One Mother On Raising A Child With Higher Needs And The Healing Power Of Love
I’ve been told that the most memorable moment of motherhood is day one. The day your child arrives into the world – into your world. And after that, you can only ever see your life in two ways: Before and After.
The After part is what changes you, setting you on a path of self-discovery, purpose, sacrifice and a love so strong it borders on terrifying. The After can be beautiful and fulfilling, but it can also feel like walking on Lego. The After is the dance between learning how to meet the needs of your child, your other family members, and – perhaps most crucially – yourself. And for parents raising children with higher needs, the After is all of the above and more.
Here is my conversation with Mimi Gilmour on raising her beautiful daughter Olympia.
Talk me through the day you gave you birth to Olympia and how the initial diagnosis was discovered.
At 37 weeks pregnant, the night before Olympia was born, I lay down in bed and noticed that my baby wasn’t moving like crazy like she normally did every time I tried to go to sleep. I tried not to worry – I’d become a bit of a pregnant lady warrior at that point, always asking so many questions and in my head ‘always’ being told everything was normal – but the next morning, I decided to go and see the doctor just to be extra safe.
At the obstetricians’ I was monitored and told Olympia was showing some distress – but not at an alarming level. They decided I should go to hospital anyway for further monitoring, and then once I was there they sent me for an ultrasound. As soon as I got back to the room, the doctors rushed in and asked me how I felt about a cesarean because they needed to take the baby out urgently. I told them to go ahead and they prepared me for the surgery. The doctors explained what was going on step by step and told me how I’d feel tugging and hear the “waaaah” of a baby’s cry. The surgery went ahead, I felt the tugging and they lifted out Olympia – but there was no “waaaah”.
They showed me Olympia (after I asked if it was a boy or girl because I hadn’t found out!) and then they took her to an incubator and NICU. After a while, they wheeled me to NICU to hold her hand. We knew things weren’t great but we didn’t know to what degree. The first inkling of how bad things were was that night when my husband Stephen went to visit Olympia in NICU. They have a rating system where 1 is the most critical and when Stephen went to visit Olympia in Level 3, where we thought she was, he discovered she’d been moved to Level 1. I called my sister Sophie and told her she needed to get to the hospital right away, that something was seriously wrong. She said she’d pick up my mama on the way and be there as soon as she could.
The next day they did an MRI. The day was filled with tears as we waited for the results, and the whole family was in the room when the neurologist and obserician came in together. Both of these doctors had tears in their eyes as they looked at us and said, “we’re so sorry but we think this is one of the worst brain injuries we have seen in a long time.” Stephen asked how bad on a scale of 1 to 10 and they replied, 8.5 to 9 out of 10. He went white, my mother wailed, and I didn’t want anyone to touch me. I then cried non stop for 3 days. Well if I’m honest I cried for 3 months.
We were appointed a neurologist who asked if we wanted to participate in a study and we agreed, which in turn meant Olympia received extra monitoring than she would have normally. We were in NICU for 22 days in total and Olympia was diagnosed with Catastrophic Global Hypoxic Ischemic Encephalopathy – a brain injury caused by a lack of oxygen to her brain. Her longterm diagnosis is Spastic Quadrapaledic Cerebral Palsy. She is also very seizure prone.
How did you process or grieve saying goodbye to the life you had originally envisioned for your daughter?
I think that’s something that parents like us battle for the rest of our lives. I pretty much had a nervous breakdown at 4 months due to extreme sleep deprivation and therefore the inability to start finding a way to cope. One day I just decided that I had to find a way to cope with it; one of my girlfriends, after listening to me bawl down the phone line, suggested that a night nanny might be a good place to start so that I could get some sleep. The weird thing is that I told myself this would be ‘weak’ and it was my job to look after her, however I was too broken and so that’s exactly what I did and she changed our lives.
I made a pact with myself that day:
- Do not compare our situation to anyone else’s.
- Do not think too far in the future.
- Use the energy I have to think about the things I can do for Olympia rather than waste energy on the things that I cannot change.
How did you know you were ready to have another baby? And how did you manage any fears or doubts that came up during your pregnancy with Octavia?
I always had an idea of what I thought the ideal age gap between my children would be, based on the gap between me and my sister, and the amazing relationship we have.
In terms of fears and doubts, I managed them the same way I try to approach most challenges in my life as above ‘manage the things you can control, don’t waste energy worrying about the things you can’t’. I could control how I looked after myself, so I chose to have amazing obstetrics care and tried to be as healthy as possible. I then accepted that what happened to Olympia was most likely a biological accident that wasn’t anyone’s fault. I tried not to worry whether it would happen again as I couldn’t control whether it did or not and every time I felt like I was freaking out I just whipped down to see my Dr and they scanned me and double checked everything was OK. They were really incredible at looking after me. Eva, my obstetrician at AOC, will forever be an important person in my life.
What has Olympia taught you about motherhood?
That love is the greatest privilege of life. One of Olympia’s doctors told me recently that she thinks we’ve loved Olympia into better health. She is so loved, she is literally adored on 24/7 by our family, our friends & her incredible squad of carers & therapist. We are so privileged she receives all that love – a lot of children don’t.
What has Olympia taught you about yourself?
Olympia has taught me to be brave. She’s taught me that it is OK to accept the things I know I can contribute to her and that I am good at, and to ask for help and seek support in the areas I need to.
Where do you find strength on hard days? And how much do you lean on your incredible network of loved ones? (Stephen, friends, Soph, Emerald etc..)
On those hard days, I let my people know where I need help. Sometimes that means I’m feeling overwhelmed and I need someone to talk to or a cuddle from my husband, friends or family. I find strength daily through my own rituals and routines, whether that’s exercise, a hot morning shower and getting ready for the day, or washing my face and winding down before bed at night. I also get strength from getting out there and doing things, like running our bizzos, starting new ones (watch this space – something’s coming and it’s a whole new world from hospo!), or giving time to support things I really care about like Starship.
Is there any advice or words of encouragement you would share with a new mamma going through a similar season as you did when Olympia was first born?
Yes. I was told this advice about a year after Oylmpia was born when, like all mothers, I was thinking I had to do all the things and solve all the problems. When you have a special needs child you suddenly feel like you’re a bad mother if you don’t have a medical degree and the patience of a saint.
One day, one of Olympia’s therapists looked at me and said, “I think I need to share something with you…It’s OK to just be Olympia’s mother – you don’t have to be her full time carer. If the best thing you can do for her is love her with all your heart and find her the best team to care for her then that’s ok.” It literally set me free in that moment. I felt like a huge weight had been lifted off my chest. That advice is something I want all mothers like me to know.
Also that it’s brave to ask for help… NEVER tell yourself otherwise. You are not alone, there are others that understand your challenges both personally and as a family and they want to help you. This applies to ALL mamas!