An interview with my mother Jill about her side of the story after I became legally blind
As soon as I held my child in my arms, I felt instant love. This love was different to any love I had ever felt. I knew I had a role to play. And that was to be a mother. In the face of adversity, grief and heartache, this child gave me a sense of purpose and a reason to get up every morning. He was my soul focus. I have very blurred memories of everything else that went on around me during the time of recovery from brain surgery. I don’t remember any conversations I had with my loved ones or what was going on around me. All I do remember is the focus I had on my child and questions about how I was going to do it when I launched blind intuition.
My mum mentioned that I didn’t say anything about her in the videos about what she did for me in the hospital. I told her that blind intuition was simply my account of the memories that I did have. My memories of her where the three weeks she came into our home after I got home from hospital to help get my life straightened out. I don’t remember her being by my bedside every day with my husband while I was in hospital. All I have is scattered memory about talking about a bunch of flowers and her feeding me mashed pasta. Along with my husband, she was there by my side from 7 AM to 8 PM every day. Here is her account of the story.
Sarah had put a few questions to me to be answered from a mothers perspective. Initially, I didn’t really want to do this as it was a very difficult and challenging time for me as a mum. I didn’t really want to re-live it all again as there are some traumatic memories. Mind you, there are far more positive ones, so it’s all good! It was important to Sarah that I speak honestly about my thoughts and feelings over the past seven months so here goes…..
What was going through your head when you got the phone call that things weren’t right with me?
The phone rang at 3am and I just knew it’d be Sarah and something was wrong. My heart was racing and head pounding as I flew out of bed to grab the phone. It had stopped ringing by the time I grabbed it and caller ID confirmed my suspicions that it was Sarah. I tried to calm myself down when redialling only to be told by Sarah that I had better sit down as her news wasn’t good. My first thoughts were that she’d had another stroke or something had happened to the baby. I could hear the worry in her voice as she explained that she was at the Bendigo hospital and the Dr had told her that she had blood clots on the brain. I had been worried about the deterioration of her vision for a few weeks and had suggested she see an optometrist and get it checked. Blood clots seemed possible given her history although she had been on clexane throughout pregnancy so it didn’t make sense. I honestly thought we were going to lose her and just wanted to get there as quick as I could. It was such a sinking feeling of dread. I remember being annoyed that Rex didn’t have the usual 6.30am flight out on a Sunday and first flight was 8.30am. Those five hours dragged and seemed to go on forever. The house was spotless by the time I left for the airport! I had a feeling I wouldn’t be home anytime soon so did my usual over-packing.
By the time I arrived at the airport I was calm and felt in control. Past crisis’ with Sarah have taught me to draw on an inner-strength I just seem to be able to find when needed. I felt quite confident that all would be ok and if it wasn’t then I’d worry about it then. One step at a time. The feeling of dread had been replaced with calm acceptance for whatever was ahead. Whatever happened, I knew we’d all be ok and I’d be able to deal with it. Sarah, by this stage was on her way to the Mercy hospital and I felt she would be in good hands.
What feelings went through your head when you found out I had to have brain surgery?
I found out Sarah had to have brain surgery a day after Archer’s delivery which thankfully had gone well. Sarah had come through a Caesarian and had the most beautiful baby boy, Archer. Despite the elation and excitement of his birth there was a nagging feeling about what was going on with Sarah’s brain. By this stage the Drs weren’t sure she had blood clots and Sarah was having CAT scans and MRIs to determine what was happening instead of enjoying her newborn. I remember thinking how unfair it was that Sarah and Cam had been robbed of this special time. We all take it for granted, I know I did when Sarah and Alex were born. She was 28 years old, can’t be that bad, surely? She was fit and healthy. I started thinking up worst possible scenarios of what could be wrong. Her life was flashing through my head as I tried to make sense of what was happening. As much as I wanted the operation over and done with, I’m glad Sarah and Cam were able to have 9 days bonding with Archer and for Sarah to be able to still see him reasonably well.
We were told she had meningiomas which were most likely benign. They were compressing the optic nerve hence the loss of vision. Sarah would need brain surgery sooner rather than later. I remember thinking “ok, that seems doable, neurosurgeons do this operation regularly at the Austin” I thought she’d be fine once tumours were removed. At no stage were we told she may end up losing her sight. I just thought Sarah would have the operation, all would be ok and she’d take Archer home and get on with being a mother. The Drs seemed quite confident which instilled confidence in me. At this stage I had no idea what brain surgery entailed. Me being me had to go and google it and watch You Tube clips. Hmm, much more involved than what I could’ve imagined but surgeons do this all the time so it’d be ok I told myself.
As it turned out Sarah wasn’t fine. Yes, she had survived a long and complex operation and I felt grateful for that but the payoff was she was blind. I convinced myself it’d be temporary as there was a lot of swelling after the operation. It’d come right or so I told myself. This was a very confronting, scary time for me, watching my daughter cope with all that was happening to her whilst trying to stay strong myself. I didn’t have a choice – there was no way I was going to fall in a blubbering heap. Sarah didn’t need that. Throw in a new-born baby to the mix and life was about to get interesting.
On the day of the surgery:
I don’t think I slept that well the night before surgery. By this stage Cam and I had moved into a unit close to the Austin. We were sharing care of a new-born and were both sleep deprived. The morning of surgery was business as usual which involved getting Archer ready and making sure we had everything he needed. I knew I was tired and was fuelled by coffee and not much else. I felt a mixture of feelings. Although quite calm I was also apprehensive and worried for Sarah. Cam and I didn’t talk a lot. We were lost in our own thoughts as we got ourselves and Archer ready for the short drive to hospital.
We found Sarah. I could see she’d been crying. She was scared stiff about the imminent operation and was telling Cam and I that she didn’t want to be left a “vegetable” and we were to “turn off the machine” if that happened. I think I told her that she’d be fine and she wasn’t to talk like that and to just imagine everything going well. I’d also been running those kind of scenarios through my head not that I’d let on to Sarah. From memory we resorted to a bit of black humour to help get us through the waiting to be taken to theatre time. Sarah had some lovely cuddles of Archer before we said our goodbyes. This was probably one of the hardest things I’ve ever had to do. We had to peel Archer away from Sarah. She was in tears and not wanting to let him go. We weren’t rushed at all, said our goodbyes and told her we’d be there when she woke up. The anaesthetist was the most loveliest, kind man and reassured us that Sarah would be in good hands. I had every confidence in her surgical team. Cam and I had a little sook and a hug outside theatre and went back to the unit where we were staying for the long wait.
It was such a long day but we had regular updates from the surgical team that everything was tracking ok. This made things easier. My dad was arriving from Qld today. He’d decided to come down at the last minute to keep me company in case “it all went to shit” as he put it. He didn’t want me being without family if something went wrong. I’m so glad he was there. I went and met him for lunch at some pub near where he was staying close by. By then I realised I was starving and polished off a huge lunch. I was also conscious of giving Cam some space as I thought he needed it.
I think it was around 3.30pm when we received word that Sarah was in recovery. I don’t think we could see her straight away though from memory. The first thing she said was “how was your day?” to Cam then she moved her hand searching for Archer. As groggy and out of it as she was, that maternal instinct was there in spades and already she was wanting her baby and to make sure he was ok. I knew at that point that she would be ok and more importantly, the Sarah I knew was still there. I wasn’t overly concerned that she couldn’t see at this stage as she’d just come out of surgery and was bandaged up, groggy and still away with the fairies. I really can’t remember how long we were there for but it wasn’t too long as Sarah needed rest. I was exhausted and hungry and I remember eating Cam’s dad Daryl’s beef stew stone cold when we got back to the unit later. Daryl had very kindly cooked us up some yummy meals so at least we had good food to go home to otherwise we just wouldn’t have bothered to cook and eaten rubbish. Cooking was the last thing I felt like doing and it was so good to have easy things to reheat. I was glad to have today behind us and l spent the night wondering what tomorrow would bring and juggling Archer’s night feeds with Cam. I think by this stage we’d fallen into a good pattern of sharing the night feeds depending on who was tiredest! Luckily for Cam and I, Archer was a dream newborn and took a bottle well and settled reasonably easily after feeds.
Time spent with Cam and Archer
It felt a bit weird going back to the unit in Rosanna with Cam and Archer whilst Sarah was recovering from brain surgery. We moved in a few days before surgery. I felt really guilty that it was me going home each day with Archer and not Sarah. It was me enjoying her new baby when it should’ve been her. I knew she felt jealous and she had every right to feel that way. I’d have felt the same if the roles were reversed. It was such a touchy, sensitive time for us all but it had to happen. We didn’t really have a choice. I needed somewhere to stay close to the hospital and accommodation was scarce. Luckily, we chanced upon the Rosanna unit through Cam’s sister in law, Laura whose brother happened to be away on holiday at the time. It was perfect and a stones throw from the Austin hospital.
Cam would also need support with Archer and so the poor guy was saddled with his mum in law whilst learning to be a new dad. I’m sure it was the last thing he wanted. It could have been a recipe for disaster given the stressful situation but I think we really cemented our bond as in-‐laws and didn’t have a cross word the whole time despite both being sleep deprived and emotionally wrung-‐out. It was a team effort with Cam’s parents providing us with meals and helping out with Sarah’s washing as well as moral support. . We quickly fell into a good routine. We’d spend up to 12 hrs a day with Sarah then come home and I’d unpack baby bag, sterilise and make up new bottles for the night, throw some washing on, get Archer’s bag ready for next day and have something to eat. Just the normal things you’d do after a day out with a baby. Cam would tend to Archer’s needs whilst I was fluffing about getting organised for the next day. There were also messages to reply to, phone calls to make etc. We soon worked out that Cam would do the feeds up until he went to bed as he sat up late and I’d get up later through the night. This seemed to work well and we both managed to at least get some rest. Mornings were well organised as we were both keen to get to the hospital to see Sarah. She was also hanging out each day for us to get there so she could have Archer for the day.
Cam was fantastic with Archer and nothing phased him too much. We were coping well and worked well together. Some nights we’d chat a bit but more often than not we were just tired and didn’t really feel like talking. The quiet times were comfortable and weren’t awkward at all. Cam and I had spent a bit of time together when he’d stayed at Sisters Beach over the last few years and I’d stayed with Sarah and Cam in Melbourne also. It wasn’t like we were strangers! Archer didn’t seem to be too affected by what was happening. He seemed happy enough as long as he was fed, burped and cuddled by one of us. He may have missed a bath or two but I knew he’d survive with a bit of a wash and it was more important everyone got rest. He did get a few baths in the tiny bathroom sink. Can’t believe he fitted in it now!
Care of a newborn baby didn’t bother me at all as I’ve been doing family day care for nearly 20 years and have always, it seems, had a baby in my arms. However, the responsibility of caring for my daughter’s child weighed heavy. I feel privileged that Cam and Sarah allowed me to share in this time, even though it wasn’t what any of us, especially Sarah and Cam had planned as new parents. Sometimes life doesn’t go to plan and throws us in the deep end in ways we could never have imagined. I’ll always treasure the time I spent with Archer as a newborn. I remember one long night after a middle of the night feed and he was lying on my chest. I couldn’t sleep and neither was Archer it seemed. I remembered Sarah liked Ed Sheeran’s song ‘photograph’ and I played it for Archer on repeat. He seemed to immediately settle. It’s such a beautiful song and I was a bit teary that particular night with Archer listening to good old Ed whilst sleeping on my chest. It reminded me of sleepy times with my own babies as newborns. Sarah told me later that she used to play Ed Sheeran when Archer was In-utero. Even though I knew Sarah would have plenty of these moments, I still felt sad for Sarah that she missed out on some of that special newborn time. She knew that Archer was very much loved and well cared for, but still….. After all she’d been through, to have her mum walk out the door each night with her husband and new baby was extremely hard for her. It just didn’t seem fair. It was a very difficult and sensitive time for her and for me as her mum but we muddled through it and our relationship has grown for the experience shared.
I think the days after Sarah’s surgery are a bit of a blur for us all. One day just rolled into the next. Sarah was a bit of a wreck after surgery. The swelling on her face and around her eyes was coming out the next day. She looked like she’d been in the boxing ring. She was in a lot of pain and couldn’t sit up, stand or do much at all. It was like she was a child herself again needing lots of care. She couldn’t see and feeding Archer was proving to be a challenge. I had to put him to the breast for her as she couldn’t see what she was doing. She managed to breastfeed Archer the whole time and express milk of a night for Cam and I to take home. I think the focus on Archer definitely saw her through some difficult days. Breastfeeding was one thing only she could do and she did it brilliantly even after all she had been through. She was also still sore from the Caesar so it was a really tough time. She couldn’t feed herself initially but true to form, she hadn’t lost her appetite! She could only open her mouth slightly so we spoon fed her mashed up food. Even when she could sit up better she still couldn’t see the food on the tray so eating was a whole new learning curve.
The days were long and we were tired. I kept telling myself that no matter how tired I was that it was a hundred times worse for Sarah and that at least I could see. I couldn’t even begin to imagine what it must be like not being able to see your new baby. I think I was running on adrenaline and in a crisis you just cope and get on with it. I made lots of new friends on my visits to the day room for a break, including the orderlies who always found me sandwiches, cheese and biscuits!! Everyone has a story to tell. New babies are a bit of a novelty on the neuro ward so Archer was an instant hit and charmed all who met him.
Sarah wasn’t up to visitors as she had shocking headaches and just didn’t feel like talking a lot of the time. My dad was still in town so I’d wander down to the canteen with Archer and we’d have a coffee together. Once he knew Sarah was out of the woods he headed back to Qld. He still hadn’t seen her but he understood the situation. Cam was busy setting up his new business so he had that to deal with spending many hours on his laptop by Sarah’s bedside.
Now that the operation was over, I should also mention that during all of this drama, Sarah’s brother, Alex had just become engaged to his lovely Scottish girlfriend, Julie. Alex was on holidays with Julie in Greece when he popped the question only a few days before what was happening with Sarah unfolded. We just didn’t know whether to tell him what was going on or not as we didn’t want to spoil what was a happy time for them both. In the end it was decided he had a right to know and that he’d be able to handle it. He was told what was going on whilst trying to keep it as positive as we could. It was hard for him being so far away and removed from the situation. I spent a lot of my hanging around hospital time keeping Alex updated so he didn’t feel out of the loop. He has been a never-ending source of support to Sarah via face-time chats and with setting up her blog and media accounts. I was feeling bad that my worrying about Sarah was overshadowing the happiness I felt for Alex and Julie. Many conflicting emotions!
Once Sarah was feeling a little better I’d escape the hospital walls for a walk down the street just to clear my head and get some fresh air. I was also conscious of giving Sarah and Cam space and time with Archer.
I still wasn’t concerned about Sarah’s vision or lack thereof as it was still very early days and I just assumed it would return once the swelling went down. We were told this could take weeks if not months. I remember her being able to make out the flowers on the windowsill from Malmsbury Primary where she worked which gave us hope. There was still plenty to smile about despite the situation Sarah was facing as a new mother. Archer was a delight and kept us all smiling during some tough days. Sarah’s experience with an enema also gave us the laugh we all needed!! I’m laughing now as I think if it! That’s her story to tell (or not!)
Sarah was pushing to get out of hospital and back to Bendigo. It seemed so soon but she’d made good progress and I knew it was time I went home and left them to it. Sarah, Cam and Archer needed to bond as their own little family unit. She was transferred on the Monday to Bendigo hospital less than a week after her operation. I felt ready to leave her knowing that she would be able to cope. Cam was there for her and she seemed strong mentally and ready for new challenges. You know as a mother when it’s time to step back and let go. Sarah and Cam didn’t need me hovering about once she was on the mend. Sarah knew I’d come over any time if it all got too hard. She’s very strong and independent and I wasn’t going to stand in the way of that. It was hard coming home but I also had a family day care business to run which I got straight back into when I arrived home.
As it turned out, Sarah did need me to come back to Bendigo after needing a second operation to repair a hole in the brain membrane.
Three weeks in Bendigo
Sarah had just arrived home to Bendigo after second lot of brain surgery to repair a hole in the dura (membrane). There was a small hole left behind after first surgery which can happen sometimes. I’d been worried about the “egg” on Sarah’s forehead for weeks but didn’t want to sound like a panicky mum. Every time I spoke to Sarah this lump looked worse to me and her forehead looked quite swollen and a bit misshapen. Her vision also hadn’t improved much at all.
Sarah face-‐timed me late one Monday afternoon after arriving home from Melbourne. She’d spent some time at Cam’s parents recuperating after the second operation so as to be closer to the Austin for follow up appointments. I could tell straightaway that something wasn’t right with her. She was pacing the floor, rambling, talking crap and generally seemed spaced out. She was also very agitated, crying and clearly not coping. I asked her did she need me to come over and without hesitation she said she did. I knew she must have been in a bad way as she would never ask for help unless she really needed it. I wondered if the steroids she was on for swelling were bringing about this agitated state she was in. She seemed to be relieved and calmed down a bit when she knew I’d be there tomorrow.
Hasty arrangements were made for my day care kids. I have wonderful, supportive day care families and they all reassured me they’d be fine and that family comes first. My concern was I wouldn’t have a business to come back to as I didn’t know how long I’d be gone. I’d also had a couple of weeks off when Archer was born. As it turned out later, these fears were completely unfounded and my day care parents couldn’t have been more supportive. I am lucky to be able to call them all my friends. One of the many rewards of living in the small, close-‐knit community of Sisters Beach.
I caught the first plane out next morning not knowing what I was walking into. When I arrived, Sarah clearly wasn’t well. I honestly thought she was on the verge of some kind of breakdown and I felt a bit ill-‐equipped to handle it. She looked terrible. She’d been in tears, her face was so swollen and puffed up from the steroids. Cam looked a wreck as well. I’m sure Sarah cried pretty much for the first 24 hrs after I arrived.
We were at ground zero. The weeks spent with Archer as a newborn I was running on adrenaline. By now, a couple of months down the track, I was plain tired, run down and had lost a lot of weight. I’d been very worried about Sarah. It’d been hard being away from her even though she was insisting she was ok. I wasn’t looking after myself particularly well either. I’d been flat out with day care and other stresses in my life were also occurring. This next few weeks I could tell would take a mighty effort on my part to not only hold Sarah together but myself as well. I just couldn’t fall apart on her. I’m happy to say I coped fine although I did feel really tired. But I was grateful to have vision, and tiredness didn’t really even register. I knew I’d manage. It was one day at a time. At one point we were joking about who was looking the worst, Sarah, Cam or I! The three of us were looking a bit the worse for wear. I think it was time to take up my dear friend Sally’s voucher for a trip to the day spa In Bendigo for a couple of hours! Was just what I needed. A bit of time out with a massage and facial. I was revived.
To start with all I could do was hold Sarah and reassure her that she was going to be ok and that I’d stay as long as she needed. She was worried I’d go home too soon, before she was ready. She needed me to believe in her and her ability to cope as a new mum. I didn’t think I’d be home within three months at the earliest the state she was in. I think I slept with her the first night just holding her and helping her feed and deal with Archer. The next few nights are a blur of helping her with feeding Archer and settling him to sleep. We chatted at length during these long nights about this weird new world we were in and how it might unfold. Sarah seemed to need to talk and unravel her thoughts and I was happy to listen. Sarah was too exhausted to do anything else other than feed and cuddle her baby which of course, was all Archer needed. He was happy! She seemed to have lost her confidence and was worrying about being a good mum. Things she’d been doing for Archer without thinking were now being worried about and she seemed very unsure of herself. I wasn’t worried about her ability to parent Archer. She just adored him and he’s a dear little baby of the sweetest disposition. Sarah is very tuned into Archer and they share an incredibly close bond. I remember we turned a corner when one morning, think it was around 4 am (urgggh!), Sarah came running in to me almost screaming with excitement. “Mum, mum, I just think I made out Archer’s smile under the bright light in the bathroom when I was changing his nappy”. Even though it was 4am I was so happy for her. It was such a big deal as she’d been so sad at not being able to see his smiles. Suddenly she wanted the whole house lit up with IXL tastics!
One day/night just rolled into the next. We were taking one day at a time. I just felt so sad for her at this time. For me, I’d say it was a pretty scary, uncertain place to be in. I was really worried about Sarah’s future. I was extremely concerned about the state she was in. She was in tears constantly it seemed and was very anxious and unsure of herself. I couldn’t even begin to imagine what it’d be like not to be able to just jump in the car and go where you wanted to go. I couldn’t imagine not being able to pick up a book and read, look up a recipe, taking Archer to playgroup etc. Just all the things you’d do as a new mum with your baby. Everyday, simple tasks we all take for granted like matching our clothes, shoes etc to go out were difficult. One time I remember saying to Sarah when getting ready to go out, to go and change her top as it was dirty. She came out with another one one which was also grubby. (She can’t see stains or Archer spew!). On changing yet again, arrived out with yet another on only to be told it was on back to front! By this stage she was so frustrated I think she cracked the shits and told me to go to town on my own, she was going to stay home! I’d have probably done the same and I remember feeling a bit relieved she stayed home and I had a bit of much needed space for an hour or two. I arrived home and Sarah had had a much needed snooze and was feeling better.
Sarah is a very organised person ‐ she’s a teacher. She was having meltdowns because she couldn’t find her stuff. A big thing for her was to have her clothes in order so we spent some time sorting her wardrobe into tops, dresses, skirts etc. She had been having trouble finding certain clothes. This at least helped her start the day off right when getting dressed. It was all about having a sense of control. Archer’s things were also sorted. She was becoming a bit obsessive about things being put in order and lookout if anyone moved them! Again, this was about maintaining a sense of control and totally understandable when you can’t see. Cam and I were probably too scared to touch anything. God help us if we forgot where it went! Sarah had this thing about not being able to match socks. Really? It’s just socks I thought. Just buy all white or black (she could see contrast) I remember thinking to myself. Chuck them all in one basket and go from there. But for some reason Sarah wanted to be able to pair socks and it kept being mentioned. This was another example of Sarah’s need for control. Might’ve been a little thing for me but to Sarah it was important. We bought some different coloured tubs for each family member to be able to sort washing. This helped in the early days.
The following days brought more tears. I think Sarah was beginning to accept what had happened to her and was grieving for all she had lost. She had been told there wasn’t much hope of more vision improvement the week before. Her milk supply was dropping off a bit and Archer looked a bit dehydrated. I knew how important breastfeeding was to Sarah and made sure she concentrated purely on feeding Archer and nothing else. The maternal health nurse visited and soon got things on track again. All Sarah needed was reassurance that all would be ok. I certainly wasn’t going anywhere. There was so much to do. I found a diary and began the process of figuring out all Sarah’s appointments. I really wanted her to get a psychologist sorted first of all to get her in a good head space. There were Drs appointments, Vision Australia, Child Health Nurse. Every day there was something. Some days involved three different appointments and it was hard work getting her organised and out the door some days. The first visit to Vision Australia, I remember getting ready in plenty of time as I had no idea where to go. Sarah was crying (still!). We walked in the door and she burst into tears. The staff there were just so lovely and reassuring. We came away after some time with hope that Sarah could still lead a productive happy life. It was such a foreign, new world to have to be part of and I didn’t want that for my daughter. I just wanted her old life back for her. I remember saying to her that although her new life was in fact vastly different that it could still be a happy and productive one. Sarah had finally found her niche as a primary school teacher and it seemed this had now been taken away as well. She had lost so much it seemed. I was also worried about post natal depression setting in with all the hormones flying around and the ordeal she was working her way through.
I soon learnt my way around Bendigo! Luckily, Sarah knew the city reasonably well and could tell me where to go when I got to certain landmarks. I’m very long sighted myself anda couple of times she’d say ‘what’s that street sign say’ and I’d be like ‘dunno, can’t read it!’ We joked it was like the ‘blind leading the blind’. The paperwork side of things was horrendous. So much information to take in and firms to fill out. Cam was totally over the forms and I could see why. It was all a learning curve in this strange, new world we were thrust into.
Sarah is normally so independent but during the time I was there she was more than happy for me to cook, clean and help out with Archer. She was clearly exhausted and just needed rest, good food and some tlc. She was craving some home cooked comforts of her childhood like sticky date pudding and chocolate self saucing pudding so we did indulge a bit! I think Cam was relieved to be able to escape what was going on at home and get stuck into the opening of his new business which was about to all happen within weeks. He had so much to do plus the worry of Sarah on top of it all. I was worried about him as well and the pressure their relationship as newly weds was under.
Archer sailed through this challenging time, smiling and bringing lots of happiness to us. Sarah has said a few times that Archer has kept her going and given her a reason to get up each day. Sarah slowly came off the steroids and she returned to her more normal self. I hope she doesn’t have to take them again. It wasn’t a nice experience! I concentrated on cooking good meals and keeping the house in order whilst Sarah concentrated on Archer and building up her milk supply.
I could tell by the second week she was feeling better as I heard her up at 5 am making a quiche for mothers group. Honestly, who would bother!! I remember thinking, “geez, just go buy bikkies and dip” whilst listening to her clattering away in the kitchen. At the same time I was glad she felt she could do it and it was a huge step on her road to independence. She was so proud of herself. I was proud of her too. It gave her hope that she could still turn out a decent meal. Sarah’s a great cook. She enjoys cooking and I knew she’d be able to figure this out as well.
This week was taken up with more appointments and finding things that would help Sarah function more easily in the home. A lot of it was common sense stuff. She was coping much better by now and was making good progress. The tears had stopped and days were brighter. There were still many frustrating moments mainly involving not being able to find things or do things quickly. I remember her insisting on strapping Archer into his capsule and sitting patiently in the drivers seat whilst she did it. Seemed to be taking forever and with many an expletive. Her most often used one was “for f$&@’s sake” and we joked that this would be Archer’s first words as the poor little fella was hearing it so often! I was also told that “I’m an adult and can swear if I want” when I chipped her about it. Yeah, fair enough I thought. I’d probably be doing a fair bit of it myself if I couldn’t see.
Sarah has always taken pride in her appearance but I could tell she was just too tired to even bother. She was worried about her eyebrows being out of control so I organised for a mobile beautician to come and do some waxing for her. She felt like a new person and she soon started dabbling in the makeup again and getting back into her nice clothes which I had sorted into order for her. I think Cam was relieved to see glimpses of Sarah back with us! We (or I!) decided we should venture into town to buy some jeans and a couple of nice tops for Sarah and go out for lunch. She did really well for her first trip out. I didn’t say anything at the time but it was quite funny looking back. There was a queue of people 3 or 4 deep and about 4 people across the front counter at Bakers Delight. Sarah had the pram (she likes to push the pram rather than use her stick). She completely split the queue in half, pushing the pram through the middle of the line. The looks on the customers faces was priceless. They wouldn’t have known Sarah was blind when pushing the pram. I think I mouthed an apology to them and we kept walking. She was doing an amazing job. It was
hard but we found some nice things, had lunch and went home. I remember feeling really happy as we’d often spent a day together shopping and I wondered if those days were over.
Seemingly not! Sorry Cam! It was going to be very different as Sarah would rely on me to describe colours/styles of things. Luckily I know her taste and what she likes and she trusts me. I still do a bit of online shopping (with her credit card!) for her. I do an online grocery shop each week with Coles for her to get home delivery. It only takes about half hour of my time and saves Cam having to bother with groceries. Sarah just tells me what she needs and I do the rest. It’s a great service. She can manage to walk to supermarket and buy the odd few things she might need to top up. Modern technology is great and this is something I can do for her from home in Tassie.
The thing I found most difficult whilst with Sarah is not knowing just what she can see. It doesn’t matter how much she tries to explain, unless you’re in her shoes you just can’t imagine it. I tried to let her do what she could only helping if she asked. But it’s a fine line between stepping in and standing back. I’m sure I got it wrong on several occasions and she soon let me know! Sarah doesn’t mince words!
By the third week I knew it was time to step back a bit and let Sarah do more for herself. I didn’t want her falling in a hole when I went home. We had caught up on appointments and ongoing visits to Sarah’s home had been arranged with Vision Australia, psychologist and child health nurse. She had a good support network around her including a lovely group of young mums and babies the same age. There would be someone popping in most days for a while and she was coping well by this stage. Vision Australia have been an absolute god send. They were there (and still are) every step of the way for as long as Sarah needs them. Cam and Sarah managed to go out for dinner one night whilst I babysat. Was great to see Sarah dressed up. She was looking forward to going out and putting some nice clothes on. She’s a girly girl and loves to dress up, do her hair and makeup etc. Was good to see them go out like a normal couple would. I took a photo before they left and Archer promptly spewed down Cam’s clean shirt requiring a quick change before leaving. Life was becoming seemingly more ‘normal’ again. There was light at the end of the tunnel. I had some lovely phone calls from friends in Tassie whilst in Bendigo, some I hadn’t spoken to for some time. That’s the thing with your good friends, you can always catch up where you left off. It makes you realise the importance of friendship. The support meant heaps to me and kept me going.
So after three weeks I returned home confident that Sarah was going to be ok. My last day ended with Sarah and Cam’s fundraiser at Latrobe Golf Club organised by Sarah’s very good friends Mandy and Jenny, Cam’s brother Aaron and Sarah’s brother Alex. To start with, a fundraiser was the last thing I even wanted to think about with all we’d been through when Mandy first ran it by me. I felt it was too soon. Sarah wasn’t in a good place physically or mentally at this stage. It had only been six weeks since surgery. We had all been through such a tough time and were not in the head-space to be planning and organising anything. It also felt somehow ‘wrong’ to have people donating money on behalf of our daughter. However, Mandy was persistent and I left it in her very capable hands to organise. As it turned out the fundraiser was an amazing help to Sarah and Cam. We were very humbled to see the support that came pouring in from friends and family. People were only too happy to help out in some way. I’m very grateful to Mandy and Jenny for organising the fundraiser. It was a great day and Sarah coped amazingly well with the crowd. She made a lovely speech and again I was so proud of her. She always seems to rise to the occasion. It was great for her to catch up with friends, family and people who cared about her. Alex had also put together a lovely slideshow of Sarah, Cam and Archer. It was hard to watch as so much had happened in such a short time. The fundraiser was also very timely as Sarah and Cam were able to purchase quickly the equipment Sarah needed to be able to function independently and communicate with family and friends.
There will always be new challenges but I know she’ll be able to overcome anything that’s thrown at her. I think she’s the most amazing young mum who has dealt with and continues to deal with some really tough stuff. Cameron has been her rock throughout and has also done it tough. I admire the strength in both of them. It really makes you put life into perspective and realise what’s important – life, health, family and friends. I’m glad I was able to be there for Sarah. I wouldn’t have had it any other way. Although it was hard seeing her go through all the emotional and physical trauma it has also brought us closer together as mother and daughter. I think Sarah is finally able to see things through a mothers eyes and understand a mothers love now that she is a mother herself. We have lots to look forward to in the years ahead.