Yesterday, I forced myself to go out. It was pay day & I decided to start by taking my little Champ for breakfast ❤️ Going out isn’t something I find easy at the moment, especially on my own. So it was a simple activity for some, but it took great effort for me.

There are days when this heavy pressure comes, it starts on my head, then works its way down my neck to my shoulders, then my chest, and it’s like I can’t breathe. I have to sit down because it’s pushing on me. My eyes feel heavy, and sitting down turns into needing to lie down. Sometimes, I end up falling asleep because it’s that heavy I can’t keep my eyes open.

This isn’t everday, but when those times come, I become no good to anyone. My husband or my children.

When things in life feel out of control, I often find myself cleaning or sorting. Putting what I can in to order. Things being out of place physically hurts my brain. Tidy house, tidy mind is the saying! It kind of grounds me, which is helpful when dealing with trauma, and keeps me at home, safe and controlling what I can.

Life has felt out of control since finding out I was going to be the parent of a child with a congenital heart defect. Any plans I had about my pregnancy or birth went out of the window and became led by health professionals.

For the last 18 months, we’ve been waiting for a 2nd open heart surgery. The timeline keeps moving. We even had a date. The 16th October for it to get cancelled 4 days before due to an emergency that came in.

I’m not sure which is harder – waiting or everything being out of control. But I do know that the two together are weighing heavy on me. Like literally.

We can’t make simple decisions for our family without considering our sons heart. Every little thing we do is weighed against the risks to our little ones’ vulnerable heart.

Our little one, who I pray every day, will live a long abundant life. Living with the risk of your child not living is our reality. Every day, it’s there, in the back of your mind, no matter how much we try to ignore it.

Life & death situations change you. This fire has refined me. It has changed me. I am not the same person I was 3 years ago.

I know the evil in this world would love me to curse God and die! But that’s not going to happen. This is a spiritual battle, and I will continue to tell all of my God!

God brings stability and order that makes me feel safe. We are living in a little bubble at the moment, tentatively stepping out every now and then. I am praying that we can make it to the other side of this time in limbo and isolation.

During prayer the other day, a song popped into my mind. In the words of Daniel Bedingfield

🎶 Give me just a second, and I’ll be all right
Surely, one more moment couldn’t break my heart
Give me ’til tomorrow then I’ll be okay

I just gotta get through this
God, God gotta help me get through this
I just gotta get through this
I just gotta get through this 🎶

And celebrating the small things, like taking my little Champ for breakfast ❤️