twice with some friends and family. And, I was able to spend some quality time with very dear friends of mine who also traveled to CA for Matteo's funeral. Those friends were and continue to be very good medicine for me.

The following posts include photos from the Mall of America and the Carver County Fair. The photos below are of the kids with Dan & I, family, and there is one photo of all the cousins MINUS Matteo. But, I swear... it's like there was a space left for him. Right above Alexa, between Emily and Callie. I wonder if he was standing there with all of them, smiling his big smile. He would have had so much fun helping Ellie celebrate her first birthday... he LOVED his first birthday party. Gosh... the memories just sting sometimes.

Photos from the fair:

The kids LOVED feeding all the animals at the Carver County Fair. They loved meeting the cow character... who was hugging them and shaking hands with them... strange, I know! But, it was funny. They also loved going on all the rides... however, the rides usually ended up with Dan having to extract a screaming Rocco. Rocco had such a blast on any ride where he felt like he was driving a car, motorbike or airplane. And, the kids also enjoyed LOTS of cotton candy, cheese curds and pizza. Yum!

Photos from the Mall of America:

We visited the Mall of America mainly so the kids could go on the rides. Oh, and Gabby also visited the princess store... aka, the Disney store. And, of course she made out like a bandit. What princess wouldn't though, right?

Rocco and Gabby both LOVED all the rides and loved spending more time with their cousins.

Dreams

Sadly, my dreams are taking a new turn in recent weeks.

While in Minnesota, on the one month anniversary of Matteo's death, I had the most disturbing vision/dream. Dan was sleeping upstairs in my old bedroom with Rocco in the pack-n-play next to his bed. I was sleeping downstairs in another room with Gabby. I woke up and saw Dan leaning over the bed. He was kissing Gabby on the forehead and he had his University of Arizona visor on. I remember thinking it was crazy that he was wearing his visor in the middle of the night. At the same exact moment, Gabby woke up and said "Daddy? Dada? Dada?" I reached out to touch Dan's head, but didn't feel him. I reached for him again and I realized he wasn't really there, but that it was my dream. I freaked out. Literally. Gabby had to have seen him/felt him too, right? She said his name several times. I heard her. My mind immediately started racing... I looked at my BlackBerry so I could see what time it was - it was 1:10am CA time (3:10am MN time). I was SO worried that Dan had now died in his sleep and he was coming to tell us he was ok. I grabbed Gabby, headed up the stairs... I opened my old bedroom door... half wanting to, half scared out of my mind for what I might discover... and I poked Dan twice. He woke up. I'm sure he was a little confused at the time. Then, we checked on Rocco to make sure he was ok. Everyone was ok.

I was so confused. I walked back down the stairs. I crawled back into bed with Gabby. I snuggled her tight. I was scared. This was so strange. I was SURE I saw Dan. COMPLETELY SURE. And, why would Gabby wake up at the same exact time saying "Daddy?". Then, I thought about the time... it was 1:10am CA time. Matteo's birthdate was 1/10. Was he trying to reach out to us? Was he trying to tell us something? Did he die around this time?

Needless to say... I ended up getting about 4 hours of sleep that night.



On Wednesday, August 12th, I experienced the first dreams where Matteo was dead in my dreams. We were doing things as a family... living life, but Matteo was dead. He was not living and breathing with us anymore. And, we acknowledged his death in our conversations, etc. It was a completely restless night. And maybe I shouldn't be calling these dreams... it might be more accurately described as a nightmare just because they were disturbing and haunted me all night. I kept waking up. Once awake, I couldn't help but think about every place my mind had just taken me. And, of course... then there was the shock and pain that Matteo was now dead in my dreams. It was horribly sad for me, to think that my mind is now starting to accept this awful truth.

On that same night, Gabby was sleeping next to me. I woke up at one point holding her hand. As my mind was waking up, I was convinced I was holding Matteo's cold, dead hand. I held it tight and squeezed it and probably within 2 seconds, I realized it was not Matteo's had, but it was Gabby's. My immediate emotions were the pain of his death. The feelings I had when I held my dead baby on the awful morning we discovered him. My next reaction was to feel Gabby's chest and make sure she was still breathing. Her skin was cold from sleeping on top of the covers (she's a hot-pot and sleeps above the covers on hot nights). But, it was completely disturbing to wake up with this dream and feel her cold body. It shook me to the core.

When your child dies in their sleep and you don't know why... every night is difficult. You're scared to go in and check on your kids. But at the same time, you're scared to NOT go in and check on your kids repeatedly... because sadly, you now fear the worst. You now feel completely vulnerable to death. Like death will strike whenever it so chooses... and what if it struck us again.

You can't help but wonder and live with this fear.

I'm sure that fear is great ammunition for my dreams/nightmares every night. And it probably will be for a long time.

Crib

We took down one of the cribs today in Rocco and Matteo's bedroom.

We have left Matteo's crib up. We took down Rocco's crib. I could not bring myself to part with Matt's crib.

His bite marks line the front rail, it's the crib both boys slept in together until they were about four months old. It has too many memories.

I told Dan about two weeks ago that we'd be taking Rocco's crib down and not Matteo's. I cried when I told him why I couldn't part with Matt's crib. It's where we can still see his tooth marks. It's where I remember him holding onto the rails and eagerly awaiting me to grab him out of his crib. It's where he'd look out at Rocco across the room... and they'd jump together and scream/talk back and forth before bedtime. It's where he slept with his twin brother for four months. And, sadly, it's where he spent the last hours of his life and took his last breath. I cried when I told Dan why I couldn't get rid of Matt's crib. I told him we'd probably have Matt's crib for the rest of our lives. I just don't think I can ever get rid of it. Dan just held me while I cried.

Rocco will now sleep in Matt's crib. I know with my whole heart that Matt will watch over Rocco in that crib. He'll sleep with his brother every single night and be his guardian angel, keeping him safe.

So, today... Dan took down Rocco's crib. I couldn't be in the room while he dismantled it. I didn't want to see it being taken apart. That would have been too difficult. But at the same time, I knew in my heart it was time for us to do this.

What brought me to tears today and made me sob was not how I felt, but how Gabby reacted to us taking down the crib. She did not understand why Dan was taking one of them down. She got very sad. She kept asking why we were taking the crib apart. We told her it was because Matteo died and only one baby needs a crib now. She said "but what if he comes back?" We had to tell her repeatedly, that he wasn't coming back. Do you know how hard that was? Do you know how hard it was to tell her that Matteo will not be coming back to sleep in the bedroom he shares with his twin brother?

Do you know how hard it is to look at your sad-faced, teary-eyed 3.5 year old who lives in a princess and fairy land where everything has a happy ending... and try to explain to her that this tragic event in our lives can not be reversed? That he will not come back to life? She has said on more than one occacasion that she thinks and wishes for Matteo to come back for her birthday party in November. It's almost as if she thinks he's just on a mini-vacation. Oh, how I wish that were the case. And, then when I tell her he won't be coming back now and he won't be coming back for her birthday it's as if I'm crushing her belief and dream that he WILL come back for her birthday party... and that everything will once again be perfect and Matt will be with us.

Do you know how hard it is to not be able to fix this problem? It rips your heart out. Literally. To see Gabby sad about Matteo. And, knowing that she does not "really" understand why Matteo's not coming back. At the same time, I can't even f'ing believe my child won't be coming back. I don't know why he died and I can't yet tell her why he died or why he had to leave us.

Yeah. It sucks. It sucks beyond words. It's like having someone reach into your chest, pull your heart out, throw it on the ground, jump up and down on it a million times. And, then do it repeatedly every day.

Then... she tells me she is sad and that she really misses Matteo. And, I know in my heart that she is possibly starting to "get it" a little more. Just as I am. That Matteo is not coming back. He's gone. I can look out the door for as long as I want and wait for someone to bring him back. But, he's not coming back. I can wish upon his star and pray every night before I go to bed that this is all an awful, AWFUL, sick nightmare. But, it's not. It's our new reality. And nobody "really" knows how we feel. Nobody knows how I feel. Nobody knows how Dan feels. Nobody knows how Gabby feels. Nobody knows how Rocco feels.

And, while we have felt the love and contined generousity from so many people... our many dear friends, family and even complete strangers... I have never, ever felt more alone in my entire life.

Completely, and fully alone.

I look around me and people are living life. Their lives are normal and they don't have this giant hole in their chest that I feel every minute of the day. Our lives are different now. Forever. I miss Matt. We miss Matt. I miss him more than I have ever missed anything and more than I could ever explain to anyone. I feel bad for my husband. I feel bad for my kids. I feel bad because I know what we're missing and what we'll never, ever be able to replace. It's a giant hole. GIANT.

It's hard. Sometimes every day seems more difficult. Every day is another day that I miss my sweet baby and another day since I last held him and felt him snuggle up to me. And, I don't want to get used to missing him... ever. I don't want to reach the point of it feeling "normal" without him. The thought of that alone is painful.

Nothing yet.

I spoke with the coroner, Dr. J, on Thursday, July 30th for about 45 minutes. They do not yet have a cause of death for Matteo Tate.

We know nothing. Nothing. And, that is so very difficult. I wish with all my heart that we would know something... anything.

Dr. J said that based on her autopsy and the blood tests that have already been completed, that Matteo did not show signs of:
· Meningitis or Meningococcal
· Pneumonia
· Myocarditis
· Anomalous left coronary artery
· Brain aneurism
· H1N1 Virus (Swine Flu)

I asked if they would be doing the DNA analysis on his heart tissue which could tell us if he had an abnormal heart rhythm. Dr. J said this DNA test costs thousands of dollars, and that she wasn’t sure if this is something they would test for. I asked “What if you don’t find a cause of death? Would you do the test then?” She wasn’t sure, but it was something they would look into.

I asked if we could send the tissue samples to Stanford for another review, already knowing that Stanford would not accept the tissue samples unless the SCC Coroner’s office needed a more expert analysis of either the heart or brain tissues. I think I offended her in mentioning a second review – which I truly didn’t mean to do. I just want to know my child died. I want to know that my other children aren't going to die in their sleep... suddenly and unexpected. She went on to tell me that we would need to cover all the costs of the “consult” because at this time, she did not feel a review by another expert was necessary. Then she went on to explain how she did all of her training at Stanford and that she knows the lead pathologist there, etc.

Dr. J went explained that Matteo looked like a very healthy child. His heart looked good. His brain looked good. All of his organs looked good.

Ugh. That makes me SO ANGRY. So why did he die then? Why? WHY? How does a healthy baby just die?

In addition to questioning Dr. J about all the heart-related theories that the Heart Center MD’s explained to me, I also brought up another “guess” that one of my coworkers passed on from a lead RN in the Heart Center. She thought that maybe Matteo could have died from a febrile seizure. Dr. J said she was going to look into this a bit further. She said that Matteo did not have any bite marks on his tongue, and that he did not show signs of struggle... both which are typically related to a seizure. However, he did show some very minor signs of asphyxia.

This killed me to hear this. Literally. I couldn’t catch my breath. Hearing this made me realize that even though every ounce of my soul needs and wants to know why and how Matteo died… it may be the most painful sentence I ever hear in my life. And, I don’t know if I’m prepared for that.

Tell me it was meningitis. Tell me it was meningococcal. Tell me it was a genetic problem with his heart or brain. Tell me it was something we couldn’t have fought or changed or that there was nothing that could have been done to prevent it. Please... please... please. But don’t tell me he died of something that perhaps had I been holding him in my arms… I would have maybe, possibly, had a chance at completely avoiding this devestating loss.

Dr. J went on to tell me not to get discouraged just yet. She said she has done a large number of autopsies on infants and that she has not been able to find a cause of death for only a handful of those children.

Because Matt had a fever for the day and a half before he died, most MD’s I have spoken to, including Dr. J, suspect he was fighting something… and maybe it was something he couldn’t fight due to his weak immune system.

So, in addition to still waiting on the toxicology blood tests, Dr. J sent blood samples to a microbiology lab to see if they can find a micro biotic infection. Dr. J indicated that some viruses/bacteria/infections are not detectable on the normal set of blood tests and that his cause of death may have been something that is only detectable through this more detailed analysis.

So we know nothing yet. Only that Matteo looked like a very healthy kid. He had a fever for approximately 30 hours before he died. And, he died in his sleep... peacefully... without a sound.

And, we're missing him more than words can ever, ever explain to anyone. Our world is forever changed... tragically.

Baby Surprise

I found out I was pregnant with Baby Surprise the first week of May.

We weren’t trying to get pregnant. We weren’t expecting it. It was a total surprise... which made the news tad bit overwhelming. I think I shook for a full day and a half after taking the home pregnancy test.

Not many people knew of our news… a handful of people knew. It was like our fun little secret.

On July 2nd, two and a half days before Matteo died, I had my first trimester ultrasound at just over 12 weeks. Baby Surprise was looking good. Healthy heart beat and quite the wiggler. Dr. C predicted with 90% certainty that Baby Surprise was going to be a girl. A sweet baby girl. She is the same physician who predicted the twins were both boys at the same point in my pregnancy two years ago.

I couldn’t wait to tell Dan. I was suddenly so excited. No matter how crazy our lives would soon be… it was going to be awesome. We were going to have two girls and two boys… we would be a family of six in just six short months. How shocking and crazy… but how wonderfully perfect at the same time.

Two and a half days later. Our world came crashing down on us. And, I mean CRASHING. Crashing and slamming.

Now, everything is so NOT perfect. Matter of fact, everything is light years away from ever being perfect again. Our family will always be wonderful… but it will never again be perfect. We now have a huge, gaping hole in our family. Forever.

I met with my OB doctor at 16 weeks for a regular appointment that was scheduled before Matteo died. However, Dr. C knew that Matteo died because I’ve had to discuss my health with her on the phone ever since. She started crying when she saw me. Then, I started crying. She apologized for not holding it together and being more ‘professional’. I said “Please… cry. How is it possible to not cry when a child dies? When we don’t yet even know why or how he died. Cry. I’m crying too. Constantly… every day.”

I seem to have this wonderful downer effect on people wherever I go lately.

Baby Surprise seems to be doing just fine. We’ll see her(?) again mid-August for the full anatomy scan and we’ll also then confirm the sex.

My belly seems to be growing fast and getting bigger every day. I've felt her move a few times... very briefly. It will be nice when I'm able to start feeling her more regularly... as that constant movement seems to be reassurance that things are ok.

Life is beyond crazy for me right now.

Here I sit… writing about this new little life growing inside of me. And, I should be ecstatic and celebrating and thinking about baby names and planning where she’ll sleep, etc. But, all I can think about… all day, every day… is Matteo. All I dream about at night is Matteo.

It’s not that I don’t want to think about Baby Surprise. It’s more or less that my mind is completely and beyond preoccupied with Matt. I seem to have trouble planning much of anything lately… because something is just constantly missing.

How is it possible that I will be celebrating the life of this new little one… 6 months after the death of my dear sweet Matteo? How is it not complete torture that her due date is 3 days after the twins would have turned 2 years old?

Is it crazy that I hope she looks like Matteo? Is it crazy that I hope she has Matt’s eyes, his hair, his golden sun-kissed skin color? Gabby and Rocco look so similar… Matt had his own, fabulous look.

If this little baby comes out looking like Matteo, I swear... it would be like a giant 'sign' from our little guy that he's still with us.

At 12 weeks... it's kind of hard to tell who she might look like: