Struggling is not something I admit to often but at the moment I am. I don’t know if it is the time of year. I don’t know if it is because I am tired. I don’t know if it is because I am actually going insane. But I am struggling.  I didn’t for a second think that having a baby after having a baby die would be easy. Not even for a nano second. I knew it would be hard. I knew that I would struggle. I knew and yet I am finding it a struggle that I am struggling. I hate admitting that things are hard.

I had started to write this blog post about how much easier the reality of having a baby after having a baby with SMA type 1 was because it was and some days it still is. I then decided to write a blog about how hard it was and how my head is a right fucking mess at the moment because it is. But instead I am writing both together because that is how it is in my head, ALL DAY LONG.

Evan is incredible. The things that I love most about him aren’t things that most people love about their babies. I love that his cry is loud and, at times, relentless. I love it. I love that he cried at a whole new level of loud at his first set of injections. I love this because SMA type 1 meant that Eilys didn’t do this, her cry was weak. I love that at the moment Evan has a cough and he is really dramatic when he coughs. His cough is loud and forceful. His cough wakes me up at night and I love it. . I love this because SMA type 1 meant that Eilys didn’t do this, her cough was weak. I love that he is really strong. He holds his head up, he kicks me all the time, he flails around so much and he does little crunches all the time. I love that I find it hard to text when I am feeding him because he is forever knocking the phone out of my hand. I love this because SMA type 1 meant that Eilys didn’t do this, she was physically a lot weaker. I am not a monster, I love loads of other things about him too and I also really hate that he feels sad enough to cry like that at times and I hate that he has a cough too but in a weird way these comfort me.

But typing that all out panics me, what if I am jinxing him by saying all this? What if the CVS was wrong? Eilys didn’t show any obvious signs of muscle weakness until still was over 4 months old and Evan is only 2 months old. What if we have to go through it all again? I spend some of most days looking for signs of regression or worrying that something could be wrong. To start with I found it comforting that Evan looks so much like Eilys but sometimes it worries me. I find myself googling things to reassure myself and then stopping because what if it makes me feel worse?!

I tell myself that I am being crazy and that this type of worrying is normal after everything we went through with Eilys but still the thoughts lurk. Worrying is pointless and for the most part I keep it a minimum. The worries appear in the middle of the night or when I am walking. I am loving being with him and seeing Evan grow and change. But the thoughts lurk. I tell myself that I have nothing to worry about, and I really don’t have anything to worry about specifically, but I had convinced myself that I was being crazy about Eilys too.

Evan is a very strong baby, everyone says so. Unlike Eilys, he likes tummy time most of time and is really active. He bears weight on his legs and is trying to roll, a little. Part of me really wants him to do things like roll and sit up and stand and walk and run as soon as possible so that I can stop worrying about it but the other part just wants me to enjoy how he is now. Each stage of a baby’s development is wonderful and I really don’t want to wish any of it away. Ugh, the more I am writing this the more insane I think I sound!

Sometimes daft thoughts pop into my head like “when will Evan be old enough to have that feed bottle that drained in so I can feed him whilst doing the washing up” meaning the naso-gastric feeds we had we Eilys. And then I remember and I am sad, how daft is that!? And a few times when he is coughing I start trying to remember where I have left the suction machine. These thoughts just pop into my head and make me really sad but they also make me chuckle a little.

I am sure that reading this you are thinking “but the CVS test said Evan didn’t have SMA” and yes, it did. When the genetic counsellor called us with the results she said “your baby does not have SMA” but then when the letter came confirming the results it said that it was “highly unlikely” that he had SMA. What does that even mean? I should have asked at the time and I should call to ask now but I am too scared (which I know is really stupid). At times I am a ridiculous human being.

Like I said, I knew having another baby would be tough but I didn’t realise how tough or in what ways it would be tough. Evan is 10 weeks old at the moment and we are still waiting for his 6/8 week check with the GP and I am hoping that this will put my mind at rest a little. There isn’t anything that I am worried that he isn’t doing but at this age I had no worries about Eilys either. Evan is amazing and like I have said before he has been incredibly healing for us all. I guess this worry and panic was inevitable but at the moment it is getting a bit much. Flitting between extremes of purest joy and then crushing worry and sadness is bloody exhausting too. And yes, I am thinking that maybe it is time to contact a counsellor to unpack these thoughts a little bit.

Thanks for reading


One thought on “Struggling

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  1. Emma, as you say I have rarely seen you express these worries on your usual posts. But I’m not surprised at anything you say – it seems to me like a completely normal reaction to something so devastating. No one can imagine how life is for you, Joe and Dylan. But I do think that looking at what Support you can access may be a good idea if you are ready. And chase the GP for that check….. xx


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