Raising a child with a “disability”

Before trying for a baby and whilst pregnant with twins, it never dawned on me that I might be raising just one of them; a twinless twin who was born three months premature and had a severe bleed to her brain at one week old.

I have heard so many times the phrase, “As long as it’s healthy.” But what if it’s not healthy?

Like Charlotte, what if they are fighting for every breath they take when they are born?

What if they experience a bleed to their brain, which after two long years of anxious waiting, is diagnosed as having cerebral palsy? Are they still recognised as being that ‘healthy baby or child’?

What is even meant by ‘healthy?’ One without a disability?

What is a disability? Why should it be seen as being different? Different to whom? Why should it have to be labelled?

Why should she be seen as developmentally delayed? Delayed in comparison to who?

Should it not be a case of seeing a child as having different abilities or achieving things at different rates rather than as being disabled?

I’m not even sure of the PC term of describing Charlotte, does she have special needs? Additional needs? Special educational needs? I just see Charlotte as Charlotte.

However, as much as I can argue the answers to these questions until I am blue in the face, there is also a part of me that wants to and feels a degree of guilt for dreaming of what life might be like if Charlotte was born at full term and didn’t have a brain injury.

I am experiencing grief in a different light where I am learning and accepting that Charlotte isn’t going to be the way I imagined when I became pregnant with her and I am beginning to learn how to manage it.

Welcome to Holland

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

When the girls were born, the neonatal psychologist told me about this essay ‘Welcome to Holland’, about having a child with a disability. Whilst expressing in the early hours of the morning, I wrote down how I would feel about going to Italy (with my full term bump) and then finding out I was going to Holland (my waters going at 24 weeks and having the girls three months prematurely). I felt upset writing about going to Italy and being denied all the things I dreamt of but surprised to see my list for ‘Holland’ easily outweighed my list for ‘Italy’. The more I wrote about going to Holland, the more uplifted I became. You can find my lists for each country on my blog post ‘Welcome to Holland’.

This week, my anxieties have lingered around; “What if Charlotte is seen as different?”, “Is being different even a bad thing?”, “Why shouldn’t being different be celebrated?”

Today, it dawned on me that my anxieties were brought on because I was mourning for the child I didn’t have. This has brought me not only sadness but also guilt as I love the bones of Charlotte and think she is perfect in every way. I am trying to not be hard on myself and to trust and understand that how I am feeling is very likely to be completely normal.

I feel comforted and my guilt eased when I read and think about this section in the essay:

“But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.”

It tells me that my thoughts are not alone and that it’s ok to feel that pain, even though right now it feels strange accepting the pain as it makes me feel in denial and guilty for not loving Charlotte, the way that she is. (Thinking about this has brought tears rolling down my face as I feel I am fighting with the pain. It doesn’t make sense or add up to me just yet.)

Just like it helped me previously, I have decided to have another go at writing down my thoughts about Italy and most importantly about Holland.

Italy

Seeing Charlotte and Esme running around and playing together
Knowing that they have each other for all their firsts
Not knowing much about milestones
Not being paranoid about what others think when they see her walking or using her hand and feeling the need to explain why she isn’t keeping up the pace or doing things that their two year old or one year old is doing
Not living with the uncertainty about how her hemiplegia might affect her achieving things in the future
Not feeling guilty about having days where I don’t do much therapy with her
Not feeling apprehensive before hospital or therapy appointments about hearing something else that is a result of her prematurity or cerebral palsy
Not feeling frightened for her about what others might say or put her down for because of her hemiplegia
Able to buy her any shoes or boots
Not having to see her fall over and frequently hurt herself
My anxiety not increasing every time she gets a cough or cold

NB: Other than the first two on the list, I had to really think hard about what to write.

Holland

Her love of life
Her determination
Even if there are tears and frustration, she never gives up
The sparkle in her eye when she does something independently
That you know and can trust that whatever she wants to achieve in life, the fight in her, will enable her to achieve it and overcome any setbacks
The way she cares for others and makes sure they are ok
The cuteness of how she runs and takes the tiniest, quickest steps in the world
Her sass and devious look in her eye when she loves being mischievous
Her observation of others and how she knows (especially her little brother Archie) what they need and want to make them happy
The way she laughs at her friends running around but doesn’t feel envious she isn’t keeping up with them
That from birth, she knows her own mind – if she is unsure or not ready, she will not go there or even contemplate it
The way she communicates exactly what she wants and needs with minimal vocab
Her smile and the way her face lights up when she knows she has done something clever
Her love for her dogs, Hattie and Mila and animals in general
How she draws people in and makes them smile
That she can cleverly work out how to do things with the limited movement of her right side
She is able adapt activities which require two hands
She is naturally very funny
How she can sing so beautifully and softly but when she gets super confident it sounds horrendous and so out of tune!!
The adorable way that she bounces with her entire body but her feet don’t leave the ground
Making time to do therapy and stretches is hard work and an effort but this is just a part of ‘being mum’ to Charlotte
The way I feel so proud of her when I tell people about her and they say “Wow, she is doing amazing.”
Nothing gets past her!

NB: I thoroughly enjoyed writing about going to Holland and will more than likely think of so many more points once this post has been published. I smiled loads about thinking about her, my mood was upbeat and felt SO proud to be her mother.
I think it’s safe to say, that was a very worthwhile exercise. I am beginning to understand where the author, Emily Pearl Kingsley meant by not mourning for Italy and being free to enjoy Holland. There certainly are a lot of very special and very lovely things about Holland.

Writing about going to Holland was a pleasure. I can’t think of a better way to end this post other than; BE MORE CHAZZY