Not just a syndrome

Last week I had a meeting with a psychologist to talk through how I was feeling about everything that has happened.

When Rohan was first born and in the hospital we both spoke to a councillor about what we were going through and she was there to guide us through those first terrible weeks when we were just existing, not living. Our thoughts were on being split between two children, the unknown of the situation we had found ourselves in, the guilt, the worry for the future, the worry that we were terrible people for wishing it could be another way. She was there on the day after we did research into his potential syndrome, where the grief and realisation started to go beneath the surface and I let in sink in a little. I was afraid to let it in, afraid I'd fall down so much I wouldn't be able to get back up again, that I'd feel this heaviness and pressure in my chest forever. I spent the whole day crying, holding Rohan's hand in his little cot. But I managed to talk, to share my inner most fears, say the things I thought I could never say out loud to anyone else, and it made me feel better. This session with the psychologist this time wasn't as dramatic, but it did feel like a breakthrough. It gave me perspective and also a resolve to practical problems I was facing.

Over the last few months since Rohan came home and we gradually shed the equipment he needed in the day and life went back to relative normal I've been finding certain things difficult. On a day to day level I feel like I've accepted our life now, we've adjusted to having a baby in our lives once more and all the extra care we have to give Rohan has just become second nature. Of course not having to have the oxygen to take around with us, the ng tube to feed with and him in leg casts has made it so much easier, and I wouldn't wish to go back to how it was but also perhaps it's made other things more difficult.

In a way having these extras made it easier for people to see that something was different, that there was a reason for the way Rohan was that was easily distinguishable to outsiders. I gave me something to hide behind, to not have to explain fully and perhaps stood as an indicator that not everything had gone the way it should have, and the we were not having the normal experience. I don't know why I found this difficult. I wanted more than anything to appear normal, to not stand out but at the same time I found it uncomfortable that other people we're living this life we thought we would have, but weren't. It hurt me to hear about people complaining about normal issues with a baby, it made me think "you have no idea" and "you should be grateful for all you have" that these issues were their only ones. Having all of Rohan's extras was like a badge and a shield for those emotions, it was obvious our journey wasn't the same. I know it's not anyone's fault for voicing their own problems, and in a way things aren't always what they seem, I will never know everyone's back story. They may have their own battles going on and that's just something I have needed to accept.

I've always suffered somewhat from social anxiety and I feel it's just got worse recently. I worry about how I'm going to appear, over analyse what I've said or done and I'm just afraid of making a fool of myself. I really struggle with making conversation, small talk and putting myself out there. This all contributes to my struggles with Rohan. I feel like perhaps I have accepted parts of what has happened, but I find it difficult to really identify with a lot of other things. You may notice that I don't speak often of the particular syndrome that Rohan has, it's not something I really name out loud or go around talking about. When talking about it I'll more often than not just say he has a genetic syndrome and leave it at that. Perhaps because it's a fairly obscure one that people won't have heard of it before anyway, but also partly because giving it a name is scary. I don't feel ready to identify with it just yet.

I've really struggled with social situations and knowing what to do or say about all that has happened. To people who know us and our story well, I can talk about it, and of course on the internet I feel freer to discuss it and share our journey, but in real life I can't. I just feel I don't know what to say. Now, like I mentioned before, that Rohan doesn't have any of the extra equipment that identifies something I feel like it's all down to me to explain but I don't feel comfortable. If I was to take him to a baby group it would be obvious that things were different. He's ten months old and can't yet sit unaided and he's tiny, so when people ask his age and I say, I can always see a moment of slight shock and questioning. Then I know it's my cue to explain more, but sometimes I just can't. I know I don't have to, but I also know that if I want people to understand what's going on, and to spread acceptance and understanding that sometimes things can be different then I need to explain. I want it to be ok, I want to feel like I can go to any regular baby group and meet other parents and be accepted, but I just feel too different. I'm not sure whether it will ever be the same, and I know I won't really be able to blend in in regular groups or places and again that's something that I just need to accept and will hopefully happen over time. I just need to find the right environment for both Rohan and I to socialise and feel comfortable.

But there is also something else that I talked about with the psychologist, and that is that I don't have to introduce Rohan as a syndrome, because that's not all he is. I get that it helps people to identify with other people who have the same thing and I think it holds so much value, but I know that's not all he is. I think this is part of the reason that I don't name what he has so much, because to us he's just Rohan. He has his own personality, yes he has this syndrome and characteristics, but he is his own little person also. On a day to day basis in our little bubble that is all we know and it's easy to put all the wider problems to the back of your mind. I think a little it stems from our time in hospital where we'd be spending most of the day with our new baby, trying to bond and learn about who he was to then overhear the doctors on their ward rounds talk about him just as a list of medical problems and not a human being or a tiny baby. In the end I would usually remove myself around this time and just wait to hear any news when it was told to us specifically. I know that everyone is different in these situations and for some people finding out and hearing all the medical side really helps, but for me not so much.

So instead of feeling like I need to explain our situation and to introduce Rohan as the name of his syndrome I can instead focus on all the things that make him him. I will of course when needed explain a little more, but for now I feel like it's important to view him as more than just a name. I'd love to become a bit more of an advocate for this sort of thing, to stand up and show that living with a child who may be different from the norm can be difficult yes, but so rewarding in many ways. To integrate more and perhaps change the way we view babies and children with these sorts of things, to make that conversation easier to have. I know I have a long way to go in myself before these things can happen, but I think that the first step is by being open and proud of who Rohan is, despite and because of all that he has going on. And raise him as Rohan and not just his syndrome.


  1. Beautiful. I'm so glad you've reached this point, had chance to talk with someone, and voiced some of it. Everyone is smitten with robags

  2. I really feel inspired by this post. You've highlighted some very important, enlightened points. Thank you for sharing and I wish you were at the baby groups I attended!

  3. Thanks so much for writing this. It has really resonated with me & my heart goes out to you. Navigating this unexpected journey can be so hard, so confusing & yet so joyful. My little girl is now 2 & I have struggled with all the things that you have so bravely described. Our early days as a family involved professionals talking about our precious baby as if she were nothing more than a list of 'presenting features'. I found it so hard to go to groups & do all the 'normal' baby things that I had planned to do. Even now, when people ask me how old my daughter is, I find myself lying, changing the subject or over sharing. It depends on how I'm feeling in that moment. It can be so draining, you're always on guard.
    I'd never really considered the idea of the equipment being a barrier, but I can see how I've done the same. Even now I sometimes put in her hearing aids in the hope that people won't pry too much.
    Your little family are adorable & Rohan is so lucky to have such a loving & supportive unit. Please carry on updating us & know that there are other Mummies out there who walk with you x

  4. Sending massive squashy hugs - I don't know if it will help but for me I found that having a couple of sentences that explain what is wrong, what it means and then neatly directing things on (yes, it's shit and thank you for asking but would you mind if we talked about something else...?) has really helped when we go outside our bubble and people are naturally curious

  5. I don't have any particular words of advice, but I really liked this post. Whenever you post, I always think you are able to articulate incredibly well the things that are difficult for you to voice in conversation.


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