Our middle child passed away

[SoManyQuestionsSoMuchSadness]

She would have been three last weekend but she died at the end of January. Instead of celebrating her birthday she was cremated the day before.

I cry on and off. I can act normal. I can smile and laugh and play for our two children 5 year old and a 9 month old. I miss her so much and it still doesn’t feel real.

I have so many questions.
Is our 5 year old okay? Will it hit him in a couple years when he can understand more? Will he remember her? Does he miss her? Will he want to talk about her? Is my crying affecting the 9 month old? Am I playing with him like before? Am I putting enough effort into him? Will I be a completely different parent? Will I just forever be pretending to be happy? Will the answers the doctors have be enough to stop me wondering and going over and over it in my head? Will I learn enough to answer any questions my children will have in the future? Will this take over our lives? How do I stop waiting for her to come back? What can I do to remember her that will be happy and not sad? What traditions won’t feel like a reminder that she’ll always be gone?

We’ve been referred for family counselling. We haven’t heard anything back from the post mortem yet, we know why she died she had a huge malignant sarcoma in her chest crushing everything, she only showed symptoms a week into January and then was dead at the end of it. She spent 5 days in hospital and was kept asleep for all but her first day. We have more questions we hope the post mortem can answer like what cancer was it why did it grow so fast etc etc. We also have a meeting with the hospital at some point

I’m just so sad, so so sad I don’t think I can even describe how I truly feel

How do you get through the bad days?

I'm so very very sorry op. What a bitch life is, so unfair. Are you ok, are you being supported, cared for, maybe some counselling when you feel ready?

God this is so hard. I just want my daughter back

We have the post mortem now the tumour was massive it totalled 20cm by 18cm by 10cm. We get a proper walk through all the findings in July

At some point last month all the shock and disbelief disappeared. I had processed everything I could and now there is just sadness which is so scary as I think this is how it’s going to be forever. I think it’s gotten easier and I feel less guilty living in the moment and having fun but I am always sad

We had our first proper holiday without her One she was meant to be on when we booked it. I had to really fight back tears on the trip to the airport and on the plane. It was so easy to imagine her there with us to see her happy and excited and following her newly walking brother around. It was so emotional coming home too, it really cemented that she would never be coming with us on any other holidays. I wasn’t alone though all my family have said they were really teary getting back home, it’s so lovely to hear. Sometimes you feel so alone and to hear that other people feel the same and understand brings you back

My counselling starts soon I hope we get on and I hope it helps

I still find it really hard to look at pictures and videos. I have a few I’ve saved as favourites that I know what’s in them and I can watch them when I need to see her but going through all my photos is too hard you don’t know what moments you’ll see and some of them are heartbreaking.

This doesn’t feel like my life any more, nothing like this is supposed to happen and I still haven’t worked out how to do this new life

My heart hurts for everyone who has lost a child

I am so so sorry. It must be unbelievably tough. Your little girl was so loved.

:(

I'm so incredibly sorry OP. Im sorry your little one had to leave the earth so soon. I hope you find some peace soon and cherish all the moments that she was with you. I'm sorry you and your family are going through this.

Oh it sounds terrible. Everything forever different to how it should have been. I think you are strong to go on holiday and provide some normalcy for your other children.
Please keep posting.One day at a time.

Sending strength to you and your family op. I'm so sorry for your pain x

I am so sorry for your heartbreaking pain, OP. X

We had our second pre planned holiday, we drove down to the south of France and it was with my partners family. I was so nervous, his family don’t acknowledge what happened, they very rarely mention Isabelle and if we do they don’t continue the conversation. We usually have a very big kick back after spending a long period of time with them. In reality spending the majority of two days in the back seat with our two boys helped me refocus on them so I didn’t need any acknowlegement. At the coffee morning I go to it was once said as parents you focus on your weaker or sick child the most until they’re stronger or better and in Isabelle’s case she didn’t get better so she didn’t lose our focus but I feel like this has help shift the boys back to the focus which I am so thankful for

With that loss of focus I also lost the desperation, the clawing need to bring her back somehow. To work out the perfect way it should have gone and then that would save her. But with that loss of desperation I feel guilty that I don’t feel as strongly as I did about her. You can’t win!

We had a talk through of her stay in PICU and of the post mortem. Isabelle had been born with an unknown tissue in her lungs there was a biopsy done at a year and a half which was inconclusive and then the decision was made to take a lobe July 23 this was tested and was found to have a kras mutation which is the part of dna that controls cells multiplication. I was told that she might have some problems with tumours in the future but it was still very positive not to go away thinking negatively.
In the post mortem they explained that she had precancerous cells which I assume is the same as saying kras mutation but in a more matter of fact way. They also said it was extremely rare and there is nothing really in the literature where someone has been born with precancerous cells so they didn’t really know what was going to happen. I don’t understand why it wasn’t explained to me (my partner couldn’t make it because of work and they didn’t offer to call and explain) like this right from the start then I would have had the ammo to take her in as soon as she didn’t recover from her cold.
They also said that all the parts of tissue had turned cancerous. I always assumed that it was just one section and that if she beat this there would be another section ready to turn cancerous. It makes me so sad as she could have had a chance if she had got to chemo at the right time. If they had caught it turning cancerous. But then I bring myself back to reality, cancer is such an individual thing and Isabelle didn’t have the best track record for doing things simply

Apart from that we are just taking each day. Keeping our children happy and in turn they make us happy. Appreciating having my eldest on holidays so we have him with us all the time. Dreading Halloween and her first anniversary but I’m going to try to put as many happy, positive things in place as I can to help when we get there

I can't imagine how hard it is but I'm glad you have been able to focus on your boys.

Glad to read you are enjoying the summer holidays with your eldest. I think you have to give yourself huge credit for how you are coping and shifting your focus and being able to cope with less than understanding family members.

I found the firsts hard. And every anniversary is hard but I remind myself that although it’s her birthday, date she went to hospital, date she died etc, nothing actually changes on those days. Its ok to fall apart then, but its also ok not to. I have taken the summer holidays off to spend time with my younger dc, but then all the anniversaries come in Nov, Dec, Jan and feb so I have mixed emotions deep down.

I’m 5 years into losing my dd and happy to chat if it’s helpful to you.

OP i’m crying reading your post. I send so so so kuch love for you. I’m so sorry OP. I cant imagine your feeling. It must be so painful. Hopefully you getting better OP.

I have nothing useful to say, but I wish so much more strength and love in your life. You’ve done so well to refocus.

Moving forward doesn’t mean you forget someone.

I wish I could give you a hug. You seem superhuman navigating such a hard time and still managing to see this life is joyous. It is, despite the hardships.

Your little girl will always be with you all. Wishing you all the comfort in her happy memories. 💕

Sending hugs and love💕