I read a story online this morning from an elderly gentleman describing grief. That the deeper you love, the deeper the grief, and that someday the grief won’t feel like 100 feet waves every 5 seconds, with no time to breathe in between. I long for that day, the days when I can think about Connor without tears running down my cheeks. The days when the Facebook memories don’t cause a full blown meltdown before I even get out of bed.

Currently the waves are 10 feet tall with 5 seconds in between to breathe. I am treading water so I don’t drown. It is exhausting and painful, it makes every part of my body hurt, physical as well as emotional, and there are no way to separate the two.

My dear friend Erin has never lost a child, but wasn’t very old when she lost her husband and was left on her own with a small child. She assured me “that someday the 17th of the month will pass me by without a flood of tears, that someday I will be able to breath on that day without a hitch, and the fear that I will see, hear or smell something that sends me back into the depths of grief.” It has been 20 years for her, and in the last 3 she is finally able to breath on the 4th of every month.

I have hope, hope that I will be able to crawl out from under this heavy weight, hope that someday I will smile first instead of cry. Hope that someday Jordan will find some peace as well. The fruition of these hopes and dreams will come with time, and hard work. Time just ticks by, with the clock, and the hard work comes from the time I spend in therapy, the time I spend with my dear friends, and the time I spend writing and thinking.

This pain will never go away, because like any good mom, I loved Connor with every beat of my heart and to the depths of my south. What it will do is become manageable with time, and that is all I can hope and dream for.

It is no secret that as much as I love being a Boy Mom. I yearned for a daughter. Girl baby clothes are just so much cuter and I craved the mother daughter experience. From pre-school in Connor brought a string of girls home that I “adopted” into my life, Krystal, Mackenzie, a few fleeting ones at Mohawk, Hailey and then Jordan. He protected Jordan like she was made of crystal.

First we weren’t allowed to talk to her when she called. He would sprint to the phone yelling “I got it, it’s Jordan, she doesn’t want to talk to you anyway”, then if by some miracle we picked up the phone first he would immediately say “hang up she doesn’t want to talk to you, she’s my girlfriend.”

It was obvious he had found his love, his other half and the girl that complimented his soul. He learned about horses, and he taught her about SCCA Rally Racing. They loved the beach, and Connor was learning all about horse pulling from Jordan’s dad. Connor became a part of their family and Jordan became a part of ours. He brought me a daughter, one that is beautiful and kind and sweet. One who adored Connor, with all his craziness, his romantic side. He would bring her flowers just because and loved to spoil her with iced tea, candy and pop tarts.

In return Jordan treated him like a king, sending him notes, watching him play baseball and getting that darn goat with him. They truly were a matched set, made for each other. He spent more time at her house than he spent home, it seemed. But he was comfortable there, he felt like family, with the girl he loved.

Although they were only teenagers I envisioned them together forever, and so did he, I saw grandchildren (far in my future) and them living their lives together. That dream and vision was shattered for all of us last November. I have Jordan, and I will cherish her as long as she will remain in our lives. She is the daughter that Connor sent me, I just don’t understand why I can’t have them both at the same time, but I will hold onto what I have.😢

These last almost 11 months have been a delicate balancing act. Between enjoying the memories and pictures that I have encountered within these 11 months, and being bombarded with the waves of grief that those memories bring. Knowing that I will never be able to hug him again, or have a 2 sided conversation with him, hear that infectious laugh of his, or see those gorgeous blue eyes in person, watch him break into that spontaneous smile just because. That grief brings me to my knees, with big gut wrenching sobs, makeup running down my face and unable to catch my breath.

When I was pregnant with Connor all I wanted was a girl, one of each. I knew from the first ultrasound that wasn’t happening. Once he was born, he was “My Connor”, my baby, my mama’s boy and I wouldn’t have traded any of that. He was equal amounts of daredevil and snuggles. Playing sports, splashing in puddles, covered in mud, but wanting to sit on my lap and snuggle and have story time.

I fought him growing up, every step of the way, knowing once he was grown my baby time was gone. But keeping them little is fruitless, like trying to stop a moving train, or a rolling boulder. It just doesn’t work.

What I do know is I cherish every memory, whether they pop up on my Facebook Timeline, come up in a conversation, or are relayed to me by a friend. Those memories are my lifeline to him. My baby boy, the young man he became. My Connor in all his forms.

I can’t express how done I am. The pain in my right shoulder has become excruciating, doing simple things, like pulling my pants up, putting on a sweater, or reaching for something sends shooting and burning pain down my arm.

I have been playing phone tag with my PCP and an Ortho Group in Northampton. Today, while at the end of my rope, I called the Ortho group to find out what the hold up was on making an appointment. I refused to get off the phone until I got an answer, the answer I got was that their practice couldn’t help me, but at least it was an answer. Within a half an hour I had an appointment with another ortho group for tomorrow.

I tried the PCP office to get some pain relief, finally a call back yielded a prescription called into my pharmacy. But when I went to pick it up, they couldn’t fill it. Due to my insurance, they now require a prior authorization for a medication I have had before. I tried to call my insurance company, but due to the holiday (Columbus Day). Their phone lines are shut off.

After all of that, I sat in the car, with the music on loud and cried, big ugly tears running down my face, taking all my makeup with it. I cried for many reasons:

1. I will have to suffer through this pain for at least another night.

2. I am so frustrated with our Health Care System. We have gone from over medicating and causing this opioid issue, to not medicating at all, which solves nothing.

3. Health insurance companies making decisions doctors should make!!!

4. The pain in my heart, has now moved to my body parts and everything hurts.

I don’t want everything in my life to revolve around the loss of Connor, but as I get closer to the year anniversary. Everything is a trigger, the pain in my shoulder, the fact I can’t find an ingredient to go in my breakfast smoothie. The littlest thing sends me into huge racking sobs.

I hope that as time goes on it won’t always be like this, but all I can do it wade through the grief and take it one day, hour and minute at a time. Knowing that I will have to learn to live without him. I will never forget him, you never forget the ones you love, and you never forget your children. I just want to learn to live without the terrible pain, and replace it with all the love I have for him instead.

I am just past the 10 month mark, 10 months of this emotional roller coaster. Of horrific days, days that aren’t so bad, and days that I never knew I had this many tears in me to cry. Yet there are days I have laughed, laughed at the memories that he left behind. His silliness and the fact he had no sense of direction, he could get lost in a wet paper bag. I have been amazed at the caring, kind and romantic young man that it became evident that I raised. He had a long and productive life left in front of him, to show the world how it was done. I will never know or understand why that time was cut short, because there is no good reason for it.

I have formed stronger bonds with some of his friends parents. Letting me in on a part of his world that he kept hidden from his mom. Learning that he was a strong, committed and driven young man. He didn’t suffer fools well, he worked hard and expected those around him to as well. We held him to a high standard, and as a result he held his friends, teachers and co-workers to a high standard.

Do it right the first time, don’t mess around, and don’t take advantage of a situation to get ahead. He flourished in a stressful atmosphere and a time crunch. Much like me, he learned well on “the fly” and didn’t need much of a learning curve to figure things out. He and I can both thank my Dad for that, no learning curve in The Whalen household, you learned to do it right the first time!!

What I have learned in these last 10 months is this…

1. Hold the ones you love tight, and make sure they know how much you love them.

2. Apologize often and sincerely. Forgive yourself the most, there was nothing you could have done to prevent this awful loss.

3. Don’t hold a grudge, there is nothing in this life worth a grudge

4. There is nothing worse than the loss of a child, it will break your heart in ways that you didn’t know possible.

5. Yet you will learn to embrace the new normal. Not that you want to, but you will be forced to.

6. This doesn’t mean you are moving on, or by any means forgetting your child. It just means you are trying to live.

7. You will never forget, time will never heal this wound. You will just learn to play the hand you were dealt.

8. Let your friends and your family in, don’t lock everyone out. You are not an island, and locking yourself away won’t help anyone or anything.

9. Do what works for you, visit the cemetery or not. Find a place to talk to them that works for you. For me it is the Little League Baseball Field where he grew up playing the game that he loved.

10. Take each day as it comes, I was always a planner. I still plan, but not to the extent I used to.

But most of all breathe. In and out, one at a time. Someday it will be ok, I don’t know when that day is, I know it isn’t today, but someday it will be.

Sitting with Mark around the fire pit tonight and reflecting on everything, even though I tried to hold them back the tears began to flow. Connor was my “fire bug”. He loved to light sticks and wood on fire. He was forever asking if we could have a fire, so he could burn the marshmallows so they were not edible and then end up feeding them to Cooper.

All those memories came flooding back, they couldn’t have been clearer if Connor was right there in front of me. Rolling on the grass, tussling with the dog and laughing like only he can.

I have been told many times that I am not even a year into this tragedy and I am doing better than people thought. What I do know is that as we creep closer and closer to the year mark I feel like I am falling farther and farther down the rabbit hole.

Last year when the holidays rolled around I was numb, I went through the motions, doing what needed to be done. But not really knowing what I was doing. Numb will not be the emotion this year, I will feel everything, and of that I am afraid.

My heart feels a lot like the fire pit as it burned down. Full of pain, and the burning feeling that there is a huge hole in my heart and soul. The knowledge that losing a child makes you a different person, a person who has to put one foot in front of the other and learn to take the emotions as they come. That is not something that I’ve ever been good at. I’m a planner and I want things to run smoothly and according to plan. Grief takes planning out of the equation, because there are just days that no matter how much I’ve planned, my heart says “Nope we aren’t doing that today, and the tears take over.” So instead now I will plan for these emotional roadblocks and land mines. Secure in the knowledge that whatever comes my way I can handle it, the burning pit of grief will not consume me. It may lick at the tender parts, but I will keep the flames at bay.

My family has known tremendous loss, there is no manual for what we have been through. And as I have said before, if there was one I wouldn’t have read it, because I was stubborn and even a little too cocky to think that it wouldn’t happen to me.

On the flip side we have been showered with overwhelming love and friendship. That love and friendship will never bring Connor back, but it truly reminds me that to fully live in this world it takes a village. None of us are an island, nor should we be. Human beings are social creatures, we are meant to lean on each other, help each other through through the rough times, and rejoice in the good times.

My village is amazing, they have held Dodge Ball Games, thrown a benefit/Birthday Party for Kyle and I. Followed me through FCTS baseball season, awards night, graduation, the dedication of the FCTS Football Stadium Lights. My village has traveled with me through good, bad and ugly, handed me tissues and held me while I cried.

The quiet behind the scenes village of my neighborhood built us a gorgeous outdoor living space with a fire pit, chairs, solar lights and flowers. A place where we can sit, reflect, toast marshmallows and remember all of Connor’s outdoor antics.

He was my fire bug, lighting the dead leaves and grass on fire. Rolling around with Cooper and being silly. When we lit of fireworks he was always the one who wanted to light them, and then run.

These memories will always make me smile, right now they make the tears flow too. But that’s what love is. Memories that leak out your eyes and down your cheeks. I wouldn’t change any of those memories for anything, I would do anything, or give anything to have him back. But no matter how hard I try it just wont happen. So I will cherish the memories I have and know that Love is what you make it and who you fill your life with.

Right from day 1 if you asked me how I was, or how Connor was (when we were still in the PICU.) I told you, I didn’t sugar coat it, I wasn’t rude, but I didn’t give anyone any false hope. I would tell you, “today is a good day, or we are stable, or today is a bad day and I am worried.”

Once our lives no longer revolved around the PICU and we were back home. I maintained my stoic attitude on the outside. On the inside I was crumbling, arranging a wake and funeral for Connor just about broke me. It made it so real, having to go to the Church and figure out where he would be buried brought a flood of tears when I didn’t think I had anymore.

If you ask me how I am I will tell you, “I’m having a rough day, and I don’t know why, or I have been crying for 2 days straight and I haven’t bothered to put makeup on.” On my good days I will tell you about those too “today is good, I’m hanging in there and I’m doing good.”

I learned early on if I wasn’t honest with people I wouldn’t get the support I needed, and there was no way I could go through this alone. By telling everyone I was fine I would be pushing them farther away and that was not something I wanted.

My dear friends have been the best of all worlds, holding me while I cried, giving me the space I need, keeping me busy, yet not crowding me. They truly are the flowers that grow in my garden of life, and I could not do this without them❤️💐.

Therapy is never easy, it always tugs at my heart and drags things to the surface that I would prefer stay buried. Today was a particularly rough session. I know intellectually that I made the right decision to remove the tubes and let Connor go. But intellectually and what my heart feels are 2 completely different things. My heart still isn’t reconciled to that fact, my heart still thinks that I failed Connor. That by not holding on for longer, by not fighting even harder for him, I took the easy way out.

I know that nothing about this was easy, it was heart wrenching and miserable. It was the decision that no parent should have to make. That is what I believe makes me question everything. To lose a child is a pain that never goes away, to be the one that made the decision to let your child go is a whole different kind of pain. As a Mom, you carry a child for 9 months and then nurture, love and raise them after that. It isn’t natural to end that nurturing by choice. Although this wasn’t a choice, it was a decision led by medical know how, second and third opinions and the knowledge that Connor would never be him again. Even having all that knowledge, doesn’t make my heart feel any better, it doesn’t soothe my wounded soul. As odd or crazy as it sounds it can make my heart and soul feel even more shattered, it pulls them in opposite directions, between the knowing and the what if.

Nothing about losing a child is easy, it doesn’t get easier after almost 10 months. I don’t know if after 10 years that will change, what I do know is that my heart n soul cry out for Connor on a daily basis, I try to answer them the best I can, but I never knew I had so many tears to cry😢

Last night was the culmination of years of hard work. FCTS now has a lighted Football Field. Connor and his fellow Electrical Shop students worked putting in those lights. Running the conduit and everything else necessary to for Tech to be able play under Friday night lights.

Unfortunately Connor wasn’t here to see them to fruition. But all the people who love him, and have supported me were there. There as Superintendent Rick Martin said “Connor will live on through those lights, and that every time we turn these lights on we will honor Connor.” My heart broke a little bit, but swelled with pride and honor all at the same time. Pride and honor because of the exceptional young man I raised. Broken because he wasn’t here to witness the fruits of his labor, because his was a life cut way too short.

Connor didn’t play Football at Tech, but he played Suburban Football and Middle School Football at Mohawk, much to the chagrin of this nervous Mom. I spent many nervous games watching through fingers over my eyes. He got bumped and bruised. Never seriously hurt. But I was glad when he chose not to play at Tech.

Instead he chose to follow his passion, Baseball and Electrical. There is no way I could be any prouder of him. It goes without saying that I wake up every morning wishing that this was a bad dream, realizing that it isn’t and there isn’t a damn thing that I can do about it. But hold onto all the memories and all the honors bestowed upon Connor and all of us.