A day in the life of a special needs parent

The first words out of Jack’s mouth bright and early yesterday morning were ‘Billy sore’, and that set the tone for the day. As the parent of a child with special needs, some days are extra hard. Yesterday morning I cared for a very tender little boy who wouldn’t be put down, I cleaned his PEG site and did my best to keep him comfortable during his ‘breakfast’ tube feed and the morning rush with his brother. We all hopped in the car (cue tears from Jack as the buckle sits right on his tender belly) and dropped James at school, before heading home to do Jack’s ‘morning snack’ tube feed at 10am. We then hopped back in the car and drove down the hill to his feeding therapy where we spent almost 1.5 hours trying to get my strong-willed toddler to sit down and participate in oral motor activities such as licking a sprinkle from my finger. During this appointment I also gave his 'lunch' tube feed, which I'd frantically prepped before leaving. I then drove back up the hill with a very tired and restless Jack, whose eyes closed just 5 minutes before we pulled into the driveway. An unsuccessful transfer meant he woke up just enough to need mummy cuddles and wouldn’t be put down in his bed for fear I might leave him – a result of his medical trauma. Finally, he fell deep enough asleep to be placed down in his cot, over an hour after his usual nap time. I went straight into my office and worked as quickly as I could to upload his NDIS payment requests and do the bare minimum for my business to keep it running another day. At this stage I realised I hadn’t even eaten yet, but there was no time for that. I then had to rush to the post office before school pickup, but thankfully Jack’s support worker Gemma came so I didn’t have to wake him (any other day he would have been whipped out of bed and dragged along with weary eyes.) When he woke, she did his ‘afternoon snack’ tube feed, messaging me to say the poor thing was pretty sore and unhappy. Meanwhile I picked James up from school and took him to dance class. While he was there I went to the shops to get supplies for dinner, and finally walked back in the front door at 430, asking Scott to pick up James on his way home from work. Gemma left, then Jack developed a fever. I cooked dinner while Scott showered the boys. During his ‘dinner’ tube feed, Jack’s PEG started to weep and was even more noticeably red and raised than earlier. I took a photo to send to his home nurses, knowing that would likely bring a trip to hospital the next day. We spent the last 30 minutes of the boys awake time - as we always try to do - sitting on the couch as a family reading and watching a movie, before Scott took on Jack (it was his turn for the lengthy bedtime settling) and I tucked in James. I showered and then returned to my office to pack and process outstanding orders, reply to emails, note down some questions for Jack’s immunology appointment on Friday, and organise meetings for an upcoming fundraiser I’m coordinating (while trying to avoid looking at the pile of paperwork, the stock that was desperately running low and the to-do list on my desk). After finally emerging from Jack's room, Scott cleaned the kitchen and packed school lunch for James. We finally sat down on the couch at 930, knowing too well we should instead be hopping into bed given Jack would likely wake almost hourly overnight as had become his normal. Instead, I realised I should really be giving him a ‘top-up’ tube feed, which is the plan when he doesn’t drink much orally throughout the day or is unwell. And then shit, I remembered we had to do the census. So we did that together, before finally crashing into bed with nothing left to give.

Yesterday I was reminded of the saying “Everyone wants to hold the baby, but who holds the mum?” I’m so thankful for NDIS and the support we are receiving for Jack - the funding allows us to help him to thrive. But his therapies are fortnightly, and in between that it is my role and my responsibility to provide that therapy to best help him develop and learn. Instead, I’m struggling to manage even the basics each day. And there really is no solution. Financially, I have to work. We can’t afford to live off the $130 I get from Centrelink each fortnight as Jack’s full-time carer. Yes, $130. My business doesn’t make much profit, but it is my passion and my creative outlet – I don’t want to give up something that keeps me grounded. We only have funding for 2 hours per week for Jack’s support worker, which is absolutely nothing when I think of how much support we truly need. Even if I have a day ‘off’ where my Mum has Jack, I'm either working as a nurse or on my business. Sometimes I wonder if I’ll ever ‘thrive’. But my biggest sorrow is the lack of time I have to just be Mum to my boys. I don’t want to look back on this fleeting time in Jack’s life and feel sad that I missed out on so much of his innocent childhood or regret that I didn’t have time to just sit down on the floor and play with him. 

I don’t want sympathy or pity because our lives are not any ‘less’ - if anything they are ‘extra’. Even on the hardest days, Jack brings a joy and a beauty to our lives that only he could...his happiness through the fire is his trademark - it has quite literally changed my outlook from 'why us?' to 'why NOT us?!' We didn't choose this journey, but it chose us, and (while it's not bloody easy) I wouldn't change it for the world. But I do want others to understand, in some small way, what it means to be the parent of disabled or special needs child. Because before I was one, I had no freaking idea. And now, I want to give permission for others to share, to feel, to truly be seen. While the posts I write each day are mostly positive and I celebrate Jack’s differences so fiercely, there are still days like yesterday…and they are not uncommon. You’ll see us get back up again and keep going almost as if we are unaffected – but we simply have no other choice. These additional needs of our children don’t go away, even when we are quivering on the inside. As I write this, I'm mentally preparing for the emergency appointment and ultrasound we now have at the hospital first thing tomorrow, with a lump in my throat as I imagine how traumatic it will be. We get pretty damn good at adjusting to the storm and finding a new level of strength to get shit done, but it's ok to take off the brave sometimes. It's ok to be happy, hurting and healing all at the same time. It's ok to fall apart, to be scared and to ask for help. You've been brave for long enough. In the words of Brene Brown: "Vulnerability is not weakness; it's our most accurate measure of courage."