Reflections of a heart mummy: Living in limbo

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.


Jessica sitting and looking at a pond - "Reflections of a heart mummy: living in limbo"


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.


10 thoughts on “Reflections of a heart mummy: Living in limbo

  1. Gosh Louise, I can’t even begin to imagine what you’re going through. What a strong little girl Jessica is, you must be so proud of her. Thinking of you all.

  2. She is amazing Nat. I’m so proud of how well she copes with all this. Helps make it a little easier for me to be strong too x

  3. You have been and are in my thoughts. You are doing great to keep life running with all this on your mind. I agree with you that when you are worried the middle of the night is the worst!

  4. This must be so hard for you and your family – you’re doing well to keep positive and focusing on your daughter’s lack of fear. Waiting can be the hardest part. #ablogginggoodtime

  5. It must be so difficult to stay positive while you’re waiting – I know it’s in those quiet moments that I can’t help worrying about things. You should be so proud of Jessica, and of yourself too. I can’t give you any guarantees, I wish I could, but I do have faith that you’ll get through this and come out the other side smiling.

    1. Thank you Katy. I am proud of Jessica, she really does take things in her stride and seeing her response helps me be strong too x

  6. I totally get this….
    As much as I never wanted the phone call to come I hated being in limbo.
    I am sure Jessica will be fine….Just keep telling yourself the surgeons do this sort of thing every day. It’s routine to them.
    You are not alone….You have all of us to support you! Sending love and hugs xxxx

    1. Thank you Kim. That’s a good reminder about this being routine to the surgeons. Definitely need to remember this x

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