We all have those times and moments in our lives that we call a bitter-sweet moment. Just lately it happens to be surrounding me constantly. My heart feels joy and pain at the same time causing myself to be confused about my emotions.
Like the sweet moment when I held Plum in my arms for the first time and the bitter moment I realised that it would never be Mango and I ever again. Bitter-sweet.
The sweet feeling of finally being able to get results from a vision assessment we have been waiting so long for and then the bitter moment that we found out Mango was 'legally blind'.
The sweet moment I saw Mango closed his eyes after breathing in the gas that would put him to sleep knowing how long we had been waiting to find out what his hearing was like and then the bitter moment that our thoughts were confirmed that Mango had a hearing loss and would need hearing aids.
The wonderfully sweet moment when Plum first lifted his head on the second day of life and the bitter moment of realisation that it took Mango 5 months to lift his head for 5 seconds.
The sweet moment when I look at Plum sleeping in his cot knowing that every second he is growing and learning something new but then I am crushed by a bitter feeling of knowing that one day Plum will out grow his big brother, while Mango struggles to put on a few inches and gain a few grams.
I wake everyday to the morning sun shinning on my face and wonder what the day has in store for me and my family. How we will all cope and deal with the things that are brought to us. Everyday I tell myself that things will always be ok as long as our family stick together. Except today.
Today I feel hopeless and overwhelmed with guilt. Hopeless for Mango, who struggles and fights so much. Yet he is so naive to understand what is going on around him. Not realising that everything is a struggle and everything will always be 100 times harder for him, now, later and forever. He will never know the feeling of easiness to hold a spoon, point a finger or control his body.
The guilt that tries to pick at my heart strings everyday reminding me that Plum will never have a proper childhood just like his brother. Bringing him along to every therapy appointment and hospital stays. Being brought up knowing that his normal will always be with a brother that has a disability and will always require extra help. Just like his brother, his first friends may be his brothers therapist and doctors. Not because he needs it but because he hasn't had a choice to be able to choose friends because he hasn't been open to that type of environment. Where is the time? The guilt of not having enough time for the both of them to show love and affection like they deserve every minute of their lives.
I feel as a mother/ full time carer, I want the best for my children. The best anyone in this world could ever have. I'm told all the time that I shouldn't be too hard on myself because what I give them is everything I have. Yes, this is true. But what I give is still less than what a 'normal' family can give. What I can give are only a few minutes or hours in between appointments and feeding and changing nappies is a small amount of play time and love. Reminding them constantly that I love them and that I am giving my all. My all may not be enough but it's everything I have to give. I would give anything to see smiles on their faces.
While they crave to want the best, I also crave to give them the best.
I wake everyday to the morning sun shinning on my face and wonder what the day has in store for me and my family. How we will all cope and deal with the things that are brought to us. Everyday I tell myself that things will always be ok as long as our family stick together. Except today.
Today I feel hopeless and overwhelmed with guilt. Hopeless for Mango, who struggles and fights so much. Yet he is so naive to understand what is going on around him. Not realising that everything is a struggle and everything will always be 100 times harder for him, now, later and forever. He will never know the feeling of easiness to hold a spoon, point a finger or control his body.
The guilt that tries to pick at my heart strings everyday reminding me that Plum will never have a proper childhood just like his brother. Bringing him along to every therapy appointment and hospital stays. Being brought up knowing that his normal will always be with a brother that has a disability and will always require extra help. Just like his brother, his first friends may be his brothers therapist and doctors. Not because he needs it but because he hasn't had a choice to be able to choose friends because he hasn't been open to that type of environment. Where is the time? The guilt of not having enough time for the both of them to show love and affection like they deserve every minute of their lives.
I feel as a mother/ full time carer, I want the best for my children. The best anyone in this world could ever have. I'm told all the time that I shouldn't be too hard on myself because what I give them is everything I have. Yes, this is true. But what I give is still less than what a 'normal' family can give. What I can give are only a few minutes or hours in between appointments and feeding and changing nappies is a small amount of play time and love. Reminding them constantly that I love them and that I am giving my all. My all may not be enough but it's everything I have to give. I would give anything to see smiles on their faces.
While they crave to want the best, I also crave to give them the best.
