You.

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By letting go of the things I wished you could do and be, I made room for seeing you as you are, and you are perfect beyond the meaning of the word. You’re funny and so happy, I wish everyone could look at you and see what I see instead of your limitations, instead of thinking “poor little girl”. I see your brilliance which cannot be dimmed by a brain that doesn’t function the way it was intended to. I see your determination, your frustration, your joy, your love. You make me proud every day, I hope you know that. I hope you know how special you are, how important, because there is no me without you.💟

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You.

Flawsome.

I knew almost nothing about people with special needs until I had one, a child with a brain malformation, a “special needs” kid. I hate all these terms, special needs, disabled, brain damaged. I like the term “a different kind of perfect.”

My daughter has a rare disease and she is a different type of perfect.

People tell us we are amazing for what we do for our daughter. They say we are strong and she came to the right place. They say these things when we catch up with friends or family, usually on a day when we are having a good day. That is the only reason we left the house (could leave the house).

They see her when she is OK, when she is not exhausted from therapy and she is happy and smiling. When she is like this, we have a moment to catch our breath, be normal.

What they do not see is the times when I am not strong, when it is all too much and I want to scream, when I think “Please can you just stop and be normal, please.” They do not see her when she has screamed for hours or days. They do not see the times when we can just hold ourselves together and we are not strong.

I wonder if they notice how we have changed. Do they see that behind our eyes there is a deep sorrow? A sorrow that has been there so long it is impossible to comprehend being the people we once were. Sometimes it feels like the light inside us has gone and we just stumble from one day to the next waiting to see what type of day awaits us.

I worry about her, I worry about my partner and I worry about me. How long can we do this, is this forever? How can people do what we do and not go insane? Years and years facing the impossible and fighting to get through today knowing the same awaits tomorrow.

Our daughter has taught us many things. It is important to keep positive and seek for the joy when you can find it, and that can be the only thing keeping your head above the water.

That is why people think we are strong, because we just get on with it. Keep going, just keep going. If I was strong, I would not have bad days. If I was strong, I could deal with the emotions in my life. I don’t. I bury them and pretend they are not there.

I have no time for self-pity and I do not have the luxury of having time out. I have no choice but to take a deep breath and keep going.

I am not amazing, I am grumpy, I am tired, I am scraping through one day to the next. I am just a person that became the parent to a beautiful daughter, a different type of perfect child.

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Flawsome.

I have carried you, always.

I Have carried you, always.

Before you were conceived, I carried a part of you in my soul. When I met your father, I looked into his eyes and saw the other part of you, and knew you, and prayed that you would come to be.

Before you were born, I carried you in my womb. When you were restless I sang to you and soothed you and told you how I loved you.

When you were born, I carried you in my arms. I kissed you and held you close so that you would know that there is light and warmth and goodness in the world.

Later, I wrapped you in clothes and carried you close to my heart. I held you so that you could hear that my heart beats like yours; that we are the same, you and I.

Now, I carry you still, so that you can look at the world with confidence and joy and know that you belong; so that you can share all of the beauty of the world as an equal to all that live in it.

So know that no matter how weary you become, or what life holds, you can always depend on me for support and comfort.

When you grow older, my darling, know that I will carry you till the end of the world. I will carry you in my heart, for you are always with me.

I will carry you, always.

I have carried you, always.

The Harsh Reality.

Special needs parenting is humbling, and rewarding beyond words, but it’s not always good.

My mum often reminds me that we have to take the rough with the smooth, and she’s right of course. One can’t exist without the other, so while we have tremendous highs in this special life we also have devastating lows. It’s knowing your child will always be in a battle against her body, a battle I can’t fight for her. It is having a house full of medical equipment that you need daily. It is having to invite countless people into your home to help your child when you’d just love to cuddle up in your pajamas and have a lazy day. It’s having to deal with strangers staring. It’s the the utter exhaustion that follows stress, depression, and sleep deprivation.

It’s the journeys to physical therapy wondering if today will be a good day. It’s the discouraging evaluations. It’s doctors appointments that fill up my calendar. It’s trying to squeeze some normality into all of this.  These dark things can add up, and they feel sometimes like they are smothering you while you’re working so hard at being the very best parent to your child. They can make you question your own worth, and sometimes make you feel like you are failing. Not every day in my house feels inspirational. Some days are so dark that it takes everything I have to get out of bed. I cherish every waking moment with Aubree, she is my best friend. Her disability has taught me so much. But with all beauty there is pain. Behind every victory there was a struggle.

                      ‘I must also have a dark side if I am to be whole.’ – Carl Jung.

The Harsh Reality.

I hope that I loved you enough today.

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I hope that I loved you enough today. I hope that everyday you know that you are loved and that nothing can ever change that. I hope that you know I am so proud of you. You are the best thing I ever did. I love you fiercely and I hope you always know that. Not just in the long run, but through every single frustrating and magical day.
Did I love you enough today, little one? I sure hope so.

I hope that I loved you enough today.

Friends, and how they vanish.

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Friends don’t often hang around when you have a special needs child. Everyone walks their own paths through life and life is busy for everyone, it is often 10 times as busy for parents like us. Keeping in touch with people is very hard and I’ll need at least a weeks notice to make plans to meet up with anybody,and even that depends if we have any free days.

I have a friend, who goes out of her way to be there for us, no matter how many times I’ve had to reschedule due to appointments. Friends like her understand what we’re going through and truly care about us and my families wellbeing. Never underestimate the value of family and good friends, they are there for us through thick and thin, when I can barely cope, and when I am ploughing through fighting for what we need to make things okay.

Friendship now is simple, I have filtered out a lot of people. People who are not willing to be part of our complicated life, and that’s fine, I wish them well. I’ve got my family and few friends that may as well be family, and that’s perfect for us.

Friends, and how they vanish.