Freedom: proof

Such ordinary pictures, days of nothing special, and yet for my 3 year old each one is a momentous occasion. I took for granted that walking comes naturally to children, babies even, until I had a premature baby who was later diagnosed with spastic cerebral palsy. 

Since the days turned into weeks and then months when allotted milestones came and went, un-met we have done a lot of physio, used gaiters, AFOs, a Kaye walker and a daily muscle relaxant medicine in aid of walking. We have swam, bounced, sung, pleaded over steps and supported, held up and wiped tears when things wobbled. I have cried into my pillow and Wriggles has cried into me (or hit me with a stuffed tiger). But we are getting there. Each step of freedom makes my heart sing louder and if that what it does to me, I can only imagine what it does to an already perfectly confident child like Wriggles, whom quite regularly refers to herself as both "brave" and "clever".

Each step is so hard won: the cruelty of cerebral palsy is that even for those more mildly affected, the tiniest of set backs can prove huge. Each achievement can be crushed by the simplest of things. Growth spurts wreak havoc as muscles and bones grow at different times and rates and the signals in the brain get mixed up. Small viruses sap strength that takes weeks to get back to baseline. In an instant, core strength is halved. Which makes these memories and pictures all the more special. We got there. Wriggles got there.

At the moment, we are still suffering the after effects of Wriggles' recent intensive care admission. She has been out of hospital for two weeks, out of intensive care on sedation for three weeks, but still can only crawl or sit up. Her hard won steps have once again slipped away from her. I know she will win them back again and these weeks of frustration as she yells "I WAAAAAAAAAAAAAALK!" only to fall down because she can't stand up will melt away. It has just been a reminder that the battle is won, but not over. For now.

 

The Letter I've Waited For Forever

After a wonderful day out with a friend and her new baby in beautiful Richmond in north Yorkshire, I came home with the giggle-monster (also known as Wriggles) and found a nonchalant brown envelope sitting on my doormat. 

This letter I have been waiting for in some form for a long time, at least 15 months if not more. In many ways, nearly 2 years. I didn't know what it would look like, the exact words or when it would arrive but there has been some level of expectation that it would come at some point or something similar.

In bold type, amongst some other headings read the line:

"Diagnosis: Emerging central motor defect-cerebral palsy with mild asymmetry and developmental delay"

Since our recent development review when the consultant confirmed brisk reflexes and spasticity in both legs and the left arm, I have increasingly suspected that this would happen sooner or later. Both our consultants and physiotherapists have mercifully always been very open and honest with me which has lessened the blow, although I was surprised to still feel it keenly when I read the words in black and white. It is mild enough to have taken this long to diagnose, and to look at Wriggles you would be unlikely to suspect something slightly different at first, second or even third glance. By all means, as conditions go it is far from severe and because of this is very unlikely to hold her back definitively in anything. Yes, she might have to work harder and take longer to achieve physical milestones particularly involving lower limbs, but there is no reason seen now why she should not achieve anything. So given this, why do I feel so funny?

It's a label, I suppose. Bam, slapped on. Something to live with. A name. A condition. A reason. In many ways, I welcome the "answer" but in as many ways I mourn the confirmation. I've known since practically 'term' that Wriggles finds gross motor skills more difficult and that her reflexes and some core strength is not what it could be. I suppose the surprise, if could call it that, is that this isn't something which is going to disappear. This isn't our bit of prematurity that needs to just catch up. This is something that she will carry to school, to adulthood and beyond. It invites even more unknowns and fogginess to the future.

Thankfully, cerebral palsy is not degenerative. What you see, is what you get in that as it originates in the brain, it is not going to change. 

"Children with cerebral palsy have difficulties in controlling muscles and movements as they grow and develop. The nature and extent of these difficulties may change as children grow but cerebral palsy itself is not progressive: the injury or impairment in the brain does not change. However, the effects of the brain injury on the body may change over time for better or worse. Physiotherapy and other therapies can often help people with cerebral palsy reach their full potential and become more independent." Taken from Scope's website.

In cases like ours, diagnosis is not immediate because it doesn't have to be. It isn't that Wriggles has degenerated, it is just that it was not blindingly obvious before now especially given her prematurity and frequency of illness. Many 'symptoms' of cerebral palsy can also be attributed to different conditions and developmental progress that in some cases can be resolved. We have for some while now been receiving a physiotherapy programme similar to a child with a CP diagnosis because Wriggles was displaying the traits which are treated as and when they are prominent or seen to be hampering developmental progress. Her treatment will not know differ because of this letter; it doesn't need to. It just means that everyone will be aware that there are no quick fixes and she will probably remain on the books longer than expected. It's not just going to be resolved with a ta-da! Look she's walking now! as had been thought whenever she does start walking unaided. And I think that is what stings. 

I'm so glad, grateful and relieved that the linked-up health care and services in my area have enabled her so far and will continue to; I just wish we didn't have to be in that position in the first place.

Rain rain go away

I cannot begin to tell you how fed up I am with this rain. Except that if you live in the UK too, chances are you share my feelings and are busy with the same sentiment. The trouble I have is a simple equation:

Heavy rain + cooped up toddler = Not Very Good

Toddlers, need entertaining. Toddlers like variety. Toddlers like destruction and space to roam. Mummies do not like getting wet. Thus, being stuck inside the house is a nightmare that will often result in two people climbing the walls by 4:45pm. After a while, you run out of producing tricks, your voice goes hoarse from singing Wind the Bobbin Up a little too enthusiastically at first not anticipating how many times it would have to be repeated, there is nothing actually left in a drawer or cupboard, all the crayons have gone missed (lobbed God knows where) and every new and exciting (really!!) activity is met me snarls of defiance and lunging for the remote/telephone/bread knife/plug sockets/bin.

"Helping" address a card

Bookworm at home ravaging the shelves

In good weather, I have tricks up my sleeve. Namely ducks, pigs, the seaside, the playground, picnics outside, drawing on the path with chalk...I know, I do have ENORMOUS sleeves. In torrential floods, I must admit I am stumped. There is only so many times you can haunt soft play before you either go bankrupt or mad, and the great problem is getting anywhere in lashing monsoons. Yesterday we braved it and dashed out to toddler group which is all of five minutes walk away. Today, after miserably watching the drizzle we seized the moment and decided to go and bother the quiet literary types at the City Library. Luckily everyone else had the same idea and there wasn't a single literary type in sight. Instead there were some small children full of beans, what looked suspiciously like a great thong of the Unwashed talking earnestly about dragons and dungeons and taking up all the tables with their special tablecloths and lanky anaemic looking limbs, and several elderly ladies asking about Fifty Shades of Grey.

Our City Library is now huge. It has six floors including a nursery and creche, exhibition space, gigantic paper mache tiger, permanently shut job seekers advice (how fitting in this climate!) and a severe lack of books. It is very clean and modern, but does bear a minor resemblance more to a shopping centre or empty airport lounge as opposed to a centre of learning. Luckily it does contain children's books and a small area to amuse said small children. There is a rather exciting pretend tree and a huge print covering both a wall and curtains of clouds in the sky, so you can pretend you are outdoors. A bonus for us today, was there were some wide steps leading up to this. At the weekend, my friend decided her honorary aunt duty was to teach Wriggles how to climb up stairs. In just under an hour, Wriggles went from clumsily scrambling over legs to being able to shimmy up a lengthy and steep flight of stairs without a second glance. So being able to practise this new skill was a winner as far as she was concerned!

Mastering the stairs

Wriggles by name, Wriggles by nature

 As it was in the same building, we were able to call by the nursery Wriggles had temporarily been in whilst I finished work after our poor childminder had had to bring her retirement forward drastically. Due to our recent hospital admission, Wriggles had missed her last day so it was a lovely opportunity to say thank you and pick up anything she had left. Although she hadn't been there long, she had been assigned a key worker and had a folder full of 'drawings', observations, photographs of what she had been up to and descriptions of how her days there were filled. It is not just a lovely record to keep, but was also somewhat of a relief reading through the notes especially those in reference to the EYFS framework and child development. Although we know she has delays, and has been officially marked down now as globally delayed, the observations were glowing with her skills and it was clear that those partaking in her care were every bit as chuffed as I was every time she did something new. She may seem young for her age, but she is very much getting there and it was with both pride and pleasure that I noticed she is ticking many of the boxes for 8-20 month old development in social, cognitive, personal care, language and gross/fine motor skills. The speech and walking may be missing, but she is quite adept at communicating her needs, charming the pants off making relationships on her own terms and getting around to her wishes. I knew at home she was beginning to grasp the concept that things have uses but this made me laugh:

"....Wriggles was exploring the (toy!) mop, turning it upside down. Earlier in the day, she found the sweeping brush and proceeded to attempt to try and manipulate it to 'clean' the floor and also then to brush her hair."

I must admit, the idea of my Wriggles, who if she didn't look less baby-like by the day could easily pass for 10-11 month old, wrestling with a full-sized sweeping brush and attempting to comb her hair with it made me snort out loud. 

That aside though, the report was full of positivity and it will certainly be accompanying us to our next development review. It backs up what I have always thought and said, in many areas she is going at full steam ahead and what some areas may lack in, others such as social skills and confidence, she more than makes up in. One horrible review now months ago, it was implied that by being from a single parent background, she wouldn't be able to be brought on as much as a child from a more traditional background. I was told that unless she went quite substantially to nursery among lots of children, she would flounder. Yes, these recent observations have been made in a nursery setting now (albeit a very small indeed one), but she has clearly managed perfectly well to get this far with so much character by either being with me, or the childminder who only had one other little person one day a week. There might only be two of us, but since that stinging remark I have been determined to make sure we socialise and go to lots of activities in groups and see lots of friends to widen her circle. And it looks like it is working! She is not even 2 yet, so even on a purely hypothetical level as finances would not allow any nursery, I am not comfortable with having her away from me unnecessarily. She is a bright button and unless we become hermits, I refuse to believe her development will be harmed in any way by not rigidly following guidelines in a large group of peers.

Now if that rain can just stop for one minute to be able to get out and socialise....