Raising Baby Sasha - Mummy's Stephanie's Inspirational Story
For the month of September, we are really excited to have Mummy Stephanie (https://www.instagram.com/mamasteppiness/) who runs a dance studio (https://www.instagram.com/stepstudiosg/), to share her motherhood journey with us.
Mama Steph has an adorable daughter, Sasha. Baby Sasha was diagnosed with epilepsy with a cluster of 9 tonic-clonic seizures at 17 months old.
It has been quite a journey for Mama Steph and Baby Sasha and we are glad to have her opening up and sharing her stories to help other mummies who are going through the same journey as her.
PS: At Lovingly Signed, we are looking for inspiring stories from fellow parents to share with the world. If you have a story that has made an impact on your family, we would love to hear it and to feature you! We want to be a part of celebrating you and all the amazing moms, dads or caregivers out there.
Please write in to hello@lovinglysigned.com and let us take over from there.
1. How has becoming a mum changed your life? What’s the best part about being a mom?
Becoming a mom has revealed to me the existence of unconditional love. I have grown to truly understand what it takes to be patient, compassionate, and giving.
My baby girl has shown me more courage and resilience than I have in me and the best part about being a mom is being able to witness the tiniest moments where I know she’s definitely my child.
From having birthmarks in the same place, to her food choices, to watching her sleep the same way her father does… I can’t choose the best part so I would say those smallest moments are where big love happens.
2. What’s your #1 struggle as a first-time mummy?
The worry never goes away, so sleep and rest inevitably take a backseat. I have hardly any time to rest as I am always very anxious to make sure Sasha is watched and taken care of all the time.
Deo, my hubby, is very hands-on and he takes a load off me more than I ask, but still, the worry never goes away. I guess I’m still learning how to trust my girl and trust in my parenting more.
3. As we know that Baby Sasha is diagnosed with epilepsy, how's the whole process of knowing and caring for her like?
Sasha had her first cluster of 6 seizures within 24hrs at 15 months old. She was later diagnosed with epilepsy with a cluster of 9 tonic-clonic seizures at 17 months old. This was accompanied with Global Developmental Delay. We have been in & out of KKH for neuro appointments, speech & physiotherapy ever since. She is now 22 months old, and still experiencing seizures on an average of once every 3-4 weeks.
Knowledge is one thing. Logically, we know nothing can be done to cure epilepsy, and that there are hundreds of anti-seizure drugs to try controlling the seizures. Logically, we know doctors are doing their best, we know we have to keep to our appointments and do whatever tests are needed no matter how many times they draw blood from my baby.
Accepting this condition, going through the trauma of witnessing every seizure, and having to re-learn how to live our lives with a child with epilepsy… that’s something I’m still figuring out. A lot of it is a survival instinct and fight mode turned on. A lot of it is riddled with mom guilt and so much fear.
Emotionally, I am exhausted, but somehow with every fiber of my being, I still find ways to make sure Sasha gets the best of me. I try to hide my worry and practice believing in her ability to live with this condition. I try to provide her with the best quality of life and not treat her differently. And I take all the advice given by doctors, nurses, therapists, and other parents with similar struggles, and I do what works best for my family.
It’s tiring to keep looking out for her while she’s playing because we don’t know what triggers her seizures, but we have gotten used to becoming more alert and aware of her surroundings. We can’t prevent her from bumps & falls but we can try to keep teaching her how to stay away. We can’t force her to hit her milestones so we just keep thinking of ways to motivate her through play and things she enjoys. Caring for her requires pretty much 24-7 attention, but we have found a rhythm to work it out somehow!
4. As you are working and taking care of Baby Sasha how do you unwind and have your me-time?
Haha my hubby and I take turns! I have a couple of hours to myself a week to go for personal fitness training and a massage. He plays his computer games and meets up with friends. It’s been a good balance because nowadays, play dates and playgroups can usually only accommodate one parent at a time due to safety measures, so it forces the other one of us to might as well use the free time to ourselves. but yeah, we find a way to balance this, although we do realize we sacrifice our couple time together.
5. Are there any heartwarming times while caring for Baby Sasha?
Too many!
She loves peekaboo so much she would take any t-shirt or blanket she sees and throw it at us and go “boo” — her way of insisting we have to play peekaboo with her. And when we do, she chuckles and squeals non-stop!
She loves stickers now and it’s the one thing motivating her to stand up against the wall or mirror to keep peeling and pasting stickers up. Sometimes she would paste them on herself and look at us like she’s so proud to have stickers on her.
She loves eating, and she loves feeding her dad. She always goes “mum mum”, then lifts the spoon towards her father, then goes “um”, and smiles so happily when Deo eats from her spoon. Mealtimes are messy but always endearing.
She loves her bath time. She would be very engrossed watching me brush my teeth, then she would take her toothbrush to bite on it to show me she also wants me to brush her teeth for her.
Both my husband and I are dancers, and when she watches us teach a class and dance at the end of it, she would watch, and clap her hands right after. It’s the most amazing feeling.
I am blessed with many beautiful perfect moments with my baby girl!
6. What are some tips or advice you would like to share with other mummies who are also going through the same journey as you?
Stay positive, but don’t disregard your fears and the trauma you’ve experienced if you’ve witnessed your child go through hell to survive.
Stay strong, but allow your heart to be softened by how happy your child is despite their condition.
Above all, find ways to stay confident in your parenting, remember every child is different and all my baby wants, is her mama to love her, and show her how to love herself.
