Welcome beautiful Naomi & Abbie
Natalie: How did your special needs journey begin? (What was going through your heart & mind during this time)
Naomi: Our journey began when Abbie was about 5months old. Despite having inner concerns about Abbie’s development from birth it only became apparent as she developed and was not reaching her milestones. At the time our paediatrican did not have any serious concerns as Abbie was alert, social and responsive however physically she was lacking. At 9months we had a brain MRI and this is where our world crumbled around us.
Natalie: What is the name of the condition that Abbie has? Can you share with us a little more about it?
Naomi: Abbie was undiagnosed until she was 10 years of age. Despite her brain MRI showing malformation of the brain a diagnosis, although suspected was not confirmed until she turned 10.
Her diagnosis is Congenital Bilateral Perisylvian Polymicrogyria. This translates to: Congential – from birth Bilateral – both sides of the brain. Abbie has global developmental delays. She has severe oral and verbal issues and epilepsy. Perisylvian – a specific area of the brain which predominantly controls oral motor function (speech and feeding). Polymicrogyria – many small folds in the brain
Abbie has global developmental delays. She has severe oral and verbal issues and epilepsy.
Natalie: Abbie has a yonger brother Eric, I know siblings can be a wonderful source of inspiration and connection. Has there been some extra special moments together?
Naomi: Abbie was 6 years old when Eric was born and from the moment they met there was a special connection.
Eric has grown with a unique understanding and compassion towards those with a disability. Abbie is ‘non-verbal’ however vocal and Eric understands most of what she is saying. The connection is one to be observed to truly understand. It can not be put into words.
Natalie: It can be extremely isolating for a Mother going through this journey, and family and friends can struggle with how to best respond. Do you have any advice?
Naomi: My advice to family and friends of parents with special needs is to be patient, don’t pull away. Just be there. I lost many friends when Abbie was a baby. Some of which was a result of me pulling away and some – my friends pulling away. I was lost at the time and withdrew. Not something I would advise for anyone to do. Friends and family support will provide strength when you feel you have none.
My advise to the parent is to reach out and ask for help. Ironic coming from me because I have a strong tendency to retreat and not be forthcoming to ask for help. This is a personal habit I’m working on breaking, however old habits die hard. I would definitely not recommend anyone to retreat or refrain from asking for help.
Natalie: How can we help other Mums going through similar situations?
Naomi: It is often impossible to put into words the feelings a SN (Special Needs) mother experiences during our journey. The one thing I find most helpful is knowing I’m not alone. The isolation prior to Abbie’s diagnosis was unbearable. Following her diagnosis in 2010 I found a small network of parents across the world with children with the same diagnosis. For the first time in 10 years I didn’t feel alone. There were acutally other people out there experiencing very similar journeys and feelings to mine. It was enlightening to reach out to these mothers. The best way to help another mother is to be there. Listen, hug, love, support….just be that friendly ear and shoulder to cry on in times of need. It is invaluable to have someone who just ‘gets it’. Isolation is a cruel and torturous feeling. Being able to reach out to a newly diagnosed family is of very high importance to me. It is something I lacked in the early days and I wished I had had. To reach out is to help.
Natalie: I’m passionate about the special needs and self care connection. The special needs journey can bring some big challenges, how did you fill your cup during those times? Are there any self care practices that helped you on your journey?
Naomi: My biggest focus and the one thing that keeps me going is being thankful for what I do have. There are many families and individuals facing far worse challenges than I. Despite our battles I am constantly thankful for what we I do have.
Natalie: What are some lessons and blessings you have learnt since becoming Abbie’s mum?
Naomi: I could go on for pages and pages with the lessons and blessings I have learnt since becoming Abbie’s mother. The few that stand out and come to mind is firstly to be thankful. Don’t take things for granted. Life is a miracle and a blessing. Being a mother of a SN is a challenge but also a blessing. I am thankful.
Natalie: What pearls of wisdom do you want to share most with Mum’s who are at the beginning of their special needs journey?
Naomi: Firstly – you are not alone. Reach out to those around you. Rest and recharge when you can and ….breathe!
Natalie: Do you have a favourite quote, prayer, or piece of miracle inspiration that you would like to leave us with?
Naomi: I have a number of inspirational quotes. My latest one :
“Keep on walking through your storm. Your rainbow is waiting on the other side.”
Natalie: Thank you Naomi for sharing your motherhood story, it’s an honour. Abbie is such a beautiful and strong young woman and so lucky to have you as her mum. What a huge journey and especially given Abbie was undiagnosed for ten years, that must have been extremely challenging. What a brilliant insight in giving thanks and seeing life as a miracle and a blessing. I also loved your advice to family and friends to be patient, especially around the times mums are coming to terms with their child’s diagnosis, as its very difficult time.
I first connected with Naomi via a Facebook group as our daughters share the same offical diagnosis of Congenital Bilateral Perisylvian Polymicrogyria. Having walked the road for many years before me, she was an absolute pillar of strength and support. One of the greatest blessings of the special needs journey is the incredible community of families that you meet, Naomi and her family are a perfect example of this.
If you would like to share your miracle moments and special needs journey, we would be honoured to share your story.
Please get in touch here.
“Uniting our stories across the globe”.