Hey Mum, I just want to tell you I ache inside when I see you looking at me so sad, because I know you just want the best for me and you wish you could change things.
But you know something...you can’t!
And I can’t either, we can certainly work hard at it but to be honest I don’t have a problem because this is me and it's just going to take time and if it happens, super!
So I thought I’d share a few ideas to help us get over this together, and get back to having fun.
Apart from thank you and I love you... this is what I am saying to you when you gaze into my eyes looking for a response.
Don’t Sweat the Small Stuff
My morning therapy sessions, hospital visits, mealtime routines and massages before I go to bed can be a pain for both of us, but you know what?
I enjoy your company, so much!
You are my best friend. So don’t stress, focus on the good times. Life is good!
You Only Think You Have Problems
A problem is a solution waiting for us to find it.
Remember all the times when we go to the shops and do stuff together. I am always so proud to be with you, and I know you are delighted to be with me too. Life’s great. Let’s celebrate it together. Remember there are people out there who have bigger problems than we do, just look at the news daddy makes us watch every night!
Genuine Happiness Isn't Out of the Question
Happiness is always possible because happiness is in the mind and not the body, and we feel the same things although we are not the same. Everybody is different and I love you for what you are. I know you cant tell sometimes but you make me so happy Mum!
I Am What I Am
Like I said I am me and all I ask is that you love me for what I am and don’t feel awkward any time, you give me 100%, all of the time. The biggest gift that you can give me is acceptance of me, just the way I am. I have no problem with this. I see your heart sinking at therapy sessions sometimes. It doesn’t matter what the world thinks or that people stare at us in the street or at the restaurant. At the end of each day I look at you and I am so thankful I have someone as wonderful as you in my life. Not everybody has a 'you' in their life!
Family Participation is Possible
Since you bought me the GoTo Seat I feel part of everything and involved in our family life because laying on my back and in my wheelchair most of the day is, well pretty boring to put it mildly. We all have issues. This is why we have families, we can share them with and care for each other. Family participation has never been better, I feel more included now than ever, we can go to the swings in the park, I can sit at the table and play with Thomas and even go on the bicycle cart with daddy as driver!
Never Give Up on you or me
The other thing I want to ask is that you never give up on me. Believe me I know it’s difficult when I see the concern and worry on your face. We have each other and that’s all that matters. We are in this together, for the long haul. I am trying!
Don’t Tell Me you Can’t
The other side of that coin is I know I can’t give up either. The doctors and therapists may find something new around the corner and you know something, maybe they won’t! I see you looking for hope on the Google machine everyday, sometimes you find it, sometimes you dont. Sometimes you read something and smile, sometimes you read something and cry. Please don’t stress if I stumble sometimes. Be proud of me that I keep on trying. Because I am proud of you! You can do this, we can do this together.
Smiles Are Free
In return I’m going to promise you that I’ll always try my best to greet you with a smile no matter what the day throws at us. I want to tell you how I perk up when I see your smiling face. For someone who is always worried about money... smiles are free. Let’s give them away to everybody, free of charge! I think it actually freaks people out that we both smile at them when they stare at us. I love how it makes them feel awkward.
Life Is Too Short
It really is you know, and that’s for all of us! I just want to put my best into everything every day and give something back to everybody. I appreciate what you guys do for me every day, even my younger brother Thomas, who feels like second fiddle sometimes. Please don’t be mad when he gets frustrated either. I understand why!
I have a Disability, I wish other people would Get Over It
I mean this in the nicest way. The other night I heard you and dad arguing about my progress at therapy and what the therapist said. Please let’s accept what happened and move forward, it is total acceptance of everything which will help us all move forward. We can’t turn back the clock can we? We will all have our good days and bad days, we just have to live with this, its part of who we as a family are.
Thanks for listening to me Mum. I hope I didn’t say anything that brought tears to your eyes because you look so pretty when you laugh. Let’s throw our problems out the window, and go exploring in the garden, I love when we do this!
In what ways does your child inspire you and others everyday?
Did you receive adequate support and information when you received your child's diagnosis?