I’ve seen many Doctors over the years for help with my depression. Each time, in a less than ten minute appointment the GP has decided (a different) reason for the way I feel, and prescribed pills as treatment. Having moved around a lot, and being otherwise healthy, I have never seen a Doctor regularly and therefore none of them could say they knew anything about my life. The reasons they have come up with have been varied and predictable, but the very worst reason anyone has ever come up with is that my depression is caused by the fact that my youngest daughter is severely disabled. This deeply upsets me and makes me very angry. My baby girl has a lot of difficulties and life with her is not easy, but to suggest the suffocating darkness is anything to do with her at all could not be more wrong.
My little lady was born at 32 weeks by emergency C-section when she stopped moving. At the scan done the day before she was born it was discovered she had stopped growing at 28 weeks and had very little water around her. We were lucky she was still alive. We had had no indication during the pregnancy that there was anything wrong. At the 20 week scan the only comment made by the sonographer was that baby’s head was “on the smaller side of average”. I remember asking if that was a concern and she said it just meant the birth would be easier. Although I remember that conversation clearly, there was no reason to think any more of it. If she had been born around her due date, there would have been 2 years and 10 months between our two girls. My Husband and I often talked about our hopes for the future, what we anticipated the girls would get up to, we were excited about watching them bond and play, learn and grow together.
On the way to theatre for the C-section, we were warned that when our daughter was born, she would be taken straight to Special Care and we shouldn’t expect her to cry. Of course, even then she did the exact opposite of what was expected of her and came out absolutely screaming. She spent her first 6 weeks between the Special Care Baby Unit in the local hospital and the Neo-Natal Intensive Care Unit at the Specialist hospital an hour away. At just 3lbs 5ozs (1.5kgs) it seemed impossible to us that this tiny little person who we weren’t even allowed to hold until she was 12 days old would ever survive. During those weeks we were told that our little one would face a lifetime of problems but being so small, we would have to wait until she started to develop to see exactly what – and how serious – any difficulties would be.
The first few years of her life felt like we lived at the hospital, we needed an ambulance for our daughter almost weekly – we were so well known by the call takers on the 999 service that they knew both our girls names without needing reminding, and the paramedics would all know our youngest’s history without asking when they arrived. It was a scary time as we juggled our eldest starting nursery and school, whilst learning more about what was wrong with our little girl. There was no routine, no sleep and constant worry as we tried to adjust to our new life.
Seven years down the line and life is a lot calmer. Not because things are necessarily better, but because we have names for the various conditions our little lady suffers from, we have experience in many different procedures we wish we didn’t, but which mean we can keep her at home with us instead of needing an ambulance, and because as a family we are stronger than ever . Our eldest who saw the inside of too many hospital wards when she should have been enjoying being a toddler, has developed a very special bond with her little sister. She is ever so protective of her, and although things are very different to what we had planned, their relationship is just as special – perhaps even more so.
On paper the facts are not good – our baby girl has many complex medical problems caused by brain damage during her time in the womb (no cause for this has ever been found). These include severe and uncontrolled epilepsy (she struggles with hundreds of seizures a day), severe spastic cerebral palsy which leaves her unable to roll/crawl/sit/walk, she is blind, completely tube fed since developing an unsafe swallow after a prolonged seizure, she has microcephaly (the meaning of which translates as “small head”. Perhaps this was picked up at the 20 week scan?). There are many more issues on her list which combined leave her with the developmental age of a 6 week old, and she is very unlikely to reach her teenage years. She requires 12 different daily medications, given repeatedly during the day to keep her alive, needs oxygen when she’s asleep, emergency rescue medication if a seizure goes on too long, she cannot and never will be able to do anything for herself and as she grows the epilepsy is causing her to lose key skills – eating and smiling being the main, most upsetting ones she’s lost so far.
All of that makes for quite hard reading, and that’s what the medics focus on, But they don’t see the little girl we do. They don’t see the way she comes alive when she hears music she enjoys, the way she listens intently when Peppa Pig is on the TV, the excitement she shows when her sister comes home from school and she hears her voice for the first time in hours. She has taught us all so much, that going for a walk and feeling the sun on your face or hearing the leaves rustling in the trees can be just as enjoyable as spending money on a day out. That time with loved ones can make you happier than anything else.
Life with our youngest has had its ups and downs, it has been terrifying when we’ve spent hours in Resus willing her to pull through, exhausting when we’ve gone night after night with no sleep, but also amazing to see her achieve the smallest of things like holding onto a toy or finding her mouth with her fingers. Her seizures are getting worse as she gets older, and we are more than aware she could leave us at any time, which also means she has taught us to live for the moment. That every day we all wake up is a bonus and something to be celebrated and not taken for granted.
It is really hard watching your child suffer so much but it doesn’t (for me) cause depression. It is sad, it is heart breaking, it is incredibly difficult, but my daughter’s struggles are not – and never will be – the reason I have to fight my demons. My baby girl fills me with joy and hope and she fights with a strength that I can only dream of. Any suggestion that my depression is related in any way to my beautiful and brave daughter is insulting and hurtful to us both.