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.

All I had to do was ask

Yesterday, I asked my sweet angel in Heaven if he could hear me.

I get signs from him all the time. Things I see, hear, experience in my every day life that let me know my sweet boy is still with me.

Just last week I’d gone for an ‘energy’ healing. It was something new I’d never done, and I figured anything that could take away my stress and anxiety, or has the potential to, couldn’t hurt.

After the session, the Reiki healer had several messages for me that I knew could only be from my son. But still, I wanted my own proof.

So last night, before going to bed, I talked to him, as I often do. I told him I wanted a clear sign that he was listening, that he could hear me. That he is still, and will always be, with me.

The first thing that popped in my mind was a ‘purple diamond.’ I don’t know why. Or how. But I said. “Buddy, if you can hear me, please send me a purple diamond.”

Today, as I ran errands, I looked all over, hoping I would see anything that resembled a purple diamond. In my head, it was like a construction paper cutout of a diamond shape in a bright, crayon kind of purple.

I, of course, told no one of my request. This was between my angel and me. Like so many of our days together on Earth, and all my conversations with him now, it was just him and me.

All day, nothing. I told myself to be patient, while at the same time rolling my eyes over the ridiculousness that I would somehow, sometime soon, see a purple diamond.

Then, as I was getting my angel on Earth ready to leave the house for our Saturday adventure, I received a text from a friend.

There it was – our purple diamond – sent directly to me in a message. Not a faint cloud of smoke that I may have imagined. A bright, purple, diamond.

From him. To me. Just him and me. 😇

Heart heavy

I found out today that a mama, who I really don’t know well, but who was instrumental in helping match us with our beautiful angel on Earth, lost one of her children recently. I don’t know the details, or the circumstances, only that she and I are now connected, as sisters-in-loss, mothers parenting children in Heaven, carrying a weight heavier than any burden a woman should ever need to bear.

The news came during the beginning of the same week, that three years ago, my sweet angel was diagnosed with his terminal illness and began fighting his five-month battle for his brief, beautiful, bountiful, three-year life.

My angel, my baby, my perfectly created soul, began his journey to peace right around this time three years ago. Three years it has been since he got sick. Three years is all the time I got to have him on this Earth.

How cruel, and how ironic, and how amazing this lovely life is, that I am about to celebrate the fourth birthday of my new beautiful angel on Earth in this same month I mourn the beginning of the loss of his brother. This perfect boy whose been mine for less than a year, but who belongs with me as much as his brother did, and who forces a strength and resilience in me that compares only to that in which his brother’s loss forced me to find.

These two boys, who stir a hurricane of emotion in this mama from minute to minute, a battle between grief and gratitude, and a hope for a future where positive memories coexist with positive reinforcement, have left me satisfied.

Satisfied with my story. Saddened by my fate, but thankful for my blessings. Grateful for my lessons, but yearning for understanding. And hopeful for the future. Because I see a bright boy with nothing but potential. And an angel just waiting to guide him toward it.

A prayer for the expecting mama

I called a little angel by his name today
And I said ‘I need you, son’
I need you more today than most
To help fight a battle that needs won

I’m hoping that you’re listening
I know I ask an awful lot
But this mama has a heavy heart
And could use the magic that you’ve got

She’s carrying a previous gift
One we all look so forward to meeting
And I know the moment she arrives
It will be the most celebrated greeting

So I ask you dear, if you wouldn’t mind
From your spot in Heaven above
That you look over this mama and baby
With a little extra care and love.

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.