On the outside looking in

You know the movie scene. It’s a cold night. It’s usually snowing, possibly Christmas. There’s a lone person standing outside looking in through a window. They are looking at a family by the fire having fun and laughing. I’ve felt like this over the last two years, like I’m on the outside of it all looking in.

Usually, I’m an extrovert & enjoy spending time with others, but this has been a lonely time. Navigating that fine line between socialising & protection. Plans have often been cancelled due to a friend or their child coming down with a virus on the day we hoped to meet. Baby classes become challenging as you can’t check beforehand if anyone is ill that day.

Having a baby with a congenital heart defect who is waiting for surgery means you have to take precautions. We began doing so when I was pregnant & have continued to do so. You can’t take risks with your child’s health & ultimately their life. Even a simple cold could put him back into intensive care. Fortunately, our son has avoided anything serious, but he remains vulnerable until the next surgery.

Sometimes the worry & anxiety is too much so it’s easier to not make plans but then you see everyone around you living, doing, and you think “oh I would have liked to have done that or been there” but eventually the invitations stop coming anyway.

Maybe everyone thinks you’re fine because you usually look fine when they see you or on that last photo you shared on social media. Or they think you are strong & just cope with everything so well. When the truth is, you’re not fine, and you have no choice but to be strong.

My son’s health comes first. His condition is life-threatening. Without the surgeries, who knows what would happen? We don’t ever want to mention the unspeakable fear. People may think you are being negative, depressing even.

The truth is, that fear keeps me awake at night. It is intrusive at the most random moment. Something can trigger me & tears sting my eyes. Being sat in the presence of others can make that a bit awkward, so it’s easier to hide away. The longer you hide away, the further you get from people’s minds. Out of sight, out of mind.

You feel forgotten about. You feel like that person looking in through the window at everyone else having fun & laughing. On the outside of life looking in. It’s a very lonely place to be.

As I write we are waiting to hear from the hospital. The waiting is hard. The cardiologist had said in December that the surgery may take place in March. It’s mid-March, and we have no update. People say, “No news is good news.” Well, not really. Without surgery, our son is vulnerable. His oxygen saturation levels are at 77%. A healthy baby would be 95-100%. So the longer we wait, the longer we have to stay in this place, and honestly, the waiting, the unknowing adds to the trauma.

You can’t really live life in its fullest, making plans because when that date comes, you have to take it.

I’m receiving counselling for PTSD. I’ve recently changed from CBT to a talking therapy because I just need to talk and to be listened to. I need to get those fears & worries out of my head, speak them out in a place where I won’t be judged or seen as being negative. Because believe me, I’ve heard the “don’t think like that” comments & “be positive”.

Well, you try to think like that when it’s your child going through this and then get back to me. Because unless you’ve been through this, you have no idea of the weight, no idea of the anxiety you have to mask every day.

The counsellor noted that I sounded angry in our first session. And to be honest, at times, I feel very frustrated with those who don’t allow us to feel or express ourselves. Who tell us how we should be responding. Or don’t seem to understand the severity of what we are dealing with. CHD can be life-threatening & is a life-long thing to deal with. It will never go away or be completely fixed. Our son will have cardiology checks for the rest of his life, and it may take us many years to really process and come to terms with it all.

I share all this because I’ve said I’m going to be honest on this journey. It may let others know that their feelings are valid, it’s OK to not be ok. I encourage you to find those few who allow you to not be ok. Who sit with you instead of trying to drag you to a place you aren’t ready to go.

If you have people in your life who are going through something similar, I encourage you not to forget about them. Check in on them. Invite them, even if they say no every time, please still invite them. Offer to do something specific for them instead of saying “let me know if I can do anything” because for me, I don’t even know what I need sometimes let alone being able to verbalise it. But if you told me you would like to make me dinner on Thursday or you would like to pick the kids up on a set day for a couple of hours or you wanted to clean my house (imagine!) Those specific things are much easier for me to accept.

Trauma, stress, and loneliness all affect our brain. It becomes difficult to process things as you normally would. We have a window of tolerance when things happen to us, good & bad. When you have PTSD, your window of tolerance is narrower & if your emotions go outside of that window, you can feel emotionally overwhelmed, anxious, fearful, angry, disconnected, and restless to name a few. So it’s honestly not that I’m trying to be difficult, but I’m truly not the same person I was before this.

There is a part of me that grieves for a life I once had, the freedom I had, the confidence I had, but my son is the priority. I wouldn’t choose this life, and I dont want to feel the way I do. He’s an amazing blessing & I would do anything to take this from him. And if it means I have to sacrifice things for him, then I will do that 1000 times over.

This post ended up being more emotional than I originally intended, but I’m not sorry about that or embarrassed. One thing I am is real. I’m human. I feel.

My faith in God remains strong, and that gives me strength, that gives me hope. That’s what keeps me going. This situation has built depth to my relationship with God, it goes deeper than you can imagine. He’s my shelter and my refuge.