FAQs

I was reading Little Mamma said‘s blog post about being asked questions about her son’s condition – well actually in this case she was asked outright ‘what’s wrong with him?’

I’ve been asked that about Sam. It was worse when he had his NG tube in because that was stuck on his face and impossible not to be seen. Now it is really when we are out and pump feeding him or when people (who we may know a little, or don’t know at all) stop and chat to us and notice something might be a bit different with Samuel.

I  know people don’t mean any harm or offense. We, as humans, are just terribly flawed when it comes to putting our foot in it. We say things without thinking. People essentially do mean well. If you are reading this thinking that you might have asked a daft question, please please don’t worry about it. But I do wonder though whether I should have a list ready of frequently asked questions to give to people before they come out with their questions.

An example could be, in no particular order:

Question/Comment: Gosh, isn’t he a big boy? My cousin has just had a big baby too. (This is said a lot, but it is because I have to hold Samuel as if he was a little baby because he is unable to support his own head and neck)  Answer: No, not really, he’s just right length and weight actually. He was only 6lb 4oz when he was born.

Question/Comment: Was he a premature baby? How early was he? Answer: He was full term, well one week short of being bang on full term.

Question/Comment: What’s that? (Said after spotting him being gastrostomy fed) Answer: He is having a feed via his gastrostomy button, it goes straight into his tummy.

Question/Comment: Oh, how bizarre (looking very confused), can’t he eat normally then? Answer: He hasn’t got a reliable swallow so all his feed and medicines go through his gastrostomy button.

Question/Comment: Was very sorry to hear about your baby. We’ve been thinking about you a lot but didn’t want to get in touch as didn’t want to bother you. Answer: No need to feel sorry for us, we have our child that we’ve always wanted and who we love very much. He has brought so much joy into our lives.

Question/Comment: What’s wrong with him?  Answer: He has a rare condition that affects the brain, causes severe epilepsy and global development delay. (It’s a funny question because with strangers or people I don’t know very well, how much detail do I go into? So I just mention the epilepsy and special needs in the hope that is enough to satisfy interest but not boring or scaring them with more info than perhaps they needed!)

Question/Comment: Will he grow out of it? Answer: No, unfortunately not.

Question/Comment: Would an operation help? Can they cure his condition. Answer: No unfortunately not. Samuel is missing a part of his brain & has lissencephaly which refers to the smoothness of his brain. This cannot be repaired or cured.

Question/Comment: I don’t think he likes me/is interested in what’s going on/he looks bored. (This is normally said when someone tries to interact with Sam, but Sam just ignores them)  Answer: (I’m never quite sure what to say here) He isn’t ignoring you really, he has special needs so doesn’t realise that you are chatting to him.

Question/Comment: I heard you were visiting the hospice. I didn’t realise things were that bad. Answer: There are a lot of unknowns with Sam’s condition, particularly as it is very rare. But we do know that he has a life limiting condition and that not only means that he is extremely limited in what he will be able to do, it does also mean that how long we have to enjoy him is very limited too. The hospice offers us great emotional and practical support and respite. They also have fantastic facilities and are great at looking after children like Samuel.

Question/Comment: So will you be having more children? Or when do you think you’ll start trying again for another one? Answer: Err, it’s not quite that straightforward and Sam is only 15 months so we will take our time.

Question/Comment: Does he sleep ok at night? Do you have to stay up with him all  night? Do you get to sleep? Answer: We are lucky in that Sam has a drug called Chloral Hydrate that helps him sleep at night. Doesn’t guarantee he will sleep straight through but helps him settle and gives him more of a night and day. He’s on a feeding pump for 10 hours overnight so is bound to do a massive wee nappy which can disturb him so often get up to do one nappy at night. Much like a lot of ‘normal’ parents I imagine.

Question/Comment: You are very brave. I don’t think my husband and I could cope with a disabled/special needs child.  Answer: Yes you could, you are a parent, you love your child and would do anything for them. You would move heaven and earth to help them. We are just like any other good parents who love their child.

Question/Comment: Is it ok to give him a cuddle? Do I need to hold him a special way? I wont hurt him will I? Answer: Cuddling Sam is just like cuddling a big baby. Just hold him close and if he has a seizure then just hold him tight.

Question/Comment: Oh is he having a little laugh? Answer: No, unfortunately he’s just about to have a seizure.

Maybe I should just give them a link to my blog post about how damn perfect my boy is.

Other random comments we get:

• Oh my goodness aren’t his eyelashes amazing, why do boys always get stunning eyelashes?!
• You would never tell anything was wrong with him when he is calm. He just looks so perfect.
• My friends step-son has Downs Syndrome.
• Could I have a cuddle with Sam please as I’ve had a stressful day and need a Samuel cuddle to relax me.
• (Stranger looking at him snoozing or calm in his buggy, normally said when we are in a lift) Ah, sometimes you just want to keep them little like that. Enjoy the peace while you can as they grow up quick and will be running around causing havoc in no time. (My dream would be for Sam to be running around causing havoc!)

But one of my favourite things said to me recently by a stranger has to be, ‘I have to tell you that I think your baby is one of the most beautiful little creatures I’ve ever seen’.

If this post sounds all too familier to you, Kate from The life and Times of Team Kitchen blog wrote a great poem called Staring. Pop over and have a nosey.

It’s all just words

Just a quick note to answer a question someone sent me.

I’ve been asked why is my blog called Tricky Customer. Well, as the advert says, it does exactly what it says on the tin. When he was in NICU, Samuel was often reffered to as a tricky customer, because that was what he was. The doctors were quite literally scratching their heads trying to figure what to do and how to control his seizures while working through the drug book. He was anything but a straightforward patient and his seizures and condition was nothing that they had seen before.

Also while I’m here I thought I’d mention that I previously did a blog post called Seizure vs Fit where I explained how and when we use these two words. But when Sam was in NICU the nurses and doctors very rarely used these words and instead it was always ‘episode’. ‘Samuel had another episode this morning’. I found it quite strange but it seemed to be the language that was used. Interestingly I noticed that when a couple of the premature babies in neighbouring cots had breathing problems and needed urgent help, these instances would be refered to as ‘episodes’ too.

But in the end, they are all just words aren’t they?

 

Seizure Vs Fit

I just wanted to make a comment about the word ‘seizure’.

Sam’s pediatrician and neurologist say ‘seizure’.

When my husband and I talk about what Samuel has been up to we mostly use the word ‘fit’. When we discuss Sam’s condition with friends and family we use the word ‘fit’. And most of the nurses and doctors during our recent hospital stay say ‘fit’. This seems to be the word that people find easier to digest and understand and actually my mum said she finds it easier to think of her precious Grandson as having a fit rather than a seizure. Daft I know.

However, speaking to an adult who has epilepsy they said they hated the word ‘fit’ and much preferred it if people said ‘seizure’. And I guess, because of that I feel inclined when talking about it on twitter and on here to say seizure.

I’m not sure really what is right and what is wrong, but to us both words mean exactly the same it is just the habit we’ve got into.

Edit: Just popped back to add that when Sam was in NICU they would refer to him having a seizure as an ‘episode’. We’d come into the unit in the morning to be greeted by a nurse saying, ‘Hi Mum and Dad. Unfortunately Samuel had an ‘episode’ this morning’.