Recently I've said I only see your consultant when it's bad news Harvey and once again that was the case. After talking to him today he's made us have to think about things that no parent would ever want to. I'm your mummy Harvey, I'm here to protect love and guide you, not think about loosing you. I must admit Harvey, I had to try really hard not to break down today. I need to remain strong for you and your sisters through this tough time. It's been over a year now that your condition started to deteriorate and what an emotional time that has been but you have remained strong and fought through it all. You are a fighter baby, and you make me so proud. You have touched a lot of hearts Harvey and have so many people wanting to help you and give you the best life possible. A few weeks back you were so poorly, you scared the life out of me. I felt helpless that I couldn't cure what was making you so weak. Your still recovering from that and it's left your immunity low which is a worry. In time doctors are hoping it will improve, I am too! It's always a risk that you could get that ill again which is what your consultant was saying. He wants us to put a plan in place for if you ever took really ill, how far we want to go with treatment. A transplant has been mentioned again too. I'm so scared for you Harvey but I will do right by you. I will never let you suffer nor will I push you too far. No one knows what time we have with you, weeks, months, years but whatever time we have will we make great memories. Life limited condition!! I wish I knew what this condition was that is causing so much heartache. It's times like these that I'm glad your oblivious to what is happening. I prefer it that way because I wouldn't want you to be upset. Your smiles make a bad day good again. As long as your happy Harvey and smiling, we can tackle an hurdle along the way.
You've been doing well recently, stably unstable is what they've called it and because of that they said we could manage you at home. We've been putting things in place for a while now, it all takes time. Home life could do you good, we can only wait and see. Being a family again though, that's what will help you the most. Having the love and care around you from your whole family. Make a wish foundation come today, they loved you instantly. You have an infectious smile and the best personality. You couldn't tell them a wish so me and your daddy did. They are going to make that wish come true and make it so special for you and your sisters. I can't wait. To see all 3 of you together again and enjoying yourselves will make this past year better.
I think I'm going to have to stop here, it's hard writing through tears and I don't want to cry tears of sadness, not yet. Right now you are here, safe in my arms and I'm thankful of that. You've come a long way Harvey, conquered a lot and been through more than most do in a life time and can still smile at the end of it. Your an inspirational boy and I am proud to call you my son. I love you dearly Harvey and whilst your still fighting, I will too.
Forever by your side,
All my love