Tag Archives: rehab

Parenting After Brain Injury Part 2

20 Dec

Today marks my 2 month walkiversary and it feels good to have my independence back. I’m so grateful to be home with my family and most importantly my daughter. My family are the most amazing support network anyone could ask for. They understand when I can and can’t do something, when I feel tired, my feelings and emotions, although they don’t fully understand it’s great that they know to just let me be me and whatever is going down is a part of who I am. A lot  more has happened in my life than I’m letting on and I have shared various details with very close friends or trustworthy people who I know won’t let me down. I’m a member of various stroke survivor websites and groups online. I often find some people giving up, swearing, having enough and sometimes wishing the stroke finished them off. I understand it, I really do although not once, alhamdulillaah (praise be to God), have I ever had that thought. In fact I shared a little more on a group today and this was a part of what I said in response to someone feeling sorry for me:

I couldn’t be happier with my life right now. Yes it’s hard but it’s been such an incredible experience and I wouldn’t swap it for anything else. I’m in early days compared to most people here. Stroke was August 1st. Was in rehab for 3 months. Been home almost 2 weeks and trying to be a mum to my now 19/20 month old baby girl. I haven’t been happier in life i don’t think. God bless me and my family 

I honestly don’t regret any of what I’ve been through in the last four to five months. Obviously we can’t regret a stroke because it’s not like we have control over it and it wasn’t a choice, especially in my case where I was born with something that has changed mine and my family’s life, probably for forever. As incredible as the journey has been, I don’t wish this hardship on anyone else. I’m in contact with some patients from rehab, some have been discharged and others are still on the unit, one in particular was messaging at 4am because of insomnia due to pain and I was awake because I was reluctantly co-sleeping with my toddler which basically meant her head was actually on my head for part of the night and I had to keep changing sides because she was all over the place. Anyway, I thought it’d be nice to share how I felt about my position in life right now. I could have been a lot worse than I am so I am grateful for that and so much more. If you think your life is bad, take a look at someone whose life is currently a little worse or harder than yours and be grateful. Your challenges in life could have been worse.

Speaking of challenges; my daughter. This post is after all, about parenting. I mentioned the first time my daughter saw me. The very moment and how I felt. My family could see that seeing my daughter made me happy although noone knew the pain I was feeling. It was a bittersweet. The most bittersweet feeling a person could ever have. I loved her and loved seeing her, in fact, I loved everything about her. All her “perfect imperfections”. If you’ve ever stayed in hospital for three or more days you’ll quickly discover magic fm is the favoured radio channel amongst most, if not, all hospital and ambulance staff. That song played whilst my daughter was visiting and thinking back to that moment, those words kinda fit. Seeing her was so sweet but the pain was what was bitter. After every physio session and after every false alarm to the toilet, I’d get back into bed and I’d be at an angle. I’d have to shuffle so I  was straight and more often than not I’d have to try to slide myself up the bed using my limbs which didn’t work properly at the time. Sometimes I’d just quit and be like ‘you guys are on your own right now, you shift me’.

My daughter came to visit me one time and I mimed round and round the garden like a teddy bear on her whilst my other sister said the words, hoping it would remind her of the relationship we once had. She wasn’t having any of it so I stopped and told my sister that was enough. They hung around for a few hours and as usual that was great. My daughter was very well behaved on most days and  the nurses absolutely adored her.

Pretty soon, I was told I was getting a wheelchair. I imagined a regular wheelchair but this one was a little funkier, comfy and had a neck and head support like Professor Stephan Hawkins’ one minus all his other gadgets. They started me off slowly. I had to sit in the chair (I make it sound so sinister) for an hour a day. ‘Easy’, I thought. The first day I did almost two hours and then the nurses made sure it was just an hour after that but pretty soon it was getting exhausting.  It wasn’t a matter of just sitting in a chair and that was it. I had to concentrate and put effort into sitting up. I’d have to actively think and try to engage the muscles in my core and force myself to sit straight. I couldn’t slump or relax, I had to pay attention to my posture and position. The moment I stopped concentrating, I would flop to the left but this never happened, I’m pleased to say. Unless I was demonstrating it to my family.

So how was I able to get from bed to chair I hear you ask. It was an amazing piece of equipment called a rotastand. Okay, it’s not that amazing and I only ever used it when I was in the Royal London hospital, but me and that thing were close! I truly believe having to lift myself on it engaged my core which helped strengthen my muscles and made sitting easier. Particularly on the day when I  had nine trips to the toilet and six of those were false alarms. Woohoo for the three that weren’t! I also had an Occupational Therapist who gave me my first test and established I only had to work on my higher level thinking so I made that hour in my chair fly by whilst doing sudokus, wordsearches and crosswords. I quite like crosswords now and the metro puzzle page was my best friend on weekday mornings at breakfast in rehab.

When my daughter first saw me sat in a chair she was less anxious around me, she was taking her healthy baby snacks from me and talking a little. She seemed less frightened of me. I was in awe of her when she was walking. I was, and am, so grateful. Occasionally, I’d cry tears of joy, thanking God that my child was okay. She was and still is, my most prized possession. I was so happy when I saw her each day. The pain was always there but my heart was filled with an abundance of joy and gratitude. I had to be patient, very patient. This was a long road (even longer than I initially thought). It was as if seeing me sat in a chair was one step closer to ‘normal’. My family were amazing at making me feel normal and really made me feel so proud of myself for being able to sit. They too, were very proud of me and happy because I could have died several times, I could have been paralysed but Thank God for His endless mercy, He made me able to progress, kept me safe and in good health. My memory was intact as was my intelligence, ability to understand and more.

There was one day where I felt nasty… you have bed baths and sadly that doesn’t include washing the hair. I asked when I could wash my hair. Turns out the nurses had to check with my doctors because the stitches, or rather, staples from my craniotomy were still in my head and that’s my biggest scar. First we had to establish if they could be removed and then when I could have my hair washed. Taking the staples out was painful and the sound was disgusting. I remember thinking surely being stapled couldn’t have hurt that much because I don’t remember that pain but cutting them out with clippers was loud painful and it was grazing my head. A while in I told the nurse to stop, she just finished throwing everything  away and told me she was nearly finished when I bucked up the courage to endure the pain. As soon as she was done clearing up I told her she could carry on. What can I say, I’ve always had terrible timing, ha.

One day, towards the end of my stay there, one nurse insisted on giving me an actual shower, up until now I had been told I was allowed to because of my trachiostomy, the tube and being hooked up to oxygen. This lovely nurse said she’d put a towel around my neck and my first shower in five weeks felt like the ultimate spa treatment. I felt amazing, I felt so clean and refreshed. That first shower was just days after Eid and I was slightly gutted I wasn’t squeaky clean in time for Eid and also gutted i missed Eid prayer in the park. Anyway, everytime I transferred from the bed to my chair it took one or two nurses, a whole bunch of unhooking and hooking me back up once I was settled into the chair. I even had to make sure my external bladder was with me at all times. I’ll never forget the day my physiotherapist hooked it onto his pocket and was so casual about it. He hooked a pee bag to his trousers. Gross. Even if it was mine. Still gross. But they’re used to it I suppose.

I remember being so proud of myself for getting out of bed. That rotastand was my best friend. It’s so sad. I saw a rotastand in rehab about a month or two after getting there, is it sad that I got excited?!

Everyday after seeing my daughter in the Royal London was progress for me. Seeing her motivated me and it gave me something to work towards. My recovery was getting faster, I was constantly laughing, joking and sometimes, up to no good.

I had always wanted to homeschool my daughter, being a teacher made me quite snobbish about schools and I frowned upon them. I didn’t know how long I’d be in that state, I didn’t know if If’d ever be remotely like my old self, i didn’t know if I could teach again. So I made plan, I told myself if I have no choice then I’ll put my daughter into school, reluctantly. She wasn’t attending playschool or toddler sessions yet, I was just looking into them before my stroke. I had to wait until she was a little more sociable and comfortable playing in the park because for me, that was a good indicator for how she’d be interacting when it comes to other children.

I wrote a note to my family telling them to enquire about a preschool near us that I mostly approved of. My family initially though I didn’t know my daughter’s age but I explained there was a waiting list and I need to apply just in case I wasn’t able to do what I planned. My daughter’s happiness was everything to me. Seeing my parents happy and grateful I was alive was everything to me. My dad is one of those soft and quiet guys, he is rather panicky if anything happened to his loved ones, especially his children and I’m the youngest in my family. I remember being very concerned about my dad and how he was feeling. I made sure he was always happy, smiling and okay. At the time he was in charge of looking after my daughter whilst I was in hospital since I was with my family when it all happened. I wrote a note for him on one occasion, “Always be happy and always smile for (daughter)”, it read. I folded it and stuck it in his pocket. No matter what happened to me I wanted to make sure my daughter was surrounded by love, laughter and happiness. This particular event happened before I found out my dad did CPR on me and was the first person to actually save my life, by God’s Will, of course.

As mentioned in my previous post, despite being through the worst of it all and surviving, my coughing would cause such bad headaches and being suctioned numerous times a day would cause so much pain I would turn beetroot red and felt like I might die on two particular occasions.

My family had continuously told m how brave and strong I was to endure what I had. Sever times my family wouldn’t complain of their pains or ailments because it was no comparison to what I had endured. Now though I can say this. My family were grieving, for the first three weeks of me being in hospital they were the strong ones, they had to be brave, my dad got so choked up about it he didn’t really talk to others for a good week or so. One of my sisters was ready to prepare for my funeral, another one was ready to raise my child the way I would have wanted. My family consistently showed patience and perseverance during that time. They had each other and their belief and faith in God. They prayed so hard and a close and strong family became even closer and even stronger. During that time I was just me. I did nothing. In fact, I pretty much slept through the whole thing so I didn’t have to be strong or brave, everything was being done to me without my knowledge so I just lay down and chilled. The time when I had to be strong, in my opinion is when I went to rehab from September 13th onward. That’s when I was grieving, not that I had lost anything but I had to come to terms with what had happened to me and how to go about getting through the next stage and not giving up. Truly, God is great, if I didn’t have my baby girl, I don’t know if I’d have been as motivated or determined as I was.

I now know and say, my daughter is my kryptonite. She is my one true weakness. She can break me. Yet she also has the ability to build me up again… Kids are great. They are a blessing and a gift from The Almighty ❤

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