This week’s #MumdayMonday is Vicki Moore, mum to 18 month old Elijah who underwent heart surgery at 6 months old. I only recently “met” Vicki in the wonderful world of Instagram and her enthusiasm and energy in the face of adversity, along with a healthy dose of honesty, makes me feel privileged to host this guest post. I have read it numerous times and the first paragraph still leaves a lump in my throat, and I find myself nodding enthusiastically as I read on. If you would like to read more of the musings of a NICU mum then you can find Vicki on Instagram at @vickimoore99 or on her blog, www.confessionsofanicumum.blogspot.co.uk
I stumbled across the term ‘heart warrior’ recently when reaching out to other parents whose children have had open heart surgery. It is used for all of those men, women and children who have had heart surgery. The term is also given to the parents of these children, as although we didn’t physically have the surgery we had to live through the experience as well. What makes me a heart warrior mum? My son does. He taught me to be brave, to laugh when I didn’t want to and that we are stronger than you think. At just 18 months he has taught me more than anyone ever has.
The experience of having a baby in NICU, and having the op has changed my relationship with him. I feel a degree of guilt when I am just being a ‘normal’ mum to a toddler. Telling him off, stopping him from having chocolate for breakfast, looking forward to bedtime, I feel so guilty that shouldn’t I be grateful for him being here and healthy? Of course I am, but sometimes it is hard to distinguish where the NICU mum ends and the ‘normal mum’ begins. He is spoilt rotten and I sometimes worry I may make too many exceptions for him, and give in that bit too easily.
I had in my head such an idea of when Elijah was born we would have so many plans, and do everything “just so”. The reality was that didn’t happen. We had to adjust, we had to make exceptions and changes. I don’t parent how I thought I would, I don’t always give Elijah organic food or do arts and crafts with him. I let him watch TV too much but as long as he is loved, fed, happy and clean at the end of the day I have done my job. I have stopped stressing on being the ‘perfect’ mother as he wants a happy mum, not a stressed out mum.
I have learnt that I can do anything. I am stronger than I thought. I may be emotional but that is not to be mistaken for weakness. Being a mother is who I am, and everything else is part of that. It took me a while to realise this, and not to be ashamed of who I am. It took 26 years and becoming a mother to learn to accept myself.
If I could travel back 18 months ago to when we found out about Elijah’s condition, I would give myself hope. Hope that it was going to be hard but we were going to get through this. To not push people away, and to be hard on myself for wallowing in self pity for so long. The first 6 months when we were waiting for the op date were so tainted, I would tell myself to enjoy them. That it was okay that when we got good news, something wouldn’t immediately go wrong.
I can pinpoint two moments in the last 18 months that have been the most challenging for me. That I didn’t think we would ever get past. The first is when we found out Elijah had suffered a bleed on the brain at birth and this caused seizures. They didn’t know if it would affect his development, his speech, ability to walk. He may have special needs. It was hard to accept that, we had to deal with not just the fact he has a life threatening heart condition but he may be disabled too. The second moment was when I held Elijah to be anesthetised for surgery. Once he was asleep they handed me his dummy and took him off me. They laid him on the table and took him away. I crumbled. I couldn’t even kiss him goodbye, I thought my son was going to die and that he would never come back from theatre.
The biggest joy was the surgery being a complete success and him going from strength to strength. He is classed as a normal little boy with no restrictions. He is walking, talking and is currently on a 22-36 month development chart at nursery (4 months ahead of his actual age). Elijah is a funny, weird and beautiful little boy and is the biggest joy in my life.
Hands down the thing that puts fire in my belly is my son. I am fiercely protective over him. I would do anything to protect and provide for him.
The future is now looking the best it ever has for Elijah. We have been discharged from Great Ormond Street until next January! We are currently enjoying and planning a normal year and taking Elijah on his first holibobs!
Do you have an experience as a mum that you would like to share, sweeping generalised label and all?..! If you think you might like to take part, then send me a DM on Instagram, a private message on Facebook, or email me on firstname.lastname@example.org
If you feel daunted by the prospect of writing it for yourself but feel you have something to say, then I can send you some questions and help you turn it into a post.
#MumdayMonday – because every mother deserves to be celebrated xxx ( I can’t believe I just wrote that – I feel a bit sick.)