Hi! I am a 35 year old, married, mum of one toddler, living in the UK.
I have Cauda Equina Syndrome. Today, October 31, 2003, I am currently 8
weeks post op. How I ended up with CES is another story but what I am writing
here is my experience of being a Mum with CES.
My daughter - Zara is 17 months old. She is fantastic. She keeps me smiling!
My husband - Ian - is also fantastic. He keeps me smiling, and does EVERYTHING else!
The effect of all this CES - emotional, physical, not being able to lift or look after baby, not being able to bend, hard to play with her etc., is sooooooooo tough. And the other side of that is my husband having to work full time at his job, with a 1.5 hour drive each way, and do all that stuff with the baby, look after me, look after pets, do the cooking, and the housework etc too. Ohhhhhh if you are a mum (or dad) with CES I can sympathise with you as I know exactly how hard it must be for you. And if you have more than one child, from what I know it is hard enough work having 2 little kiddies anyway, let alone trying to look after and love them when you have CES !!!!
So, for us, how do we cope - not easily - but it is still early days (prior severe back ache for 1 year and trauma CES as of Aug. 30 this year) so perhaps the exhaustion and stress on my husband, Ian, hasn't quite set in yet. I expect in a few more months he may be a bit less keen to continue with all the limitations it has also put on him. We'll see - he's quite good natured so I may be lucky :-)
As for my daughter, Zara, that is one of the things that has grieved me the most. Not being able to look after her in so many ways - I can't lift her which means I can not change her nappy (diaper), I can not pick her up to comfort her, I can not do this at night either when she cries out, I can not rush to her to help her when she needs help or has hurt herself, I can not dress her, I can not bath her, I can not feed her, I can not play with her (as before), I can not cope with her when she is wriggling or climbing all over me. I can't lift her on the swings at the park. I can not drive so I can't take her places.
One thing that helps us is that she goes to nursery full time 5 days a week. (Because I was working full time until this happened). We have got one of the nursery nurses who lives near us to help out by picking Zara up in the morning and then dropping her off again at night. We have given her a key so she lets herself in. Although I am usually awake, my legs are really bad in the morning so I am usually still in bed but we have the door open so I can say hi to her and bye bye to Zara. She helps by getting Zara out of her cot and getting her dressed for 'school'. She then takes her to nursery with her. In the evening she will bring Zara home from nursery, and will help feed Zara or at least lift her into her high chair for me. She will also play with Zara until Ian gets home. So, I have all the daytime to myself. But it is so hard when she is around and cries and wants Mummy and wants to be picked up and I have to say "I am sorry I can't." I don't think she understands yet.
What we DO is sit on the couch together and read books. I can tell her to bring her book and we sit and watch together. Another thing is something we swore we'd never do but due to the CES needs must. We sometimes use the TV as a sort of baby sitter. We let her watch a little appropriate television. She will watch Andy Pandy or Baby Mozart and Baby Beethoven. They enthrall her. We have them on DVD so can stop them when we choose. We don't let her watch too long but I can sit with her and point things out on the screen and talk to her and praise her when she points things out too. At least she is not then crawling all over me - and my sore legs/back etc. She sits quite still and I'll put an arm around her. Or, if necessary it gives me or my husband a chance to do get on with something else nearby - in the kitchen - prepare her supper or ours or whatever.
She has her supper in her high chair in the kitchen. So, I have a chair in there so I can sit down with her and try to help a bit. I also manage to stand a teeny bit to get things ready for Ian to feed her. I don't do anything elaborate. Luckily also she gets 3 full meals a day at nursery so her supper is usually not a big deal and is finger food just to top her up before bed.
Ian will bath her, and depending on how I feel I will either take the time to rest without the climbing all over me or I will go and sit on the toilet in the bathroom with them even if Ian is doing everything. They seem to like the company.
At first it was very hard for me to hear them having a whale of a time together while I was having to lie down in pain. Huge belly laughs would come from the both of them from downstairs or in the bathroom or wherever they were playing. I was a bit resentful. But now my pain is a bit better I can join in a bit. And, Zara has started calling for Mummy again (for a while there it was Daddy Daddy Daddy - that was hard).
But on a good note, all the things my husband has had to do he would not otherwise have done if I was well. And so it has given him an even stronger bond with Zara (it was great to begin with but now is even better). He actually loves all this stuff. So from the crisis came a wonderful thing. I try to look at it that way to keep positive. But maybe that's easier now as I am getting my pain more under control.
I still feel my husband is resentful of me when I say two times a day I need to have a nap. I can't help it. I need it. I don't sleep well at night and I have to rest. So especially on the weekends it is hard when we are all home together. He wants me to watch Zara and I just plain can't. He wants to get on with the things he wants to do. It really exhausts me trying to watch her when I can't. I try to do a bit so he can do things but at the end of the day I am absolutely exhausted and usually have over done it and then that makes me cry. I shouldn't have to do this. Each weekend is the same. Finally last weekend I broke down and explained to him how although I try hard and look ok on the outside, I am not ok on the inside and I hurt constantly. I don't think he realized how bad things are until I started to make a diary and fill in my disability claim forms. He read a few pages and said "That is depressing reading." I told him - he's lucky he only read a few pages - I have to live it all the time, and more than a few pages worth!!! I have told him I just plain can not look after Zara on my own.
We have no family nearby who can help but we do have great neighbors so, I decided that if he insisted I look after Zara and I couldn't cope, what would I do about it. So I decided that if necessary I'd just ask the neighbors to take her for an hour or so if I couldn't look after her. I haven't had to do that yet but it is in my head as a contingency. Think what contingencies you could call on if you really, really need a break and your husband is not available. Get the support in place so you just have to call and they'll come to help.
My husband has also had good support from his work and has worked from home or taken holiday days to be home with me, get me to appointments - I can't drive at all and I can't even walk as far as our local shops so am really stuck in the house all day!!! Also when Zara has been ill and had to stay home from nursery he has stayed home too. That was hard work - when I was just home from hospital and she got really sick. We thought she was going to have to go in to hospital herself, but luckily we eventually got some antibiotics and it sorted her out but I had to put all my pain aside and we both had to look after her sick with worry - hard work.
When Zara sees me crying it kills me. I try not to cry in front of her but I can't help it sometimes. I just say - "Mummy is sad." I don't think she understands that yet. But if she does see me crying, she now says "Mummy, Mummy" and wants to kiss me :-) So then that makes me smile and makes it a bit better. Even if I didn't have CES I expect there would be times she would see me cry - it is normal. So it is something she needs to understand and I try to let her know I'll be ok but I need to cry now. I am not sure how you handle it with an older child but I expect they should understand a bit better a simple explanation. Maybe try to tell her "When you do [x] it makes Mummy's legs hurt. I still want to play/cuddle you but you need to try not to jump on Mummy" (or whatever). An older child should understand that one. Then maybe she can help you with the younger one by steering little one away from your legs. Maybe try to explain to her what sore means for you. Just ideas.
Before the CES happened, we had thought that about this time this year we might start trying for a second baby. When the CES happened, I knew it was out of the question for this year. But, when I go for my physio it is the same day that they have the newborn baby clinic (to weigh them etc) and I sure am feeling broody. I get frustrated as I would love to be pregnant now. Due to our ages, we wanted/needed to have our children close together. So, I feel a bit sad. We have agreed to wait a year so I can recover a bit and then see how I am and whether I and we would be ready to cope. I am fearful now that the pregnancy might put more strain on my back. So, having a second child is something we'll have to consider carefully. So, in a way, I am also grieving the 'putting on hold' of those plans but the mother in me is feeling very broody, so that is not easy and can make me sad. On a positive note though, we are blessed with the most fantastic daughter. Just like everyone else's children, to us - She is good. She is smart. She is funny. She is loving. We thank God that we have her even if next year we decide we can not cope with any more. She is such a blessing at this time. Even in her own way she helps me through this.
Other than that I don't know what else I can say. I try to do what little I can around the house. Every teeny bit helps Ian. Every teeny bit makes me feel a bit more of a 'normal' life. Even if just making (not changing, as I cant bend to do it) the bed. I try to do my hair and makeup for me and also for when Ian is coming home so I look nice for myself. That gives me a bit of a psychological boost. I have depression from all this but I try hard to keep myself positive and to give my self permission to be depressed from time to time and just go with it. I know it will pass eventually.
Well, there's a bit of my story. I am not sure I can help much but I hope that sharing my experience it might help you. Feel free to ask me any other questions you might have and I'll see if I can help. You can reach me via the wonderful CES Support Group email (you'll find the address elsewhere on the site).
Take care of yourself! hugs!!! Suzan