Strong as a MOTHER

*Trigger warning on this post- it is about Spencer's last day*

Today- March 29th 2020 marks 1yr since we said goodbye to Spencer. 1 Year.

March 29th 2019 is a day I wish I could walk away from. A day I wish did not exist in my world. That is the day we made the decision to let Spencer go.

It wasn't really our decision, he had made the decision for us in the days leading up to it, but it was time we stopped being selfish and made the decision to allow him to let go.

Allow him to make the decision he had clearly been letting us know he wanted to make.

That week, he started a fast and unstoppable decline on Tuesday. By that afternoon, he had already been essentially brought back more times in just a few hours than I thought possible.

That seemed to be all we were doing by the end.

Still, there is nothing worse in this world than telling a room full of people what you want them to do or not do in regards to another life. Especially that of a baby. Your baby.

Because all those decisions are on you. And this was not a case of simply turning a machine off. No. This was signing forms and telling people to not attempt to bring your son back to you, and at what point to stop things.

I had held him for hours every day since he was born, but in the days leading up to this, I had barely held him at all. With all the machines, and the need to get to him quickly, it was difficult to do so, and towards the end he had seemed pained when he was touched. Not comforted as he had been the first 5 weeks of his life.

But on this day, March 29th, 2019, I held him once more.

I took this picture maybe an hour before we said goodbye. I wanted something, anything to preserve those moments.

I held my son as he left this world.

Anyone who tells you it is peaceful- well, lucky them I guess. Though nothing about this is lucky.

I did not consider it peaceful. I considered it the worst moments of my life. I considered it unbearable heart-wrenching torture. I still do.

The team moved us to a private room, a section of the NICU devoid of other patients. Not needed at the time by anyone other than us.

By the time they had moved us Spencer was already declining. But, the team took a moment to unhook him from everything, give him meds to make him as comfortable as could be, and for the first time since he was born, we held our son without any wires or tubes.

Just Spencer.

My husband held him a bit and then handed him to me where I settled him on my chest. Laying on my chest was a position he had loved, but this time, I placed him there so I could comfort him and kiss the top of his head, without actually really seeing him. I wanted my last memories of seeing him to be as much of what he had been and as little of what he now was, as possible.

I wrapped him in one of his flannel blankets and I held him. It took around 15 minutes for him to pass.

It was hell. I wish with everything I had that I could forget those last moments.

When I held him, knowing it would be my last time, I stroked his back and sang to him and told him it was okay, that we loved him and we understood. 'You are my Sunshine' was sung on repeat to him.

Every few minutes a doctor would come in to check his pulse. A necessary movement that I hated with every fiber of my being. They would ask me to adjust him so they could listen from the front. Each time, I moved him in a way that kept him close, but concealed. I didn't want to see my son leaving us.

I thought my hardest moment in relation to my children would be when I first saw Kenzie after her open heart surgery. That should have been my hardest moment as a parent. But I wasn't that lucky.

I WISH for that moment now.

Instead I have a moment that makes that one look like a walk in the park. I will not go into detail, but it was not like the movies. It was not one quiet breathe and then a peaceful passing. It was pure hell.

I hate the memory I have, but I also cherish it. I didn't leave him alone or with a nurse, which would have been easier. I would have been able to hold onto my last memories as the ones I wanted, as the more peaceful ones. But, we couldn't do that to him.

He was our son, we were who he needed at the end, and we were there for him. His dad and I were there for him and I can always comfort myself with that part of things. I went through hell, I remember hell, but my hell was where he had felt at peace all those hours and days before, and I was going to make sure he knew he was safe and loved til the very end no matter how much those last moments destroyed me.

I was strong as a mother.

After he passed, we held each other and him a bit longer. Wishing him comfort and calm. Saying our goodbyes to someone we had so very recently said our first hellos to.

The nurse came and I placed Spencer on the bed, wrapped in his blanket. We placed a warm blanket over him, animals that had been with him from the beginning and we said goodbye. The team took over, making sure they could put together a small goodbye kit they do. Footprints, imprints, a lock of hair.

The first call I made was to my sister- she was the only immediate family who lived out of town and would need to travel. Also, she for some reason was who I needed to tell first.

The rest is a blur, a blur of telling people, of calls, of posts, of plans. The rest matters so little compared to the enormity of those moments we said goodbye.

It will forever be the day I had to be strong as a mother in ways I never even knew were possible. That day, and the next, when I had to wake up, remember it was real, and go on taking care of his big sister are days I will never understand how I survived. But we did.

One year later, we are still here, we are still standing. We honor Spencer as much as we can, we ensure he is around in his home, and with us. Kenzie and Peanut may never meet him, but they will always know of their brother and the world that he meant to us.

So today, I try to remember the good. The happy. The soft snuggles and his tiny hands wrapped around mine. The way he purred when his dad stroked his hair. The way he always wanted to snuggle deeper and be held tighter. Today, I remember the strength that day, one year ago took, but I hold onto the love I felt for all the days prior more.

43 days my boy. Never enough, but we know you are settled now, as the quilt in our hall, as the tree in our yard, as the blanket and night light on our dresser. You are here in beautiful, happy, calm, loving ways and that is what I hold to. That is what keeps me strong as a mother.

As we sit in this time of uncertainty now, I try to tell the son who has yet arrived that thing will be ok. I look to Spencer and ask him to look out for his baby brother. I tell the Universe to stop being an unfair b**ch. I tell Spencer we miss him, but are grateful he is not in this world that would have been so unsafe for him. I remind myself, I have already been through the greatest darkness and am still standing.

This is not how we expected the world to look 1 yr after Spencer left us, not at all, but all we can do is what we have been doing for a year now. Keep going, keep fighting, keep holding onto hope that things will get better, and be proud of everyday we make it through.

1 yr ago was the darkest day of my life, and while things still feel dark today, the world is now part of this fight to bring back the light, and maybe when they do, our light will be there waiting for us too.

Spencer my love, we miss you, but thank you for still feeling like you are always with us, and thank you for allowing us to be your family.

Love you,

Mom, Dad, Kenzie, Kooza and Peanut