Mummy is sitting here replaying over the day the lady came from the hospice came, I remember the conversations so clearly. I wish we'd never needed those conversations. Mummy is going to blog this, see if it helps this morning.
Mummy and Daddy had our meeting with the Doctors on the Wednesday. The day they told us that they couldn't help you. That day they told us that we would need to start thinking about making decisions for you.
We didn't want to make decisions for you, who were we to decide whether you stayed with us or had to go. We struggled with that decision, anyone would.
The doctor suggested that we met someone from a hospice. She felt it would help us to make up our minds for you, to make things gentler on you. We agreed to meet her.
It was arranged for her to come the next day. The day of your Christening.
The Chaplain came early in the morning on the Thursday to Christen you. Mummy and Daddy were both relieved to see Alastair, because he wasn't sure if he would have been on duty to hold your Christening service, he wasn't sure if it would be the other Chaplain who covers his holidays. But Alastair came. We were glad it was him. Alastair had spent quite a lot of time in the room with you and Mummy, and he had met Daddy. He had offered his services and support the week before. At that time we didn't think we needed his services and support, but we took a flier of him anyway. We ended up calling Alastair quite a few times. We did need his services and support in the end. He was so kind, he understood. Mummy and Daddy think the Angels sent us Alastair to help us, because he really did help us.
We got you Christened in the room, just you, Mummy and Daddy. Even your nurse left the room to let us have your service in privacy. She watched your monitors from the window next to the door,
You wore the beautiful Christening Robe that was part of Mummy's family, and you looked peaceful and content. You were Christened. We were glad you were Christened because although all babies go to heaven, we needed to know that you definitely would. You were such a gentle and kind boy, we needed to know that the angels would be looking after you.
Later that day, the lady arrived from the hospice. We didn't leave your room when we chatted. Mummy and Daddy felt you needed to be there and taking part in our conversations, you needed to know what was going on, we couldn't make any decisions without you. The lady from the hospice and the doctor asked if we were sure, wouldn't we prefer to go somewhere else. Mummy and Daddy were definite. Any decisions that were to be made, we needed to have you there. This was about you. Not about us.
The doctor sat on the floor beside Mummy in your hospital room and the lady from the hospice sat in a chair facing us. Daddy was sitting on the floor beside Mummy. You were in your special cot, you were sleepy, but I knew you'd be listening.
The lady from the hospice spoke about their service. She was a nice lady, very gentle looking, small, and had glasses on. I can't remember her name. She told Mummy and Daddy that they had a room for us all there. She told us that we could leave that day, or the next day, she wouldn't rush us, but she wanted us to know that we could go. It was on offer. We could have a family room, with a cot, and we could take your pram along too. We could take your bedding if we wanted to, and your toys. Anything that we wanted to take for you we could. We could have some family time.
This idea appealed to Mummy and Daddy because we hadn't had you on our own for very long. We shared the same idea that time just for the three of us would be so precious. We listened more.
We could have you transported over in an ambulance and pod. That wouldn't be too dangerous for you because you were already ventilated, all they would need to do is sedate you so you didn't become distressed on the journey. It wasn't far away. The doctor at the hospital said she would arrange transport to get Mummy and Daddy and all your things over to the hospice, we wouldn't need to worry about that.
The idea sounded appealing, it sounded perfect for us. Time as a family. We wanted to know more though.
Daddy asked what would happen with your monitoring at the hospice, did they have nurses? would we still have an appointed member of staff to look after you?
This was where everything turned upside down Haydon, because this was when the lady from the hospice said they had a 'No Ventilation Policy'.
Mummy and Daddy looked at each other while the words sunk in. You wouldn't manage without ventilation. You would be going there to die. We cried.
The lady from the hospice told us that you would be allowed ventilation for an hour after your arrival, to settle you. You would be given medications to make you relaxed and not frightened or panicked. We would be with you all the time, and when you decided it was time to leave us, then you could go. The lady from the hospice said you may last a day or two. Mummy and Daddy knew different. We knew everything that you were coping with. You would be lucky to last an hour without support.
Mummy and Daddy shared the same thoughts Haydon. We couldn't take you to a place that you didn't know, to just remove all your tubes and wait. We couldn't do that to you. Your hospital room was bare and it was quiet and sometimes gloomy, but it was all you knew. All we knew. We couldn't let you go in a place that you wouldn't know, with staff you didn't know. A rushed ending, after a very long struggle. No. We couldn't do that. No. That wasn't fair for you.
The lady from the hospice told us we could bath you, and walk you in your pram around the garden, we could dress in you in your favourite clothes, we could make memories and take your hand prints, and do lots of things with you until we needed to let you go.
No. We refused to take you along to somewhere and to disturb you so much, even if you had already flown away by then, we felt it was wrong, it was too intrusive. We wanted to see the sunshine on your face, but we wanted to see it when you were still with us. We wanted to bath you again, but we wanted it for when you could enjoy the splashes.
We couldn't take you to a strange place, and wait for you to go. Then walk around with you in your pram like you were still with us. Bath you like you were still with us. Dress you like you were still with us. Sing to you like you were still with us.
No. That didn't feel right for us.
Mummy and Daddy both said we wanted you to make that decision for yourself. We couldn't. We knew that you would tell us when you had to go. We knew that for us as a family, going to the hospice wasn't a choice for us. It didn't feel right for us.
We didn't want to make any forced decisions for you, this had to be your choice, you would know when it was time. We were sure of that.
We are still sure of that decision we made Haydon ,although it had to be thought over a lot. It needed to be right for you. It may be the right choice for some families, but it wasn't for us. Mummy and Daddy don't judge anyone who has made this choice, because this is the hardest thing in the world to make decisions about. Families need to do what is right for them, what they can cope with, what they feel is best for their child. We wish that we had never needed to make decisions for you like this. We wish noone needed to make decisions like this. How can any parent decide what is the best way, and best time, to let their child go? These are questions that are cruel to ask. These are questions that are heartbreaking, and sore.
We wanted you with us for as long as we could have you, until you decided it was time. We wouldn't have been able to live with that decision Haydon, we couldn't have taken you there and rushed the end for you. Every moment with you was precious.
Mummy and Daddy still feel that this was the right decision for you Haydon. Because you did tell us, we knew you would. And we did listen to you when you told us, as hard as that day was for us all.
Mummy and Daddy love you with all of our hearts baby boy. We just do. With every single cell in our bodies, all of our hearts and all of our souls. We miss you. We just do. We will forever.
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