My greatest fear

I had someone ask me recently, ‘What is your greatest fear?’ I actually had to think about it, for quite a while, because my instant answer was everything.

I fear everything. I am scared of waking up every day to the memory of my baby who’s no longer with me. I fear raising a child who lacks confidence and security and self-importance because his mom is a grieving mess. I’m afraid of this world where we are so self-absorbed that our things and our stuff and our material wants seem to mean more than the people who love us. And I worry that this shell of a human I am will be revealed and the walls will crumble and I will no longer be able to physically, mentally, and emotionally function.

But most of all, after really thinking about it, what I fear most is loss. I fear the loss of control over this life that keeps speeding by without asking directions, or my opinion on which route to take. I fear the loss of my network, my team, my people, when they finally realize there’s just no hope and I will actually never be the same. I fear the loss of my youth, my sanity, my happiness, my soul, as they all wane in the wake of the greatest loss of my life – my baby.

When I finally realized, and vocalized, the answer, the wise person posing the question said to me, ‘You have already suffered the greatest loss. What else, really, is there left for you to be afraid of?’

Truly? Nothing. I have already suffered the greatest loss. And I am surviving. And I have learned, through the guidance of my beautiful angel, and a whole lot of soul searching, that death is not the worst case scenario. And death is nothing to fear. And death does not separate us from those we love. And death is not an ending.

So I have nothing – nothing – left to fear.

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Thankful and grieving

My husband, sweet angel, and I spent three beautiful Thanksgiving Days together. Each bittersweet, as we had to make tough decisions about the health of our sweet, fragile baby, that alienated the very people who offered us love and support throughout his short life.

But we did what we thought was best, and as I look back, I am thankful for each of those three Thanksgiving Days, but I grieve so much as this third one without him approaches.

Every day without him on this Earth is a challenge. Every moment I consciously take a breath, remembering that he is in Heaven, and I am here on Earth, struggling to find the purpose in continuing on, and grasping at the memory of the mother I used to be while striving to be the mother I know I am destined to become, I can’t help but gasp in awe at this life.

My beautiful baby boy, who only had three brief Thanksgiving Days with us, will witness his third Thanksgiving Day from Heaven. His mommy and daddy’s first Thanksgiving with his little brother he never met on Earth.

And as his daddy and I prepare the turkey and talk to this new little man about all that we have to be giving thanks, there is nothing on this Earth that I am more grateful for than my own damn sanity.

Grief, and parenting, and marriage, and working, and life are so G-D hard! And right now, I am thankful that I am not in some sort of institution, in a padded room, tied up in a straight-jacket.

Ok, maybe that’s a little extreme, but there were points soon after his loss that I did not know if life would continue.

But it has. And I am ok. And every day sucks, just a little bit. Some days more than others. Especially days before holidays, or days after big celebrations, or days when others seem extraordinarily selfish, or days where another’s grief makes me feel worse. Every day sucks just a little bit.

But I am still looking forward to giving thanks. I don’t care about the turkey. I don’t even really eat it. But I am thankful that I wake up every day remembering the greatest little man that ever entered Heaven then get to go say ‘good morning’ to the greatest little man on Earth.

This post started after I read the following article, which I thought had a lot of great suggestions on ‘surviving the holidays’ but I ended up on a tangent. It’s a good read, anyway.

A psychologist explains the best ways to cope with conflict over the holidays

What we can handle

I had a conversation this past week with an associate I’ve known for years. He and I have worked together in some capacity for over a decade though we’ve never really talked outside of the professional arena.

We went on a team-building exercise to an escape room, where everyone has to work together to collect clues and solve puzzles to unlock the room’s door.

There was also a zombie in the room – yes, a zombie – simultaneously terrifying and distracting us while we tried to dismantle the pieces and not pee our pants.

We succeeded in our escape with seven minutes to spare by using a combination of hopping from corner to corner, screaming in fear, and at one point I was singing and dancing in an attempt to distract our zombie while other, smarter, team members unlocked clues to our freedom.

After we recovered, we decided to grab a drink before retiring for the night. My colleague and I ended up discussing our children over a beer at the bar. He has been very supportive of me professionally since the loss of my son, and has an empathy most others cannot offer.

He too parents a special needs son, and at one point said to me that he believes we are only given what we can handle. This was only after he humbly described in great detail the challenges he faces daily, while never once complaining. And I could see with every breath the love, admiration, and absolute awe he felt for his child.

In the middle of my tears, I told him, ‘I call bullshit on that theory.’

I don’t believe we are only given what we can handle. He is just a kick-ass dad with an amazing kid who appreciates the blessings this life gives.

We are all faced with challenges, some tougher than others. Some tackle those challenges with grace and dignity. Some whine and complain and make it harder than it needs to be. And some just keep getting crapped on no matter how much good they offer this world.

But I am a firm believer that we get out what we put in. If we live in love and light, love and light will find us. If we believe we can handle what we are given, then we absolutely can.

A hello from the Heavens

I picked my little angel on Earth up from daycare this afternoon and asked him if he wanted to go to the store with me. I had several errands to run as we are having a little belated birthday celebration for him tomorrow.

He happily said yes and we drove to the local supermarket. As we walked in, he insisted on a ‘race car’ cart, which I saw nowhere. I asked him to look at the row of carts and tell me if he saw any that looked like race cars. He replied no, and I explained that I thought those carts were only at the other grocery store.

As I loaded him into a plain old metal shopping cart, he pointed out the automatic sliding doors to a dad unloading his little girl from a red race car cart. “A race car, Mommy!”

I helped him out of our boring cart and we walked outside to grab the cool cart that was conveniently left on the sidewalk outside.

As he climbed in, he promptly scooted to one side, buckled the seatbelt and said, “This seat is for Jonathan!”

I thought it interesting since he has no friends I’m aware of named Jonathan, and no classmates with that name.

I immediately texted my aunt, whose son – a precious angel my son never knew – was lost two years ago.

I explained in a text what he said and envisioned dear Jonathan sitting next to him in their race car cart.

She texted back, “Tomorrow is his birthday.”

I hadn’t even realized it when I sent her the message.

With a little faith

I don’t write to express political beliefs or comment on the state of our nation. I do it for me, to heal, to convince myself that I am ok, and that this wonderful life can continue even after tragedy.

But this last month has been really tough. Tough for a lot of people in many different ways. Our country alone has been hit hard by some terrible, devastating events. And here I am, still crying over my baby lost, while trying to raise my baby gained, and clinging onto some hope that it just must get better than this.

So tonight, after three days of a little one with a fever, missed days of work, too much daytime news, and quite a bit of frustration, I told my sweet little man to pick his two books to read before bedtime.

He’s feeling pretty terrible, and a little extra whiney, having eaten very little in the last few days, and still running a temperature, so I said, “Buddy, for a special treat tonight, let’s go downstairs to pick your two books.”

He was very excited, as usually his two books come from a big bin on his bedroom floor full of board books he can keep in bed that we’ve read twenty five times each. The books downstairs are those we rarely see, that are put away on shelves, ones Mommy wants to be careful not to ruin because they were given to his brother on a special occasion, or have sentimental value, or may still have some scent of my little angel left on them.

We walk downstairs and he scans the shelves. He wants the biggest book he can see, which is our Children’s Bible. I can honestly say it has maybe been opened once, and I’ve never read a single story in it. The other is ‘Curious George.’

We snuggle in on the couch and the TV mumbles in the background while I open the big book. He sees pictures of animals and asks for that story. I begin reading ‘Noah’ to him and we look at pictures of the arc and the animals walking two by two. At the end of the story, I begin reading how God sends a rainbow, and immediately think of my sweet angel and how he sends his Mama rainbows. At that very moment the TV shut off. I kept reading and my little man said, “Mommy, you see rainbows?”

“Yes, baby. I do. Your brother in Heaven sends them to me.”

‘Oh!’ He exclaimed and smiled.

I put the book down and open Curious George. On the first page, one that hasn’t been seen for almost 5 years, is his brother’s name and the date we gave him that book while he was growing strong in the NICU.

Thank you, angel, for showing yourself and restoring my faith. We know you’re with us and will always welcome and watch for your little ‘hellos.’ We know, because of you, to keep loving this life.

A common theme

It’s no secret that I am a grieving mother, struggling every day to balance a busy life while remembering my sweet angel in Heaven. That struggle has been tougher this week as I’ve had longer, harder, busier days. My angel on earth has tested me a little more and is showing his independence in new and challenging ways. And my sense of responsibility for doing it all grows with each day that passes.

I am constantly searching for guidance in this world I’m learning to navigate. Today I read the following article:

13 Things Mentally Strong Parents Don’t Do

Now, not only am I trying to be a sane human, but I’m striving to be a “mentally strong” parent. I want to be the best version of everything to everyone all the time. Realistically, I know that’s not always possible. But, the version I’ve been this past week, to me, is less than acceptable.

Today, as I sit here writing while my little man sleeps in the other room, I am reviewing the activities of our day and am counting the times I could have reacted better, showed more patience and understanding, empathized with this little man who is still finding his place in my world.

I see him interact with his peers and so often he loses his patience, reacts with emotion, or uses his body to show he’s upset, or frustrated, or just plain tired. While he’s only been ‘mine’ for less than a year, and I know that the age of three is often a time when little ones will test their limits, their boundaries with others, and assert their independence, I’m scared that his negative reactions are truly a reflection of my behavior as his mother.

The most important quality I feel I can instill in him, along with respect for others, is a sense of empathy for those around him. This is such a common theme in all I do, including my relationships, my work, and now my parenting. I want him to really grasp, and feel what it’s like to be in another’s shoes. And as much as I try to lead by example, as I truly feel the only way to ‘teach’ empathy is to live it, when it comes to my dear sweet son, I am failing him.

I constantly think of his brother in Heaven and what he thinks as he watches over us. Did I give the correction I should have? Was that consequence I settled upon appropriate for the behavior? Am I treating this child with the correct amount of discipline, and more importantly, do I show him enough how much I truly love him? Even when he doesn’t listen. Even when he makes a choice I’d rather he didn’t. Even when his behavior is less than I expect, or even demand.

Is my parenting enough to raise a confident, empathetic, sweet and independent, driven man, who at the end of every day, truly knows that he is loved?

I know I need to live the expectations I have for him. And only then will he be the very best version of himself. But am I capable of this, nearly impossible feat? Only time will tell.

The weight of it

In the last two months I’ve lost almost 15 pounds, but I feel heavier than I have in many years. The weight of responsibility in a world where I am now in control of my body, my emotions, my feelings, my little family, is absolutely, terrifyingly suffocating.

The world that consumed me just months ago was one where my grief, my loss, my living day to day without my baby, was excuse enough for anything. A missed phone call, a late arrival, a day off work, a forgotten appointment. I had a ‘free pass’ because I was in the throes of grief. My pain, my mere existence without my baby, was reason enough to excuse my failures.

But today is different. I have accepted a new reality. I have taken charge of my family, my career, my finances, my health, and I am making it work despite my pain, in conjunction with my grief, with the presence if my angel watching over and guiding me.

And I am proud of that. I was meant to be this person. A person who does not accept defeat. Someone who makes the best of a rough situation, and a mama who, every day, aims to make her angel proud.

So now, on days like these, when the heaviness of all this pressure, all the responsibility, all the life, feels like it’s just too much, I want to just crumble. I want to scream to the heavens and say, “Come back, baby! Whatever this life is, it’s nothing without you!”

But I don’t mean that. I am proud of who I am, what I’ve done, how I’ve evolved, and where I know I can eventually be. But, lord, would it be so much nicer to be celebrating all of this if he were here with us. If I were making a stop at kindergarten before I stopped at preschool. If my calendar were filled with two sets of curriculum nights, and two PTA invitations, and even more insanity and craziness than fills the calendar now.

I love the life we are creating and continue to grow. But it’s always just missing something. Something, even in the fullness, is always a little empty.

Emotional capacity

As a bereaved mother, the parent of an angel, I have an emotional reserve no bigger than a thimble. Yes, the amount of stress, duress, conflict, it takes to fill me up and tip me over could fit inside a cup no bigger than the tip of my finger.

I have worked extremely hard to try to eliminate triggers, reduce stress, minimize conflict, over the past two years since losing my son, so that I could try and utilize any and all emotional reserve that may remain for love, compassion, and empathy.

But life just doesn’t cooperate with my plans. It’s tough, and mean, and spiteful, and nasty. And I have made choices that I am proud to defend. But those choices have led to conflict, and turmoil, and tension that have both tested me, and resulted in some growth of my emotional capacity.

In my life, I play a number of roles, the primary of those being a mother to an angel, a mother to a growing boy, a wife, a daughter, a sister, a friend, and a professional. In the pie chart that is my collection of roles, there is only so much space for emotion. And while I’d like to hope that I give a little to each somewhat equally, the truth is, grief, still, two years in, still swallows a majority of that pie.

Almost one half, or just about the rest of that emotional pie, goes straight to parenting. The emotions that parenting requires takes me on a rollercoaster so many times a day, I’m either dizzy or close to nausea just about 24/7. It’s constant fear, and guilt, and pride, and joy, and worry, and elation…and words that don’t even exist.

So that leaves about three percent of my emotional capacity left for everything, and everyone, else. Is it fair? Absolutely not. Would I like to give my husband and my parents and my friends and my siblings and my work the emotions – the true heart – that are consumed by parenting and grief? Absolutely.

But that is a balance I am going to figure out how to master. Because right now all I can do is try to raise the most confident, kind, and strong tiny human possible, while simultaneously grieving the sweetest, bravest, and happiest little angel ever born.

Managing

I had the pleasure of talking briefly about my angel today to one of my doctors, who also happens to be a dear friend. I’d gone to see him after a week of suffering a terrible cough I was convinced had turned to fatal pneumonia. Turns out it was a virus with some bronchial irritation, and I will live, but I got to chat with him nonetheless, which I always enjoy,

He was telling me he had just made a slight faux pas with another patient who recently lost her husband. “I told her the sun will shine again.” With that he kind of giggled and we talked about the current cloudy day and simultaneous solar eclipse.

But it’s true, I told him. The sun will shine again. I believe I am proof of that.

Two years ago, all I could manage was my grief. After just months since losing my only son at age three, I was lost, broken, abandoned on an island where I thought no one would ever find me.

Today, I thought, leaving his office, my mind swims at the end of every day with all the tasks and responsibilities I somehow seem to manage. I am managing a high dollar account at my job as well as multiple employees. I manage a household and a marriage and (sometimes) a wild three-year-old. I’ve somehow managed to maintain some friendships with those who’ve continued to love me despite my flaws and faults and insanity. And I’m managing to survive. I am managing to survive this life without my beautiful baby. Because he is in Heaven, and I am his mama, and that keeps me going.

I am not perfect. I am mostly a mess. And I screw up multiple times every single day. But my wonderful, kind-hearted, well-meaning doctor was so right in his message to that grieving widow toady. The sun will shine again. We will all manage to get through whatever raging, violent, terrible storm decides to trash our doorstep. If we just have faith that we are stronger than that storm and our sweet departed angels are right there with us, safely keeping the wind and lightening at bay. We can all weather the storm and find our sunshine.

The debts I owe

How does anyone begin to repay a lifetime of gratitude?

I have innumerable debts that I know I will never be able to pay back, pay forward, or pay sideways, even if I dedicate my entire life to service.

In the past decade, I have received an organ transplant from a living related donor. My beautiful angel in Heaven received a transplant from a child whose loving parents chose to share a piece of their beautiful angel. I have depended on countless individuals who continue to stand by my side no matter how deep I let my grief consume me, how angry I become at this life, or how impossibly I react to the challenges life deals me.

I have suffered. Maybe more, maybe less, than those around me, but I suffer. And I hurt, deeply, every single day I walk this Earth without my sweet angel in Heaven.

And in that suffering, an immense army of individuals formed who has not only helped, but made me the survivor I am today.

Sure, I can say thank you a thousand times. I can send thank you notes, hand written with envelopes decorated in stickers, to express my gratitude. I can show my appreciation through friendship, love and support, the best way I know how.

And if I were to ask any of these individuals how I might repay them for all they have done, every single one of them would say they did what they did out of love. Purely and simply. No ‘thank you’ needed. No repayment of the debt. No IOU, no guilty feelings, no uneasiness that maybe something is a little off balance because I have been the recipient of graciousness more than I have been the giver.

They just do what they do out of love. Those are the people in my corner. That’s my team.

I had the ability, just recently, to help out a dear loved one with an opportunity. It is rare, so rare, especially in the last few years, that I have been able to offer anyone anything, other than maybe to listen or offer some kind words and support.

But I had this opportunity and I took one very small action that led to someone else feeling gratitude toward me. And what I wanted was the same as all those who’ve offered me unendless support, and favors, and love, and kindness.

I wanted nothing. Because giving, helping, assisting someone with something, anything, feels so good in its own right.

I just did it out of love. An unconditional love I have for this person. And a love I have for being able to do anything, anything, to finally help someone other than myself. To be able to step back, remove myself from my own needs, and just be selfless.

I don’t think there could be anything more gratifying on this Earth.