Last night Nathan said 'Nathan'. Almost five and he's cracked it, he can say his name. I admit it, I squealed. 

We've had long times of saying 'no' when asked for his name, then he called himself 'Naynay' for a long time. In the last month or so there was a shift to 'Naynen' and then finally last night the 'th' appeared. He beamed with pride. 

Some cliches are true. The one where they say that it may be tough to have a child with special needs, but that you will never know joy like the joy you feel when they achieve things that others take for granted. That one is true. It is very true. 

He managed to pull to stand over Christmas and oh my the whole world was told about it. It's the first thing I said walking back into the office after the break.

There simply is no joy like it. And it way outweighs the occassional bouts of heart ache watching him struggle with things. 

List of things that you don't expect to come with your child when you're still pregnant and dreaming:

Walking frame (First Rifton Pacer, now the far more exciting bright yellow R82 Mustang!!)
Tripod walking stick
Specialist Trike (Possibly the only non breathing thing we would rescue from burning house)
Leg splints
Oversplint boots
Kneepads
Arm splint
Botox injections
Juni chair
Size Two Mountain Buggy age 5-9 (when folded almost too big for even my boot)
iPad with speech software (Think Stephen Hawkin with pictures)
Physiotherapists (let's hear it for the amazing Heather and Julia who have looked after him for nearly 5 years now)
Occupational Therapists
Speech therapist
Paediatric Consultant
Orthopaedic paediatric surgeon
Fantastic special school 
Specialist school transport (Jackie and Dermot are the best)
Disability Living Allowance applications
Motability Cars
Blue Badge (A blessing and a priviledge)
Ignorant Health Visitors
Statement of special educational needs
Home-school books
Referral forms, application forms, charity grant forms

But hey

Who cares. We've got this. So worth it. 

Have you heard of the poem 'Welcome to Holland'? It is about how it feels to find out that your child is autistic but can just as easily be applied to many other disabilities. If you do not know it, you can read it here. As far as I know parents of disabled children either love it or hate it. I must confess I really do not like it. Life with Nathan is not, and will never be, a second choice destination. He is a true gift from God and my perfect child. The best way I can sum it up is 'I never felt entitled to Italy', with Italy presumable meaning having a child that has 'nothing wrong' with it. Children are precious gifts, whether or not they can walk, whether or not they are autistic, whether or not they have behavioural challenges. It does not change their value as a human being. My life would not have been better, richer or nicer if Nathan had not been brain damaged. Easier maybe. But not better. It would have been very empty if he had not been born. 

A child is always a gift, whether 'perfect' in the eyes of the world or not. No one knows that better than those who have experienced or still experience the pain of childlessness. Except maybe those of us who are given a child with special needs (please do not say 'Special babies for special mummies within my earshot. That would be a very unwise thing to do. I can explain if you wish). Those who need to face up to the fact that there are people out there who think that their child is second rate, should not have been born, is a burden. 

A child is received by raising empty hands to God, not by going to a dealership and ordering size, colour and specification. A child is given. 

My Nathan is perfect. I've just been to check on him as he sleeps and yes I can confirm he is perfect. He is my baby, my miracle, my 

''Gift to me
A song that's free
Coming Down in Time and Season
From a higher place
and higher ways
and a Love that gives no reason''
(Martyn Joseph, Gift to me - this is my Nathan song, I sang it to him when he was inside me, when he was crying as a baby, and at his baptism). 

Maybe there are people who firmly plan to go to Italy. They will come a cropper one way or another. Their child is bound to disappoint them one way or another, or life will. Me, I am blessed. Truly and utterly blessed. And in love with my amazing child, who was fearfully and wonderfully made. (Psalm 139)

Getting tough with the outside world is one thing, getting tough with my own child is also not something I had signed up for. From the age of 6 months old, when the suspicion of cerebral palsy was confirmed, physio commenced and stiff hamstrings discovered I have been doing daily hamstring stretches. Making your child cry on a daily basis by hurting him is Not A Fun Thing To Do. Having your son use his limited language skills to plead with you not to do the stretches just sucks, there is no other word for it. The orthopeadic consultant saying Nathan's hammies are looser than his own mollifies a bit, but doesn't make it easier. All you can do is pin him down, persist, keep explaining that it is to make sure he can crawl, hop around, pull to stand, walk and ride his trike. Which he may understand but certainly does not appreciate in the moment. It's a surprise he doesn't hate me frankly, although the carefully built in ritual of hugs and cuddles after may have helped with that. 

Perhaps unsurprisingly it leaves you a bit puzzled when a mate tells you that she cannot get antibiotics into her two year old because said child doesn't like it and wriggles too much! 

Less dramatically it's sometimes necessary to be tough to help Nathan practice his skills. 'Want on sofa', ok then honey make a start, use your arms and legs, pull to stand then I will help with the last bit. No? Ok then stay on the floor. Strop. Ignore. Strop. Ignore. Pulls to stand, I help, I win, skills practiced. When he had just learned to sit himself up he would often find a suddenly very necessary toy just out of reach and would grunt at me to get it. And I would say 'You will still be disabled when you are 18, get on with it yourself'. Helping doesn't always help. 

Although that time in the supermarket car park when I told him to 'Help me to get you out of the trolley, you are not THAT disabled' I did see a few shocked faces! But you have no choice. Your aim is to help your child to become as independent as possible with a view to the future, and if that child has significant challenges you cannot leave it to happen all by itself!

How I became a mummy bear

Here is the picture that made me decide to start writing this blog. Because I never set out to become a mummy bear. I was such a nice Christian woman. Not that assertive despite being a lawyer. Likely to accept what others told her. Now there is the wonderful and nearly 5 year old Nathan who popped out a bit special. He has cerebral palsy on the right side of his body meaning he cannot yet walk without support and he struggles to use his right arm at all. On top of that the muscles in his mouth don't work well and he struggles to express all the thoughts his bright little brain is thinking. An independent and rather determined young man he is still vulnerable and needs protection and support. 

I first became aware of the need to become a mummy bear when he was just 4 weeks old. He had come home from hospital a week or so before and was discharged on anti-convulsant medication as he had neonatal seizures. In hospital he had been getting special paediatric alcohol free medication. Now he was 'in the community' suddenly that was not available basically because the computer said no. At first I accepted it, but it niggled away at me. One evening I did the maths and worked out that he at 4 weeks old and weighing less than 4 kilos, with a liver that was already recovering from whatever trauma had also damaged his brain, was being given the alcohol equivalent of half a pint of beer a day. In a health care system that dictates that children must be given drugs full of artificial sweeteners because sugar is bad for their teeth they happily gave my baby alcohol. I got A Little Upset. Which cumulated in me having a tearful meltdown in a busy Boots chemist. 'I Just Want The Best For My Baby'. With a sympathetic pharmacist on my side I found out about special, handwritten prescriptions for more expensive drugs that are not on the computer. She found out what drug Nathan needed and gave me paperwork for the GP. I wrote a heartfelt letter to the GP. I got my handwritten prescription from the GP and my tiny son could now supplement his breastmilk with alcohol free medication. I sat back a bit stunned. Pleased with my achievement but shocked at this need to fight.Blightely having assumed that everyone else would also do their best for my baby. Little did I know that the fight was only just beginning...