yoocan - Samantha Isaacs - The Thing We Cannot See

The Thing We Cannot See

Rare Disease & Syndrome

Samantha Isaacs

From the beginning

There is a thing that I don't talk about much in my life with Hank. It's invisible, much like this disgusting virus that robbed us. It's on the inside of the mothers who live in the aftermath of Congenital Cytomegalovirus, and very likely any mother facing a life altering diagnosis with their child. It's guilt and disgust and shame and fear and pain and anguish. We feel responsible somehow. We lay this incredible burden of responsibility upon our shoulders for a thing we didn't know existed until it was too late. We blame ourselves for something we didn't know about until it was too late to be educated. We are ashamed that we didn't do the one thing we were meant to do, protect our unborn baby. We fear that we are judged by our family and friends for the outcome that we couldn't control. Like we chose this and went out of our way to contract CMV. And the pain of failing our baby... the anguish of what their lives or loss of their life means... There is no word for the way you feel. It is all consuming. It's exhausting. We cry in the shower, our bodies racked with pain and anguish, the tears falling silently in bed where we can't sleep because the reality is still better than the nightmares that come.

Yet, it is masked by smiles and sunshine.

Our dreams are shattered and smashed.

The truth is... we are wrought with emotion. Drained of joy. Robbed of motherhood dreams. It falls apart in the moment of a blood test. 3 letters have taken away everything one has hoped for in a life they prayed to create. There is no glory or strength in that. There is no making it better or easier. In that moment, the core of our being falls into an abyss of silence.

But.... From here, we heal.

It is a single traumatic moment and lifelong battle against the aftermath. We scream in silence as the tears come until our heads pound.
We shut out people who love us because we loved someone too and we ruined their lives.
We ache in a place that we can't put our finger on.
Until one day a sliver of light breaks in. It touches us and there is breath.

And from there.... From there we heal. It may have taken us a few short weeks or maybe a few months to get there. For some of us, it could take the better part of a year or more.

Healing isn't the same for everyone. There is no cookie-cutter pattern we can follow. No guidelines or rules or time table. It hurts one day and the next it's a little less. We can stand up eventually. We find the power to look this monster in the face and say "Not today. You can't take me too."

Someone who loves us, hugs us and we hang on a little longer than we used to because we feel it again. We are finally ready to let the cape of our self-blame and regret fall from our shoulders. The grief is over.

We are angry still, but not at ourselves. Now we feel justified to be angry at the virus that no one talks about. Angry at the lack of prenatal education we received. Angry at the stigma that we can't talk about our mental health.

Depression rolls in and out like summer thunderstorms. Anxiety tags along sometimes.

The time has come though and we've made peace with our hand. This is our lot and that's okay now.
It's time to heal. It's time to let the warm sunshine in through the broken pieces of our lives. It melts the ice and brings in fresh air.

Moving Forward

We are healing now. It doesn't mean that life resumes as normal. It means that we are adjusting to the new life. The alterations that need to be made. We've been traumatized and have to handle the things that set off a familiar wave of panic.
It is truly Post-Traumatic. There are triggers and things we can't do the way we used to.

We might not hug and kiss on your babies, that needs to be okay with you. We lost something precious. We ache for what you have. We don't regret our children but you have what we had hoped to get. It's a confusing place to live in.

We might not come to birthday parties for awhile, it reminds us of a party we won't have. We might not have them because our angel has gone on without us. We might not have them because our child doesn't know what it means. Maybe they are immuno-compromised. Maybe there is medical fragility. Maybe...

Maybe we miss a few years of family photos in Christmas cards, someone is missing. The braces and machines and wheelchair is hard to look at.

We are doing the best with what we have. It may have happened overnight but the healing will take much much longer than that.

Maternal Mental Health is not to be taken lightly.

If you know a mother who experienced loss, sickness, chronic illness, life-altering diagnosis... know her heart is hurt. It hurt then, it hurts now, it will hurt for a very long time. She may be smiling, now, but she had to heal to get here. Love on her today. Let her know that she matters. Bring her to me and I will tell her. Light and Love,

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