This post was inspired by a blog I read yesterday where a mum describes the final few days with her son before & after he passed to the other side. It made me think a lot about my final hours with Órla Rose, our last few conversations, the last food I shared with her and our last hugs & kisses. I can already tell by the excruciating pain in my heart and the tears flowing down my cheeks that this is going to be a difficult post to write and may take some time but my purpose in starting this blog was firstly as a tribute to my beautiful daughter so that all could share in her short life, secondly to help me grieve & cry and let out my emotions rather than holding everything in and thirdly to show other grieving parents how I’m coping and maybe just maybe they won’t feel so alone on this horrible road.
So I’ll begin by saying that this day was no different from the last few weeks, my little one had end stages of cystic fibrosis her poor lungs were saturated with mucus and infection.
Órla was a late diagnosis, she was diagnosed with autism when she was 4 and so any illness,any bug, any bowel problems were always related back to her autism so it was only when I took her to A+E that they started listening to me ( gps had her on ongoing anti biotics). The tests were done and the results were in and our little baba of 6 years & 10 months old was confirmed as having cf and unfortunately alot of damage was already done.
Fast forward almost 3 years exactly and Órla had not eaten in over 10 days and was on high doses of morphine and an oxygen machine was permantly on in the room (she refused to wear the mask or cannula). Her dad & I had decided to stop forcing treatment 4 months before this as her quality of life was now more important to us and I can honestly say she was her happiest in those final months since she got diagnosed & began treatment.
Her poor little body was just a bag of bones, she refused to wear clothes (one of her autism traits) so we watched how quickly devastating this disease is. I knew we were close to her end, she hardly spoke and was in and out of consciousness a lot of the time. Her consultant came to see us every few days and I had googled how long a child could survive without food (do u know it can take months in some children as their little hearts are so strong).
Her dad & I were not living together and I had a feeling that she could go at any time so I asked him to come stay at the house and take time off work. Saturday & Sunday passed and there was not much change. We took it in turns to sit with her as she watched television and then I slept on the couch at night. She was always sleepy but if you turned the tv off she would tell me to turn it back on.
She wanted me to stroke her legs as she loved massages but she said to “do it gently” as her legs were sore, I had noticed they were very swollen which I know is a sign the heart is struggling. She hadn’t been to the toilet in a few days and she went to get up to go but fell before she reached the door so I lifted her and it was at that moment I realised just how frail my daughter was, it was like lifting her as a baby. I knew time was running out so I carried her back to her bed and sat beside her holding her hand. She asked me to get her iPad but she only sat it beside her. A few hours into the night and she said she was hungry and wanted some cereal (again I now know this is not unusual in the final hours), she took a few bites then sat back to watch cartoons. I must have dosed off because she told me I was snoring and to stop it.
It was very difficult to watch her as she could not get comfortable and kept moving, her face was skeletal as was the rest of her little body I barely recognised her as my Órla. She tossed & turned another few hours and then it was Monday morning, time for my eldest daughter Zoëy to go to college. I explained to Órla that her dad would sit with her and I would be as quick as I could. She said she wanted to come with us but I said she wasn’t well enough but she didn’t want me to go so I got my ex to drop Zoëy instead.
Zoëy said goodbye to her sister and that she would see her later, little did we know that was the last time she was to see her alive. Zoëy found out the day before she was pregnant so she got to tell Órla she was going to be an aunty. Her response was “so what” but she had asked me later on what the baby would look like so I know she was taking it in.
The next two hours continued to be restless so I decided to give her some of the calming medication I had been given for her in the hope that she could get a few hours sleep. She took half of it but spilled the rest but it seemed to help and she held out her hands to me, I asked her what she wanted as my autistic daughter didn’t usually like hugs so she said “a hug of course” and I got one of the longest hugs I ever got from her so long that I said lets get you settled for a little sleep now. She seemed to drift off and I thought it was the ideal time for me to get a few hours sleep before the next night. I asked her dad to read her a story and not to leave her even for a second as she seemed so frail and I went out to the kitchen to call my mum and ask her to come over to help that evening.
Some time later I’m not sure how long but I think it was only minutes he came out of the room and said he thought she had gone, he’d heard a noise that he thought was her last breath. I ran in and went to feel her pulse but there was nothing. Her dad then started whaling out loud and I got really annoyed and told him to stop in case she could hear him and she was just sleeping, I also noticed he’d turned off the oxygen machine and I yelled at him again to turn it on what if she was still with us. Silly now I know but I was so angry with myself & him for choosing that time to leave the room so I wasn’t there when she needed me right at the end. I have since resigned myself that her big hug was her goodbye to me and that maybe she felt I couldn’t cope with hearing her last breath.