01 March 2016

When you never think it will happen to you, part three

So here we are, I've not updated the blog in so long as it's just been too much to find the time to sit down and write my thoughts. Also because sometimes writing down those thoughts and naming things can be a little scary. As if seeing it written down on a page makes it all the more real. But real it all is. 

So Rohan is seven weeks old and we're finally home, something I can tell you I didn't think was ever going to happen any time soon. Seven weeks of going back and forth to the hospital everyday is hard, really hard. It took its toll on all of us, and our lives were sort of on hold. I could see that it was really starting to affect Theo, his moods were a little all over the place and he was becoming quite angry at times and finding it difficult at school. It made me feel awful having to split that time between the two of them, not being able to be there fully for either. I also know that Theo just really wanted Rohan home, and was so excited about being a brother and wanting to show him off. When we've picked him up from school or gone anywhere with Rohan and him he brings people over to show him "his baby brother". He's taken so much of Rohans condition in his stride and actually hasn't really questioned the fact that he's got a tube coming out of his mouth and oxygen. I think growing up with it being normal for us is really going to help him and us all, and I really hope he understands that Rohan is going to be different, but that hopefully that's ok.



Because we do know that Rohan is going to be different. We finally got the results back from the genetic testing for a syndrome back and it was confirmed that he has it. It's the same one they suspected from the start, and the one we looked up and researched. It's called Rubinstein Taybi Syndrome. If you want to have a read up on it yourself I can suggest this website, which presents it in a less harsh medical list of problems. 

It's scary. I'm not going to begin to say how I feel about it because I just don't know. It's like a constant swinging of emotions. My main one is that of disbelief. I can't believe it's actually us who are going through this. I keep on thinking what it would be like if I knew someone going through it and how I would feel, but then coming back to the fact that it is indeed happening to us and not someone else. We are the 1 in 125,000 who is affected by this syndrome and it happened completely by chance. It could have so easily all have been perfectly normal and our lives very different to the one we now face. We don't really know what the future will hold, but we do know it will change the way we thought we would live our lives. We're not sure how severe Rohans delays or learning difficulties will be, and of course we hope that they are on the mild end of the spectrum, but again you never know. I think each day and month will reveal more and we will just have to focus on the little steps and try not to worry too much about the unknown. But it's shit. I wish more than anything that it wasn't this way, that Rohan's problems were fixable like we thought. 

I remember the feeling of seeing parents with children with disabilities and thinking "Wow, they're so strong, I don't think I could ever do that" and somehow I still feel like we won't be able to do it, but slowly we're already learning how to do it differently. I just really really need to remember that it won't happen all at once, we have to take things day by day and not think too much about the what ifs. I'm a natural worrier and a planner and this whole thing is just forcing me to think differently about the way I am and to try not to predict and worry about the future too much. It seems kind of funny now that the very name of my blog is all about the future and what it would hold. I just never imagined that it would be this. 

I know this all sounds pretty downbeat, but I can assure you we are totally in love with our little baby and wouldn't change the fact that he is here at all. But it's a big thing to try and digest. One day it will feel ok and the next a little bit devastating, and I'm sure it will continue to happen like this for a long time. I think for now we are mainly just grieving for the loss of the life we thought we would have. Grief like this is hard because we need to just keep going and be there for the our children, but there are constant reminders of what it could have been and what we've potentially lost. I know that hopefully there will be moments we never expected and things that will come as little gifts out of this all, but for now that seems a long way off. It's going to take a while to adjust our perspectives and our hopes for the future. But that's where we are. I thought I would leave it there for now, as it's so hard to even formulate all my feelings about it all. And sometimes I like to try and not think about it at all and just enjoy Rohan for Rohan, as he is.

1 comment :

  1. Hello. Just found your instagram account and found your blog. You really are so brave. As a family and as a woman and as a mom. I have been through situations (I guess we all have) when you just don't understand why is something happening. How can things change so quickly and change the life ahead completely. But I have learned ,at least 'till now, to accept and try to be thakful , or somewhere close to it. Your family is so beautiful and I truly believe that love can pass any test. I hope all the love you have helps you with all this.
    And let me tell you... your boys are so handsome. I hope I will have a family so full of love someday.
    I wish you all the best.

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