To my big little boy, my superstar, my superhero, the most amazing boy on the face of this planet.
It has been a long time since I wrote to you, a very long time since I have written of you and your updates properly on the blog.
Don’t ever think for a second it is cause I am not proud of you, or no longer want to share your story. It is cause I have as your Mummy been fighting with many demons, ones I am struggling to resolve. My strength for you has been hard to keep constant. I feel like a failure to you my baby. I am your Mummy and I was given the task to keep you happy, to protect you, guide you, make life amazing. I feel I am not achieving that. I want to push that magic button. I need to. I 5 years on seem to be grieving more than I did 4 years ago when we realised your life would not be so smooth sailing.
Dealing with the knowledge that it is solely due to me you are this way haunts me daily, seeing you struggle in pain, listening to your breaths stop at night, never knowing what the next day shall hold for you and it is my fault.
But beside all that the love, compassion and above all else PRIDE I feel to be your Mummy, to have you as my son is what spears me on. You never complain. Seriously, what type of person doesn’t complain at being dealt such a hand – a genuine SUPERHERO that is who.
These past months have been hard and awesome all at the same time. You nearly left us on your birthday, you as always said “NO WAY” to those doctors. You told them they have no clue, you are a miracle and came out the other side even stronger. Learning to walk when we were 95% told medically you in no way ever could! You are now known as the self healing child, my miracle. Your walking journey has a long way to go, you may never manage without aid fully, but you will walk me down that aisle in November and I shall sob.
Miracle number 2 – we found out you have a serious, rare type of apnea and on a good night you stop breathing up to 200 times a night! I can not believe you are still here, I knew in my heart but so glad they finally see it. You still get up each day and perform miracles, learning to chew food, to walk in school, to tolerate crowds at school to leave the house and not meltdown, to look me in the eye (if only for a minute) to hold my hand.
But with all this comes worry and one of the most fearful reactions by doctors Mummy has ever to deal with. I have not slept since our meetings on Thursday. I am your Mummy you are not allowed to see my fear, but I have more than I know to handle for you my baby.
I am sure we can find a way. Promise Mummy like always before you will fight, promise me you will prove the doctors and even me wrong, there is never a time I needed you to more. Cause the alternative is not acceptable and does not bare thinking of.
Thank you Grayson, I daily feel anger for you, not towards you (well apart from your naughty willy touching) but because you deserve to be feeling the wind in your hair as you run, to sneak sweets when I am not looking, to play with toys and smile. But you don’t complain, you enjoy your world (I hope), you have touched more hearts than anyone I know, you make people look at the world differently. You have made me. The good and the ugly.
I love you, there are no words that explain how I feel, I love you is not enough. We shall fight these new very tough challenges and if that worst case has to happen we will say F**K you and make it! Because you are a star living on earth!!!!
**please if you feel in anyway I am asking for pity in this post, or do not like the honesty about living a life with my son move on and don’t comment, this post is not for you. It is for me, it is for my son and for the many people I am thankful I have to support me. Life is not a bed of roses, it is bloody difficult. But I love my son no matter what. Would I want him normal – hell yeah, but I would never not want him here.