It’s so easy to take life for granted. The basic things like walking, talking, eating, coughing, getting enough oxygen. I don’t know about you, but I certainly get caught up in my bubble world – complaining about the weather, or that the house is a mess, or that the kids are being brats.
Sometimes a healthy dose of perspective is in order to make us appreciate everything we have. Mine came in the form of an inspirational Wandana Heights mother, 29-year-old Bek Seabert and her beautiful five-year-old daughter Tulli.
Tulli was born with a severe disability, which in a nutshell, prevents her from walking, talking, eating and controlling her body movements. In fact the medical profession can’t put a name to her condition. Bek likes to refer to her affectionately as “One of a kind”.
The bond between these two is unlike any mother-daughter relationship I’ve seen. It’s instinctive and transmitted through feeling. Their love for each other is palpable.
Bek decided to start sharing her daughter’s precious life story through a Facebook page called “In Tulli’s Shoes”. The page celebrates the life of the little girl with the 1000 watt smile and also highlights the challenges she faces, which are incomprehensible for most of us. Bek also wants to use the page to help raise awareness about disability in general.
She is adamant that her and her husband, 34-year-old Trav Seabert, do not want sympathy for their situation. In fact, it upsets them the most if people say, “I’m sorry” as if Tulli’s condition is a tragedy.
“To us Tulli is the beautiful soul she was born to be and we feel grateful to be her parents,” says Bek.
I met Bek pre-children, when she came to me for singing lessons years ago – a quietly spoken, gentle soul, with the face and voice of an angel. I’ve managed to keep tabs on Bek’s life through the wonder of Facebook, so I was rapt to finally meet gorgeous little Tulli in person.
A: I love watching you two together. There’s such a connection.
B: I just look in her eyes and I see her spirit. She may not be able to communicate in the way most of us are used to, but I know everything she feels. She is so cheeky. Her eyes and smile let me know everything she’s thinking and feeling.
A: Tell me about Tulli’s personality.
B: She’s a very social girl. She loves people having fun with her and she really loves being the centre of attention – if she’s not getting the attention she wants, she will yell until she gets it.
Music is a big part of her happiness; she really loves it if you sing to her. She also loves animals, doing paintings, art and craft and swimming.
Sometimes just being near her makes her smile. For instance, I walked into her room this morning and she wasn’t quite awake but when she opened her eyes she instantly gave me one of her beaming smiles. Melts my heart every time.
A: Can you tell us a bit more about Tulli’s condition?
B: It’s quite a list … in medical terms she has:
– Ebstein’s Anomaly – a rare heart condition.
– Microcephaly – a small head.
– Brain anomalies, (two parts missing).
– Hip Dysplasia.
– Stabismus a condition where the eyes are not properly aligned with each other.
– Severe GORD reflux.
– Oral aversion and is feed via MIK KEY button Peg.
– She has low muscle tone.
– No verbal language.
– Global developmental delay, very delayed in gross and fine motor skills.
A: Were you aware of Tulli’s disability before she was born?
B: No not at all, at 20 weeks we were told she had a small head but no alarm bells.
I had an unexplained band around the amniotic sac that made it looked like I was having twins. Because of this, I had to have a caesarian four weeks early.
When she was born the pediatrician picked up on a background noise in her heart, and hip dysplasia. From six weeks everything started to change. There was literally something new to deal with each week. Then the seizures started. An MRI showed that part of her brain missing and part underdeveloped, the rest all unfolded from there.
A: It sounds like so much to comprehend as a new mother. How did you wrap your head around it?
B: It was a lot to digest, at the time I think I was in denial. There were so many mixed emotions. I thought her problems could be fixed with operations and lots of therapy sessions but as time went on we learnt so much more about a beautiful baby girls future. During all this devastating news, a little personality was emerging and it was then that we realized that Tulli is Tulli – before her challenges. It was hard at the time but we just took one day at a time (and still do) and with our amazing support network, we get through our challenges together. She is always smiling, but hides some big struggles.
A: I imagine a good support network would mean the world to you? I seriously don’t know where we would be without our amazing team.
B: Firstly, Trav my husband … Oh golly! Words can’t describe what a support he is to me and what a beautiful father he is to Tulli. He is up most nights with me attending to Tulli and still gets up to go to work every day. He manages to find strength and energy when I’m struggling and somehow he keeps things together when I can’t. He makes our crazy hectic life be as normal as it can be. It takes a lot of strength sometimes to walk our journey, but with Trav by my side, it all becomes easier to face.
My mum and dad and Trav’s mum and dad couldn’t be any more amazing. From day one, without question they all became ‘Team Tulli’. I now fully get the saying “It takes a village to raise a child”. They are by our side at the drop of a hat. The situation has definitely brought us all closer together than ever. We can ring them anytime day or night and they’re there for us … often just for a good old cry.
The staff at Geelong Hospital Heath Wing 3 are like family. They go above and beyond. They always come in and chat to Trav and I to make sure we are coping. Last year we were pretty much in hospital every two weeks from May to November. We can stay in there but the nurses are so good and tell us to go home sometimes for a break. Regardless, I would be in there from 6.30am until 9.30pm at night.
People’s generosity and caring natures have astounded me at times. For example, the kinder mums (we only went for a month) organized a Tulli meal train and started a roster where they brought us dinner (with dessert) every Monday and Wednesday for a whole year.
Friends have organised fund-raisers for us so we could afford a car that could be converted for a wheelchair.
We were even nominated by two specialists to get a wish from the Make a Wish Foundation. Tulli received a bedroom makeover complete with sparkling stars on her ceiling that she loves to lay and look at.
A: What’s a typical day in the life of Tulli? (laughs)
B: Unfortunately there is no such thing as a typical day – they are all so different. Basically we just wake up and see what the day brings and literally take it hour by hour – that’s how fast the situation can change.
If she doesn’t get enough sleep (some nights she wakes at 12.30am and doesn’t go back to sleep), then we have to be on high alert for increased seizures.
Tulli needs assistance for everything – feeding, mobility, dressing, you name it.
She is on a number of medicines throughout the day – six in the morning, three at lunch, one in the afternoon and eight at night time. These are all administered through her PEG tube, which is a neat little button in her tummy. She is also fed through the PEG tube, as we can’t put anything in her mouth due to her challenges with swallowing and inability to clear secretions – we have to have suction available on standby all the time.
Most days we have appointments to attend with things such as occupational therapy, physiotherapy, speech therapy, dietitian and specialist appointments – either in home or at the Geelong hospital or the Royal Childrens.
She also goes to school two mornings a week for two hours and absolutely loves it … I think she gets sick of my voice (laughs). She has a personal carer with her all the time monitoring her health and helping her with painting, craft, music and group time.
We have to be constantly on alert for seizures as she has a number of them daily.
If she has a seizure longer than five minutes or three seizures longer than a minute in an hour then it’s a trip in the ambulance including emergency meds to stop it turning into a really long seizure. Once we’re in hospital, it’s generally a week’s stay.
At the moment she has been on oxygen 24/7 so she is always connect to a cylinder or machine to help her breathe. I must admit, some days I feel a little like a nurse, but you just keep soldiering on, because if we didn’t, I don’t even want to think what might happen.
Our house is literally like a mini emergency department with all the equipment and medicine we keep on hand.
A: You have such a calm demeanor, how do you cope when the going gets tough?
B: (laughs) I certainly don’t feel calm on the inside. I get through with the help of chocolate, wine and more chocolate. And nothing beats a good cry with my mum … you’re never too old to need your mum. I also love music and I find singing calms me down – and Tulli loves it too, which is a bonus.
A: What do you want people to know about disability in general?
B: I really want to say to people, “Don’t be awkward!” See past the disability and talk to the person. They want to interact with you. They may not be able to chat back but they love to be treated like anyone else.
The other thing I would say is “please be kind”. I had a horrible experience once where I was in a shopping centre and a mother pulled her child away from us and said, “We don’t talk to people like that”. It was heartbreaking.
A: Do you get time to yourself and if so, how do you like to spend it?
B: I can never do anything spontaneously; it always needs to be well planned, as Tulli needs to be cared for by people who are trained specifically. My favourite things to do would be going out for dinner with Trav, going to the theatre, I’ve always loved a good shop and I really love to sing.
I’m a hairdresser by trade so I still do a few friends from home. It’s a nice escape to have some adult conversation, and my friends understand if I have to dart out to attend to Tulli.
A: Speaking of singing, I would like to let everyone know that your voice is one of the prettiest voices I’ve ever heard and everyone needs to hear it. Can I talk you in to performing one of these days?
B: (laughs) I would really love to, I must admit I feel most at peace when I’m singing. My aunty dobbed me in to the Piano Bar and they have asked if I’d like to do a show there. It sounds a bit terrifying, but I’d secretly love to.
A: Right that’s it! I’m booking it in and all the GCK readers are going to come along to support your first ever show!
B: (laughs) Aaargh! OK, but I better come back for some lessons first.
A: And finally, what has Tulli taught you?
B: Soooo much! That life is a beautiful, cruel thing. That behind some smiles, people are fighting some big battles, so be kind to everyone you meet. Not to take things for granted, the small things, everyday things, your health. She has taught me that there is always something to smile about and most importantly to keep positive. And to BREATHE! Although we take things day by day, at times we have to take them hour by hour or even moment by moment – that’s when all I can do is focus on the next breath.
I was just reflecting with Mum the other day about the fact that when I was young I used to look at down syndrome people and think, I want to look after you when I’m older. I like to think that Tulli was sent to us for a reason.
It’s a long and hard journey but we love and adore our beautiful girl. We feel blessed every morning to wake up and have her in our lives because it’s an extra day of creating memories with her.
Follow Tulli’s journey at ‘In Tulli’s Shoes’ on Facebook.