Hi my name is Heather based in Australia, I am the proud Mum of Arianna and Erica . My second child Arianna is a special girl born with a rare genetic overgrowth syndrome which makes her bones grow super tall for her age. She is still only 4 months (as of the time of writing) and also may have a neurological condition but we are still going through all the testing at this time. She is a unique baby who sleeps a lot, suffers from vomiting but is very alert and has large beautiful eyes. We have a facebook page called Arianna’s Army where we share her story with the world.
Welcome beautiful Heather & Arianna
Natalie: Having a child with a diagnosis, condition or disability can be life changing. How did your special needs journey begin?
Heather: The Dr’s did a scan at 37 weeks and found an enlarged ventricle in the brain. I was freaked out and am naturally anxious anyway. I had a feeling we were about to start a journey I didn’t want to go on, but family members tried to assure me it would be ok. The Dr could only say it can be linked with many things or be nothing. A social worker was at the birth with me and we elected to have her early. When she was born and she was examined by a specialist pediatrician who noted she had low blood sugars and suggested that she be transferred to Sydney’s Randwick NICU hospital to be further examined. We have had mis-diagnosis, a barrage of normal tests which then when re-done didn’t come up normal and we are still going through the diagnostic stage.
Natalie: What is the name of the condition that Arianna has? Can you share with us a little more about it? What are your greatest worries and also your wishes & hopes for Arianna?
Heather: Arianna has suspected Weavers Sydrome and Polymicrogyria with CP (cerebral palsy). Weavers makes her exceptionally tall, lack hunger and sleep through feeds. If she just had Weavers she would live a very normal life but alas this is unlikely. Weavers is extremely rare and there have only ever been 50 cases ever recorded. Polymicrogyria with CP makes her hypotonic (floppy) and causes her gastro problems at the moment with vomiting. I have many worries for Arianna – will she sit up, crawl, walk, talk or communicate at all, be happy, responsive, live a short life etc. Wishes. I wish she be happy, loved and connect with us and reach her full potential movement and communication wise. I wish she won’t be in pain. I know she will change the world – my world at least. I hope her life is one of quality, if not quantity and she will be loved!
Natalie: I see Arianna has a big sister. Siblings can be a wonderful source of inspiration and connection in the special needs journey. What have been some miracle moments between Arianna and her sister?
Heather: Erica is 3 so has no understanding of Arianna’s condition. She accepts and loves her unconditionally and just wants to cuddle and kiss her all the time. The issue is more her smothering her with attention and with Arianna having a tube down her nose this can be hard plus a bit overwhelming for Arianna. Arianna always looks and follows Erica in a room. She will be an amazing teacher for Arianna and best friend I am sure. Arianna will in turn teach Erica and all of us more than I currently understand.
Natalie: I’m passionate about the special needs and self care connection. The special needs journey can bring some big challenges. How do you fill your cup? Are there any self care practices that have helped you on your journey?
Heather: Sometimes I don’t. I have to be honest. At times the grief associated with a special needs child and the challenges ahead are overwhelming and it is very hard. It is still very early for me on this journey and we still don’t know what Arianna’s challenges will be or how our life will change and support her. I think trying to focus on what I can do to help her, helps me. Spending quality time with my other daughter fills my cup and also connecting with other mums. Other special needs mums have been the best support for me, as they understand how I feel.
Natalie: What are some lessons and blessings you have learnt since becoming Arainna’s mum?
Heather: Some tough ones to begin with. That a normal MRI doesn’t mean there isn’t severe brain damage. That a normal genetic micro array doesn’t mean there isn’t a genetic syndrome. That Dr’s don’t have the answers. That rare syndromes collectively, are not that rare. That being a special needs mum makes you special and inspiring, just by taking this journey. The commonality with special needs mums is amazing – we all love our children unconditionally, regardless. We all worry about things no parent should ever have to worry about. But we take one day at a time and we do it for our children. We become stronger through the journey. Some things get easier. Some things never get easier I think. I don’t think you ever stop wishing your child didn’t have these challenges and perhaps life could be easier… But the pain is there, because the love is so strong. If you didn’t care, you wouldn’t feel the pain. The bond to help and support is inbuilt and you meet amazing parents along the way who have all faced the same challenges and get through it.
Natalie: What pearls of wisdom do you want to share most with Mum’s who are also at the beginning of their special needs journey?
Heather: I am at the beginning of this journey myself so probably not the best to impart this wisdom yet… Perhaps just that there is a group of special needs mums out there for you anytime you need who will help you feel like you are not alone, regardless of what your child has and though we may all have different challenges with our children, often they are similar/the same. Mobility, Feeding, Non-Verbal/Communication challenges. You can find them on Facebook. You will learn more from them often than the Drs and specialists. Take it one problem and day at a time and the love will get you through.
I did however share this on a FB group to support a mum who was upset her child was so developmentally delayed and asked for support on dealing with this. I had been thinking about this myself, as I anticipate this is going to happen possibly greatly for Arianna.
“I try to think of our children as flowers taking longer to bloom. Each flower with it’s own timeline. Some need more care and attention and a lot of sun. Some take so long to bloom….but there is more beauty in their unfolding petals…I am sure there is a poem in there somewhere but our kids are all beautiful flowers that are just taking longer to bloom… Because of that we enjoy the journey and try not to think too much about the destination…”
She wrote me back telling me she loved this analogy, it was so beautiful, touched her and really helped her to see her child positively and enjoy the beauty of the unfolding petals….
It made me feel so good to help another mum who is on this journey as I work through my own feelings. Another way I can turn Arianna’s life into something very positive. I will turn this into a poem. It’s such a hard journey and I need to take my own advice and enjoy Arianna’s unfolding petals… she has been reaching for toys and taking interest in playing with them and it is beautiful to watch her learn about the world in her own sweet way…
For those without special needs also can I encourage you also to stop occasionally and watch your child’s unfolding petals too…they pass quickly…
Natalie: Do you have a favourite quote, prayer, or piece of miracle inspiration that you would like to leave us with?
Heather: All that matters is love and kindness.
Natalie: Thank you so much Heather for sharing your journey with us, you were the very first interview for the Miracle Mama Community, so thank you for leading the way with an open heart. Your journey feels quite similar to mine, both having two daughters, the youngest with additional needs, including Polymicrogyria. Erica and Ari are such strong and beautiful girls and watching Ari defy the odd’s is a testament to the love and care you provide. Inspirational!
“I try to think of our children as flowers taking longer to bloom. Each flower with it’s own timeline. Some need more care and attention and a lot of sun. Some take so long to bloom….but there is more beauty in their unfolding petals…I am sure there is a poem in there somewhere but our kids are all beautiful flowers that are just taking longer to bloom… Because of that we enjoy the journey and try not to think too much about the destination…” – Heather
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.
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