Running For An Angel | Chapter 4: Di
“Happy birthday to Tim! Happy birthday to you!”
The house echoed with the cheers and laughter of Tim’s loved ones who had gathered to thank God for blessing him with another precious year of life. Most days Tim has to sit to the side during meal times, but today was a special day. Tim was at the head of the table, his eyes widened in eagerness to dig into the sweet treat that had been specially prepared by his mother, Di.
“Blow out the candles Tim! Josh can you help him?” Di asked her eldest son.
With a swift blow, Josh extinguished the candles. Tim threw his head back and snuggled into his brother’s shoulder with a loud cry of happiness.
I was still living in Sydney when I received an invitation to Tim’s first birthday party. Di describes his survival that year as a miracle that was worthy of celebration:
“When Tim was born I was really surprised by his white blonde hair and blue eyes! He was a beautiful baby and seemed wise beyond his years. He didn’t cry much and there were no signs to show us that he was born with Angelman Syndrome (AS).”
“When he fell sick at 2 weeks old and had to go to ICU with a bowel infection, it was absolutely terrifying. There was one stage where they had to perform CPR on him because his blood pressure fell to a fatal level and his infection had gone septic.”
“I cannot remember how I held it together during that time but I remember crying a lot. We had so much support from our family, friends, church family and they held us up. We were surrounded by prayer, meals and someone even came and cleaned our house. If it wasn’t for everyone else, we would have fallen apart completely.”
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“Hip hip hooray! Hip hip hooray!” shouted Tim’s cousins, Emma, Lijee and Nomi.
They had travelled over 2 hours to attend Tim’s party. The three of them were the most enthusiastic cheerleaders, showing their love for Tim through song, dance and hand-drawn birthday cards. It warmed my heart to see how much these children loved and accepted Tim, just the way he is.
Unique to other children’s birthday parties, is the fact that Tim’s guest list has more adults than children. Besides his siblings and cousins, Tim doesn’t have many friends and is often misunderstood by people in the playground. Leaving the house with young children is a challenging experience for most mums, but for a Special Needs mum, the difficulties are amplified by the stares and judgement of an unwanted audience:
“Isn’t he a bit old for a pram?”
“Don’t touch him or you’ll catch what he’s got!”
“Why are you taking a Disabled Parking spot? Your family is fit and able!”
Not being able to develop deep and genuine friendships with people his age, is something Di has had to learn to accept. I still remember the family dinner the week when Di and Ed had received the initial diagnosis. I stepped into a very quiet living room, where Di was sitting on the couch, puffy eyed and surrounded by tissues as she grieved over her son:
“He’ll never get married!”
“He’ll never get to go to uni, get a job, or be independent!”
“I’ll never hear him say, ‘Mummy’ or ‘I love you’.”
Being the eldest child in a family of 8, Di has always carried the weight of the family on her shoulders. My husband describes her as the unbreakable thread that has held everyone together. Seeing her grieve so deeply over many days was humbling, because it showed me that she, like everyone else, is simply human.
According to Di, one of the greatest challenges of AS is the lack of rest:
“I never get a break. Looking after Tim is constant because he can’t be left alone.When we take him out we have to follow him everywhere so he doesn’t hurt himself. When we go to parties we don’t get to have proper chats with anyone cos we are just chasing after Tim. It’s extremely tiring. We only feel relaxed in our own home because it’s been purpose-built for Tim.”
There was one weekend when I visited Di’s home to help her with some chores. The bathroom in their old house had a big wall which divided the kids bath tub on one side, and the adult shower on the other. While bathing the kids, I took a quick peek over the wall, and to my surprise, discovered that the adult shower was in desperate need of a deep clean.
As I bathed the kids in a clean tub, I couldn’t help but wonder what walls Ed and Di were putting up for the public eye. For years I thought they were superheroes, when behind closed doors, the incessant challenges of AS were clearly wearing them down. When the kids were in bed, I returned to the bathroom and started scrubbing away in the shower, hoping that my meagre act of service could provide them with some sense of relief that night.
While Di is often labelled a ‘superwoman’, she admits that the well-meaning compliments make her feel very inadequate, especially on the days when she’s feeling the weight of mummy guilt:
“I don’t get to spend enough time with Josh and Lilli. I give too much responsibility to Josh as the older brother so that he doesn’t get to be a kid. I’m too tired to be the ‘fun parent’. Josh has to miss out on doing certain things or going to certain places, because it’s too hard for me with Tim. I need breaks from my own child and that is a constant source of guilt.”
‘How does she do it all?’ is a question I often hear, to which Di gives credit to her faith in Jesus and the power of prayer:
“I love being a mum to three very different children and be given the responsibility to raise them. I believe God has intended for me to take on this role as a way of teaching me. I’m definitely a lot more patient than I was before becoming a mum, I pray for patience all the time! My faith has allowed me to extend grace to my kids, in a way that I found difficult before to others.”
One of the hardest things about grief and loss, is when we cannot see the purpose to our pain. For Di, knowing God and being able to surrender all the unknowns of motherhood to Him in prayer, has given her a sense of peace that transcends circumstances:
“What will happen to Tim when we die? Who will look after him? Will he be taken care of? My faith has allowed me to question why God has allowed Tim to have AS, and to see it as a blessing in disguise that has shaped our family to become more like Jesus.”
“God has used Tim to teach me how to be strong in difficult circumstances and to take everything one day at a time, and that tomorrow is a new day to try again. He’s taught me that a smile or laugh can be contagious.”
“I still rage against Angelman syndrome sometimes and the sadness is still there especially when we are around other kids who are Tim’s age, but I’ve got a sense of peace now that I never thought I would have.”
When Tim was younger, he was physically affectionate with everyone, including strangers. As he’s gotten older, he’s become more reserved with physical affection, a sign that he recognises loved ones, and is capable of reserving affection for people who matter the most. Although AS has robbed Tim of his voice, he says ‘mum’ every time he points at Di, to indicate that he wants to hold her hand. He says ‘I love you’ every time he brings her in for a hug or a sloppy kiss.
Mother’s Day is a celebration of the role and sacrifices of motherhood, but this year I would like to esteem every Special Needs mother.
Thank you for braving the stares and criticism of strangers, and for extending compassion to a judgmental world.
Thank you for making our divided world a more inclusive place for those who may be different.
Thank you for showing us that every human being is worthy of respect and love.
Thank you for showing a shallow world, what it looks like to love another person without conditions.
“If there was one thing I could communicate to Tim, I would want to ask if I’m doing enough and what more I can do to help him and make his life easier. I want him to know that I would do anything for him, and look after him until I can’t any longer.”
Thank you Di, for loving Tim with such immeasurable selflessness. I believe with you, that one day you will hear him say, ‘Mum, I love you too’.
Di is Running For a Cure!
My nephew Tim was born with Angelman Syndrome (AS), a rare neurological disorder characterised by intellectual disability, delayed speech or no speech at all, seizures, a jerky walking style and a happy demeanour. Currently there is no cure.
The good news is that the Foundation for Angelman Syndrome Therapeutics (FAST) is working hard at finding a cure. There are currently 5 treatments in the pipeline to help cure AS. We believe that treatment could be possible in Tim’s lifetime.
In 2017, Di and Ed along with Ed’s sister, Jo and parents, Boyd and Mathilde, ran a half marathon and raised $16,725.17 for the work of FAST. As of today, they are still hoping for a cure and are requesting donations to be made to FAST here: https://cureangelman.org.au/
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Feature Image supplied by Milestone Memories.
