All your life it has been impossible to get a diagnosis because no body knows. Blood tests, biopsies, scopes, genetic testing, all showed nothing, yet we know there's something. Being one of a kind was something we used to laugh about, not having a diagnosis didn't effect anything, You was making your own milestones, doing things your way and doing well with only minor blips. Now, a diagnosis would mean the world. To know what is causing so many problems to my beautiful boy and why you are suffering. What would be even better though is a cure. To look at you playing with your lego, laughing smiling just so happy, it breaks my heart knowing what the future holds. Thinking this can't be true, youre so happy and look really good. But then when you show your ill, well, my heart breaks all over again, seeing that yes this is really happening. Why? Why my beautiful boy? They say things happen for a reason, I wish I knew why you deserve to suffer the way you do. Everything that has been thrown at you, you have coped so well and fought your way through smiling. Things have got a bit more serious now, you are having to fight a bit harder and sweetheart you are doing it so well. In the past year alone you have tackled a lot of hurdles and I am so so proud of you. Doctors don't know what's going on, if only you could tell me baby. If I could take away your pain I wouldn't wait a second, I would do anything to keep you smiling.
From the first second I laid my eyes on you and finally got to hold you all those 6 years ago, my heart melted. A mothers love is there with you whilst carrying you, protecting you whilst you grow in your mummy's tummy. That love is stronger in those first seconds of meeting you, it is then a mummy's duty to protect you and keep you safe. I always blamed myself for you being poorly, still crosses my mind from time to time. I think back, trying to see what I did wrong when you was in my tummy. I think all mummy's blame themselves if any harm comes to there precious child. I sit for hours now thinking, staring into nothing trying to see how things have got like they are now, so serious. It scares the life out of me but I am trying my best to be strong for you. To be by your side, giving you the love, and care you need to help you fight. I'm praying that one day soon you will not have to fight and can enjoy what so many take for granted.
The past couple of months haven't been your best. Pain, infections, blood transfusions, tests, scans, xrays, problems with your line, scopes, and over a dozen courses of antibiotics. It has really hit you hard, and made you very weak. You have come along way this past week and I can't tell you how relieved I am. You were so so poorly, you had me and everybody else who loves you very worried. Wish we had some answers though, your body still isn't behaving and we don't know why. I will get answers though sweetheart, one way or another.
I am trying to get things organised to get you home. You will be safer at home. You will get to be with your sisters again, they miss you terribly. Jo and Michelle are going to get everything we need to have you back in our living room playing with your lego and climbing up on the sofa to watch tv. We will get you there little man. I'm sure there's plenty of people that will be wanting to see you too. Your a big inspiration baby, you make a lot of people look at things in a new way.
I promise you Harvey, I will never let you down. I will be with you every step of the way through this nasty time you are having. Everyday we will make memories and when you get home there will be bigger memories to make. You are inspirational sweetheart, you keep smiling and flirting your way through and we will get there soon. I am so proud of you soldier.
All my love