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.

This isn't your fault. Labour never has been, and never will be, an exact science, despite all the advances we've made over the years. You could have made an entirely different decision and had a worse outcome.

And, as other posters have said, CP is a very wide spectrum of a condition. I know a woman in her forties who has it, and lives a completely normal life, including competing at a high level in a very physical mainstream sport. Obviously, she is one end of that spectrum, and not everyone with the condition will be as little affected as she is, but her parents no doubt felt the same fear and distress that you are feeling now. I hope the test results give you some positive news.

Hi OP,
I’m so sorry you are going through this.
I have a seriously disabled little girl. She has a neurological condition but we knew there were problems after our 20 week scan, so we had time to prepare.
I’m telling you this to see if there’s any kind of assistance I can offer you.
Firstly, the Foetal Medicine Unit at UCLH where I had antenatal care made a referral to palliative care at Great Ormond Street (we were preparing for a dead child at birth or soon after).
They were fantastic and put us in touch with a local children’s hospice.
It turned out that my daughter’s condition is so unusual that it cannot be properly diagnosed yet, but she presents as if she had CP, so this is where I hope it’s helpful.
My DD had every single joint “contracted” ie stiff and unable to move. Every joint in her toes, fingers, wrists, elbows, knees, hips, jaw, neck, back etc. So she basically couldn’t move. She couldn’t eat (still can’t but getting closer).
If I tell you that, at age 3, we are getting her a specialist trike that she can go out and about with (funded by a wonderful charity), she is trying herself to walk (she never learned to crawl), she tries to talk (I can understand her), dances in her own way, loves music, makes her own little jokes, knows lots of books off by heart (Julia Donaldson books especially).
I decided to treat her as if she were capable of anything when she was born. As she couldn’t move much I read to her for hours.
I can say with certainty that she understands everything I say to her.
She laughs, she cries, she loves going to a restaurant or pub for lunch.
She can sit on her own in a ball pit, she’s learning to grip and lift.
She chooses children’s films to watch.
She goes to nursery and absolutely loves it.
She understood counting to ten after I did it twice.
She knows every walking route I take her on off by heart (even after a couple of days).
I had and still have dark days. But she’s the light of my life.
Here’s what helped:
Good community nurses at her first few months.
Going to a local group for children with communication needs (mostly toddlers with ASD). Meeting other parents with non-typical children was such a comfort.
Going to Jo Jingle classes. She sat for the first time there.
Melatonin medicine for sleep.
Having a great bunch of doctors when she was very young)
Going for a walk every day.
Sleeping whenever she did. So stopping trying to have a concern about housework etc.
Going to the pub once a month (my husband and I haven’t been out together alone since she was born). This is hard but worth it.
Taking the dogs out by myself so I get away from the family.
Having a good counsellor.
I’m hoping of course your baby doesn’t have any major issues.
I didn’t see where or if you said specifically what his symptoms are.. but if you want to share, please do.
It’s tough on a relationship. However, you need to try to stop blaming yourself and your husband- there’s no reason to think it is your fault.

I’m so sorry OP, it’s not your fault. Congratulations on his birth. You haven’t lost everything and you’re not to blame.

For what it’s worth CP is an incredibly wide ranging illness. My next door neighbours daughter has it and whilst it isn’t unnoticeable she’s done incredibly well. She’s engaged and lives with her partner and also works as a teaching assistant at a school. It’s not always the life sentence you might think it would be.

@SinkGirl

I don’t mean to be that person, but I absolutely detest Welcome To Holland. I’m glad it’s helpful for some people, but for me I find it very patronising and not at all reflective of how I’ve felt over the last few years. I don’t think you can compare having a healthy typical baby and having a disabled baby to two different European countries. I felt more like I was on another planet entirely for a very long time - lots of uncertainty, lots of bombs going off, things feeling manageable one minute and then the ground falling out from under you the next.

I still do feel like that a lot of the time (Christmas has been especially tough to be honest but that has been my fault for expecting too much), but most of the time I’ve adjusted to how things are. And at the time people telling me that really pissed me off as I didn’t think I would ever adjust, but we all have.

You will get out from this awful oppressive pain, having more information will help, seeing your baby make progress will help. Finding a support network who understand will help. Bit by bit it will become more manageable, I promise.

I feel the same as SinkGirl about Welcome To Holland. I find it extremely patronising, partly because I never signed up to be in bloody Holland! But I know it helps others.

SinkGirl’s post expresses my experiences scarily accurately. I felt like a creature from outer space for a long time - my son doesn’t have CP, but was born extremely prematurely and does have a compelling mix of other disabilities. He was born exceptionally early and I felt I couldn’t properly identify with any of the other NICU parents because our situation was so extreme. I blamed myself for a long long time - deep down I still do - because it was my body that let him down when I couldn’t remain pregnant. But you know what? We have muddled through and adjusted to a different type of normal. He goes to a phenomenal special school and is becoming a delightful, mature teenager who we think will have some level of independence in the future. He has helped us to see the world in a more colourful way. I think he’s made us and our wider family more tolerant of others and more understanding of disability. I hate that his life has so many challenges in it and I would do anything to change that - but he’s amazing and we are so lucky that he survived at all.

Sending love to you OP. It will take time, but I promise you that you’ll find a way through. Most importantly - there are others on MN who you can always talk to - you don’t need to feel alone.

We blame ourselves because it's the easiest place to stick that pin of guilt. Sometimes, there really is no good reason, no meaning. But everything and everyone in your life, especially your beloved baby, means everything. And ultimately, that will be all that matters. I know it doesn't feel like this. And I know you'd give your own life's breath to ensure that your son's could be a life lived in a world shaped perfectly for him. It hurts knowing that this world appears to be shaped so perfectly for everyone else's baby. Why not mine, we ask? The question hammers us in those early days and then it softens as the years pass. Your baby will become a boy and his growth will silence that question to a whisper. His growth is your growth. You will face any challenges with love and strength. You will help him cope, adapt, and amazingly, he will absolutely find ways of fitting into this awkward world that in reality, bends to our needs if we nudge it lovingly and consistently. As a mother, you can and will do this. You will know how. Your beloved boy has come to you as he is, as yours, as a blessing concealed by grief and fear for now. But as he grows, so will you outgrow your fear, and your grief will transform into all of the possibilities you can't see before you now. Your sadness won't blind you forever. You will rise from those ashes of doubt, grief, and fear. It's an Everest climb. But climb the mountain you will, OP, for your boy. You will get to the mountaintop.
I think as parents, we all want an abundance of overripe fruit for our children to pick from. It's all that matters. You will learn to yield your very own for your son.

I remember DH crying in the bedroom and turning to me to ask, "What will we do?" And the answer was so easy. "Love him."
And that seemed to glue our broken bits back together and give DH and I the courage to love each other again. Because we lost that love, that safety net. And we were freefalling. It was terrifying. I still look at DH, at our family and think, "Shit. We're amazing. We've been to the brink and we came back from it, stronger, better."

Your absolute love for your boy, for each other, is what makes this a life worth living and fighting for.
The lion that is your fear will lay down with the lamb that is your peace. Your boy will be the child to lead you all. Never stop hoping. Lean into all of the love, OP. And unshackle your guilt. If you can do one thing, do this.
and hugs, OP. You'll find your strength and your voice for your little boy.

@TheVanguardSix you are a beautiful person

Why did you wait 48 hours OP?

We'd done a hypnobirth course and she'd suggested it'd be fine.
I regret waiting every single day.

🤗💐 - sorry, no advice. Feel for you 🤗💐💐

@TheVanguardSix what an incredible, inspiring post. Blown away by your beautiful words

One step at a time OP. My son had serious issues at birth. We were told he could have cerebral palsy. He is now 9 and thriving. Today he was doing high level mountain biking. Try not to let your mind race ahead. What is the next step for your baby right now?

Has the hospital done a detailed report looking into what happened OP, and have you had a debriefing with a consultant? The doctors must have told you that you weren’t in any way to blame, because none of this is your fault, not even one tiny bit.

I hope the wonderful advice and support that you’ve had so far on this thread is helping a little. I’m thinking of you x

@TheVanguardSix what an incredible, inspiring post. Blown away by your beautiful words

I couldn’t agree more.

You need to grieve for the life/dc you had imagined and learn to adjust to your new reality. Yes there will be tough days but there will also be some amazing times a disabled child can live a full and amazing life. Take all the help you can especially from charities for cp families as these will be the best source of support and information which will get you through the dark times. Be kind to yourself and your dh. If you had told me before I had my dc 1 would have multiple issues I would of told you I would never cope with such a dc but 14 years later its just our family makeup and adjustments are 2nd nature

DD has cerebral palsy, caused by either her premature birth, or by an infection where she stopped breathing 3 days in, or caused by an infection that might have kicked off premature labour. The fact is, we will never know what caused it. And, OP, you will never know.

It won’t help if I or anyone else tells you you are not to blame, you will come to deal with those thoughts and feelings in your own time. It took me a while before it stopped becoming an all encompassing feeling. It took longer for it to become a fleeting thought and that is where I remain 11 years on.

What you are doing right now is grieving for the life you thought you were going to have. That’s an entirely normal process too. You will find your way through it, and find the strength you need to be an advocate for your little boy, but don’t think you have to just get over it, it takes time.

CP is such a blanket term and their tiny brains have so much ability to overcome things, you might find the impact is much less severe than you are imagining. With DD her CP is purely physical, she has poor mobility in her lower limbs. She is in mainstream school, one of the brightest in her class, she spoke early and speaks well. But even if your boy is affected in a different way, there are so many therapies, interventions, teaching methods that can really help kids with CP.

Your life is in turmoil, but can I tell you the best advice we got when we were at your stage? The consultant said, “take her home and enjoy her, what will be will be” I promise you, those first 18 months or so of “normal” we’re really important to me, looking back now I really cherish them. My baby was pretty much the same as any other. I was doing the same mum things my mum friends were doing. It was before therapy and consultations, and equipment, and all the other things that come with a child with CP. Enjoy being mum. Chuck away the development charts, just love that wee boy. You can’t change what is about to happen, you can only take each step at a time.

I’m not sure what is going on with DP, but talk to him, find a way through, if your relationship was solid, you’ll both get through this together.

I don’t mean to be that person, but I absolutely detest Welcome To Holland. I’m glad it’s helpful for some people, but for me I find it very patronising and not at all reflective of how I’ve felt over the last few years. I don’t think you can compare having a healthy typical baby and having a disabled baby to two different European countries.

I agree, it is the most tone deaf, Insensitive thing suggested to me, and believe me I’ve heard many.

The doctors must have told you that you weren’t in any way to blame, because none of this is your fault, not even one tiny bit.

Not in my experience. The best they could give me was “We have no idea why this happened”

@TheVanguardSix what an amazing post. This should be shown to every parent of a child with a diagnosis.

@TheBuffster my child was diagnosed with a life changing disability at 8 weeks so I do know how you feel. But with the greatest of love, you have to take steps to shake off the darkness. Your child needs you to be his advocate and his strength, but you need to build your own strength before you do that. Talk to your GP, join Facebook support groups, force yourself back into exercise. Build yourself up again because you have challenges ahead that only you can fight.

It was not your fault, you made a judgment based on the balance of probabilities to do least harm as you saw it at the time.

It's so hard to accept this when we all live under the illusion that we can control everything for our baby if only we try hard enough to make the right choice but even with 'informed choice' where a choice will work out fine for most people most of the time, it can not work out for you that one time and be life changing.

How were you supposed to know that you'd be in the statistically less likely percentage?

I hope you find a way through the guilt. We all have guilt as parents for the big and small choices we thought we could control that didn't break our way.

Not your fault!

• He's 10 months now. I'm getting more sleep than - was because dh is at home for Christmas. But ds -asn't slept longer than 2 hours at a time since 4 -months old.

That is tough
See if paediatrician can recommend something and order a sleep study?
Ask gp and health visitor to refer you to children with disabilities team ss and say you need night tine support either in home or having baby go to short break carer.
Your mh puts you in a high need category.
There is support and respite there if you say clearly you need it
Will youf dh take baby for the night? Is he struggling as well?
Be honest with hv and ss children with disabilities ..call and ask for assessment....and say you at risk of breakdown. Paediatrician consult as well on the sleep issue
A night off each werk would help a lot?

Do you feel you might harm the baby or yourself?
Do you want baby taken away?
No need to answer...but do tell hv and gp.

Thanks particularly from those who had similar stories. It does help to hear you're not the only one. NCT groups etc full of nt babies and breaks my heart. Less welcome to Holland more agghh I'm in Afghanistan wearing a bikini.
We've asked for a sleep study but been denied because he doesn't stop breathing!? Like how low is that bar set.
Lots of health professionals involved, but nothing practical, just offers of nursery nurse to help learn how to play with baby (patronising as hell!)
DH is not in a good place, but coping better than me. Was hoping MRI might give answers but sounds like that won't be the case.
I know I should feel grateful for the things D's can do, I just get so down at all the NCT benign comments like look who's walking. Hard not to imagine what life would be like if ds was doing all those things.

It’s not your fault.

That’s it.

That’s enough.

If the medics had thought that you needed to be induced sooner, or your DS to be treated for jaundice earlier, they would not have held back from telling you. In my experience they are very, very risk averse and pushy if they have the slightest concern. If the medics were happy with the level of risk, how on earth could you have made a better decision? I hope that time and counselling help you to find peace with the decisions you made, which were clearly made with love and the best information you had at that time. You and your husband are absolutely not to blame if your DS has CP or any other condition. Please look after yourself in any way you can and in particular try to find a way to sleep. Everything feels better with sleep.

Hi OP, I’m sorry you’re going through this.

My situation does not compare to the difficulties you are going through, but I do know what it’s like to have something ‘wrong or different’ (for want of far better words) about your child and feel responsible for it.

There is something ‘different’ about my son that could have been avoided and I look back so often and think to myself, “I should have done this, or I should have done that” in the belief I could have done more and the outcome would have been different.

I don’t know if the outcome would have been different, it probably wouldn’t have, but I think it’s natural to blame ourselves. It’s been almost 5 years for me of feeling guilt and although I have made some peace with it, I don’t think my sense of responsibility will ever truly go.

Like I said, my scenario is not comparable to yours in terms of severity, but I just wanted to extend some empathy so you don’t feel so alone because feeling such guilt is a really shitty way (but normal way) to feel.

Everyone else has left far more inspiring posts than mine and I hope they make you see that although it may not feel like it right now, life can still be bright for you and your son