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It Occurred to me Recently

That life is fragile. I know we all know that but I’d say lately more than ever I have felt this the strongest I have ever felt it.

I turn 30 soon. For some reason a lot of people attach a lot of meaning to it and it has sort of become a bit of a stigma. “By the time I’m 30 I want to have…” sort of like an early mid-life bucket list.

My issue though is this. As someone who has a compulsion to overthink, overanaylyse, and ascribe meaning to everything… why do we place so much value on lives when they have ended? When you tentatively click maybe or cant go on a party invite… woule you have that same response if it was to rsvp to a person’s funeral or memorial? If so, why?

Is it because you are in day to day mode trying to juggle different responsibilities? Is it because of logisitics ie childcare or work responsibilities? Would those things apply again if it were a funeral or would exceptions be made and plans in place?

Your attendance to that funeral matters far less than your attendance whilst that person is alive. It’s about making that person know that their life has value whilst you are there to show it, not when they arent there.

Do we care so much when someone is gone because it highlights our own shortcomings? Is it a reminder or the times we werent there so we go to feel better about it? I know not always. But sometimes.

Is it because in a moment of assuming immortality we think there will be a next time? We become so complacent in routine that this time doesnt matter, there will be other times.

I am guilty of all of this myself. I dont say this to call anybody out or make anyone feel bad. I post it probably because lately ive become quite introspective, with that usually comes heightened anxiety and awareness. To think of people leaving their home and to never return because of an attack petrifies me. Those who know me will already know what an anxious wreck I can be… lately this is intensified. I feel a level of perpetual but subdued grief, but simulataneously a level of desperation to have purpose, to feel value, to help people. But anxiety can be debilitating. I can think one thing and do the other.

I can feel an urgency to complete tasks and yet be barely able to move. I can feel a desire to just lay face down in a pillow but be frantically working through a huge list of jobs. There can be a colossal disparity between what i feel and what i do. I hope soon this will change. I have plans, i have value, i have a purpose. I dont want to live feeling at any moment I or indeed anyone around me could die… but I do want to make sure all of these people, including myself know that they matter, hugely.

The Day my Life Changed Forever

So this the birth of my daughter is the most dramatic, amazing, heartbreaking, most everything story I have to tell. I suppose everyone’s “birth story” or “becoming a parent” story is the biggest thing that ever happens to everyone. But I want to write down my daughter’s story before writing my posts about how incredibly proud she has made me recently. I have always been proud of her but this last few months have been absolutely astounding. Nothing can prepare you for parenthood, or birth, or anything like this. The world we were plunged into in 2014 truly defines me today, it also accounts for my perspective of the world, my view of the past, my anxiety of the present, and my aspirations and hopes for the future.

I am a mum. I am a “special needs” mum. I am the proudest person in the world. I am an advocate. I will fight EVERY negative view on disability, I will fight to raise awareness, I will fight for inclusion and equality. I will be that annoying person who harps on and on about accessibility to shops and the community in general. I want to see a world where my daughter and every wheelchair user gets the same rights and access to the world that we as “able bodied” people take for granted. Things have got so much better in the world, but we have a long way to go to fight stigma and assumptions. Anyway, I will dismount my pedestal now.. back to the story… ahem.

Me getting pregnant did come as a surprise. I was pretty well adjusted to nights out, playing with lego, playing video games, going to rock gigs etc… I liked my me time and I liked working full time and trying to build a career. My pregnancy was pretty typical… everything went absolutely fine for the whole pregnancy, I was the right weight, I didn’t smoke, I didn’t drink, I did it all by the book… after all.. I was creating a life! I did eat quite unhealthily but I made sure I got my 5 a day and if not that at least lots of vitamins…

Maternity leave began for me at about 36 weeks weeks. Amy was showing no sign of arrival and eventually I had to have a sweep. At 41 weeks and 3 days my water broke. By the way for me it was nothing like what happens in the movies… I wasn’t even sure that was what had happened until I phoned triage to check!! I knew at that moment I was to become a mum in the next 24 hours.

The next day my contractions began. They were indescribably painful. I can’t even begin to imagine the pain I was in. I remember being on all fours in my front room screaming my head off not knowing what to do. Phil rushed home from work to take me to the hospital.

When I got to the hospital they told me I was in the very early stages of labour and that it might be a benefit to me to go home for a while. I said no… I was in too much pain. In retrospect I am so glad I made this decision because if I had it’s pretty certain Amy would not be here with us today.  A thought that fills me with all sorts of pain. She is the Ash to my Pikachu and so on.

I was given some pain killers and was put on gas and air. All it did for me was make me feel nauseous. The nurses/midwives came in and checked on me every few minutes to check her heart beat. All was fine. They were about to tell me I could get in the birth pool if I want. I didn’t really have a birth plan as I had been forewarned by so many that no matter what you plan… fate or your baby will have other plans. So I thought I would just go with the flow.

After a few hours of being in the hospital the nurse came to do a routine heartrate check.. her face dropped.. she left the room quickly. The senior midwife ran in and urged me to get on the bed and lay on my side. I was so panicked and in so much pain I was shouting that I couldn’t… but obviously I obliged.

Next thing I know I was rapidly being transported down hospital corridors in a bed surrounded by surgeons, doctors, midwives, nurses.. I don’t even know. I just remember screaming “please, make my baby safe”. I was in a deep panic and hyperventilating. The surgeon was explaining that I was about to have a category A c-section. I screamed for them to put me to sleep faster. I remember the mask going on and slowly feeling calmer and dozier. I was asleep.

When I awoke I could hear my name being repeated over and over. The morphine has distorted my reality and my first words were “I’m a robot now.” Something I look back on with both a combination of amusement and heartache.

When I was taken to my room I wasn’t aware of all the tubes attached to me, of my smaller stomach, or the fact my baby wasn’t there. In my drugged up state I felt like they were just preparing her to come and see me. Time didn’t pass slowly at all. My mum, dad, mum in law and Phil were there. I chatted all sorts of rubbish not understanding the severity of the situation whilst everyone around me was worried sick.

Eventually they brought Amy in. The situation hit me at last. “She’s very very poorly” said the midwife. “I’m so so sorry. This… just doesn’t happen”. Everyone was in a state of shock. I later learned that the entire staff involved in Amy’s birth endured a long debriefing as it was a distressing and traumatic time for all involved… after all, it was totally unexpected, totally unpreventable.

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Amy was transported immediately to the city hospital for cooling therapy. She had been resusitated for 8 minutes following the csection and suffered a severe brain injury (one that would come to be know as “hypoxic ischemic encephalopathy – grade 3). The cooling therapy would keep her at 33 degrees to help prevent the brain damage spreading further. The next day I woke up and had a panic attack because she was in a different hospital to me. The adrenaline kicked in and I was shouting and rushing round packing my bags. I forgot I had just encountered major abdominal surgery.

An ambulance took us to the hospital. A doctor met with us. “Is there any hope?” I asked… still drugged up and totally unsure of what was happening. The doctor provided a grave expression and told us she didn’t expect Amy to make it through the night, and if she did she would be a “total vegetable” (A term I have come to detest and advocate against very strongly).

The next 5 days were spent in absolute agony both physically and mentally. With each day we saw progress with our little girl as she lay motionless attached to what seemed like hundreds of machines in the newborn intensive care unit. Compared to the other babies she seemed giant… she was the only baby in our section who wasn’t premature. It didn’t seem right that she was here. I remember breaking down so many times “why us?” “why her?” “will she ever come home?”

I remember the time a nurse told us she had done a wee. This was a huge win. Something you wouldn’t even think about as being an achievement.. this was huge. After a few days they started to wean her off the oxygen to see how she coped. After a few days she was off oxygen and breathing for herself. I well up just thinking about it. A nurse said to me “just think how good it will be when you finally take her home.” At the time this felt like a sick joke.. I had been led to believe that she was never coming home. I thought that eventually they would want to switch the ventilator off or that her heart would give in.

She was having constant seizures and we could see on a monitor every time she was having them. It was heartache like you could never imagine, I cannot quite convey just how incredibly hard those days were for us and how we all got through it amazes me. She fought, we fought, and so did the hospital staff.

She needed constant suction (she had no swallow reflex) and already had pnemonia from aspiration of meconium) and was fed via an ng tube in her nose. I was expressing breast milk every few hours to help give her the best chance. I continued to do this for 6 agonising weeks. I have a huge respect to anyone who manages to breastfeed… pumps hurt a lot more than oral breast feeding.. by the end of it I was in so much pain from mastitis and bleeding. 100% worth it. The csection scar hurt more and more as the painkillers wore off. I had a daily injection to prevent clots and wore anti DVT socks too. The scar was covered with a huge bandage. Just getting up to walk to the bathroom took around 30 minutes. At the time the pain was a sore reminder of what she was going through.

There was a day both Phil and I totally broke down. It was because I spent all morning trying to build myself up to say out loud “why doesn’t she move?”. Later that day a nurse said to me “There are good days and bad days. Today I think you had a bad day… but there is always tomorrow.” Those words will stick with me forever. The other thing that will stick with me forever is my respect for nurses and doctors who work tirelessly in highly stressful environments not only keeping people alive, but also helping encourage people who are experiencing a huge shock to the system. They don’t ever stop these nurses… they are filling charts, checking on patients, performing procedures, washing hands, getting meds… endless tasks. I bet when they get home at the end of the day they ache SO much. I hope they also ache with pride at how incredibly amazing they are and know what a difference they have made to the world that day. Seriously. The most inspiring time of my life. I have so many quotes from nurses, “there is always hope” being one of them. Thank you st marys from the bottom of my heart.

When the cooling cot was warmed up to normal temperature we saw her finger twitch for the first time. How we cried. Our little girl was with us. She could move! We filmed that little finger for such a long time. I am now crying just thinking about it. The first time we held her was on day 4… she was still fully ventilated and it took the nurse 45 minutes to get her safely out of the cot and into our arms.

After a few weeks she got transferred back to our local hospital to the neonatal ward. When she was about 4 weeks old she made her first sound – a cry. We were amazed. When we had met her pediatrician for the first time she asked me what concerns I had… one of my main ones was “how can she tell us if she is in pain?”… well, the cry eventually came and she showed her first signs of communication. We were amazed. I remember telling the doctor that ALL I wanted was for her to be happy and have an excellent quality of life… and this is still true as ever. Fortunately she IS happy and DOES have an excellent quality of life.

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At 5 or 6 weeks old she was okay to come home. We were so happy and so scared!! We were armed with tube feeding supplies, medications, and a suction machine.

So that’s sort of it. The shortest version I could write. There is so so so much more to the story than this but I wanted to get this out there for people following this blog who don’t know me or my story. I will come back to bits of this story in future entries as so many things happened that shape how I think of the world today and how I operate in this entirely new world.

Amy is now over 2. She has severe quadriplegic cerebral palsy… she has mixed cp meaning her muscle tone fluctuates… sometimes she is very stiff, sometimes a bit floppy… she has constant dystonic (uncontrolled/involuntary) movements and literally does not stop moving unless sleeping. She is still 100% tube fed but via a gastrostomy button (on her tummy) and is fed 24 hours a day on a medicated formula via a feeding pump. I will no doubt discuss that surgery on here, and also the many feeding issues we still encounter to this day.

She has progressed so much. In spite of her restrictions her body forces on her… she is an incredibly bright little girl. Cheesy as it sounds she surprises us everyday with her tenacity and feistyness. Everyone who meets her adores her. She really is the best thing ever to happen to me.

I do still suffer PSTD from those dark days.. I do still get flashbacks. But i am getting better. I once collapsed at the sight of a surgeon a year or so ago because it gave me an unpleasant flashback. I am getting better at these things. Now I can focus on where we are now and whilst we do have a lot of challenges and hard times… we can smile.

I hope everyone can appreciate that this was a particularly difficult post for me to write. I know it wasn’t well worded or anything, I just typed and typed and told it exactly how it was. It has been hard reliving it in this amount of detail as usually when people enquire about Amy’s story I only tell a short version, kind of a default response I have made. This post made me relive every room, every conversation, every thought, just everything.

A huge thank you to my amazing boyfriend Phil, my parents, my mum in law, my grandma, all of my family and friends, st marys hospital, stepping hill hospital.. and the therapists who continue to believe in and work with amy and I today. Most importantly thank you Amy for pulling through and for continuing to make my life a happy one.

For anyone interested in keeping up to date with amy and her antics.. search “amy rose’s army” on facebook.

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