In 2006, I gave birth to my twin daughters Erica & Sophie at 24wks gestation and for those that have also experienced premature births, I’m sure you will agree it is a very traumatic experience. A rollercoaster journey which for us is still very real.
Both Erica & Sophie have Cerebral Palsy due to their early arrival, but it is Sophie who is severely affected. Sophie has the most severe form of Cerebral Palsy, with a significant amount of associated medical and health care needs requiring 24/7 round the clock care. Last June Sophie became very unwell with respiratory distress, and an increase in seizures resulting in almost 5wks on a HDU ward. Just a few short weeks later, after celebrating her 9th birthday at home with her sisters and the rest of the family, Sophie deteriorated with respiratory distress and again was blue lighted back to hospital. At that moment, my thoughts & feelings were very raw.
Emotionally I felt broken and exposed by the deterioration of my little girl’s health and the battle I was still fighting to co-ordinate her services, but most of all I wanted Sophie to know regardless of my feelings and the battles we fight, we will never give up on her, and that is why I chose to write this very personal letter….
To my beautiful baby girl Sophie,
As I sit here watching you sleep so peacefully I have time to think back over the last few months. Time & quiet is never good for a Mummy of habit who keeps herself busy so she doesn’t have to think about what has been and what’s to come. Your hospital room is quiet, all but for the sound of the little breaths I hear you exhale from your ventilator & the occasional monitor beeping. Sat quietly in the dark I can still see the lights from your feeding pump and saturations monitor, with what looks like a beautiful day to be had outside, some natural sunlight trying to peak through your curtains.
It’s hard to know how much you understand sweetie but Mummy & Daddy both know you’re uncomfortable & frustrated. We see you struggle from time to time, we see the anxiety in your eyes, especially the blue lighted trip to hospital yesterday. We see the pain take over during a dystonic storm & we see inquisitive glances you give when you want to know why? We could tell you it’s because you came out of Mummy’s tummy too early but that wouldn’t matter sweetie because you’re a fighter & always have been. You have so much strength & resilience it leaves me in awe constantly. Whilst others may complain of a headache or a touch of the flu, they’ve never seen what flu can do to you.
Mummy & Daddy want to tell you it’s going to get better, more than anything that’s what I want to tell you…….but the truth is sweetie we don’t know. We know you’re getting tired & your little lungs have to work really hard every day. We know your scoliosis is having an impact on your body & we know in 51mths your Baclofen pump (that we agonised over for months) will become redundant. The hardest thing for Mummy & Daddy to ‘know’ is that if we don’t find something to replace the Baclofen pump, well then you could be in more pain with the spasms & dystonic storms only worsening. Mummy & Daddy are doing everything we can to make sure that doesn’t happen sweetie & just as you have always shown us…..we will never ever give up until we find an alternative treatment.
I want to tell you I wish I didn’t have to do all these unpleasant procedures to keep you safe but I know you understand that Mummy changes your tummy buttons & clears your airway because I love you & I want to keep you well & at home with us all. And I know you don’t like strangers having to do any of those procedures, especially the nasal suction but you’re so tolerant & brave sweetie, always with a little smile at the end. I wish we could get you more therapy to help with your aching muscles, I know they must hurt with your storms being equivalent to an 18hr workout at the gym. I wish I could make those that have the power, the decision makers, see how much support you need to live a safe, happy & fulfilling life just as any other 9yr old little girl exploring the world infront of her. Mummy & Daddy shouldn’t have to fight for it or prove that you need support sweetie. My Mummy & Daddy used to tell me that children don’t come with manuals. They were right, no parent is given a manual when they have a child, least of all a parent who has a child with significant health care needs. Nor do we study to become nurses & gain qualifications. We are not nurses sweetie but you know Mummy & Daddy love you & will always do everything we can to enhance your life & give you the very best.
My biggest wish though sweetie selfishly is for me, I wish I could spend my time being your mum & enjoying all the time we have instead of putting together care plans & training would be carers or going to meetings to only plan more meetings. It baffles Mummy when I know exactly what we need to keep you safe & thriving at home but yet I have to spend weeks on end pushing for that care or review or meeting to still get nowhere. Please know sweetie you are not complex, nor have you ever been. You are our beautiful & strong, determined daughter who is living her life the way your body allows you. It is the services that are supposed to be in place to support you & us our family that are complex.
I know you’re tired sweetie but keep fighting & never lose your zest for life baby girl. Mummy will NEVER stop fighting to get you what you need.
All my love always & forever, your Mummy xxxxx