It will get better, I promise

“Blood mummy. Blood mummy.” she cried just as I was trimming her finger nails.

The tiniest nick. But lots of tears. And plenty of blood.

If there is something sure to get my baby girl upset it is blood. She becomes hysterical at the sight of it. I just know it will be one of those stories I will hear repeated and repeated and repeated and will never be allowed to forget. But in the meantime I have to clear up blood that is pouring like a river and comfort a little girl who has gone into overdrive.

So dad wraps her finger in some kitchen paper. And I get some plasters.

“No mummy, not a plaster” she screams.The sight of the first aid box just made her ten times worse.

She doesn’t want a visual reminder of her pain. She wants it gone. She doesn’t want anyone else to see her wounds. She just wants to get better. I don’t have time to sit and explain or prepare her for the fact a simple plaster will make it all better. I even try a children’s plaster with lovely pictures on. She pulls the finger away dripping blood everywhere.

And the tears keep coming as fast, if not faster, than the blood from her finger.

We don’t do unpredictable very well in our house. We do routine, structure, preparation, This isn’t as much the pain that is causing her stress this is the look of blood, the not knowing what we are doing, the people being too close to her, the mass of sensory feelings her body is getting bombarded with. This is fear. This is the thought that things will never ever be better.

Plasters don’t work. So mummy held her 5 year old baby in her arms and firmly held kitchen towel over the small but highly distressing wound. To her this is massive. And I understand that.

“It will get better, I promise.” I whisper.

Slowly but surely it does of course. But her emotions and heart beat and adrenalin need to catch up with reality. That takes time. The comfort of being held and spoken to softly help. She is holding onto that promise. Though she has no visual sign of the reality she is trusting.

“It will get better, I promise.”

A little cream, a firm wrapping of kitchen paper and some micropore tape to hold it down does the trick. For now though she knows she is different. She feels that everyone will stare at her. She feels emotionally vulnerable and ready to cry at the slightest thing. The pain is still raw. Her mind can not yet think of anything else other than that cut. Everwhere she looks is obvious reminders of the pain. Drips of blood on her pyjamas, on the seat and on mummy’s clothes. Drips that right now seem massive. But to someone who has no knowledge of the situation they may even go unnoticed.

I remind her clothes can wash. Chairs can be cleaned.

“It will get better, I promise.”

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Two bedtime stories later and a little more reassurance and she was asleep. Tomorrow that little cut will be much better. In a few days time it will seem much less dramatic. The memory will be there of course. The trauma will still be there too. But in time that will fade a little. As I promised her, it will get better.

And I can promise you things will get better too.

Sometimes life is like tonight and suddenly something traumatic and overwhelming happens. And you may not be prepared. You child got diagnosed with autism, your marriage ended, you became ill, you lose your job, your landlord wants to sell your house, there is a death in the family.  Life has a way of throwing things like this at us. And just like my daughter when she saw that sight of blood, panic sets in.

Although my daughter is too young to voice it, she was probably thinking, like we all do,

‘How will I ever get over this? How can I stop this from happenin?. Can someone help me? Please just let this stop!’

It is ok to feel like that. It is natural.

Let people help. The right person can come along with that first aid kit, and that reasurring loving voice and tell you,

“It will get better, I promise.”

At first you see the plaster, that visual reminder that something is wrong, and you might panic more. You think everyone will see your pain. You feel vulnerable, insecure, broken. We all feel like that at times. It is ok to cry. When it all seems temporarily overwhemling crying is instinctive. It is part of the shock release. Sometimes it is the pain that is the issue and other times it is the thought that everything has changed, the not knowing what to do now, the sensory overwhelment of it all.

In that period of being wounded, of needing comfort, of being confused and emotionally vulnerable we all need the security of resting in someone’s arms. In my times of need I am so thankful for the loving arms of my Father God. Of being able to find refuge in the shelter of his wings. But we need people too. Friends to comfort us and keep reasurring us that it will get better. We need helped. Supported. Loved.

You may have to go through a period like my daughter of knowing you are different. I know when my children were both diagnosed with autism I suddenly realised how different life was for me. I thought my ‘wound’ was so obvious to everyone. I felt the pain and hurt would never go away. It felt like everday I was reminded of the fact my children were not like others. I felt like everyone would see that ‘cut’ and ask all about it. I seemed like I was dripping reminders of autism everywhere I went. I felt sad, alone, confused, vulnerable.

But time heals so well. I rested. And one day the wound was no longer raw. My children still had autism, just like my daughter still had that cut. But the diagnosis day became a memory. Sometimes, like Naomi, I want to replay it and talk about it. And that is ok. We just need to find the right people to listen. But things have moved on. When Naomi wants to talk about the day her finger got cut I will listen and comfort once again if the momory restirs emotions, but I will be reminding her that it got better.

She can’t keep that bandage on forever. It would not be healthy. I can’t keep going back to diagnosis day either. It happened. And things changed. But you know what? It got better. I grew as a result. I learnt, I became more compassionate, and I found new friends along the way too.

In the year I have been blogging; In the 13 months since we found out my son and husband have an incurable tumour condition; in the 18 months since Isaac was diagnosed as classic autism, global developmental delay and pica; in the 3 months since my daughter was also diagnosed as having autism; in the 4 months since we found out Isaac is visually impaired: these words have been my comfort, my strength and my hope.

It will get better, I promise.

Let them comfort you and bring you hope today too, whatever you are facing.

It will get better, I promise.

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When the carer needs care

Wake up, eat, go out, come back, eat, play, sleep. Simple really.

And then mum went and fell down the stairs.

Kiss it better, put a plaster on it, don’t think about it and it will go away. Simple really.

Stop! Yes, you read that right: mum went and fell down the stairs. This isn’t a kiss it better situation. or a simple plaster affair. This is serious. This involved accident and emergency departments, a splint, bruising, pain killers and crutches. But it could have been so much more serious. And for that I am eternally thankful, despite the pain.

So what happens when the carer needs care?

By defination of a carer you are supporting and looking after and seeing to the constant needs of another. You are the lifeline, the advocate, the stronger one. The carer sacrificially puts the needs of the other person before their needs daily, whether this is in a paid capacity or not. And for many, like me, this is a 24 hour a day, 7 days a week job. There isn’t sick pay, or holidays, or even lunch breaks. Training is in your ‘spare’ time and has to be juggled around appointments and therapies and the care needs of the person you support. Parent carers like myself work behind closed doors, silently doing all that needs to be done to ensure the welfare of your disabled child or children is put first. We carry out therapies because there are not enough hours of speech therapy or physio or nursing care available. We administer medication as efficiantly as any nurse and our patients date of birth, allergies and personal information rolls off our tongues as easily as our own does. We fill in forms and specialise in the day to day care of conditions we have had no previous education in. We are nurses, therapists, entertainers, interpreters, cleaners, cooks and drivers on a daily basis.

But every carer is human. Accidents happen. We have emotions and feelings and sometimes, actually more often than we realise or want to admit, carers need care too.

So for me that has meant a period of rest and reflection. And allowing others to love and support me. And that is something I have found hard. Not only because I am used to being the strong one but because my beautiful children have found it very challenging too. It may sound a cliche but seriously my heart was often in more pain than my pysical body at times.

While I dealth with this:

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my boy reacted like this:

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Because he has autism and can’t cope with change. Because he is at the stage of requesting things by taking mum’s hand and leading her to what he wants and he can’t transfer that skill to anyone else. Because he has global developmental delay and can’t understand that mum is injured. Because he can not tell us what he wants or what is going on as he has no speech. Because he is just a child after all. And he gets the care, not mum. It’s hard to realise that person who does your washing and ironing, keeps your house clean, puts food on the table for you, changes your nappy and works the television is, after all, just like you and has feelings and pain and needs help at times. Gosh, many a teenager still struggles with that concept so no wonder a four year old can’t grasp it overnight!

So when he went to his room we found he had smeared. All over walls, bedding, toys, himself..well everywhere really. The mess, the smell and urgency to get him away before anything was ingested would be overbearing for anyone, but when you become soul carer to two disabled children and an injured wife, well it must have felt like the whole world was against him. In my eyes my husband is a hero. My admiration for a man who can face all that and still smile has just got so much stronger. But you would never known he had dealt with that behind closed doors. Because that doesn’t make news. It is just daily life. It is love in action.

And when we took him to a hospital appointment Isaac screamed. That ear piercing, get me out of here, all consuming scream. Continually. Because he was in his disability buggy, mum was on crutches and his sister was trailing behind. Because it wasn’t possible for one of us to supervise his urge to walk up and down in straight lines gazing at the ceiling lights. Because he was at a hospital and clinic he had never attended before and he hates change. Because we had picked him up early from school in order to go. Well, in reality for any number of reasons really. But the fact was he screamed. Continually. Even while we were trying to speak with the paediatrician. Hey, we are carers and parents and we are human too. It hurt our ears as much as it did everyone else. We needed headache relief like everyone else.

Do you ever stop and think that someone you know could be going through something like this behind closed doors?

He does sleep (albiet with the help of a supplement), and most weeks are not this bad. Thankfully.

But when I started blogging I said it would be an honest account. So this is life.

And then he does this:

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He used a point for the first time EVER and actually tapped the ipad in the right place for the first time. His smile and the achievement and the love of his twin sister sharing the moment. Well, that is worth the screaming hospital appointments, and the smearing and the pain in my knee. That is why we care.

Injured knees mend, headaches from screaming ease, poo can be cleaned. Seeing a child reach a milestone is worth it. Hearing that first word makes it worth it. Knowing your child is breathing, eating and growing makes it worth it. It really is incredible to be a full time carer.

But the emotions and the intensity and the fact accidents happen and carers are human mean that no matter how big a smile a carer has, never forget that carers need care too. And that isn’t just because they are injured.

You never really know what is going on behind closed doors. Let someone know you care please. Hug, smile, do something nice for them, and don’t judge. It could be you they care for one day after all. Or you could find yourself being a carer.

Today has been a good day. There has been no extra cleaning, or extra high pitched screaming. No pain killers needed and the knee is improving. We all woke up, ate, went out, came back, played and went to sleep. Simple really.

But the week the carer needed care taught me that we are all human. And it’s ok to need help sometimes.