Celebrating life and love

Tonight, we took a family trip to the cemetery. We lit a candle, sang Happy Birthday and ate a small slice of cake. Who does this sort of thing? It sounds ridiculous! Balloons, cake, candle, Happy Birthday songs, in a cemetery. Except thats exactly what it was. Jake was the first to jump out and I captured this moment below before any of us got to the place Steven was laid to rest. It was the golden hour and our innocent and carefree boys were running through the cemetery. I sat with Travis, my now husband, at my late husbands marker. (Yep, I just said that in a sentence) Stevens picture beaming a smile up at us. As Jake showed his stubborn attitude and stomped off because I wouldn't let him keep the rocks that he claimed to be Iron off the marker next to Steven, I declaired he gets that from his Dad Steven. Travis quickly laughed and stuck up for Steven and said, "No man, I won't let you take the fall for that one. I know that's all Erin." This is what my life has become. It's very hard to wrap my brain around it all and acknowledge that this is my reality. Yet, as strange as this reality is, I feel blessed.

We chose to celebrate Stevens birthday a day early and some of you may know why. This is the 4th year that the boys and I have gone to the cemetery with a piece of cake and balloons. We typically bring it all and leave quickly since all the boys want to do is run around and play with other items left by those who grieve. But today, I found myself slightly more relaxed and at ease. The anxiety I typically feel when at the cemetery seemed to be much less than before.

Earlier today, I walked into Von's with Trenton and looked for balloons already blown up to grab, purchase and leave, along with a small slice of cake. Of course, when I needed them for a crappy reason, there were NONE. I walked through the floral area avoiding the lady behind the counter until I realized that I didn't have an option. I pushed my cart over and asked the lady for a mylar birthday balloon. She asks if it was for a girl or a boy. I said a boy and any balloon would be ok, I just wanted it and I wanted to leave. She then pointed out all of the balloons hanging on the wall and I quickly picked number 4. I can feel my anxiety rising and the pressure behind my eyes start to build. She then offered a balloon bundle with 5 latex balloons. I said I actually just needed 3 latex balloons to go with it. Thanks. She then proceeded to say that the bundle with 5 would actually be cheaper. No, no thanks, I just want my 3 latex balloons and 1 boy mylar balloon and I want to leave. Price doesn't matter right about now! Polite Erin, be polite, she doesn't know that any mention of what these were for could lead me into a tail spin of emotions and grief. Keep it together, you've got this. As she's blowing up the balloons and curling the strings, I just want to scream that she doesn't need to curl it and make it nice because its going to the cemetery and then my 2 little boys are going to send them to heaven for their Dad. But I don't. She talks to Trenton while she curls the ribbon. I take them, give a forced smile, and rush to the check out counter. The guy in front of us in line then wants to talk about the balloons and who's birthday it is. I quickly nod my head and get distracted with Trenton yanking on the perfectly curled orange ribbons hanging from the balloons and getting them tangled in a knot, which I didn't care about either. Steven was not going to be looking at them. As I walk to the car, I walk with my head down, pushing down the feelings and emotions of what these balloons and slice of cake really mean. 5th birthday without him and it doesn't get any easier.

We celebrate Stevens birthday a day early because as many of you may know, Steven, Travis and my Dad share a birthday. September 25th. What are the chances, right?! We celebrate Travis and my Dad physically on September 25th as we choose to celebrate life, the here and now, also knowing Steven is never far from our minds. I know he'd be okay with that too.

The fact that Travis goes with us to the cemetery is a small part of the amazing man that he is. He sang Happy Birthday with us, stood back while we talked and shared stories, and then he captured this moment...

A moment that us unbelievably surreal and hard to wrap my brain around. It's as if these two have a weird connection. It's as if they have a plan. It's as if they know one another without ever having met. The idea that these two are in a picture together is very, very inconceivable. After Travis took the picture, we quickly looked away. This little man whom has brought so much light into all 4 of our lives, is here because Steven is not. He laughs and he scream and he dances and loves. He is the sweetest creation ever. He adores his brothers who also absolutely adore him. He has tied us all together in a crazy way, and tonight, all 6 of us, celebrated life. I knew without a doubt Steven was celebrating with us too.

Where Steven should have been...

Tonight I sit here and edit images from Stevens cousins wedding. Travis and I had the opportunity to photograph Adam and Jeanettes wedding back in June. Adam had also asked Bryce to be a part of the wedding as well, knowing that had Steven been here, Steven would be standing up next to him as he married Jeanette. The day was beautiful and we captured so many wonderful pictures. It's these pictures that have taken me a back. Looking at it surface level, its a good picture. Knowing the story behind it turns just a wedding photo into a picture that speaks volumes. The smiles and laughter at this moment, and if you knew the discussion happening at this time (boys and bodily functions), would have happened even if Steven had been there. It's hard when his soul is missing from these events. It will happen over and over again. Yet, he still left a little piece of him here. Bryce and Jake have carried on his zest for life and I am grateful for that.

New realizations

As the years go by (I hate that it has already been years) I come to new realizations once in a while. Mostly heartbreaking realizations. Realizing what death and widowhood bring to this new normal of our lives. The heartbreak, sadness, the sometimes joy and most of the time hard to wrap your brain around realizations. One would be Trenton. The idea that Trenton is here because Steven is not. That's about as deep into that as understanding as I can get.

The other day, Travis and I were getting ready for bed and we were remembering the small moments that Trenton has had over the last year. The times when he would scoot around on his back using his head and his feet only. We were remembering the small, happy moments and how quickly it went by. I suddenly got quiet, got up and got ready to get in the shower. Travis said, "Is it weird that I know what you're thinking right now?" I said,  "You don't know what I'm thinking." Knowing all too well that he knew Steven was on my mind. I realized that I no longer have anyone to sit back and talk to about Bryce and Jakes little moments. The person that shared those moments with me is not here to do so. Travis will remind me of little things that Trenton did that I have already forgotten about. It makes me wonder how many things happened with Bryce and Jake that I have forgotten about. Then it broke my heart to think that the person with those memories, Steven, left with those memories. All of the memories he had to share, left with him. It breaks my heart. What things happened that I didn't know about. When a memory floats through my mind from the past, I feel the need to share it because I don't want it to be forgotten. Just one of many things that makes Travis amazing is that he lets me share these memories. He always listens with the upmost interest and never gives me a hard time about sharing.  I know this cannot always be easy for him. Like the time Steven was driving the car and farted and then put the windows child lock on so I couldn't put the window down to breath and all I could say was, "why? why? why? why?" while Steven smiled and laughed with his goofy grin and his head thrown back. He pretty much thought he was hilarious while I suffered. Or the time he was home with Bryce and Bryce had something black coming out of his nose. Steven went to wipe it off and realized it was a piece of black thread and pulled it and it kept coming out of Bryces nose and tickled Bryces throat. How that happened, Ill never know. Memories are so important to me. Memories are stories and stories are what I share with Bryce and Jake so they remember their Dad.

We talk about Steven. Its how the boys will know him. If you have stories about him, please never hesitate to share them with Bryce and Jake.

Year 4

As I write this, three little boys sit behind me making fart noises at the table and cracking up. Bryce says, "Lets see who can fart the longest." They are now both making fart noises persistently and arguing over who was louder and could do it longer. This is what my days are made of and I couldn't be more grateful.

4 years ago I never would have imaged my life as it is today. I know a lot of us can look back at our lives and be surprised at where we have ended up. I think that just proves that we truly don't have control over our lives. Its in His hands, its in the universes hands, its not in our hands, as much as we think it may be. I used to think I had things in control, I used to think I could manage the world. That was until Steven was taken from me.

I felt prepared for today. I told Travis a few days ago that this year, I felt prepared. The first year on this day, I felt it was such a blur and I was just breathing to get by. The second year I felt the loss. The third year Jake had an MRI which left my mind occupied and stressed. This year, I felt I could manage it. I thought wrong. This year, I am just sad. Unbelievably, deeply sad. Grief comes and goes like a wave of emotions. Sometimes those waves are big and they knock you down unexpectedly. I had so much to say and share. Now I can't seem to find the words. Blogging will need to be left for another day. Today, I just need to breath.

What I miss the most about Steven is his ability to find humor in anything. His ability to be silly and not give a crap about who is watching. I've decided to share old videos and pictures, many that I don't think have ever been shared. Its a bit cathartic sharing these. I enjoy watching them and seeing the pictures, but the reminder of what is not here is nearly unbearable. I hope today you all live in the moment, look around you and appreciate every bit and piece of everything good in your life. We don't have control over now or later or tomorrow or where we will be in 4 years. Breath it in, smile and live.

I can remember sitting on the couch and Steven walked by. He stopped, did this on the back of the couch, and kept walking. I could not stop laughing. I made him do it again so I could take a video and send it to Amanda who would appreciate all the weirdness in it.

I'm pretty sure this sums him up

Steven and Jake 2010

Steven playing Star Wars with Bryce

Steven holding Bryce 2008

Steven with Jake 2010

Steven and Jake 2010

Halloween 2010

Celebrating Steven and Amandas birthday 2010
I don't think he could have had a better last birthday here with us.

Jake turns 5

I cant seem to figure out where the last 5 years have gone. They are such a blur. Full of fear, heartache, grief, love and life. Jacob Anderson Castellano, born May 27, 2010, turned 5 today. Jake changed my life. He made me in to the person I am today. He has shown me strength I never thought I had. When Steven and I found out we were expecting again, we were thrilled. We were looking forward to giving Bryce a sibling close in age and rounding out our family. During my pregnancy, my brother and sister in law lost their son. It was heartbreaking and tragic. I felt guilt for the thought of soon to be having two while their whole world was lost. I was anxious and confused and grieving the loss of the most beautiful nephew the world has ever seen. A month after Kaden passed, I went in for my 20 week scheduled ultrasound. At this point we were not going to find out what we were having. That was until the ultrasound technician became very quiet and left the room. He brought a doctor back with him. The doctor was very quiet as well. I can remember Steven and I anxiously making eye contact before the doctor told me he would like to send me to a specialist. He said he couldn't confirm anything, but it looked like the baby had a tumor or growth on its spine. Shock set in. Steven was very calm about it all. He would say, "Lets not worry until there is something to worry about. Until we know for sure how serious this is." Easier said than done. He left the doctors office in his car and headed back to work. I on the other hand sat in the parking lot and cried. I feel like I did a lot of crying during my pregnancy with Jake. I sometimes wonder if my negative energy fed into his issues at birth. (I know this is not the case, but thats just typical mommy guilt). Steven and I then visited a specialist who confirmed he did have what looked to be a tumor on his spine, also known as a Sacrococcygeal Teratoma. The doctor gave us a quick rundown of what it was and then gave us our options. Carry the baby or terminate. Well termination was not an option for me, so Steven and I quickly left that office and never looked back.

At this moment, I knew I needed to fight for my baby. I found an inner strength and stubbornness (which had always been there). I researched doctors and hospitals and medical needs. I found others who had survived and printed information for my new doctors. I found a great specialist at Loma Linda who gave me such amazing one on one care. We were going to fight this and we were going to win. The hope was that I could carry him to at least 32 weeks. At 35 weeks pregnant, this doctor came to me and said that the growth seemed to be changing, and after talking for several weeks with her doctor husband, they came up with a new diagnosis, KT Syndrome. 

On the day Jake was born, 10 doctors waited in the room next to me to quickly examine him and make sure if life saving measures were needed, they were ready. Suddenly, this screaming little 8pound 8 ounce boy came out and the doctor held him up. I remember him telling Steven it was okay to look and take pictures. So he did. 

In the year that followed, we frequented Loma Linda and Rady Childrens. Searching for an answer. Jake had IV poke after IV poke, screaming and crying tantrums that I could only assume were because he was in pain. He had bleeds, clots, fevers and infections. He has MRIs and drainages. He had doctors puzzled and a mom learning how to stick up for her son. Life in that first year was exhausting and draining. Steven and I were barely holding ourselves together, let alone our little family. Near Jakes 1st birthday, we received an official diagnosis and plan of attack. We were learning Jakes needs and hospital trips were no longer a scary thing. We were regulars.

9 days after Jakes 1st birthday, Steven died. 

I don't really know how to follow that. My heart breaks for Jake. My heart breaks for Steven. Jake will never get to feel that love that Steven had for him. 

Thinking back to where I was 5 years ago, I never would have fathomed that I would be sitting here today writing this. Sitting here in a house, no longer married to Steven but widowed. 

Jake and Sirolimus

Update on Jakers

I wanted to write a post to first of all, update everyone. When we see family and friends who have followed his story from the start, they always are so thoughtful to ask, "Hows Jake?" So many people ask, because not much has happened, and for Jake that is a wonderful thing. I also wanted to post an update because so many other KT kids and families are about to take the leap with a new medication they have found to help our KT kids, Sirolumis (aka Rapamune). We have had such a positive experience with it and so many concerned parents post on the KT pages asking for any advice. Here is our experience.

In the fall of 2013, Jake spent his longest time in the hospital. We had just attended the Vascular Birthmarks Foundation Conference in Irvine and had a wealth of information. We left with so much promise and hope. Just a few days later, we landed in the hospital, yet again, with another infection. This time, it was serious and we couldn't get the pain under control. I turned into a mama on a mission. I gave his doctors down at Rady Children's San Diego a list of names with the doctors we had just met with. I wanted a change. I couldn't continue to bring my 3 year old in to the hospital every 2-3 months to be hooked up to IVs, pumped with medication, poked tons of times, scared and miserable. I wanted to take him to San Francisco for treatment, I wanted to take him to New York. I was not leaving with him until we had a plan. I felt like this was what our life was going to be if I didn't speak up. We stayed at Rady for 2 weeks and after many doctor conferences, phone calls, visits and too many IV pokes to count, went home with a plan. They started Jake on Sirolimus. This medication is typically used for patients with kidney transplants. Somehow, it has worked for kids with KT as well. The hope was that it was slow the growth of the lymphatic portion of the malformation, which is what made his bottom and right leg so swollen and large.

After starting on it, we got to know an entirely new Jake. Jake had been the kid that threw major tantrums, scream and cry constantly, wake up and cry in the middle of the night, it had been rough from day one.  We never knew when we would head into the hospital. Each day was unknown. He couldn't tell us when he was in pain. Jake also peed blood every time he used the bathroom, which is why he was 3 1/2 and in diapers still. He sometimes screamed and shook when he peed because it hurt so bad. I'll never forget him standing in his pull-up shaking and crying as he tried to urinate. It was unbelievably heartbreaking. This was all due to the malformation in his private area. I had to learn his leg and the changes it made, warm red sports and fever mean infection, hard nickel size knots were clots, bruising was usually pooled blood which then got an infection in it. Once he began the Sirolimus, the tantrums lessoned, the blood in the urine stopped and he was funny and happy. I know his pain lessened once the medication kicked in. I think he grew and the lymphatic portion didn't grow as much, which meant less pressure on the inside of his abdomen and leg. We did weekly blood draws until his levels were where the Drs wanted them, typically between a 6 and an 11.  We now do monthly blood draws. We also did MRIs every 3 months to check the growth of this leg. The size and swelling of his leg lessoned dramatically. He's grown taller without the leg growing larger. Granted, his leg is still greatly larger than the other.

Since November 2013, we have been hospital free. Going from every 2-3 months in the hospital since birth to not having to carry the worry of another hospital trip has been unbelievable, although that fear is never far from my mind. Just last night Jake spiked a fever and Travis and I went in to panic mode. Trying to figure out how we'd get Bryce to and from school, what we would do with Trenton, how would we manage as a family all being apart? Scared us. Thankfully he woke up just fine. We do know that a hospital trip is imminent. As this is a chronic illness that will follow Jake for his entire life.

There have been a few downsides from Sirolimus, but no where near enough that it's not worth it. Sirolimus does lower a childs immune system dramatically. In the beginning, I was very careful about where we went and what we did. You cannot live that way tho. By last summer, we were spending our days at the trampoline park, the zoo, the beach and camping. We were out and busy and Jake had no complaints. I think by November, 1 year since starting the medication, things were so good that I became lax on hand sanitizer and keeping him germ free while we were out and about, although its not all avoidable. He's had the chicken pox, tons of colds, stomach flu and pink eye. We have Jake on Bacterium on the weekends to keep his immune system up, but it can't all be avoided.

Overall Sirolimus has been a blessing to us. Dr. Geddis at Rady Children's Hospital said out of the 11 patients she has on this medication, Jake has had the best reaction. She said she wished all of her kids had his reaction to it. We are so grateful for that. Come October this year, we will start to wean him off. The longterm side effects of the medication are unknown. To say I am nervous about taking him off slowly is an understatement. Jake starts kindergarten in the fall and although he will have a health plan in place, I'd hate for him to be in and out of school due to pain, bleeding or hospital trips. The future is unknown but we are grateful for now.

Please message me if you are a parents who's child will be starting the medication soon and if you have any questions. Ill answer them to be best of my ability.
((Jake takes 1mL 2x a day with a little cup of OJ)

You may think I'm crazy...

Last weekend, we drove 2 1/2 hours north to pick up the newest addition to our family. Welcome home Kona the Golden. This bundle of fur, also known as a Golden Retriever, has joined our tribe, as my husband put it. When we told our family and friends of our newest addition, the response from most people was, "What are you thinking?" I laugh it off because, don't get me wrong, this same question has crossed my mind more than once. What am I thinking??? 3 little boys, a 9 year old dog, a cat that brings live birds in our house, 2 chickens, a fish that does swim, a new puppy and a partridge in a pear tree. Sounds about right. This is my life and I love it.

My life has become something I never imagined. Pure chaos. Its messy, its unorganized and its crazy. I look around my home and its messy. Its not dirty, its just lived in. Basket overflowing with shoes by the front door, mail and paperwork piled up on the desk, wet shoe prints on the kitchen floor. Its lived in. There is a "me" before 2011 and a "me" after 2011.

Since Steven passed, there is a new me. Sometimes I wish Steven would have known the me now. Before he passed, I was uptight, easily annoyed, wanted things done a certain way, my way. I wanted to feel in control of my life. I had an idea of how I wanted things to be and when they weren't that way, I was annoyed. I cared too much about what other people thought, even though I would have never admitted that. The me since 2011, doesn't really care what other people think. I enjoy my little world with my little chaotic family and I like it that way. I don't need a ton of friends, I have those friends who have stuck by me, and I don't need to show off what I have and can do. I just don't care. I care about those in my home, my little family. I care about my close family and friends. The rest of the entire world, I just don't care. Sometimes I worry that maybe I just don't care enough what you think.

Don't get me wrong, I am not narcissistic. I care about the planet and do my part to recycle, be friendly and helpful to others. But I don't care what you may think about what I do in my life. So, we have a puppy. Am I taking on too much? Its nothing I cant handle. Believe me. I don't care if he pees on the floor, I'll clean it up. I don't care if he chews up my favorite shoes, I can get another pair. After Steven died, I had a choice. I could curl up and die along with him, or I could do what he'd want me to do. I could do what he no longer couldn't. I could live. I chose to LIVE. Living is what I am doing. Some days I go through the day without accomplishing much. But I am living. I am attempting to take in each and every moment with  my kids while they are little. Even when they are throwing tantrums and I'm really do throw in the towel.

I will Live. Taking on more is nothing I can't handle. Live it, love it and enjoy it while you can.