Bent Knees, Botox, and a Wobbly Four Year Old
I was born three months premature and battled the odds to stay alive, with the facilities of a 1970's neonatal intensive care unit to help me. As a result, I developed cerebral palsy. Doctors ran extensive tests during my childhood and told my mother that I wouldn't walk until I was 15 and I wouldn't be able to write properly.
I walked at six years old. Fast forward to adulthood and I married, had a brood of five children and became a freelance journalist. The doctor's predictions that I would never write properly couldn't have been further from the truth.
My husband was also disabled with a genetic, muscle wasting condition called hereditary motor sensory neuropathy (HMSN) but neither of us cared. We were determined to get on with life and prove to an able world that most disability is in people's perception, rather than physical, so we threw ourselves into parenting our larger than average family with gusto. The last two children were both born at home in totally drug-free childbirth, one arriving so quickly, she got there before the midwife did. My son was born almost as fast, 40 minutes after help arrived, weighing a hearty 9lbs, 1oz. As I am only five feet two and smaller than your average teenager, this was quite a feat and something that the medical profession had told me was not possible. I was delighted to be able to prove them wrong again!
We didn't require any kind of assistance at all, ran our own businesses, did all household chores and raised our children by attachment parenting without help. I was a proud, breastfeeding momma who breastfed until they were nearly four years old, slept in the 'family bed' and made sure they had nothing but healthy, organic food. I was pleased that I had never had to rely on anyone else. My oldest child is now 16 and turning into a beautiful woman who is completing her exams at school so she can go on to become a photographer.
Then one day I noticed that my son had started falling over a lot – I couldn't get from one end of the street to the other without him falling over at least four times. That's when everything began to unravel dramatically. I knew that was an initial symptom of hereditary motor sensory neuropathy and although I knew it was a risk for my children, you always hope that they won't have it.
After a particularly disasterous shopping trip with my frustrated child with chaffed knees, I took him home and decided to examine him more closely. The changes are so subtle and slow in their development that you don't always notice. When I took his socks off, my heart sank. Some of his toes had gone curly, a classic sign of HMSN in our family. I was gutted but still clinging onto a vestige of hope that my observation and mothering instinct might be wrong.
It was the weekend of the Royal Wedding so the doctor's office was closed and because it was an extended bank holiday weekend to celebrate the marriage of William and Princess Katherine, his office would not open again until Tuesday. That weekend was awful. I sat glued to the TV, trying to concentrate on Katherine's beautiful dress, but I couldn't stop worrying about my son.
One of the other symptoms of HMSN is a lack of lower leg reflexes. Normally, if a doctor taps you with a tendon hammer, your knee jumps up in protest. When the trainee doctor tapped my son, he did nothing and just sat there. She tried again, and still, his knee didn't move. She tried to reassure me that it was probably just because she was in training and she wasn't sure if she was tapping him right, but I knew there was nothing wrong with her technique. A senior doctor was called in and he repeated the test, with the same result. They referred us to the pediatrician. The pediatrician ordered a blood test that would determine whether or not he had an extension on his chromosome 17 – the cause of HMSN – but told me he thought I was wrong, he said children with the condition had high arched feet and my son didn't, but the high arches don't normally develop until the age of seven or older in my family and my son was only four, so I just knew the pediatrician was mistaken. We left the hospital, with my son clutching his arm and crying from the pain of the blood test (and me feeling like the worst mother in the world for subjecting him to that) with instructions to come back two months later for the test results.
When we returned, the pediatrician said, "Well, I think you're a good mother, because you're right, he does have HMSN and I didn't notice it at all, it's the mildest case I've seen."
He kept apologising to me as if somehow it was his fault my son was disabled, but I waved off his concern. I did all my crying in the months before and wasn't about to start doing it again. Then the pediatrician looked at me and asked
"What about you? Are you okay?"
He meant was I okay physically. He had noticed I was in pain. For over a year, my joints had become progressively more stiff and this particular spot on my leg was painful but I didn't know why. I just assumed it was part of the cerebral palsy and was because I was now in my 30's and when you're disabled, doctors always tell you to expect more joint pains and maladies 'because you're disabled', so I didn't go to the doctor. I thought maybe it was because I'd strained myself doing physical therapy and it was my fault for not keeping to a regular schedule.
Now, however, the pediatrician had caught me out and there was no getting away.
"You're in pain – where is the pain?"
I pointed to the spot on my leg.
"I think that's your hip – I'd like to X-ray it."
"What, NOW!?", I exclaimed, surprised.
"Yes", he insisted, "I don't want you to leave this hospital until you've been X-rayed".
This was pediatrics and before I knew it, I was being wheeled up the hall to children's X-ray. Cartoons adorned the walls. I felt like a prize idiot and apologised to the X-ray technician.
"I bet I'm the oldest kid you've had in here for a while"
"Oh don't worry", she said, "I've X-rayed bigger teenagers than you."
She took the pictures while my son played with cars behind the leaded screen and then attempted to give me a sticker that said 'I was good, I sat still for my X-ray', but I just looked at her oddly for a moment and she laughed and gave the sticker to my son.
Back up the hall and I was instructed to ask for the surgeon. The receptionist looked puzzled, "But you were just here for your son?"
"I know", I said, "But now they want to see me too."
She looked totally confused – I suppose I was the first adult patient she'd ever had in pediatrics. The surgeon ended up finding me and ushering me into a side room. He held up my X-ray picture.
"You've got osteoarthritis, your hip socket is worn away and your hip has dislocated, you are going to need a total hip replacement."
I stared at the X-ray picture in shock while the surgeon mused about how I was only 34. Hip replacements don't last forever, just ten to 20 years if you're lucky, so I knew I was in for a lifetime of operations. It was too much to take in, in one day, too much bad news.
I went out to the parking lot to wait for my friend and as soon as I saw her I burst into great, racked, sobbing tears. She looked shocked.
"What on earth's the matter!?"
"I just found out my son's disabled and I've got arthritis and my hip's dislocated and I need a major operation!"
As is British tradition in times of crisis, she immediately suggested a cup of tea, so we drank tea in the hospital canteen until I'd calmed down.
They tried giving me a steroid injection – that was useless and wore off after three weeks. The anti-inflammatories didn't make a blind bit of difference. They even suggested botox injections to paralyse my muscles so they could move my leg into a more advantagious position for surgery. Trying to see the funny side, I laughed "Can I get some of that in my face, too?"
Sleepness nights with five children over 16 years does nothing for ones complexion. I had age lines and I wanted to get rid of them. There had to be some advantage to this nightmare scenario.
The doctor seemed rather put out by my question.
"Botox is a serious treatment", he scoffed, "it's not just a beauty therapy."
Since then, my supplements stopped helping, the over the counter pain meds stopped helping and it got harder and harder to walk until by Christmas I was no longer able to leave the house. I couldn't even get over my front doorstep. The physical therapist couldn't help me because I was in too much pain to even lie on the bed and I had to call the emergency doctor to my home in the middle of the night because I was in agony. I had to cancel all my social activities and most of the children's social activities. Even cooking a meal can be challenging. The doctor had to give me morphine and that is the only reason I can do anything at all. I'm now in a wheelchair and have had adaptions put into my home to enable me to live there, like a bath lift, stairlift and grab rails and for the first time in my life, I had to ask social workers for help. The shock was immense. Of the two disabilities, arthritis is definitely worse than cerebral palsy (at least for me), but I am still managing to raise my family with a little extra help from others, and I've been humbled as a result. My eldest daughter sometimes takes me out in my wheelchair and people think she is my sister. I sometimes feel uncomfortable about her helping me, but as I reminded her, I changed enough of her poopy diapers!
The right hip started to hurt too so I will probably need more than one operation and the recovery is long and painful, but I am looking forward to when I can walk again so I can give my children the future they deserve and be the mother I want to be. The moral of my story is, go and see your doctor if you notice something is wrong, don't put it off because you're concentrating on the kids – they need you so it is just as important for you to be well, and never be too proud to ask for help. It isn't a sign of weakness but of community.