Our family (we might be described as a ‘close knit’ bunch, perhaps because we don’t really have any extended family) are used to seeing each other very regularly and being together. I’m accustomed to seeing you each day as I take and collect Jacob from school; I took it for granted. I treasure our family’s closeness because we know that we can always rely on each other. This year, perhaps more than ever, we have needed each other more than before. The last five weeks has been a testing time for all of us, although in a funny way, for a short time it became the norm as we knuckled down and attempted to carry on – somehow keeping to a routine in what seemed like a surreal situation. For the first three weeks, Daddy came to visit you all day, every day while Mummy remained with you 24/7. Ella, Jack and Ava have been well looked after by Nanny and Granddad in Mummy’s absence, but there is no doubt that your siblings have missed you immensely and have worried about you often. Bedtime seems to be when Ella, Jack and Ava have the opportunity to slow down after a busy day at school and their thoughts are drawn to you. Of course, they miss Mummy terribly as they have never been apart from her for more than a day or two. She is always there to wave them off to school, to give them a cuddle whenever they’re in need of one or even when they’re not, to listen to them read, to tuck them into bed and kiss them goodnight, she is always there to talk to them about their day and the things they’ve been up to. But not for over four and a half weeks. It’s been hard. I’m not going to lie. Daddy has been gone from about 9am in the morning and hasn’t got back from the hospital until 11pm. So they haven’t seen much of Daddy either. Once Daddy went back to work, he had to leave at 7am which made the day away from home even longer. Nanny and Granddad have been, like they always are, holding it together here so that Mummy and Daddy can at least have peace of mind that Ella, Jack and Ava are being well looked after. You know what Nanny is like, she is trying to do everything just as Mummy would, to keep home and school life ticking over smoothly. To be honest, it has been difficult but we’ve all pulled together and we’ve coped. That’s what families do. Well, that’s what our family does anyway. We pull together and do whatever needs to be done. This whole situation isn’t anyone’s fault and none of us chose for this to happen. Unfortunately, unfairly, this is what you’ve been dealt and we are responding to it as a family. As a team.
Each and everyone of us has struggled at times. For Mummy and Daddy, their experience has been beyond my comprehension, it still is. Having to see you in the beginning, where you were unable to talk, hold up your own head and move your right side – to see their own child in such a way, vulnerable and so poorly, left them feeling helpless and full of despair. The stress and fear has been suffocating. Like they were drowning with no chance of air. There has been progress, thank goodness, but what they have been through has been inconceivably difficult. You have been their focus, your recovery has been their purpose but it goes without saying that they have also felt guilty that they cannot be with Ella, Jack and Ava. Your siblings have never once questioned the fact that Mummy has been with you constantly; they have never complained that she is with you and not them. They have simply accepted the situation and very maturely understood that at this time, you need Mummy more than they do. You should never, ever feel guilty that this is how it has had to be. You’re not responsible for this horrendous situation and we all know this.
I have had your sisters and brother at my house for dinner a couple of times and it feels very strange that you aren’t with them. I’m not the only one; I know that Nanny and Granddad have very much felt your absence when they look after your siblings. In normal circumstances you’d be the one curled up to Maggie, my dog, on the sofa. The number of times I’ve gone to say, ‘Ella, Evie, Jack and Ava’…I’m so accustomed to your names in that sequence that it’s very difficult to omit your name from the list. Just asking if anyone would like a drink was surprisingly challenging. I always ask what you’d all like, but I can usually predict which refreshment each of you will request and I know that you like squash, in particular, you prefer it strong – but you weren’t here to remind me of that. I’ve been to your house many times while you have been away in hospital and that is quite emotional in itself as everything in your bedroom, your belongings, your wardrobe is how you left it. There was one day, when Mummy asked if I could find some trainers in your wardrobe which Daddy could take to hospital. I opened the doors and for a few moments just stared at your ballet bag lying on top of your shoes, where you had left it on the Saturday before your stroke. Little things like this inspire fresh tears. Mummy loves photography and so there are pictures of you and your siblings in nearly every room. I see your beautiful, dimpled, smiley face as I glance at the mantel piece, the sideboard in the hall celebrates happy times with your radiant smile on display and on the wall in the living room there is you among your siblings beaming at the camera. You are such a spirited and bubbly girl that your absence is like a huge gaping hole. It’s just horrible.
While we are all missing you, you are in hospital doing your best in all the different rehabilitation sessions. Speech and Language Therapy (SaLT), Occupational Therapy and Physiotherapy have been involved and have devised a programme of rehabilitation to aid your recovery. No one can give us any guarantees as to whether you’ll fully recover and the process could take a very long time. You have a great attitude and are just getting on with whatever you are told to do. Mummy and Daddy are there to support you and are doing anything in their power to mentally stimulate you, encourage your speech and aid your physical recovery. I got a little excited in my last post because for the first time since your stroke, you were actually up on your feet and attempting to walk. I referred to it as ‘walking’ but I know in my heart that there is still an extremely long path to travel before you are actually able to walk with minimal aid. You’re not allowed to stand on your right leg without support because it is not strong enough and could give way at any moment. Children are very resilient and adaptable; you have proven that you are no different and when you take steps with the help of the physiotherapists, you have learnt to rely on your left leg and stomach muscles to do most of the work. This week, the physiotherapists have observed that your thigh muscle has improved further and your hip is now gaining strength. Although you are yet to control movement, there is reported to be slight muscle activity in your shoulder. Little by little there is progress. Of course, the health professionals won’t give us false hope about your recovery but we are remaining positive. You’re heading in the right direction and I know that you’re a determined little girl who will give her best.
Unsurprisingly, you have made an impression on the therapists who work with you. In your speech and language session, you have been playing a game called ‘What’s Up’ whereby you have a picture slotted into a headband which you wear but are not allowed to see. By asking questions to fellow players you are then supposed to guess what your picture is. The objective is to link up your thinking skills with your speech and develop your vocabulary. As it’s early days, the therapists and Mummy have been asking you questions to try to model the language that you could use. However, you cheeky monkey, you have other ideas and keep cheating by looking at the card on your headband. You’ve brought a lot of laughter to those therapy sessions. You know what they say, laughter is the best medicine.
On the 8th July we were all delighted to welcome you home for a short visit. To have you home for the first time in several weeks was amazing. At times you got a little frustrated as the wrong words came out or you simply couldn’t think of how to communicate what you wanted, but your vocabulary had improved and you were able to say things that you couldn’t before. This time you remembered Rafe and could say his name. It was just brilliant to have you there, to be able to cuddle you and chat to you. We’d felt so remote from you when you were in hospital and we felt so helpless. But now you were home and we could be in your company. We weren’t the only ones who were thrilled to have you home, you were also very excited! You kept trying to spin yourself around in the wheel chair – you made us laugh because there was (and is) just no stopping you. You happily sat on the sofa and pulled Granddad’s leg up in the air and started to play it like an air guitar. That’s our crazy Evie!! Love you!
What a great day Saturday was but was made even better, when you were given permission to visit again the next day. You spent a quiet day at home, just the six of you playing board games. Ella, Ava and Jack were desperate for you to come home permanently and gathered their duvets to create a daytime sleep-over downstairs. Despite the usual sibling ups and downs, which are so typical in any family, your sisters and brother really do love you. The way they helped and cared for you that weekend was tender and loving.
Luckily, you were able to visit home again the following weekend and despite the prominent wheelchair in the room, we dared to imagine that, for just for a split second, it was like old times. The healthcare team responsible for your care had a case meeting to discuss your rehabilitation and your length of stay in hospital. Your Mummy’s heart sank when it was proposed that you may have to remain in hospital for the entire summer. Of course, you must be wherever the professionals think the best place is for you. If hospital was the best place for you, then we would accept that. But behind the scenes, it meant more time away from your siblings while Nanny and Granddad would have to be called upon to look after them for the school summer holidays. We all started to put plans in place to ensure that Ella, Jack and Ava would be looked after and enjoy their holidays without you and Mummy at home. The family holiday to Ibiza, which you should all being enjoying right now, had to be cancelled and so we were forming ideas as to how to entertain them in other ways. Then we received a phone call from Mummy to give us the unexpected news that you were being discharged from hospital! You were coming home!! After over four weeks in hospital, you were coming home! How unexpected but wonderful! Due to needing rest and not overdoing it, some days in hospital were quiet as you weren’t receiving any rehabilitation therapy and so the days were long without any physio sessions to break up the hours. Therefore, it was agreed that the therapy would be organised for three/four times a week and Mummy would take you to the hospital. While Mummy transports you back and forth to hospital, we need to ensure that Ella, Jack and Ava (I typed Evie in this list…force of habit!) are also being looked after. Nevertheless, it is better to have you home and together we can work out these finer details.
So, now you’re home! I truly believe that this is the best place for you because you can be with your family and have the opportunity to interact with us all. Mummy has a bigger support network around her and you can all spend quality time together. It’s such a relief that you are home. If I’m brutally honest though, it isn’t the same as when you had meningitis and were discharged from hospital because you were better. This time, you aren’t better and the stroke has, for the moment, left you with life changing consequences. You’ve gone from being a lively, fun-loving, energetic and independent girl to being restricted and dependent on those around you for nearly everything. It’s so unfair – no, unfair just doesn’t cut it. Life isn’t back to normal yet as you have to sleep downstairs and someone has to be with you in case you need anything. Mummy stayed with you at first, but your siblings have, yet again, rallied around you and have taken it in turns in sleeping with you in the double sofa bed. Fortunately, in addition to the ones upstairs, there is a downstairs bathroom which has a large shower and accessible toilet for you to use. Mummy and Daddy have had to buy a special chair so that you are able to sit in the shower cubicle. A ramp has been supplied to enable you to get in and out of the front door. At the moment, changes have had to be made to everyday life and the logistics of day to day living have to be carefully thought about as you can’t be left in a room on your own in case you slip out of the wheel chair or off the sofa. You can find it hard to express what you want because the words do not come out and so you attempt to find ways of showing Mummy and Daddy, such as writing on the sketch pad. You have also started pointing and trying to use gestures with your left arm, however Mummy is keen for you to work on verbal communication instead. Since being home and having the chance to interact with different people, your speech has started to improve further as you are beginning to connect words into sentences. Small steps but these are the highlights of our days and weeks.
(Home at last, with the balloons that you were given by Badsey Youth Club, after their charity bingo night)
Your latest SaLT appointment concentrated on copying words and numbers. You were really good at repeating random 3-digit numbers and larger (Maths has always been your thing!) but saying the days of the week in reverse proved somewhat harder. It’s upsetting because this is something that normally is ridiculously easy for you. One thing you should learn about your family is that they will not be disheartened and so what happened? You went home and Mummy turned this into a game with you, herself, Jack, Nanny and Granddad. After going round in a circle saying the days of the week and then saying them in a backward sequence, your ability to repeat them had much improved. Furthermore, to try to encourage your physical recovery your parents were told that it might be useful to position a mirror next to you when doing activities with your left hand. If you watch your reflection, the theory is that your brain is tricked into believing this is actually your right hand. We’ll give anything a go! Mummy sourced a mirror box and you have been using this ever since.
Last week, you even managed to go into your school and visit your class with Mummy. You’ve kept in contact with your peers and teachers via video messages and this was the first time they had seen you properly in weeks. Your classmates were full of questions to ask you, which Mummy had to mostly answer as it was hard for you to give responses. Your friends were so pleased to see you again. They performed ‘E-V-I-E’ which was choreographed at the danceathon and this brought tears to Mummy’s eyes.
At the moment life has changed, much as we’d like to pretend that it is still the same, we are learning to accept that it isn’t quite as we knew it. But you’re home and you’re with your family. You’re all together again. We’re together again. Together we’re all stronger. Together we’re a team. Together we’ll stop at nothing to help you recover.
Lots and lots of love, from just around the corner,
Auntie Diane xx