Being a mum is one of my favourite things. Actually it is probably the most amazing part of my existence. Becoming a parent has been life changing in every possible way you can imagine. I pictured myself as a mother for many years. I became a step mother in my 20s and a biological mum in my 30s. I wouldn’t change a thing, except maybe having more children. Kids are awesome.
The way they think and act in those early years is adorable. Their zero filter comments and brave, bold desire to be unapologetically themselves, is incredible. Some of my biggest belly laughs, in the last 5 years, have been because of my beautiful daughter. We have identical laughs and often laugh together. We are still in that amazingly cute stage of “up up” and “mummy cuddles” everyday. My daughter looks at the world with such wonder. A ladybird, a rainbow, a squirrel, a big muddy puddle; all spark pure joy in her heart.
I always wanted to be the superhero parent. Fetching, carrying and getting things done. I always imagined taking her everywhere. Coming to pick her up from her friends. Being able to drop everything and collect her from school, clubs and activities. Rescuing her from a hideous party or swooping in on request because she called and said “Mum, come and get me”. Passing on my love of music to her, on our many car journeys, just like my mum had done with me.
When I was just a kid in the 80s, my mum would listen to Anita Baker, Freddie Jackson and Luther Vandross in her car. There would be lots of cassettes in the glove box and always a random empty plastic case with no tape inside. This too was important, mum used that to scrape the ice off the windows in the winter.
Before my daughter was born, my wish was for her to have an amazingly beautiful life that didn’t revolve around hospitals and medical issues. I started working on sweeping that mess away, with my daughter in mind, years before she was even conceived.
Firstly I wanted to make sure I had explored all my surgery options and had the procedures I needed too. I didn’t want to pass on any fears either so first on the chopping block, was my fear of dentists. Quite possibly tied to the PTSD of childhood surgeries, I was petrified of the dentist. I would go only when absolutely necessary and be a total mess about the whole situation the entire time. In my late teens, the only way I would have a filling was by sedation. I would cry during a check up and feel sick for days leading up to the appointment. This had to stop. My child will not see me like this or become this either.
How do you face your fear? Head on apparently, so I went into full orthodontic treatment in my 20s. I had everything done that I had spent years putting off. I had 3 teeth extracted, moulds created, braces fitted, painful monthly adjustments, springs and bands, the whole 9 yards! 18 months later, just shy of my 30th birthday, I had perfectly straight teeth and no more fear of the dentist.
I pushed through with the opticians every 18 months, freaking out until I got the reassurance that I was fine. That suffocating section of the eye exam, where the optician would lean in close with an ophthalmoscope was almost too much to handle. The silence. Frantically searching his face for a positive sign that my retina was ok made me feel physically sick. I would be literally sweating. This rollercoaster was not fun but I needed to nail this one. I didn’t want my child to fear an eye test. One bad experience when I was 17 was not going to cast a shadow of fear over me every 2 years for the rest of my days!
I spent the next few years completely focused on my health and after nearly 10 years of daily medication for Ulcerative Colitis, I was free from all pills and potions and ready physically and mentally to have a baby. At 37, time was not on my side and 3 months into trying for a baby, my husband and I had to slam on the breaks. I had found a lump in my breast. It took another 6 weeks from the GP to scan, to find out I was ok and 3 months after that I was pregnant.
I prayed that my daughter would be healthy and not have the trials that I had to endure. It was also important for me that my medical past would not wash up on my daughter’s sandy shore and wreck the paradise I wanted to build for her. I had done the work. Mentally, emotionally and physically. My daughter is perfect. Now I could be the mum I had always wanted to be. The superhero. Free from my past. My daughter wouldn’t have a life filled with hospital appointments. I wouldn’t have a life full of hospital appointments. My tears, dread and anxiety were behind me. It was a long road, years in the making but my prayers were answered. We were about to embark on a wonderful hospital free existence! The physical and emotional freedom of my dream was euphoric.
As we know, that dream came crashing down around me in an epic fashion.
My Ulcerative Colitis free zone lasted 4 months after delivery. I was hit like a freight train by a massive relapse. My bathroom visits were now a family affair. Luckily my baby daughter found her mummy sitting on the toilet quite funny. It’s hard to put your cape on and fly, when you’re crawling across the floor with unimaginable abdominal pain. It was all so familiar and yet my brain had forgotten what it was like to be sick. I didn’t appreciate the reminder.
I pushed through it like a boss. You know what they say:
“I didn’t come this far to only get this far.”
My daughter was 2 years old when Retinitis Pigmentosa made an unwelcome return into my life. Almost overnight, the hospital letters, appointments and scans came flooding back. Sometimes I could get childcare in place, in a last ditch attempt to keep my girl from this aspect of my life. Other times I wasn’t so lucky and had to take her with me. My heart was shattered to see my little girl happily colouring with crayons in the waiting room. I sat alongside her, waiting for the millionth person to call my name in a clinic setting. Having been told at 17 years old that this RP trip was over, the return to this nightmare was almost too much to bear.
My life had been an endless stream of appointments, procedures and bad news. All I ever wanted was for my daughter to have a life free of my medical crap. I had waited. I had worked hard. I had prayed.
In weak moments, I still look up and think
“Why couldn’t you just give me this?”
I’m now back to being a complete wreck at optician check ups. Back to attending regular hospital appointments. The sad thing about PTSD, is that even when I’m not at an appointment, part of my mind is trapped, roaming those corridors. Being wheeled into operating rooms on beds. Watching and counting the lights on the ceiling, as porters and nurses look down at me. Part of my mind just can’t leave.
Nowadays I can’t always fetch, carry and get things done. I can’t take my little girl everywhere now. I can’t pick her up from every friend’s house and as time ticks by I will be able to contribute less and less. As I watch my Superhero dream slip through my hands, I desperately look for the positive…
My daughter is happy and healthy and I’m so thankful for that blessing. The paradise that I had been building for her, for many years, now looks a little cloudy and my medical past is slowly floating towards her shore like flakes of driftwood. I’m holding the sheer joy of my precious daughter in one hand and a heart full of sorrow in the other. I’m so sorry my darling girl. I wanted to protect you from hospitals and my medical past. I tried so very hard, for many years, to keep you safe from this part of my reality.
As I mentally slide down the broken door of my hospital life, that I had tried with every inch of my being to keep closed for years, I feel heartbroken. I try not to allow my mind to leap forward too much. Watching other mums taking my daughter places because I can’t anymore is like a knife in the heart. Asking for help all the time is a constant reminder of what I used to have but don’t anymore. I won’t be able to rescue her from that hideous party or swoop in just because. The many dreams I had of road trips with the windows down and volume up lay shattered. My past is not only my present but my future too.
My daughter’s eyes light up when she sees me at the moment and that’s everything. She still sees me as I always hoped she would – the Superhero. Her tiny body relaxes into my arms, feeling completely safe that her mummy can protect her from anything. Right now, I’m still protecting her paradise with everything that I am. That door may be broken but I’m manning my post until that fat lady sings.
I don’t want her to feel the same way I do about being visually impaired. I feel like half a person. Not as worthy or important. The thought of her finding my disability embarrassing, frustrating or something that holds her back is terrifying. As she sits next to me giggling on the bus, I find myself wishing the journey would last longer. The “Mum, why can’t you drive like everyone else? “question is probably not far away. I’m holding on but there is an awful lot of driftwood and I can’t keep it all off the beach.
I can’t change any of this and my only shot at changing her future mindset is changing my own. In an ideal world, I want my girl to be completely cool with her mummy being a VIP (Visually Impaired Person). “Yeah my mum’s blind but that doesn’t stop her from doing anything. She still takes care of everything at home, works, goes out and kicks ass!”
Right now I have no idea what my new 100% is. I have no clue how to be a kick ass visually impaired person. I don’t know how the new version of me can make this new reality work. I don’t want to limp through my new life. I still want to fly. After all, I have a little girl’s paradise to look after.