#18: Schedules

I just got back from Mexico. It was a trip I had planned with a girlfriend shortly after Alex died. It was meant to be a brief getaway. A time to relax, to cry, to think, to talk and to just do nothing… Time passed and work schedules were changed, and we didn’t get to take this trip until just last week. As it turns out, I didn’t spend the time quite the way I had planned.

We did all the things you do inMexico. Enjoy the sunshine, drink margaritas, eat too much Mexican food, etc. When I got there, I didn’t need to sink into a depressing Alex coma. The sun was shining and my mood was soaring. Later in the trip, I tried to summon my grief and sadness. I wanted to mull it over and spend the time thinking about my precious boy. As it turns out, I couldn’t do it.

There’s no magical button that lets you recall your grief “on demand.” It is there when it’s there, and it’s gone when it’s gone. You can’t really wish it away when it’s inconvenient to deal with it, and you can’t call upon it when you want it. Grief and sadness have their own schedules and they don’t consider yours.

I know it sounds ridiculous. Why on earth would I think I could schedule my grieving? Wait for a time for it to work into my life and then just spend 4 days solidly, considering how much I miss Alex. The heart does not work that way, no matter how much the mind can will it to.

When I got back from a peaceful, serene trip, my mind wandered into the darkness and started to churn on memories of sweet baby Alex. When I’m on my way home with a thousand things on my mind- that’s the time my heart wants to think about Alex. Good grief.

Not like I have a choice- I succumb to the memories and the thoughts and the tears. There’s so much more that’s happened since the last time I strolled the path into the darkness. The Medical Examiner is signing the death certificate and we should have it this week. The cause of death is “inconclusive” with an asterisk indicating this heart condition.

As I wander through the fog of grief, none of these details change my journey. It’s still sad. He’s still gone. I still miss him.

I feel like I come out of the haze a little quicker. Not sure it is because the path is shorter, or because I know the way out. Either way, I now understand that I can’t schedule a trip to grief, and I can’t avoid the trip when it’s time. There are unexpected times when I’m sad about Alex and unexpected times when even deliberately thinking of him doesn’t spark the same sadness. There is no rational schedule to any of it.

Tomorrow is my birthday. For the first time in years, I’m not sure this one is worth celebrating. I have a theory on birthdays. If your life is better now than it was last year, then the number of candles on the cake doesn’t matter.

As much as I have learned from losing Alex, I don’t think I can say that this year is better than last year. I was 12 weeks pregnant last year on my birthday. I hit that magic mark where we heard the heartbeat and didn’t worry if the baby would make it. That magical milestone was cause for joy and thanksgiving. God had given me the best birthday present I could ever ask for!

What is this year? It’s missing Alex. As the holidays approach us, it’s a first Halloween costume he won’t wear, a first Thanksgiving set of PJs he doesn’t need and a Christmas bib he can’t use. Doesn’t feel like much of a celebration to me.

I haven’t forgotten the blessings I have in my life. I promise. I know they’re still there and I don’t take them for granted. It’s just that I wouldn’t say that my life is better this year than it was last year. It’s not filled with the excitement and promise of a new baby in our family. There is no guarantee of happiness. There is only hope.

When I blow out my candles this year, I’ll be praying that hope is enough. At least until next year.

 

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Blog #17: Forgotten

Ben and I took a trip to Boston this week. We spent some time together without any kids for the first time since Alex died. It was nice to talk and laugh and have fun together, like we did when we were dating. When life was simpler and we were free from the all the stresses of life we have now.

While taking a tour, we learned about life during the time of the American Revolution. It was a time when sickness was rampant, and it was common for families to lose children before the age of 5. As many as 50% of all infants wouldn’t make it to see their second birthday… how sad. What was most striking to me was the descriptions of how families reacted to all these infant deaths. It wasn’t uncommon for parents to re-name subsequent children the same name as children who had died.

What I liked most was how they retained the memory of the children who had passed on. If the family was having a portrait created, artists would paint in the children who had died as if they were still living. The children were still depicted as active members of the family, the age they would have been if they had lived. The only difference was that these children may be painted barefoot, in pajamas, or pointing upward as a way to indicate that they were in Heaven.

When guests would see the family portrait, they might comment, “You have a lovely family with five beautiful children. I see that two of them have passed on. I’m sorry for your loss.” Why don’t we have an equivalent of that in today’s society? A socially acceptable way to let people know that you have a child you don’t want to be forgotten? A child who has passed on to Heaven, but is still very much a part of your thoughts each day… A child that you want to talk about without creeping everyone out… A child that you want people to remember with you, regardless of how much time has passed.

We are grateful that we have Benjamin. He is a beautiful child, full of life and laughter. He brings a smile to everyone’s face and when we’re in public, he literally stops traffic with his good looks and charm. Throw in his sparkling personality and naughty toddler antics and we are a walking sideshow of entertainment.

We were out to dinner tonight and Benjamin had at least six tables captivated with his silly behavior and crazy commentary on the evening. As proud as we are of him, I can’t help but feel angry that people don’t know about our other beautiful son.

Alex was just as special, handsome and fun as his brother. He was full of love and joy, quick to smile and brought happiness to those around him. All of the strangers that stop to admire his brother don’t know about him and it makes me sad.

I’m not trying to elicit sympathy or make situations awkward, but I want people to know about our other beautiful son who isn’t with us anymore. It’s not fair that he goes unnoticed, and it’s not fair that there isn’t a socially acceptable way for us to talk about him.

Alex was special and perfect and just as deserving of attention as his brother. How can we keep him alive in our hearts if we can’t even explain that he exists?

My sweet Alex, you will live on in the hearts of those who knew you, and I’ll find a way to make sure you aren’t forgotten. Just give me time.

 

 

Blog #16: Okay

I am ready to be done. I have prayed and cried and questioned and analyzed everything. I’ve chatted with the Medical Examiner and the doctors and everyone else in my life. We are where we are with Alex and I’m done. I’m not saying I want to collapse in a heap, completely spent, but I want to move on.

I want to move onto another chapter in my life. A chapter with hope, peace and love. More children, more diapers, more morning sickness. More blessings than sadness- more prayers- more laughter- fewer tears.

To clarify- I’m not crazy or desperate. I don’t have an irrational urgency to move on with things, but I have this calm peace within me that says, “it’s okay.” I haven’t cried in a week. I know that’s a weird way to gauge progress, but there are so few metrics I can use to measure if I’m “getting better.” I’m sorry to say there’s no emotional dashboard that tells me if things are better off now. Crying is if one of the few indications I have.

Someone congratulated me and asked me about my life as a “new mom” today. It was fine. No drama, no grief, no tears. Not even the brief sting as I explained his death. It was okay.

It’s not that I miss him less. It’s not that I love him less. It’s certainly not because I have forgotten. I just have this warm, pulsing feeling throughout my body that resonates and reverberates and tells me, “it’s okay.” My body relaxes, my heart expands and I exhale. It’s okay.

It’s like my mind, my heart and my soul are all finally aligned. I’ve given myself permission to let go of the grief and the guilt and the anguish. It’s time to start the next chapter in our family. I’m ready.

As I write all this, I feel callous saying, “I’m okay.” Less than 100 days into this and all of a sudden I’m a new person? I can’t explain it. Is it divine intervention that enables me to move forward? Is it the logical conclusion that there’s nothing left to fixate on? Is it just an impatient desire to “get it all over with?”

I don’t know. I know that happy feels better than sad. I know that my family brings me joy. I know that the plan created for our family isn’t done yet. I know His plan for me is better than my own. I accept that; more now than ever before.

It’s been over 90 days since he died. At one time I never thought we would get this far, but here we are. At this time Alex has been gone longer than he was here. That thought doesn’t depress me the way I thought it would before. It’s just a fact.

There are good things that have come from all this. There are blessings and joy interspersed with all the sadness. I’m not saying that everything is happy, but I can find the blessings in this.

My marriage is strong and sound. Ben and I have been together for 14+ years now. I’ve known him my entire adult life and he is my best friend on the planet. If we can survive the loss of a child, I know we can handle the rest of what life throws at us.

Benjamin brings pure, unabashed joy into our lives. There was a time when I thought that the death of Alex would overshadow the good times with Benjamin. Not so. Not even the sadness of losing Alex can cast a shadow over the exuberance Benjamin brings into our lives. Add Benjamin to anything we do, and it’s instant family time. Even a trip to the grocery store morphs into a fun outing with special memories.

My faith is stronger than ever. At first, I thought it was because I needed so desperately to cling to something positive. I now realize that I make a conscious effort to seek Him in everything I do. It’s not because I have to, it’s because I choose to. He gave me a wonderful gift in Alex. He weeps with me now as I mourn the loss of my sweet boy. He was there when Alex died. He’s there with Alex now and He’s with me now as I write this.

There is a peace with what has happened that I feel settle into my mind and my heart. The anxiety and uncertainty I felt before is giving way to a calm tranquility I have never known before. I can’t control my life, or my husband. I certainly can’t control my two year old child. That’s okay. I have blessings all around me and my cup still overflows.

I can fight and argue and wrestle with the reality I’ve been given, or I can accept the possibility of what will come. I’m still sad about Alex, but it’s like that sadness takes on a new form. Instead of this enemy that I fight day and night to shut out, I walk side by side with my grief. I accept its presence in my life and take comfort that the grief I feel is just evidence of the great love I have for Alex. I finally feel freed of the grief that has swallowed me whole.

I’m different now. I’m not the same person I was before I lost Alex. But I’m not that same broken mommy I was when he died. I’ve emerged as something else and it’s a far cry from perfect, but it’s okay. I’m not going to reject “okay” waiting for “perfect.” Life is too short.

 

 

Blog #15: Destination

It’s okay. We are where we are at with Alex, and that’s all there is. There aren’t really any more facts or details that are going to change anything for us. We are a family permanently altered by our circumstances, and there are times when accepting that is easier than understanding it.

90 days have passed. Enough time for me to see some wisdom we have learned. Enough time for me to see how we have learned to love harder, trust more and pray more frequently. Not an easy 90 days. But important in our journey.

Without this event, would we value life, and our family as much as we do now? We traveled as a family to the great state of Texas last week. Our flight was canceled and we didn’t so much as blink. We need to come back tomorrow, and you can only get us to Chicago? Okay. We need to rent a car from O’Hare and we are running precariously short on diapers? No problem. You want me to wake up my 2.5 year old at 4am to have him wait in a long security line? We’ll be there.

It’s like Alex’s unexpected departure has imparted me with wisdom I didn’t have before. Everyone knows that life is short. I have proof. Everyone knows you should cherish your children. I know why. Everyone knows that there are no guarantees in life. I get it. More than I would have before.

So what does this new knowledge mean for us? Does it mean we live a charmed life from here on out? Probably not. I imagine we’ll still step in it as much as the next family. I do think that we will probably be better prepared for what life throws at us. Good, bad or in between. We will make the most of things and pray for wisdom to cope. We should have been doing those things all along. We didn’t.

There is wisdom and peace that comes from prayer. I am just starting to learn about this. I have gone through my entire life without *really* praying. I would go through the motions and talk to God. I now know that it is to pray with your heart and your soul because there is nothing left to do. You have exhausted your strength, you’re out of ideas and don’t have any other options. That is powerful prayer. I wish I would have learned this skill years ago. Imagine how much easier life could have been.

I get it now. Alex’s death has brought me from the brink of Hell to the place that I’m at right now. Some days are good, others are bad. Either way, it’s a place with wisdom, compassion and understanding that I had never know before. I didn’t like the journey, but I don’t mind the destination.

 

Blog #14: Autopsy

They found something. The medical examiner, the pathologist, the coroner… I’m not sure who does what, but they found something. Alex had a developmental issue with his heart. A developmental configuration problem, not genetic. A condition that couldn’t be detected with a physical exam.

It’s the same type of thing that happens when a healthy athlete drops dead during a game, or a practice. A marathon runner dies during a routine jog, or a football star collapses inexplicably. A type of heart defect that could have gone undetected for years until something happened. We’re still trying to understand the magnitude of the issue, but it sounds like his heart was a ticking time bomb.

“A slit- like, main coronary osteo.” One of the valves in his heart should have been at a 90 degree angle from the aorta. His was acutely angled downward. While we thought his death was SIDS, our pathologist is insistent that Alex’s issue was different.

After all of these weeks, I have made peace with the fact that Alex died of “natural causes” and that he stopped breathing. I was never expecting that they would find anything medically wrong with him. I have shouldered the burden of guilt on and off during this time. Like a cloak that I could take on and off as the mood felt right. Sometimes I made peace with the fact that it wasn’t me. Other times, it was the only thing I could think about. Now there is conclusive evidence that Alex had something wrong with his heart.

At one time, months ago, news like this would have felt like a relief. It would have felt liberating, vindicating, calming. Now it settles in my mind and I keep turning it over and over trying to understand how I really feel about things.

In theory, this is the best possible scenario, right? A tangible explanation for what happened. A medical explanation that doesn’t put Benjamin or any future children at risk. Why does this news seem so empty to me? Not that this is “good” news, but it medically explains what has happened to Alex, and provides some “proof” that there is no blame in his death.

As much as I thought something like this would make me feel better, it doesn’t bring him back. The sadness of missing him seems fresher now. He had something wrong with his heart. How could my little boy, who looked so perfect, have something fatally wrong with him?

The doctors couldn’t detect it, should I have known? I knew him more intimately than anyone else. What is missing here?

Maybe it’s because it’s his heart. It’s one thing if he stopped breathing, but his heart is something that has so many more sentimental attachments to it. You love with your heart. You hold emotions with your heart. His absence breaks my heart. I held my perfect little boy in my arms, never realizing that heart would fail him. I felt such a perfect love from him during his two blissful months on earth. That his heart wasn’t working right makes me feel like that love was tainted.

I know that doesn’t make any sense. The heart muscle pumps blood through veins and arteries. When we feel emotions and love, those feelings come from your brain, and we have attributed them to our hearts. I can’t explain it- my perfect little Alex having any sort of abnormality with his heart brings a new level of pain. Maybe because we see heart surgeries succeed every day. Or maybe because it’s something I never thought a young child who had 1700 ultrasounds would ever have an issue with. Alex’s heart failing him changes the way I view his death all over again.

When I think about the type of heart condition that this was, Alex could have died at 2 months, 2 years or 22 years. Is it wrong to be grateful that he died so young? My mind takes me these places and I don’t know how to turn it off. As terrible as it is to lose him after only two months, I can’t even begin to fathom losing a child at an older age. After you’ve seen him take his first steps, heard his first words, watched him mature from an infant, to a boy, to a man.

I feel cheated that we didn’t have more time with him, but I wouldn’t change things. If I had even one more day with him, I think our goodbyes would have been immeasurably more difficult. And I feel selfish and guilty for thinking these things. Am I really saying I wouldn’t have wanted more time with him because of the hell and the pain we’re going through now?

As much as I would give everything I own to have him back, I can’t imagine losing him later in life. What if we had lost him 10 years from now, when we would be too old to have any more children? At least now we can continue our family and Benjamin can still have a sibling on earth. So now part of me is grateful that things happened the way they did- is that terrible? Gratitude is not an emotion I can understand right now.

And I think about all the ways this could have happened instead of the way it did. Maybe when I wasn’t home with him, maybe once I had gone back to work, maybe when we were still in the hospital… My mind keeps churning on all of these possibilities and I just can’t stop. It’s like I need to conceive 300 different ways Alex’s death could have been worse in order to feel just a little bit better about where we are.

Some people count their blessings, it’s like I choose to count all the crappy things we have somehow avoided.

We found all this information out two days ago. We were on vacation in Texas, enjoying the sun and the pool when we got the news. An unexpected twist in a family getaway that we really needed. We had envisioned time spent thinking beef brisket and sunscreen, not autopsies and heart defects. At least we were together though…

I haven’t really slept since we found out. I just lie in bed and think about Alex’s little heart. Did he feel any pain when it happened? Was he thinking of me when it happened? Did he try to cry out and just couldn’t? Was there anything I could have done for him, had I known?

My faith in God is stronger now than ever. I’m not angry at God for taking Alex, nor do I doubt that God is in all things. It’s not because I’m such a fabulous Christian. Rather, faith in God is the only thing I have left. How terrible and empty would our lives be if there was no heaven? If Alex’s death was the end of his life forever? If there was never a chance that we will meet again?

I’ll steal some words from a song that has special meaning to me now.

Heaven is the face of a little boy, with dark brown eyes that disappear when he smiles/ Heaven is the cry of a little boy, that says mommy please, wait while I nurse for awhile/ And God, I know it’s all of this and so much more/ But God, you know that this is what I’m aching for

We’re still here- hoping and praying. Sometimes tears, sometimes smiles- always in search of laughter and joy. We did have a welcome gift when we got home though. Alex sounded the siren twice during naptime.