Living with the fear of losing a child: thoughts from the other side

One of my favourite quotes as a heart parent was this one: “Having a child with a life-threatening condition changes you. It brings out strength in you that you never knew you had, it makes you appreciate the little things in life, it makes you fear that every memory you make together may be your last, and it teaches you that miracles do happen.” (author unknown).

 

Jessica was, and still is, our little miracle. She battled through several heart surgeries and overcame the odds to grow and thrive. We always knew though that her time with us could be short and the fear of losing her was always there at the back of our minds:

 

Me cuddling a sleeping Jessica - "Living with the fear of losing a child: thoughts from the other side"

 

“There is a fear that lurks at the back of my mind. Most days I can push it away, almost forget about it, but every so often, something will bring it back into sharp focus.”

 

“It is something that I try not to think about if I can help it. Sometimes though, the fear of what the future may hold threatens to overwhelm me. These are the moments when all I want to do is stop time from passing by. Wanting to hold the here and now close, to make it last as long as possible. I cannot stop time, I cannot change what the future holds, but I can have hope, and faith, and make the most of today.”

 

Last April, our worst fear happened when Jessica unexpectedly collapsed and died. All of a sudden, we were thrust into a new life on the other side of life with Jessica; life as bereaved parents. The life we had feared we would live had arrived.

 

One of the things that I have had said to me as a bereaved parent is: “at least you were prepared for the fact that you could lose her.”​

 

Yes, I knew that we could lose her. But nothing prepared me for the reality of losing her. Nothing could have ever prepared me for the reality of losing her. Unless you are living this life, you cannot imagine how hard it is to wake up every single morning and to have to live every single day without a child that you love more than life itself. To have the days, months and years stretching out before you – all of them with a huge part of you missing. Every morning I wake up and every morning Jessica is still dead. Every morning I face the reality that I cannot see her, hold her, hear her – outside of photos, videos and dreams.

 

Nothing could have prepared me for this life. Living with the fear of losing her did not make losing her easier to bear.

 

But it did do one thing: it made me appreciate the time I had with her.

 

Me and Jessica on a tube train

 

It made me want to fill the time we had; to make memories; to capture as much as I could by taking photos, videos, writing down our memories. It made me hold her that little bit closer, love her that little bit harder because I wanted to cram as much love as I could into the time we had. There wasn’t a day when that little girl of mine wasn’t told how loved and precious she was.

 

Did I enjoy every moment? No. Did I make the most of each moment we had? No, of course not. I am human and parenting is challenging. Of course there were moments when I felt overwhelmed, stressed, cross, frustrated. Knowing how lucky I was didn’t change that. But I tried to make the most of the time we had; to treasure the moments where I could and not to be too hard on myself in the moments when life was tough.

 

Even now, living on the other side, I don’t always appreciate each moment with my children. I know how lucky I am to have them, but I still get stressed, overwhelmed, frustrated and cross. Parenting through grief is incredibly tough. I still live with that fear, because now I know it can happen to someone like me. That I cannot always protect my children; that life can change in an instant. Tomorrow is never promised.

 

And so each night, I will hold my children a little tighter and tell them how much I love them. I will give Jessica’s picture a kiss and tell her how much I love and miss her; how I wish she was still here with us.

 

Thomas and Sophie lying either side of Jessica's photo blanket

 

If I could go back to my pre-loss self living with that fear, what would I say? I would tell her this:

 

No amount of fear can prepare you for life on the other side.

Don’t let the fear of tomorrow rob today of its joy.

Embrace the moments, make the memories, take as many photos and videos as you can.

Don’t feel guilty about the moments you can’t enjoy – we all have those moments. Accept them, be kind to yourself and let them go.

Hold your child as tightly as you can and love them as hard as you can.

 

 

And if that day you fear comes, know that you can survive it. You will often feel like you can’t, and you don’t want to; but you will survive, as hard as it is.

Your love for your child will endure. It will be what keeps you going. They will never truly leave you, although they may feel so very far away at times.

You are not alone.

 

But in the meantime, hold on with all you can and treasure as many moments as possible. Feel the fear, yes, but use it to love and live life to the fullest.

 

A Blogging Good Time
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10 Comments

  1. February 13, 2019 / 2:42 pm

    What a beautiful post, Jessica is so loved. You and Jessica both inspire me every day to be a better parent and make the most of the time I have with my children. The memories you made with Jessica are so precious and I’m sure that Sophie will one day appreciate the way you helped her to make such amazing memories with her big sister too.
    Nat.x

    • Louise
      Author
      February 21, 2019 / 8:10 pm

      Thank you Nat. She inspired me so much and those memories are indeed very precious ones x

  2. February 13, 2019 / 2:52 pm

    What a beautiful and moving post. I felt your sadness, but I felt your joy too. You and Jessica are such an inspiration and she will never be forgotten. Thinking of you all. X

    • Louise
      Author
      February 21, 2019 / 8:10 pm

      Thank you Sarah. There was so much joy with Jessica – she really did radiate it x

  3. February 14, 2019 / 1:41 am

    Oh, what a beautiful love letter to your daughter. The picture of the 2 of you is precious! I am so sorry for your loss. Thank you for sharing this personal, raw post with us. Blessings to you and your children!

    • Louise
      Author
      February 21, 2019 / 8:11 pm

      Thank you Laurie. It is one of my favourite pictures – a very special memory of a “Mummy-Jessica day” we enjoyed together.

  4. February 14, 2019 / 11:36 am

    Oh Louise.
    Please know I think about you and your precious family a lot.
    What you say here is so true xxx

    • Louise
      Author
      February 21, 2019 / 8:11 pm

      Thank you so much Donna x

  5. February 18, 2019 / 10:45 pm

    It breaks my heart knowing that your reality is still one of my greatest fears. I wish it wasn’t the reality for you, I wish it wasn’t something that could ever happen to parents.

    I think about you all the time. Jessica will always be a huge inspiration to us.

    xxx

    • Louise
      Author
      February 21, 2019 / 8:16 pm

      Thank you Gemma. I hope that it will always be just your fear (and hopefully not too all-consuming) and never your reality. I wish it wasn’t the reality for anyone though – CHD can be so very cruel. It means a lot to know that Jessica is still thought of and is still an inspiration. Lots of love to you all xx

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