Out of the fog…

The way I would describe my mind following our departure from the neonatal department is noisy and foggy.

The noise was my own thoughts. Mostly negative. Mostly an ongoing conversation with myself where I battled with some really shit ideas. I am normally really good at self talk. At reasoning with myself. The self talk was losing… a lot. I could not make myself see sense. “She is going to get early onset Alzheimer’s and forget who we are. She will forget me. She will forget her Sister. She will forget us all.” “You will be 78 years old by the time that happens! You will probably have Alzheimer’s! Why are you worrying about that now?” “Because I can not deal with her now. And I worry about the future so much it is crippling me!”

The foggy part was being unable to see a way out of my own self absorbed misery. It was akin to driving down a dark, foggy, lonely road. The fog starts to get heavy and you wonder when to put your fog lights on. “Now? I can hardly see in front of me. No not now. Hang on. Someone else has their lights on. I can see them. They are leading the way through the fog. If I put mine on so will I.”

The metaphorical lights in front of me were the people who provided me with wisdom, time and space to let the noise out. These people were a guiding light back to a place where the fog began to lift. I realised I was able to keep driving and eventually everything would become clearer.

There are a few stand out conversations that really made it seem possible to live and breath again.

#rockstarfriend (remember the one who has a baby boy 4 weeks older than Isobel?) came to visit me shortly after we arrived home from hospital. We sat together for a good couple of hours and we cried together. This wonderfully kind woman gave me permission to say the awful things that were in my head. It was brutal. The things you are absolutely not suppose to think let alone say out loud. Not once did she flinch at what I was saying. Not once did she judge me. Not once did she ask me to stop. She just gripped her piece of tissue as hard as I gripped mine and wiped her own tears and snot from her face as I did mine!

#toldyousofriend talked about the parents who have a DS diagnosis confirmed at 12/14 weeks following routine scanning / screening. “They have had 26 weeks to get used to the diagnosis. You have not. Come back to me in 26 weeks and if you still feel this way… Let’s chat!” This gave me permission to be in shock, to be sad and to realise that I had time to digest what had happened. It was freeing somehow… And she was right, I think Isobel was about 22 weeks old when I started to calm down and really enjoy her and not see Down Syndrome whenever I looked at her.

Then there was the friend I didn’t know. The friend of a friend. Stuart went to a party at the end of November. He came home and mentioned a comment made by a lady who was there (I don’t think she said it to him). The comment was “Sorry but I don’t see the issue? The baby is here. She is safe. She is loved. What is the fuss about?” (I am paraphrasing but that was the general gist). You see the other thing Stuart mentioned about this lady was that she has been unable to have children. I recall at first feeling a bit shocked because I wasn’t used to the challenge of what she had said but then I was nodding my head. Because actually… yes. Yes. We had our baby.

I have a number of friends who have not been able to have children and I have listened to their struggles and I realised that this stranger was giving me a great big dose of perspective. It’s not that I think I didn’t have every right to be feeling the way I was, because I did. It was the ability of this person to lift me out of my situation and remind me that there are others who have their own challenges. And actually how lucky we were to of had one baby let alone two. And just because things hadn’t quite gone to script that didn’t mean we weren’t fortunate to have completed our family in the way we had.

Finally, in December we received a card from a work colleague. I think I could count the sentences I had spoken to this colleague on one hand prior to this. I read the words in the card and realised what he was sharing with us was a personal insight into his world. He had opened up to us in such a kind way that I wept and wept. Not silent tears but great big ugly tears. The type that lead to snot and bottom lips protruding. I was totally grateful to him for reaching out to us. In this card he explained that he had a son and that he had a chromosomal condition. That he and his wife could empathise with us. He reassured us that it does get better. This was a piercing light in the fog of my brain. I read and reread this card over and over again for many weeks. It gave me strength and courage to keep going… and it made me cry several more times.

I have provided the link to the blog about Sebby for you to read. Sebby’s condition is not one that gets the same ‘press’ as Down Syndrome does. Please read about Seb and learn something new today. Seb’s Parents use the term differently abled which I think sums up our children beautifully… the path won’t be A-Z, it may zig zag across the route, it will be different but so what… Let’s talk about what our children are able to do, not unable to do.

And to be extra cheeky, I have also added a link to a Go Fund Me page. Sebby’s parents ran 100 kilometres last weekend across the Jurassic Coast. This was to raise funds for some equipment for their son to support him to walk. If you have a spare pound or two maybe you would like to contribute to their fund.

I am not going to lie… sometimes the noise and fog try filling up my brain again but thanks to the conversations I have had I can keep the noise under control and dispel the fog before it stops me seeing the road ahead. I suppose I would ask you to keep your lights on for me so, if I need to, I can follow you to a clear patch in the road ahead… Much Love.

Seb’s Story

Sebs Legs GoFundMe.

Written by Sarah Mayes for her blog, Feeling Upside Down.