Newborns

 

It’s 7.30am, it’s not been a good night.  A mixture of babies on the ward, loud talkers, fireworks until the early hours and nightmares.  I have to admit to fighting fear.  Immi’s eyes are well over to the left and she hasn’t spoken yet.  Everyone says it’s early days and it got me to thinking about being born.  In many ways there are similarities; her brain is having to learn to work in a completely new way.  Just as a baby doesn’t develop over night, but takes weeks to form, grow and develop, her brain and body is having to do the same.  And just as new parents don’t have any idea what they are doing and are full of trepidation mixed with a bit of fear and excitement I sit here fretting over her new behaviours and desperate to see improvement and development.

It’s similar in the spirit realm too.  Jesus said that just like when we are born physically as babies, we need to be born again spiritually.  When we make a decision to follow Jesus it’s a new start.  We often know nothing.  The three basic needs of all babies are to know they are loved, to know they are safe and to know they will have their needs met.  It is the same for us now and the same for when we start a new life with God.  He wants us know we are safe in him, we are loved by him and we will have our needs met by him.

I’m concentrating on these now.  Sat here, we have all we need in this moment, we are in the safest and most specialised place right now. We are having our needs met, by hospital staff and by many of you who will read this blog. And we are loved, by God, but also evidenced by the many many messages of support we are being send.

So as I sit watching the monitor I’m holding onto all of these and to the fact that like when she was a baby my job is to keep her safe, to love her and enable her needs to be met. Then I can just watch her develop in her time.

Op news - How do I feel?

So the call came. The call we had been waiting for but hadn’t expected. Especially not today. Today, Boris was announcing more Covid controls not less. Today the R value is increasing not lowering. So we weren’t expecting the call today. My brain stopped working, my neocortex couldn’t work for the day and my limbic system took charge - I was somewhere between fight and freeze I think, but unable to make decisions.

'How do you feel?' I was asked. Or 'you must be please,' or excited, was offered. I knew I didn’t feel either excited or pleased. All I felt was scared. Petrified. This is not a normal op. This is not a run of the mill operation.

Hemispherotomy: A hemispherotomy is an operation that disconnects the cerebral hemisphere - one half of the brain - from the other without removing it.

There will be deficits, visual, cognitive and motor. We are making a swap. She will lose some eyesight on the right hand side of both eyes she can lose up to half, she will be partially blind. Her hand will go from dystonic with no control, to spastic still with no control. Speech and cognition remain to be seen - they can't say at this point- and she will need to learn to walk again. There will be months, possibly years, of physio and rehab which I admit I am fearful of as she’s not the most motivated at the best of times. I’m not sure what I will use as a reward, to bribe her to work hard at it. I’m fearful she will just give up if it’s hard work.

These deficits will happen whether the op works or not. They are hoping the op will lower or stop seizures but they give percentage approximations not known quantities. This is scary. I want to not do it. No mother wants to put their child through this. I want to stay in the known....Until I see her suffering in the known.  The daily seizures the days of prolonged sleep which curtail her life. The daily incontinence and her feelings post-seizure where she laments at being wet and feeling awful. The fear she has of going to sleep because she knows she is going to seize at some point. When I consider the known I want different for her. And this is the only door offered that could bring change.

It feels like a nightmare I wish I could wake from and suddenly find my daughter is able bodied, happy and fully cognitive with a raft of GCSEs awarded to her for her bright future. But it’s not a dream. We have to go through this. We have to make this gut wrenching decision. I want to feel blessed that we have this option. But right now I feel more like: damned if we do, damned if we don’t. I know this comes from a place of fear and I don’t want to give into fear. I want to make the right decision with her and for her.  

To be honest it feels like there is little choice.  We have prayed for years, we have tried many drugs and combinations of, we have tried the ketogenic diet under the dietician.  The national team are telling us this is their recommendation and there is no other direction.  I just wish we didn't have to face it.  If you are a praying person, we value prayer for resilience over this time before hand as the option to pull out is there! And also during, as only one parent is allowed in the hospital with her which is going to be tough. And of course, for this op to be a success. 

The date we have been given for admission is the beginning of November. and I will aim to keep you updated on Immi's journey as time goes on. 

Results Day

I knew this day would come. The day the rest of her cohort pick up GCSE results but we get nothing. It stings and I need to grieve a while today.

I knew a few years ago that she wouldn’t manage GCSEs and I knew last year for sure that she wouldn’t be doing any, but today still smarts a little. There will be no celebration, no excitement about the next step. No sense of achievement in this way. I need to allow these emotions of sadness and grief to surface, just for a while, to acknowledge them, to reach a place of acceptance (yet) again. This is not the life I would have chosen for her. No one wants to have a child with special needs. Yes, we make the best of it, we put a positive face on, we choose to pull out the positives, see the aspects of life she is making progress in and acknowledge those. But truthfully, deep down, I would give anything for her to be able to grapple with Maths problems and write an essay, to feel a sense of grappling with learning and the sense of achievement exam results bring. Today highlights once again, the differences, the losses, the gap between Immi and her peers. It’s a day that points at what she cannot do, like a bit neon highlighter marking her life. A day that I fight off a sense of failure. I know it is not my fault or anyone’s fault, it is just how life works - life is unfair- but it sucks. Every parent wants the best for their child, wants them to have all the opportunities in the world and today highlights doors that are closed. Thankfully, I think she is blissfully unaware, she moved from Mainstream to specialist provision three years ago and today I am so thankful for that. She is not compared today against a cohort of academic achievers, she feels she has found her tribe. A wonderful bunch of pupils who find joy in many things. But I feel for those that are. That have tried within this strange year, but despite their best efforts results day will deliver little to celebrate.

So today, for a moment I allow myself to grief. To be saddened by the ‘what could have beens’ and to acknowledge the differences. I dig deep to congratulate the ones who have achieved, knowing that for Immi these same accolades won’t ever come.

And then, I will dry my eyes, straighten my crown and go and make breakfast!

Charity choices.

I met some lovely people this evening.  We walked into the room, knowing hardly anyone (actually there was one other couple we knew) and walked out having connected, chatted and made friends easily with a number of people.  What made it so easy?  We all had something in common.  We all had a child with Autism.  

We have not had very much to do with the charities surrounding Imogen's labels.  Not for any prideful, 'we don't need it', issues (its quite clear we do!) But simply because we haven't had the capacity.  If Imogen only had one diagnosis it might have been easier - you would know who to give your allegiance to!  But it is more like playing cards, 'pick one, look at it, put it back in the pack!'  

We have 'dabbled' in charities.  Hemihelp (for children with hemiplegia) gave us some great advice and have a really useful parents forum on their website. So when Imogen was first diagnosed I spent a good six months writing to people on the forum and my Dad also ran a half marathon raising money for them.  

I also spent a bit of time on the Dystonia Society website when she was diagnosed with this strange and unpredictable disease. The actor who played 'Charlie Fairhead' in Casualty was their patron, being a sufferer himself, and we continue to dip into both of these great charity websites. But then the epilepsy rose its head - I knew nothing about epilepsy, but I knew there was an Epilepsy Society as we lived in the village where their headquarters is based. 

So again I read up on their website, but then the wave of the next two diagnoses - ADHD and ASD (don't even start me on dyslexia!) and with them a whole lot more charities.  I found it all, the number of labels, diagnoses, charities and websites, quite overwhelming and backed off from most.  Not because they weren't friendly or helpful, but there was just too much information, I felt like I was constantly playing that game at the fair when you hit the gopher on the head and another pops up.  Just to keep on top of all the medical appointments was a feat, let alone try to make contact with charities, and which would I pick anyway?!

When we moved up to Derby I was put in touch with 'Umbrella' which is a charity in Derby for families with Special Needs children of varying diagnoses. That was helpful and we became members. The group met once a month (and still do on the first Wed morning each month) at our church, but I still kept my distance.  I didn't intend to keep my distance and I wasn't sure why I was.  I only recently realised its because  I just don't have the capacity.  Now that sounds a bit crazy when it is a charity that in its nature is supportive and caring (as most are), but actually to be involved in any charity takes time. Time to fund raise, to listen to other parents, to go to meetings.  And I just didn't have any margins to do that, I guess fear of being sucked into something that I couldn't cope with kept me away.

This evening I think may have been a turning point.  We went to a meal.  It was a meeting of the NAS (National Autistic Society) Derby Branch.  It was great, there was a natural connection.  People who understood.  People who had been through similar experiences and had either walked a similar path or were walking it now.  I met some people who I have a feeling are going to become good friends.  And I realised that for the first time in years, I must have found some capacity!

(I do want to say at the end of this blog that ALL the charities that I have had any dealings with have been supportive, helpful, friendly and ready to help.  It is simply our journey that has stopped us getting more involved in any one charity.   If you or someone you support is struggling and needs support in a certain area - please do contact the relevant charity.)

Autism Awareness....extra thought needed!

Well, It is the 2nd of April.  That means it is Autism Awareness day!
Have you seen the blue buildings lit up around the world?  The Sydney Opera House and Empire State Building are among those lighting up blue this year to help raise awareness and understanding of Autism.

Sydney Opera House Lit up Blue for Autism Awareness

So it seems fitting that I mention something that happened recently that was made an 'interesting' experience by Immi's Autism.

We have some Canadian friends, and the other day they were reminiscing about how much they were missing Ice hockey (just hockey to them, they don't mention the ice apparently).  We had been meaning to take our son for over a year as he had wanted to go to watch our local team the Nottingham Panthers.  So this seemed like the perfect opportunity.  So I merrily got online and booked us all tickets to go to the semi-finals.  I did have a moment of doubt just before I clicked 'buy' - 'Is Imogen going to cope with this??'  but suddenly it was too late, the button was pressed!

After buying the tickets I started getting a bit worried.  Had I done the wrong thing? Was it going to be too much?  I am in a great facebook group called 'World of Autism - making it a positive one', so I got on there and asked a few members from around the world what it would be like.  The advice was good, many people mentioned the noise and the cold, (with light being another aspect to watch out for).
So Sunday came.  It was Easter Sunday and we had had a full on baptismal (the full dunking malarky) service, Imogen had been bouncing (no ADHD meds at the weekend!) and by the end of the service she had gone very pale.  We got home at 2pm needing to leave again at 3.  Imogen by this time was very strongly stating she was NOT going out again, she was getting in her bunny suit and watching a DVD, and NOTHING was going to move her!
I was starting to get that feeling you get when your goals get blocked, you all know it, it's called anger - or if you want to feel a little better about yourself, frustration!  I could feel it rising in me and although I was trying to stay calm I could see almost £30 going down the drain and yet another family afternoon ruined. I did not give her the option of getting in her bunny suit, but instead briskly put her in warm clothes and bundled her into the car.  I was prepared, I had ear defenders (and ear plugs) I had sun glasses.  I had snacks, I had drink and I had her normal emergency bag with change of clothes etc. My Facebook status read

"

OK I am now beginning to worry about the wisdom of taking Immi to an ice hockey match after a full on amazing service this morning. Ear defenders - check, sunglasses - check, cuddly toy - check, snack and drink - check, sanity - now where did I put that?!"

We arrived smoothly and although busy, she was coping ok.  However I had forgotten her problem with sitting next to strangers, but with a bit of seat juggling we were settled. She didn't want her ear defenders apparently... but then, it started, the noise increased ten fold and suddenly she wasn't coping.  I have never been so thankful for a pair of red ear defenders!  We did have a tearful few minutes in the middle when I wondered if I was going to have to take her home, the seats never have much room, so it was a bit of a squeeze sitting with a 9 year old on my lap, but from then on, things were actually pretty smooth. We were probably in the noisiest area with the Scottish opposition fans right next to us (my poor Scottish husband didn't know where his loyalties lay!) but she did well.  It was a hard day for Imogen, and I don't think I will be taking her to Ice hockey again in the near future (I would go again though!), but she coped through the day, no major meltdowns, no epileptic fits and no falls, apart from when she fell exhausted into bed at the end of the day!