Well baby, it's been a year now since your health deteriorated and what a year it has been. You really have been put to the test and I can not express how proud I am of you. You've never given up despite how tough things got. You still fight hard like you always have, you haven't let anything stop you from being you. We still don't know what happened and caused all of this and probably never will. I still now, a year on, wonder how things got so bad and as serious as they are. I wish I could change things baby, take away your pain and turn the clock back to how things were before all of this. I wish I could make it all better and it's so hard knowing I can't, nobody can. We just have to make the most of what we have and I will make sure that happens.
A year ago today we were at monkey Forrest, do you remember? You was really uncomfortable and crying all the time, I'm not surprised though. Your belly was big and quite hard too. Your drainage bag was just filling with dark green bile but you still managed the day and even got out your chair and went for a crawl around the play area. That night you got worse, early hours you were screaming, not crying. I got the shock of my life when I came into your bedroom. Your belly was huge and you looked awful, in so much pain too! I scooped you up and took you downstairs to call the out of hours nurse. In between screams you seemed to settle and nod off, well that's what I thought you were doing at the time anyway. In actual fact you were loosing consciousness. We had to rush you to A&E very early on the Saturday morning which led to resus and then to theatre. That was difficult, you going to theatre and nobody knowing what they was going to find or do until they cut you open. That was the start of this chapter in your journey.
It's been such a difficult time. Think every emotion possible has been experience at various points too! You've even had me scared and worried that I was going to loose you, but no, you kept fighting and I'm so glad you did Harvey. But that's you isn't it, you never give up on anything. Things haven't gone the way we would of like them to, I mean who would want to hear that you beautiful innocent baby will never get better but things could get worse? We tried so hard to reverse the intestinal failure but up to now it's not been successful. I won't give up though Harvey, you never do so neither will I. As long as your fighting then I will continue to fight with you and for you when needed to. You've come along way in the year that has passed, you've gained weight, you have energy again, your very cheeky and smiley again, well that never stopped but seeing more smiles from you makes my heart melt. You know Harvey, with everything you have been through people wouldn't of thought you'd still be able to smile at the end of it but you do and not just at the end of it you smile the way through. You have a contagious laugh and a smile that lights up a room. Your a very happy boy and I love that about you. You are always in high spirits, and are loving too.
Never did I expect you'd have to go through the things you did, and in a short space of time too! You were so ill baby, but for some reason I didn't see how ill you were at the time, it's only now looking back and thinking about the past year that I think god things were bad! You had a twist in your bowel, had to have a stoma, 3 bowel obstructions afterwards, a complete bowel malrotation, a central line, needed a catheter in your stoma on 2 occasions on 1 of those had 2 catheters inserted, had to be catheterised in your bladder, chest infections, blood transfusions and almost needed ventilating, all of that in the space of 6 months!! How your little body coped with that I don't know. Your were so brave through it all, still are. Things never get any easier for you, problems are always arising. When we feel we're getting somewhere and your doing well its never for long before another infection comes along or other problems appear. Nobody can say what the future holds for you, whether you'll need a bowel or liver transplant or both, if you'll manage years on TPN or weeks. It destroys me that nobody can tell me what is in store for my beautiful boy. I'm trying not to think about the future and concentrating on now but it's difficult. I don't want to waste any time, I want to cherish it. Your here and safe in my arms where I can protect you and fight for you and I couldn't wish for anymore. I will do whatever is needed to makes sure you have the best and most comfortable life possible. You are an inspirational little boy with the biggest of hearts. You really are one of a kind and so precious. One day Harvey, we will get some answers and you never know, with science and medicines today maybe there will be something that could help. I will keep trying as best I can to get your story seen. I won't let you down baby.
Whatever this nasty illness is that is causing so much pain and heartache, we will get through the hard times together. You will never be alone or have to suffer, I will always be by your side holding your hand on this journey. If the fight gets a bit tough, I will carry you as far as I need to. I will always make the decisions that are right for you Harvey and you will never have to endure anything with no benefit to you. There is nothing that you could have done differently that could of made me any prouder of you than I am already. You will forever be loved Harvey and there's nothing more that I'd like to say than 'we will get through this and things will be better' because I don't know how things are going to be for you. What I can tell you is, as long as I am here I will make sure you get everything you need to be able to enjoy life. You will always have all the love and support to see you through any other future chapters life throws at you. Lets pray for an easier year this year baby, every superhero needs a rest from time to time.
Keep fighting baby, you are doing amazing
All my love