Additional Needs

Dear Specialist

Posted by Ceri-Ann Brown on 15th January 2018 Additional Needs, Disabilities

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In my mind already I had planned our journey, what to bring, when to set off and where to park almost 50 times at least.

There have been nights where I've struggled to get to sleep because I'm churning over and over in my mind what the outcome of this meeting will bring.

Will it get us any closer to where we need to be? Or will I come away fighting the tears, bitterly disappointed that we are no closer to an easier life.

I have rehearsed several times how I am even going to say hello to you. I am nervous of you seeing me with my child - do you think I'm a good mum?

I wonder to myself if you are also a parent and how much you can relate to my situation.

It's hard in a clinical environment to know if you see us as just another patient adding to your waiting list and work load. Or if you try to visualise yourself in our situation and how you would cope.

I bet you work long hours and sorely miss your family. Though you are well paid I bet you are overworked and exhausted and wish you had more time away from here.

I hope that this doesn't cloud your judgement and make you feel less compassion for us.

I have always felt intimidated walking into a clinic room full of people, all watching me tell our story.

I'm not necessarily a private person but it can feel quite one sided and scary telling every private detail of your life with your child.

Last time I came you noticed my voice start to crack as I fought my emotions talking about my daughters feeding difficulties.

I want you to take me seriously and know that I'm not just an overly emotional irrational person.

Some nights I stay up late and dedicate a lot of time to reading medical journals, and interacting with other parents on forums who have been through similar challenges.

When you clock out and go home to your family I am still there, running those 24 hour feeds, always trying to find answers and ways to make life less painful for my daughter.

I hope that you see me as competent. I have looked up so many medical terms and tests and procedures so that when I come to you I feel in the loop.

I don't want to be intimidated by medical jargon, or have you suggest something I had never even considered. I hope it doesn't come across as me being a know it all - because trust me, I don't!

But I don't want you to think I have no idea what's going on. I don't want to appear cocky, but I don't want to look clueless either - I want you to know that I am an expert in my child just as you are an expert in your field.

When I come in to your appointment I half know what it is I want the outcome to be.

It breaks my heart when you don't agree.

I have a huge amount of respect for your work that you do and I take on board everything that you say. But at the same time I have learned the hard way, many times, that a parents' instinct is not something to be shunned.

You may have seen many children with similar issues to my child, but you see, I spend pretty much 24 hours a day with this child and I see a lot more than anyone could see in a 30 minute appointment.

So whilst I put a lot of trust into you, I also have to go with my gut... and that's a scary thing to have to do.

Sometimes your appointment will appear as a last minute cancellation. Instead of my months of planning and panicking... I now have to condense all of that into just a few days.

It will usually mean rearranging other appointments and maybe missing school or respite. I come to you hoping hard that those cancellations and missed respite hours are worth the miss.

I know it's a cancellation, but I can't help thinking - what if they think this is urgent? Is there something going on that I don't know about?

The paranoia is strong and every interaction leaves me analysing your words for weeks after the appointment has gone ahead.

When you order those tests, prescribe those meds, and tell me to expect a call or a letter - I wonder to myself... is this one of those promises where I will wait for months and inevitably end up making several calls to chase this up?

Or will it all happen as promised.

I know that it isn't because you can't be bothered, but sometimes it can feel that way. We like to know that things are happening behind the scenes to get us to where we need to be.

Before my child entered this world I never even knew people like you existed.

It can be hard to hear someone talk so candidly about major surgery, as if it were something as simple as switching on a kettle, or driving a car. This is my daughter.

My living, breathing, amazing daughter.

I have seen her go through so much pain and I've had to make some horrible decisions that I hope one day she will understand I didn't take lightly.

There are surgeries I have refused that I wonder - should we have done? Sometimes I wake up with night terrors and night sweats, re living sending her to theatre.

Her unsuspecting, vulnerable little face, with no idea what is going to happen to her next. My heart pounds through my chest sometimes, the same way it did whilst I waited to know that she was okay.

So much time staring at a clock, wondering what was happening but also glad I couldn't see the brutality and gore involved in these procedures.

I wonder to myself how you got into your profession. I find myself so grateful that you exist, and that you know what you do. Because without you this would be so much harder.

I even have dark thoughts - I get scared thinking that what if you don't like us. I know how ridiculous that sounds.

But do you like working with families like ours.

Do you have respect and care for people with severe neurological impairments? Or do you ever view us as a constant nagging inconvenience?

Because sometimes some of the secretaries make us feel that way. I get worried that you may see us as a burden - after all your job would probably be a lot easier if we weren't on your case load.

But on the other hand, with your work and our compliance, you could make some amazing medical break throughs and transform the lives of many.

How incredible would that be?

When I leave your appointment I sometimes feel the crushing weight of my childs' diagnosis, a reality check on how hard this can be for us. It's hard, and nothing can prepare you for those emotions.

As I drive home I feel a combination of hopeful and fearful. I think of all of the other things I should have said and berate myself for not always being able to answer every question.

I think about how other parents do their journey home and if they have similar feelings, and I wonder how many people out there are having the same issues and how they go about resolving them.

I wonder if it will ever get easier and if there is a miracle medication or procedure that can fix all of this.

So I return home and continue my cycle of coping, researching, obsessing and hoping... waiting until I see you next... waiting for that letter to come through the door.