Cubface and Mama Grace

A 25weeker with a 10% chance – 10 years on

A post from the 9th June 2017, Cub’s 10th Birthday.

My Dearest Cubface,

I know how lucky I am to be writing this. I didn’t think you were alive when you were born, they wouldn’t tell me, you shouldn’t have been.

The room was silent. Full of people, yet silent. You were 14 weeks premature, I was 23 and blissfully naive as can be, in shock, in pain. This was when I first felt true desperation. I watched them force a tube down your tiny throat and your leg flinched, you must be alive. This was when I first felt true relief. I had no idea how bad things would get. The Polaroid camera wasn’t working in intensive care that night, I didn’t have a picture of you, I couldn’t see you for hours. When I was finally wheeled to your bedside I was happy, I shouldn’t have been, looking back at pictures it’s a sickening sight, but I was. You were my baby and you were alive and I was still blissfully unaware of the rollercoaster I’d just strapped myself into. This was the first time I studied you, your tiny, ravaged body and your sealed eyes, your beautiful face. You had tubes and wires, you tried to cry, I can’t imagine the pain you endured.

Within 24 hours you’d hit your first major hurdle, an Everest sized hurdle – your brain was bleeding. Babies as small as you shouldn’t be in this harsh, cruel world, you weren’t ready yet and your body was failing. The doctors, the miracle workers, gave you a 10% chance of survival. This was the first time I was told to prepare myself. I’m not going to lie, I didn’t have blind faith you’d survive, I believed in you but given the facts it seemed insurmountable, so I prayed. This was the first time I planned your funeral. I don’t know how much time passed but you, being you, stubborn and unwavering, weighing just 800g, climbed Everest. You lived. This was the first time I researched premature baby complications. On a list of ten, you ended up battling nine.

The next few months spent in hospital you became infamous. Infection after infection, numerous bowel surgeries, laser eye surgery to stop you going blind, horrific tests, necessary torture, damaged, scarred lungs, brain scans, x-rays, needles.. you overcame it all, with a lot of help from a team of miracle enablers, you proved yourself to be a true miracle. This was the first time I believed in miracles.

You came home, we became free, we lived some of our happiest days in our little house. It wasn’t without its blips, life was hard. You were on oxygen and would stop breathing often, I could scale 14 stairs in 2.5 seconds to revive you. You had terrible reflux and were continuously fed, your organs had all been born too early. We stayed in hospital quite a lot, your lungs will never be perfect. You had a lot of appointments, early intervention was crucial to help you live the best life possible. Numerous surgeries, hearing aid fittings, cruel eye tests, brain had such a tough time but amongst the medical drudgery, we found our moments of pure joy. This was when I first felt true happiness.

You learned to sit. You went to nursery. You met some milestones, at your own speed, on your own curve. You were still tube fed, had never spoken, your development wasn’t normal, your muscle tone worried the doctors, they were confused as to why you were floppy instead of tight, your brain scans didn’t match up, you were always a bit of an enigma. People told me you’d ‘catch up’, I’d smile and nod, but I knew you were different, I knew you wouldn’t be the same as everyone else. I didn’t mind, I loved you, I wanted you the way you were. This was when I felt acceptance, when I knew our lives would be different.

When you were 4 you had an operation. It was supposed to be quick and easy, to stop you vomiting, your reflux was very severe and you hadn’t grown out of it like they suggested you might. You were very thin, feeding was miserable, you were old enough now, it was the right time. The operation went wrong. Your surgeon, your lifesaver since birth, had to open you up because you were full of scar tissue from all your other surgeries, he nicked a nerve and your digestive system shut down. I asked if you’d die, they said you might. This was the first time I fell to pieces. It was, without a doubt, the worst day of my life. I became hysterical, nobody could calm me down. I stayed that way until a more familiar doctor arrived the next day and told me you’d be ok, but it’d take time and intervention. You were in there a month. They put you through such torture that month, you were older now, you fought and cried and begged for my help. This was the first time I questioned myself. Should I have put you through that?

Months later I realised yes, I should. Once recovered you could no longer vomit. Bad for tummy bugs but great for weight gain. You went from strength to strength, you didn’t have to sit so long for feeds and became more mobile, you eventually learned to stand and take steps! You weren’t losing calories so had extra energy to learn, you became a genius, learned to write your name, to count, to sign and socialise. You were content. This was when I realised that sometimes you have to suffer to survive.

I’m sorry for everything you’ve been through, the pain, the desperation, the fights, the torture, the tests, the tears, the fear. I’m sorry that when you sometimes begged me to make them stop, I didn’t. I had to let them keep you here. They kept you here. Look at the time you’re having, you are a star in a dark sky. You have made me who I am. I am stronger than I ever though humanly possible because of you. The last decade of our lives has seen earth shattering lows, seemingly irrevocable situations that I didn’t think we’d make it back from. But the highs, oh the highs, you walked out of your bedroom this morning. You walked! To get into your wheelchair, to go to school and sign to your friends that it’s your TENTH birthday. To have a class party thrown in your honour, to sit at a table, breathing on your own, smiling at your everyone, using your eyes to look at presents, using your hands to clap and your ears to listen to people sing to you. Using every bit of the impaired senses you have. Enjoying every moment with an uninhibited joy we can only dream of. You rarely moan, the world is so confusing to you yet you just want to line up cars, listen to music, watch lift videos on YouTube, learn new skills and walk. You want to shop and go to the park and laugh. You’ll never worry about the state of the world or money or heartbreak, your innocence is enviable and precious. This is the not the first time I’ve felt so proud I want to burst. I want the world to appreciate you like I do! You make it a better place. I know it might not be forever but right now, in this moment, you’re here, we made it and I’ll be eternally grateful that I’m your Mummy, I’m the one who got to ride this rollercoaster with you. You’ve got the love x ğŸŽˆğŸŽˆğŸŽˆğŸŽˆğŸŽˆğŸŽˆğŸŽˆğŸŽˆğŸŽˆğŸŽˆ

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