To be sad at other people's lives and children

[TheBuffster]

I am so sad. I have lost everything. I had a loving husband and a baby on the way, a secure job and supportive family.
Husband and I made some mistakes during labour and now ds is on the path to having cerebral palsy diagnosed.
My relationship with DH is in tatters. I can't stop thinking about the birth. I resent my friend's with all their pregnancy and happy families. My family are strained because of my depression and ds doesn't sleep.

I think it sounds like you’re grieving, coupled with guilt and self blame. I have a daughter born with a physical disability. She’s 3 in a week. We found out at 12 week scan and it was so hard. All I saw everywhere was babies and children with no disability. Like a constant reminder of what we wouldn’t have. What really helped was connecting with parents with kids with a similar condition.

Have you let the hypnobirth people know. I also did hypnobirth with my first child. Some of the advice was terrible, particularly around skin to skin. I was told that if you don’t have skin to skin then the ‘glue’ between me and my baby would dry and we wouldn’t bond. Trouble was, my baby was prem so he was whisked away as soon as he was born. The hypnobirth advice made that aspect much more traumatic.

Could you also ask for a birth debrief?

I can't bear to talk to the hypnobirth practitioner about it as I feel she'd feel I was blaming her. It's a bad enough weight for me to deal with.
I did the NHS afterbirth thoughts but it didn't help. They hadn't recorded key things like DH and I left alone for hours on end due to an emergency elsewhere.

Oh OP if this helps at all seventeen years ago I had polyhydraminos, my waters went the day after I was due but it was hospital policy not to induce until after 48 hours. So in a different time and place your choice would have been hospital policy. Don't blame yourself.

That’s rubbish that the midwives didn’t record info that they should have done.

It took me over two years to contact the hypnobirthing people about the impact that they had on me. And then it was over by email, I couldn’t face doing it on the phone. Their response was pretty shit tbh.

Would it help you to know if the CP is as a result of the delay in induction? Or the untreated jaundice? Or none of those things. I guess what I’m getting at is, how would that info serve you?

I am another one who has a DS with CP. He is now 10. I love him to bits (even today, mid lockdown). I remember some of the other posters as they first posted with their stories and their fears as they were warned about what might come, coupled with the we don't know. And largely it is the we don't know that is the hardest to hear, but sadly true, they don't.

My son is in moderately affected. He will always use a wheelchair. That is worse than the prognosis we were given for the first 2/3 years. Telling you it will be ok isn't always the right thing to do. It might not be.

The wheelchair is a pain, but a pain for me not him. For him it's freedom (from me!) it's how he gets about without me.

I am not going to pretend life is easy, or that I don't still feel envy of friends with "normal" children. It also made baby groups impossible, I walked out of one when a midwife said whatever you are going through someone else will be feeling the same thing. I don't think so ! I did not fit special needs groups either. In the end I went back to work and that was the best thing for me. It stopped me worrying.

Take every bit of help offered. It is helps great. If not don't do it twice. And that should be help for you and your DH as well as your baby. If someone asks what they can do let them do something. I never loved my own mother as much as the day she let herself into my house (she has a key) and cleaned up the baby sick over the floor without even asking, so I could deal with my son.

Take portage/physio/ot and if you need them antidepressants for you.

Take time with your husband. He is grieving too. Families of disabled children have shocking divorce statistics but those who stay together are usually stronger. Talk to each other even if it hurts.

If you think the hospital was at fault talk to a lawyer. I didn't think they were in my case, but you need to work out what you think before you can learn to live with it. And if they were at fault take action because it is expensive having a disabled child (sorry but it really is!)

When they first mentioned CP to me I was in shock, then grieving. I spent years trying to make my son fit in and get him to walk. For years that was the goal, but now that he is older I have realised that it doesn't matter. (See my comment about wheelchairs above).

If Facebook doesn't help stay off it. You wouldn't know my son was disabled on my Facebook account, I have never said. Not because I am hiding it but because that is not what I use Facebook for. You'd know if you follow me on Twitter though.

There isn't a right way to respond, a right thing to feel or to think. We all find our own way. It takes time and it is ok to not be ok about this. You just have to hope that one day you will be more ok.

I should add that my son is fabulous, disabled but fabulous. I still wish he wasn't disabled, but he has done things I don't think he would have done if he wasn't. He rides a horse well, swims and is aiming for the Paralympics. He can't write well, but can read well but slowly. That took forever to get to. He has a real mix of friends, but is not as easy to include as ordinary children. But his friends do include him, then it is my job to make inclusion work.

The biggest difficulty for me as a parent to disabled children is the lack of knowledge of what’s to come, especially with conditions that can vary from mild to severe.

Completely agree with this. And would add that with CP, much of what you will find on the internet is focused on the severe end.