I’ve learnt that my girl has amazing strength, both in spirit and now in her upper body! I knew this wouldn’t be easy and I’m incredibly lucky that I have been able to take this time off work to focus on Erin.
During this time I have learnt that our children have such resilience and adaptability (is that even a word) that children have this amazing ability to just keep going with the hand that has been dealt. I know that if Erin had crumbled I wouldn’t have got through this. As a parent, a mother this whole process is so so hard, I look at other children and want to weep for what Erin is missing out on. I want to scream and shout – I constantly feel on the edge like I could tip over at any point. The littlest things set me off and I constantly have this fear, this ache inside me.
Erin is coming out of spica in 20 days. Yet it will not be the end. In fact I am dreading the next bit even more. I will have a 6 week wait until we are seen again in clinic and until the consultant decides when to operate. I can’t wait to see her little legs again, to feel them pressed against me in a cuddle, to put her in the bath and get her smelling like baby again but and that’s just it there is always a great big BUT. Because the future is uncertain and I am not very good at uncertain. As a mother I want answers.
At the moment I know what I am doing, I know how to look after Erin in spica, I’ve mastered that and now I have to learn something new. She will begin to walk again and I know I will be holding my breath, looking for the waddle, dreading every fall or knock. Yet I don’t want to wrap her in cotton wool. I want her to be able to explore to roam about and get into scrapes, its what two year olds should be doing.
I can honestly say that the 15 weeks have gone quite quickly, and yet it feels like a lifetime ago since I have seen her vertical. I tweeted that I wanted to stop this journey that I didn’t want to be in spica hell anymore. But the reality is I don’t have a choice and neither does Erin. We have to continue and I just need to remember what she has already taught me over the past 15 weeks that she has enough determination to keep us both going. Everyone who sees Erin at the moment comments on how happy she always seems and how it doesn’t seem to get her down. I wish the same could be said of her mother!
10 Responses
you and erin have been such a support to us – really hope we can offer some of the same comfort x
Thanks Jane, as you know its just the uncertainty that is so hard to get your head around. x
You have been amazingly resilient too, Emma! Even though things must be so tough (and reading this, my heart went out to you 🙁 ) you’ve remained upbeat and focussed on getting the very best for Erin. Keep going and forgive yourself any irritability or ‘less than perfect mother’ moments, you’re doing great xx
Thanks Kate, sometimes I just feel like my treading water with it all. I just want to get to the end!
Your doing so well Erin is beautiful, sending lots of love x x
Thanks – she is beautiful, both in body and spirit. x
Seems Erin has strength enough for both of you. You can only take one day at a time but I’m sure you’ll become stronger with every passing day. Sounds like you’re doing great already!
Thanks Laura, yes I need to not run away with myself and take each day as it comes. x
You are the best mother your daughter could have. You will get through this with a beautiful daughter by your side. Stay strong
You’ve been a whole lot stronger than you give yourself credit for. Erin’s got her resiliance from you. You’re both great.