Lisa G.
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A New Kind of Strength

Lisa G.
Posted by
07 Jul 2016

A blood transfusion for Hugo and a new kind of strength for me.

So, as predicted, Hugo needs a blood transfusion.  He's done well to get through Christmas and into the new year, but his luck has run out and it's a visit to our local hospital for him today.  Henry has a trip for his birthday to see the musical The Lion King and I am the lucky one taking him, which means Richard is on hospital duty.

I find it hard to relinquish the control and responsibility in these situations.  I feel I should be there, I want to be there.  I should be the one to comfort Hugo, if it's needed.  I want to have all the information, to know and understand exactly what is happening.  If I'm honest, I think I also want to be there incase something were to go wrong.  My imagination runs away with me, thinking of all the unlikely, yet incredibly scary things that could go wrong.  If that were to happen, I can't imagine not being there for him. 

But, I have a birthday date with my other little man and he needs me too.  I don't want to sacrifice precious moments with Henry because I can't give up control with Hugo, or because of a 'what if', however frightening that 'what if' might be.  Henry needs to know that his needs are important too, that it's not all about Hugo.

As they left today, Hugo called out 'I love you'.  It's the first time he has said it to me unprompted by me saying it first.  I still remember the first time Henry said it to me and it was just as wonderful and beautiful and tears filled my eyes as I stood waving goodbye.

My littlest man is growing up.  In a couple of months he will turn 3.  His vocabulary is expanding daily.  He is becoming more adventurous, more sociable.  He is growing taller and gaining better control of his long legs.  He is leaving those toddler days behind and becoming a little boy.  This is wonderful of course, and I love watching his little personality developing.  However, with his newfound confidence has come a decrease in his dependence on me.  Again, this is wonderful, but sometimes it's so hard.  The possibility, however small, of losing him, makes these small steps of letting him go seem so much more difficult.

I want to snuggle him in my lap, to wrap him up in cottonwool and keep him close to me.  To protect him and keep him safe forever.  But I can't, I've got to let him grow.  I've got to help build his confidence and encourage his independence and not give into my needs.

The start of the maintenance phase will see him going back to nursery and me going back to work, us all getting back to normal.  In theory this is great, but the thought of dropping him off at nursery and being away from him for hours at a time fills me with dread, so much more so than when he went for the first time at a year old.  So much has changed, we've changed.  We've been on a journey together.  We've experienced things and learnt so much, there's no going back from that.  No going 'back to normal'.

We are going to have to find a new kind of strength for this next stage.  A strength that allows me to let him go, just a little bit.  A strength that allows him to creep a tiny bit closer to being a normal little boy, to manage on his own, just a little bit.  I don't want to do it, but I know we must and I know we will, one day at a time.

3 January 2016

Read more on Hugo's journey at



Hello Lisa.

I just wanted to say that I hope Hugo is doing well, and managing to keep the infections to a minimum. I hope you and Henry enjoyed The Lion King. The film holds special memories for me, and I saw the show last year....just fabulous! Best wishes to all the family x

Lizzie Goates

Hi Lisa, I hope Hugo is doing well also. I really cannot begin to imagine how it is for you all, and from your blog I am able to glimpse a brief insight into all the worries, and anxiety you must feel daily for your lovely little son. I hope that you managed to enjoy the Lion King show,  and even if it was for a brief moment to switch off and have some time away from those thoughts. Sending all our best wishes to you and the family, Lizzie

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