I started this blog to raise awareness mostly, about Alexander’s disease, about what it is doing to Corry. What he must go through daily. But it is also so important to recognise the impact life limiting conditions can have on other family members. My blog page is a place for my very strong feelings. This particular piece is to recognise that so often ‘the other child’ or children from families similar to ours can be overlooked and undervalued. They don’t get the credit they deserve.
The guilt I carry for my daughter is ever present. She holds so much on those little shoulders of hers. She has no choice but to weather this storm.
The cards we have been dealt have seen Lily take on a lot more than she should have to. She can appear to be a happy child, a sociable child, full of energy, full of life. A typical 6 year old girl, and yet she is worn. Tired.
I have many days where I crack. I have never been an emotionally easy person. I am especially fragile of late. When functioning on little sleep, an empty stomach and behind cloudy eyes, the smallest of difficulty can feel intense… Overwhelming. I can damn well blow it all out of proportion.
There have been times, too many times, that I have been a person I don’t want to be.
Amidst my fear and anger at having to watch my son in pain, being violently sick, unable to hold himself up, frightened at what is happening to him. At the sight of his ng tube coming out just as we’ve arrived home from the trip to hospital to have it put back down already. At the state of the house while I’m just sat around staring at it all, not an ounce of energy to do anything about it. During these times, I have said some absolutely unnecessary things to Lily. I have acted selfishly. I can resort to becoming a spoilt brat at the unfairness of it all.
She once gave me this responce to my outburst –
‘It’s okay mum. You feel sad about all of this. I love you.’
She cuddled me while I cried.
I cried out of exhaustion. For release.
I cried for the overwhelming guilt I had; that she felt I should be excused for speaking to her that way. That she was coping with her emotion in a far better way than I. Mostly, I cried because I couldn’t quite believe how absolutely amazing she is. How proud I was… I am of her. That she could see my weakness and run with it. That she could make sense of my actions, allow me to feel shit and not take it personally.
I feel sad that she has had to become so emotionally ready, so young, but also blessed that she has been able to do so, and found the strength within herself to take this on.
Lily is a sibling to Corry and a daughter to me, but she is also a carer, and a truly amazing friend. A person who sees me at my worst and still shows me love. A little, but very grown up 6 year old girl, who I hear get out of bed in the morning and whisper to her little brother, ‘come and play trains with me, so mum and dad can have 5 more minutes sleep’. A sister, who so often has to take second stance to her brothers needs but adores him none the less.
You are everything to me lovely Lily. I hope that you know. I am here for you, as you are for me. When I have to be away from you, for appointments and hospital stays, when I miss your school events and your activities. When you can’t have your friends over to play. When we are not together for your birthday. When you have to go to stay with other family members. When Corry has slept all day, and therefore stays up later into the evening, whilst you stick to your routine. How he gets to choose exactly what he wants to eat, even if it is chocolate all day long because anything for him is better than nothing.
I know it must seem unfair. That at times you will feel hurt and pushed out. That you must feel sad and fed up with all of it. I will feel it to. It is never my intention for you to feel bad. This was never part of my plan for you or for Corry. It was not the plan for me or for dad. But we must roll with it. Through these tough times we will be connected like no other. Together we can see through the deepest darkness. I love you so.