I’m Tessa Prebble. I live in Wellington, New Zealand and my daughter Eva died last year in February from complications of CHARGE Syndrome. My life had not prepared me for Eva. Her diagnoses left me in shock and for a while unable to see how I could be a good parent to her. Thankfully, I came to my senses and I got to enjoy Eva until she died at 10 and a half months. Since her death I have set up a podcast in her honour which interviews parents of special needs children. My aim is to create community and comfort for other parents going through the rollercoaster ride that is special needs parenting. It can be a lonely desperate place, and I wanted to create a place that showed that new parent that however they felt, someone else had been there too. The One In A Million Baby.
Welcome beautiful Tessa & Eva
(little Eva who has gained her angel wings)
Natalie: Having a child with a diagnosis, condition or disability can be life changing. How did your special needs journey begin?
Tessa: My special needs journey began when my daughter Eva was born. I knew something was going to be wrong with one of her eyes, and had already cried a lot of tears for her for the fact that she would look different to other children because she was going to need a prosthetic eye. But when she was born she was floppy and blue and needed help breathing. Because of that, and because of her eye, doctors started testing her for everything they could. She had scans and blood tests and MRI screenings. She had ultrasounds and xrays.
All within a few days of her birth. For me it was incredibly traumatic. This wasn’t how I pictured motherhood to be. I wasn’t familiar with the special needs world and I didn’t want to become familiar with it. I was in shock and I couldn’t seem to climb out of it because each day I got a new piece of her diagnosis. It took me about five months to truly come to terms with the news. I had to shed all my expectations of who Eva would be and what my journey as a mother would be. It was an incredibly difficult process, but once I had left those expectations behind the world seemed to open up in front of me.
Natalie: What is the name of the condition that Eva had. Can you share with us a little more about it? How did it impact her daily life?
Tessa: Eva had a working diagnosis of CHARGE Syndrome. She was blind and deaf, profoundly in both. She had microopthalmia in one eye and anopthalmia in the other eye. She had a hole in her heart. She had low tone and hyper mobilitiy. She couldn’t reliably feed orally so she was fed through an NG tube. She had an absent corpus callosum in her brain and she had a cyst on her eye where her left eye should have been. CHARGE Syndrome is a huge spectrum, like so many other genetic conditions, so I will never know exactly what these conditions meant for her. In her short life, they meant she was fed through an NG tube, she had raspy breathing and was hospitalised regularly for respiratory issues. She had low tone so her physical development was delayed, but before she died she had learned to roll like a champ and was showing signed of the beginnings of crawling. She was due to have cochlear implant surgery which may have given her hearing, but she died before that surgery.
Natalie: What were some of your most special moments together?
Tessa: One of the moments that rings out to me is when I first saw her smile and giggle. She had almost smiled so many times, but one day she was lying on my lap and I was stroking her face (as a deafblind baby, touch was her thing) and her face just lit up. She was blissed out and smiling and making the beginnings of a giggle.
I spent a lot of time in hospital with Eva and while they aren’t the happiest of memories, I do love the memory of Eva and I curled up in the hospital bed together early in the morning. I would make a nest for us so she couldn’t roll out of bed and cradle her head on my arm and we slept like that. It was comforting for both of us I think. Other lovely moments included bath times. Eva loved the water. I was beginning to use some tactile sign language with her and while most of them meant nothing to her, the signs and processes for the bath definitey meant something. As soon as I would start to undress her on her special sheepskin run she would start to squirm about in excitement but she died before that surgery.
Natalie: You’ve had a huge journey with beautiful Eva, her passing was unexpected and sudden. Do want to share a little more about this?
Tessa: I didn’t expect Eva’s death. I didn’t expect her to die young at all. Doctors had told me Eva’s conditions were such that she could live a long life. I guess what I mean by this is to enjoy it now. Eva only had 10 and a half months alive. We had struggles and challenges but in that time we also had laughter and love and beauty.
Natalie: It can be extremely isolating for a Mother going through this journey, family and friends can struggle how best to respond. Do you have any advice? How can we help others Mum’s in similar situations.
Tessa: I think one of the things I struggled with was that I wasn’t having that classic new mum experience and my family and friends new that and didn’t know how to respond. For me, I wanted a bit of normality. I wanted to be able to go to a playdate with a friend and her baby and have it be normal and ok. Of course, it’s not always ok, and you need support for those moments too. I don’t think there is a perfect way for a support person to act. I would say listen to them, ask them what they need. Help them in ways that are not intrusive but that allow them to be in the moment they are in, like cooking them dinner or coming round to clean the house or mow the lawn.
Natalie: I’m passionate about the special needs and self care connection. The special needs journey can bring some huge challenges, how did you fill your cup during those times? Are there any self care practices that helped you on your journey?
Tessa: I think it’s really really important for special needs parents to allow other people to be the expert on their child too. With any new parent I think it’s so important that there are multiple people who are capable of taking care of that child. Turn your friends and family into experts on your child, so that it’s not all on you. Make sure they are comfortable taking care of your child alone for a few hours and that your child knows them well enough to be comfortable too. Because if you don’t do that, and I know how tempting it is to keep that expert side just for you, especially with a medically complex child, you will find it’s all on you. You need that hands on support so that you can take a break, even if it’s just to go to a yoga class or go for a walk, or have a nap. Let your family help you and make sure you have a team of people at the ready who are experts on your child.
Natalie: What are some lessons and blessings you have learnt since becoming Eva’s Mum?
Tessa: I have learnt about diversity in a way I was ignorant to before. I have learnt that what I thought of as the “good life” is a mirage. Eva taught me about simple pleasures. She taught me about love and advocacy and acceptance. She taught me about what really matters. I used to think that special needs parents enjoyed the little things because that was all they got. They had to enjoy the little things because they didn’t get the big things so they had to make do with what they had. But I was wrong. Eva showed me that the little things are beautiful. She showed me that I could find happiness with her, that those special needs parents I was pitying were not to be pitied because they saw the world in a way I couldn’t understand.
Natalie: Is there anything you would like to share with other Mum’s who are experiencing grief after child loss?
Tessa: There isn’t anything that can make that situation better. It feels like you are walking around with a gaping bullet hole in your chest. There’s no filling that void. But know that you are not alone.
Natalie: Is there a message you want to send to humanity as a whole with regards to special needs?
Tessa: Special needs and disability are a mind set that we as able bodied people have brought into being. We are the ones who make disability disabling. It’s not the person with the special needs, it’s the world which actively works against them that causes the difficulty. We need to change that. We need the world to recognise the good in each and every person and have that world move and shift to accommodate, rather than building obstacles to make life harder.
Natalie: Thank you Tessa it’s an absolute honour and rest in peace and love sweet angel Eva. Thank you Tessa for all that you do for our community at large via your podcast. I first met Tessa & Eva via The One In The Million Baby. Little Eva captured my heart from the moment I saw her. I was shocked to learn of her sudden passing and watched on as a community united all over the world, lighting candles for Eva and supporting Tessa as much as possible. Tessa’s journey with Eva touched the lives of so many.
“I have learnt about diversity in a way I was ignorant to before. I have learnt that what I thought of as the “good life” is a mirage. Eva taught me about simple pleasures. She taught me about love and advocacy and acceptance. She taught me about what really matters”. – Tessa.
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