The Cause

I just want him back. I’d give anything to just have him back. It feels like there will never be full resolution. He will always be missing from my life. I just miss him so deeply. The softness of his hair, him holding my hands as he nursed, the joy is his face when he looked at me, I’ll just forever miss it. It’s all so incredibly unfair. He was so perfect. He was such a good baby, clingy, but overall a really good and easy baby. He just wanted me, and as long as he had that he was fine. I know he never wanted to leave me, and if he had a choice would be here too. It’s just not fair to anyone that he’s gone. It’s just pure loss. There’s no consolation in it. His death didn’t serve some altruistic purpose.

It now feels like the other shoes has dropped finally. I sort of felt like I was holding my breath all these months, that a cause would bring closure and relief to the pain and confusion. It has and hasn’t. We now know it was isolated, but also that is was senseless. I just want him back.

I got preliminary information today that the autopsy report is done and I should have a copy soon. The initial findings are Myocarditis, likely viral triggered. It’s a very random and fast moving condition where due to viral, bacterial, or environmental triggers or infection the immune system goes haywire and attacks the cardiac muscle. There is no prevention for this condition and there is no cure. In children under the age of two it is fatal in 50-75% of cases with the leading symptom being sudden death. We suspected in the week leading up to his death that something wasn’t quite right, but even if we had figured it out the prognosis was likely grim. Heart transplant is usually the most successful method of long term treatment and we likely would not of been able to have one in time. It just moves too fast. We might have kept him for a little while longer, but would probably still have lost him. Patients under the age of 15 usually don’t fair well, but adult survivors do exists, but with long term treatment and complications leading to poor quality of life.

The good news is this is likely not to happen again, and we can feel a little better than Gabe probably has no increased risk. We do have a cardiac workup scheduled for him later this month, just to cover all our bases, and so we can be sure there is no genetic link. It was all just incredibly bad luck.

I look forward to reading the full report and tying to learn as much as I can about this condition. It’s a rare thing to occur and even more so in such a young child. It just feels like we will never be completely lucky in anything. Milo was our perfect baby. He was our happily ever after. Nothing will ever be simple or easy after losing him. Every step of our lives forward now feels tainted and put into place because of his death. Everything I had been working on or towards has been derailed. I just don’t know if I’ll ever find a level of contentment like I had with him. I’m usually not so pessimistic, but I feel like I’ve put up a good, strong front through all of this and now it’s just time to cut myself some slack and be okay with not being okay.

This is the last good smiling picture I have of him. It was taken Sept 10 – 8 days before he died. The emoji sign off I’ve been using is now even more fitting: heart, hibiscus, avocado. ❤️🌺🥑

Advertisements

This Time of Year

I’ve been putting this off for over a week. Going into Christmas I didn’t really realize how hard things were becoming. A few days before, I realized that I was putting holiday things off, and I couldn’t do that. I had to push through it anyways and not withdraw.

A big task was taking Gabe to see Santa. I didn’t think this was going to be hard, but I was disappointed that I had drug my feet so long into the month that Antonio wasn’t available to come with me that morning. He was at work. We go to see Santa at Bronner’s CHRISTmas Wonderland in Frankenmuth, MI. Its a giant Christmas store – the world’s largest! We’ve gotten all our family ornaments here, and Milo’s first Christmas ornament last year.

Gabe and I patiently waited our turn in line, and they really have a good system there, so it goes pretty fast. Right before it was our turn it hits me. I should have two boys. Last year I had two boys. This isn’t right and I fight the urge to panic and leave. Gabe delivers his requests for a ‘sword grabber’, ‘mack the cream’, and socks safely to Santa. I quickly whisked him out and back to the car so I could escape confronting the feeling of having forgotten something behind.

I thought that was the worst of it. It wasn’t. I had been putting off decorating the tree this year. I just didn’t want to fuss with it. Christmas Eve came and Antonio finally took the reigns and decorated it. We have received several ornaments specially for Milo this year. We rounded them all up and put them on the tree. While beautiful, they suddenly struck me as never being enough. I would rather have him.

I felt bad that I had no idea what I would have gotten him for Christmas this year. His birthday gift is still in our garage unopened. Then then flood of wondering what he would be like now, three months later, if he was here. Would he be walking? Saying a few words? Would he like cookies or candy canes? What would he think of the snow this year now that he would be bigger to enjoy it? Just so many unanswered questions and the overwhelming sense of something is missing. It shouldn’t be like this.

The week before, while wrapping presents, we came across Milo’s Santa sack and stocking. I hung the stocking, but Santa wouldn’t be delivering a sack for a little boy that’s no longer here. It was hard to fold it up and put it away. It’s things like this that make me realize just how permanent this is. It’s these continual and hard reminders of how normal everything was and how we never ever imagined being where we are now.

Christmas Eve was the hardest. But, we got through it. We got it all out that day, so going into Christmas Day was better. I feared not being able to enjoy any of it for Gabe, but it was fine. We had good food and spent most of the day with family. The New Year was cheerful and bright too.

Now we get to go forward into January with Gabe’s 4th birthday, and then my birthday, and on with the rest of the years. We still haven’t heard anything from the medical examiners office. I fully expect in a couple weeks to have CPS visit us again and continue to check on us as the case continues to stay open waiting for the autopsy results. I am slowly trying to accept that they may never have answers for us. Some days I’m so sure it had to be something obviously wrong inside him, that we just couldn’t have known with his lack of outward symptoms. He was here, and then gone. Instantly. It still makes no sense to me, and probably never will.

All I have left are his memories: pictures and videos. This was one year ago. Happy and babbling little baby. My perfect boy. His dimples. His big eyes. He looks so much like his daddy, but had my toes. He had a single freckle on the back of his left thigh. He was long and lean, but chubby in the cheeks. We think his hair would grow to be wavy or curly. It was just starting to grow more. His whole life was just starting.

Month 3

Sometimes I think it is getting easier, and others it just very much isn’t. Nothing in our lives has really changed since September 18, but it all feels so starkly different. I’m forgetting what it was like to be overwhelmed with two small kids 24/7 and settling into life with just an almost 4 year old and almost 18 year old. This is exactly what I didn’t want after Gabe was born. I didn’t want two ‘only’ children. I wanted siblings, comfortably close in age, to grow up together. Even if we had another baby right now, it’s never going to be as perfect as it was.

We are making strides in everyday life. That’s cool. We’ve worked on several projects around the house together. It’s starting to feel like life is somewhat normal most of the time, but Milo is constantly always just on the fringes of my mind. The persistent what-if-he-was-here will never, ever stop. They crying has spaced out and become manageable, but it still hurts as deeply as ever. We still have no news on what caused his sudden death. We still have an open CPS case because of that. The forever lingering wonder of why, how, and what did this to our lives is dragging on and on.

I feel like I’m starting to forget him. I know I spent time trying to burn into my memory how his little hands felt in mine, the softness of his hair, and the chubbiness of his feet. Babyhood doesn’t last long and I wanted to remember it forever. It’s so hard to remember. It was all so familiar and routine 3 months ago. It’s like a long memory now that doesn’t seem real anymore.

I can’t remember what his crying sounded like. It was all I could hear echoing in my ears the days after he died. Now, I just have high pitched ringing in my ears in the silence in my house. It’s like a scene in a movie after a crash or explosion where the monotone pitch squeals through for a few seconds as the character tries to figure out what just happened. We still don’t know what happened and it’s crippling to wonder and rehash in my mind over and over. I keep waiting for that fast forward moment when we can react and make conscious movement forward. Right now it’s all just a continual lull of going through the motions and doing our best to be normal again.

Everything and Nothing

I’m spending time today doing things I have been putting off. Things I know I need or want to do, but doing them just means one less thing left to do for or because of Milo. Today just seems to be a day when it suddenly sets in that I’m never getting him back. Nothing will ever be the same.

I wrote out checks for some of the hospital bills. What’s extra dumb about that, is more than half of them were for Gabe and Lillianna. We had to take them the next day after Milo died, to the same ER no less, to have well checks performed on them because of the unknown circumstances of Milo’s death. So yeah, that stings. It’s like paying a fee for pain and adding insult to injury. I’ve had many ranges of emotions over dealing with the paperwork aftermath of all this. Continue reading “Everything and Nothing”

10 Weeks

It is still fresh. I don’t know when it will no longer feel so fresh and all consuming. I feel like, on the outside, that things are progressing. I’m putting one foot in front of the other. I’m carrying on. It’s not getting easier, as in less painful or sad, it’s becoming more routine. That’s all. Just routine to be stuck in this mental space where it’s numb and heavy.

I’m starting to feel the looming pressure of Christmas. So many people tell you how the holidays are the hardest, and it’s completely coming true. What would we have gotten him for Christmas? What would our Christmas photos look like? Just so many constant wondering what-ifs that we are left with. Ever single happy time is tinged with the constant what if Milo was here too? Would he be walking? Would he have a new favorite food? Would he be scared of Santa this year? It really will never end.

I do have more good days than bad, but the bad is still just constantly there under the surface. It feels like nothing is every going to relieve this emptiness. Even if all the most fabulous good things happen, Continue reading “10 Weeks”

Month Two

I feel like the second month was longer than the first. Hands down. It’s also been a somewhat easier month. Nothing major has happened. We’ve just been coasting and waiting, eagerly, to hear anything from the medical examiner. After a flurry of activity and projects started around the house we have slowed way down and are now just taking things day by day. Subtle changes still continue to catch me off guard from time to time, but I’m far less triggered and fragile than I was a month ago.

It’s still sad. It will always hurt. Even thinking about the hurt right this minute causes my chest to swell and my eyes to fill. It will never be fine, but I have started to see it will be better. I believe part of how it’s gotten better is I’ve started refusing to let myself go down the what-if rabbit hole. There’s nothing I can do to change things. There will always be things that I wonder about that if I had done them differently maybe it would have changed something, but then, maybe not. The waiting to know is right now the hardest part as we try to figure out where to go from here. Continue reading “Month Two”

They happen at the most random and unassuming times. Today I’m driving, listening to music, totally fine and eager to go to IKEA. Suddenly I’m reliving the moments sitting and watching the ER staff try to revive Milo, hearing their hushed and hurried conversation, going through their check lists of things to try to get something, anything, to work. I’m remembering the few minutes we got to see him after it was over. I wanted so badly to pick him up, but wasn’t even allowed to touch him. In those moments I was so stunned and numb, but now when I relive them I feel it all so vividly. So now, in the middle of a sunny day, I have to wipe my face, take many deep breaths, and just go on.

We Went To The Park

I knew I was going to have to go back. I didn’t know it was going to be today. I decided on a whim to take Gabe back there today while Lilly had karate class because I was tired of making him sit in the car with me for an hour. It wasn’t enjoyable for either of us. I needed the park to work for my sanity, and for Gabe to be able to get out and have some fun before dark.

It looked like a very familiar, yet drastically different place. The seasons have changed since I was last there and all the trees have yellow leaves or no leaves left. We took a walk down to the river front first, and within the firts few yard of walking, it hit me. The last time I was here Milo was alive and well. It was only days before he died. It was such a normal and routine place for us, and now it feels deflated and strange. When I got to the river I could see the water so well with all the foliage dying back. We turned the path and there it was. Continue reading “We Went To The Park”

Better Than Yesterday

I had a day where I felt normal. It was last week, and after a couple of really hard days, and was a much needed relief. I really needed this day to feel optimistic and energized for the first time since it happened. I actually cooked dinner. I made a plan, went to the grocery store, and made a full meal. It felt like such an acheivement. Even Antonio was surprised when he came home and saw what I had done.

napis-dekoracyjny-it-s-a-good-day-to-have-a-good-day-dekosign

But, then there is guilt. Nothing I do or say comes without guilt. How can I just be okay one day and completely broken down another? It is so odd to be stuck in this point where it feels like the last two years of your life have suddenly been erased, Continue reading “Better Than Yesterday”

Blog at WordPress.com.

Up ↑