• The Harlie Russell Team

The Mum Diaries

Since Harlie came into my life, I became a different person. I'd like to think it's in a good way. I've faced challenges I wouldn't wish upon anyone, had life changing news handed to me, good and bad, but have experienced some of the most incredible moments that have reduced me to tears.

The day I discovered Harlie had cerebral palsy was one I will not forget in a hurry. It was not the day she was diagnosed, it was 7 months earlier. Harlie had a doctor appointment to check on her progress since she was 2 months premature. This was just a regular check up. She had not long turned 1 and still couldn't sit, crawl or talk but the doctors had long put it down to her prematurity. My gut always told me different but I went along with it since they wouldn't listen to me. The doctor had finished up his examination but decided to check Harlie's reflexes before we left. She had none. Her elbows and knees barely flinched when prompted. Her normally cheerful doctor suddenly changed his expression to concern. I'd never seen him like this and I knew it wasn't good. He began asking me a series of questions about Harlie. I answered as if nothing was wrong but inside, I was panicking.

When we finally arrived home, I did the awful thing that everyone tells you to never do. I Googled it. I searched for all the things that the doctor had questioned me about and everything else about Harlie that wasn't "normal" for a 12 month old. Millions of hits flooded the computer screen for cerebral palsy. I don't know if I was actually breathing as I read the first line. It was the most bizarre feeling that washed over me. I was completely terrified but in an odd way, I was relieved. I felt like I finally had the answer to the questions no one seemed to be able to give me. I sat with Harlie on the couch and held her tighter than I have ever held her before and cried. Boy did I cry. A million thoughts filled my head. So many "what if's" but mainly why. Why my little girl? Why is this happening? What could she have possibly done to deserve this?

To be honest, I've never been able to answer these questions. I may never be able to answer them, but they have become less important over the years. Some days they haunt me, other days, I don't care. At the end of the day, I have Harlie. I can hold her, I can talk to her and she talks to me. She tells me daily that she loves me and that's the best part.

The challenges we have faced have been many and we certainly have many more to come. But I think Harlie and I have become quite the team. We understand and respect each other. That's incredibly important because we are both learning. Most parents are able to teach their children the important skills required for life, but Harlie teaches me things no one else ever could. I am still learning new things everyday about cerebral palsy, about how to adjust a wheelchair, how to be resourceful when it comes to meeting her needs. It's a crazy ride, but I have the best partner in crime by my side.

I regularly encounter friends, family and even strangers saying, "How do you do it?" I actually don't know. But it's our normal so I don't know any different. I don't know how some parents cope with having more than one child! I think that's amazing and I don't know how they do it. But there are days when I struggle. A lot. Days when I wish life was different. Easier. What I would give for a boring life.

A somewhat typical day can look something like this:

When Harlie wakes up, she yells out, "Mum!" This turns the baby monitor on that I still have next to my bed 7 years on because she can't get out of bed to wake me if she needs me. I drag myself out of bed and start unstrapping her leg wraps and night splints to take them off her legs. Then I drag the toilet chair into the bathroom and return to get Harlie. I pick her up and sit her on the chair. Next, breakfast. I pick up Harlie and carry her to her $4,000 desk and chair set specially designed for her and strap her in. I make her breakfast and place it in front of her with a special spoon that rotates as she eats so the food doesn't fall on her. That's my chance for a shower.

Once Harlie is finished breakfast, I unstrap her from the chair and carry her into the lounge room. She has a chance to watch TV or play letter games on her iPad. This is when I can make lunch and maybe throw down a quick coffee. It's either that or toothpicks to hold my eyes open. Next is getting dressed. I gather Harlie's school uniform, socks, orthotics, runners, hair brush and hair ties in one because I don't have time for more than one trip to the lounge. I lay Harlie down to begin dressing her. This can take around 10-15 minutes just to get her dressed. Once she's dressed, I pack up her pajamas and start preparing to brush her teeth. Because Harlie cannot stand in a bathroom or reach the sink, I fill a cup with water, prepare her toothbrush and grab a tissue. I brush her teeth and she rinses her mouth into the cup. Then I have to clean it all up and start packing the car. First her bag, that's the easy part, then her wheelchair. Since I only have a single car garage, her wheelchair doesn't fit beside the car. I have put the roller door up race back through the house. I can guarantee by this time we are running late as usual. I open the front door and lift the wheelchair outside. I run it around to the garage and lift it into the boot. Then I run back around to the front of the house to close up the front door. Time for Harlie. I lift Harlie, carry her to the car and strap her into the baby seat as she still needs a 5 point harness, not just a regular booster seat. This whole process has taken almost 2 hours, I haven't eaten breakfast and I have a half finished cold coffee sitting on the counter. Sigh.

Once we get to school it's lifting out the wheelchair again, unbuckling Harlie and setting her up for the day. Finally some me time. Well, I grab a quick coffee and head home to the never ending To Do list. Before I can, the phone starts ringing. The new backrest for her wheelchair is on back order and will take another 5 months to arrive so I need to schedule an appointment to adjust her current one. They are only available on Friday but Harlie has 2 hospital appointments on Friday. Do I put off making her wheelchair comfortable or attempt to reschedule 2 hospital appointments? I go for comfort. I phone the hospital. I'm on hold for 15 minutes. When they answer I'm told there are no available appointments for the next 4 months. Is that ok? Is it? Whatever. It's 9.30am and my care factor is long gone.

My emails pop up and it's an organisation wanting my financial records to prove I need assistance to pay for Harlie's new standing frame. I shuffle through piles of paperwork and begin to scan and send them through. While I do this, the phone rings again. The school are letting me know I haven't paid for Harlie's upcoming excursion yet. I completely forgot. Again. "I'll sort it today" I tell them. That's a lie because I know I'll forget.

A letter arrives in the mail and it's another appointment for Harlie. But it clashes with one she has had scheduled for months. Another phone call to reschedule. But the phone rings again and the NDIS want to know when is a good time to start a pre-planning session? When? 4 years time thanks. I think I'll have a spare 2 hours then.

It's 1.30pm but I haven't had breakfast yet and lunch is going to have to wait because I need to pick up Harlie early for her gym sessions yet I need to allow time to get fuel for the car so we can actually make it there. I pack a change of clothes and drink bottle for her and hit the road. Once at the school, I buckle Harlie in, lift the wheelchair into the boot and off we go. We arrive at gym, unpack the wheelchair, again, set Harlie in the chair and race inside.

We finish up the session, I buckle Harlie into the car seat again, lift the wheelchair into the boot and realise I have nothing organised for dinner. To the shops we go! This is always a bad idea since I'm starving by this point and will literally eat the first thing I see. We arrive at the shops, I unpack the wheelchair for what seems like the 100th time for the day, place Harlie in the chair and head inside. Now for a decision. Do I push the wheelchair and a trolley, or carry a shopping basket hoping it doesn't get too heavy since I still need to push the chair with my other hand. Basket wins. We race around the store because it's now 4.30pm, I'm exhausted and we're still not even close to the day being over yet. Everything gets piled back in the car and we finally head home. For the last time, I unpack the wheelchair, back through the front door, carry Harlie inside and set her on the lounge. I unpack the groceries and start making dinner. But Harlie needs to go to the bathroom. I set up the toilet chair and run back to the lounge for Harlie. Once she is finished, I take her back to the lounge. It's now 5.15pm. I'm beyond hungry. I will settle for a bottle of wine and a comfy chair.

My friend sends me a text asking if I want to catch up tomorrow. I do. I really do, but I know I don't have time. Nothing on my To Do list was even attempted today so I will only be pushing things further down the list. But I need to. I need to sit down with a friend and forget about my life for an hour. I need this or I'm going to snap. I say yes and sigh wondering if I'm going to regret the decision by this time tomorrow when I'm further behind than today.

Dinner is ready so I carry Harlie to her special table and strap her in. I'm to exhausted to help her learn how to use a knife and fork tonight so I let her use her fingers. It's just easier that way. I'll do it tomorrow, I promise. After I clean up dinner, I drag Harlie's toilet chair into the shower and turn it on. I carry Harlie to her bedroom to get her ready for a shower. I carry her into the bathroom bending so far to sit her in the chair I feel my poor back screaming at me to stop. I have no choice. "Keep pushing" I tell myself. She finishes her shower and I lift her out of the chair which is possibly more painful than before and carry her back to her bedroom. I dress her for bed and do her hip and leg stretches she needs to do each day. She doesn't want me to do them but I have to. I tell her I'm sorry but if you want to walk, we have to do this.

This is the part of the night when I start breaking. My back is killing me, the bags under my eyes are darker than yesterday, I realise I still forgot to pay the school for the excursion, I should have bought milk while I was at the shops earlier and I left the shower running. If only I could switch my brain off as easily as the shower. I tuck Harlie into bed and she tells me she loves me. "You're the best mum in the whole world" she says as she pulls me in to kiss my forehead. A minute earlier I was ready to give up on everything, throw the towel in, pack up and move to the middle of nowhere or at least flush my phone down the toilet and pretend this life didn't exist, but now, I know every single minute of today has been worth it. This incredible little girl smiling up at me has flipped my world upside down and it drives me insane, but this is why I do it. This moment when life stops for just a few minutes. I don't need to run around or answer my phone, or lift another thing, I can just sit with her. We talk about her day, we tell each other jokes and she tells me how terrible mine are. I pretend to be asleep and she tickles me to wake me up. She squeals with laughter and that makes everything better. Suddenly I don't care what happened today. I don't care that we were late, or that I missed a call, or that I didn't have time to brush my hair. I have this moment and nothing can take that away from me. I have Harlie's soft little arms around me and nothing can compare to that feeling.

Yes, I wish life was different. I wish it was easier, but it is what it is and there's not a lot I can do to change that. I've lost friends over the years because I haven't been able to share my time with them. I've spread myself very thin but I don't have much of a choice. We are often late and I'm usually forgetful. Sometimes I don't return calls or texts not because I don't want to, but I honestly haven't had the time. Somewhere in these crazy days I try to find time for myself. On the rare occasion this happens I find myself just sitting and wondering. Daydreaming I guess. Daydreaming about a different life. But I look around and smile. I've done this on my own for 5 years now and I think I've done a bloody good job so far. It's not perfect, but we're ok. It's going to be one hell of an uphill battle and there will be many breakdowns along the way. That's just a fact. Bring on the future. I've got this. I've totally got this.


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Brisbane QLD, Australia

©2017 BY THE HARLIE RUSSELL FOUNDATION LTD. Photo credits Linda Wiseman & Shaun Clifford