We’re in limbo at the moment. Waiting for a date for the next heart surgery. Unable to look ahead once again.
Waiting for a date is hard. But as hard as this is, the harder part is yet to come. Waiting for a date is far, far easier than that awful wait while my child is in theatre having surgery.
I am torn between wanting a date as soon as possible and wishing the phone call would never come. Wanting to hold on to normal life for as long as I possibly can. Wanting to hold on to every single little moment.
This surgery has to happen. My little girl’s long-term survival is dependent upon it. I try to focus on the positives. I try to stay strong, to be brave. Most of the time I think I succeed.
The effort to stay strong often leaves me feeling exhausted. Not just physically, but emotionally exhausted. Every now and then, I crumble. I cannot always be brave. I cannot always be strong. Sometimes the load feels just too much to bear.
I am scared.
I want someone to tell me that it is all going to be all right. That everything will be fine. And yet I know that no-one can tell me that. They can give me odds, statistics, percentages. Not assurances. Not guarantees. Just risks.
In the middle of the night, the thoughts and fears that I push aside in the day gain strength. They are so hard to push away. Somehow they seem more real in the darkness. Sleep becomes elusive. All I can feel, all I can see is that fear.
And then the daylight comes. With the light, some of my strength returns.
I tell myself that we will get through this. Somehow, we will find the strength. We have faith, we have love, we have prayers and support. We are not alone.
And then I look at my little girl. I see how she takes it all in her stride. I see her excitement at the prospect of a sleepover with the doctors.
She doesn’t know the risks. She doesn’t need to know the risks. To her this is a big adventure. The doctors are going to make her special heart better so she can run around more with her sister.
She has complete trust. I need to have trust too. Trust and faith.
I need to hold on to hope.
I will hold on to hope.