Coming out of the Storm!

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.”  Haruki Murakami

Today has been spent reflecting on the past 5 years and thinking about the future.

For the first time in Lyalls life we have nothing hanging over us. No impending or potential surgeries to get through, no wondering if he will come off the vent, whether he will ever breathe without his trachy, no constant worries about if his airway is clear, if we have all the equipment we need with us, will he pull his trachy out etc etc etc.

Leaving the hospital yesterday it almost felt like I was finally starting my maternity leave-that window of time between having a baby and going back to work, that time when you bond, have fun and do new things. Obviously we have had a fantastic time with Lyall over the past 4yrs 9months and he has thrived however there has always had a shadow of uncertainty alongside all of those times. Our first concern when doing anything has always been Lyall and is he medically safe. At times most people were not even aware of the level of vigilance we have had to have, I suppose we started to make it look so natural and on the whole stayed so calm that what we were doing just seemed “normal”. Indeed for us it just became a part of our lives but one you could never ever become complacent about.

Looking after Lyall has been a 24hr job. Once we stopped having carers overnight we took turns in sleeping in Lyalls bedroom which meant a disturbed night. He always needed some level of medical intervention overnight and you would wake up to any change in his breathing pattern or unexpected movement or alarm from his SATs machine. Nothing could be ignored in case it was a blocked tube or the tube coming out. Then there were the daily routines-checking,cleaning and charging up his equipment, ordering medical supplies(from 3 separate places), changing his trachy tapes, ensuring his suction bag was always full of the necessary supplies, making sure we had spares of everything in the car, the list goes on……! Things changed when he came off the ventilator and did get a bit easier but we still had so much to be aware of before even embarking on a simple walk to the woods! We lost count of the number of times we would arrive somewhere with everything necessary to save his life but no nappies or change of clothes!

Despite all of the above we have never once resented the trachy or the ventilator when we had that. Without those things Lyall would not be here. We don’t really see ourselves as being “trachy free”. Yes Lyall no longer has his trachy and is breathing through his nose and mouth but to be free of something implies it was something that was negative. Yes it affected our lives but we cannot see something which in reality gave Lyall so much freedom as a negative thing. We know many many children who will always have their tracheostomies and many who will always be ventilated. Those children and their parents absolutely live life to the full and achieve the most amazing things. Lyalls life now is not any better than theirs, it is different to how it was but we see that as a new chapter for us. This period of time will always be fundamental to who Lyall is as he grows up. It has shaped his early years and the challenges he has faced at such a young age will go on to impact on his life for a long long time.

When we went for my 20week scan just over 5 years ago and found out about Lyalls heart condition, probable Down Syndrome and other “potential” health issues we were plunged into a world we knew little about. We were terrified and felt very alone. If we’d known then what we know now things would have felt very different. Despite the scary times of which there have been plenty including many in the past 2 weeks, we have also had some incredible times and done things we would never have thought possible. We have become medically competent and have an understanding of Lyalls health needs which means we are able to advocate for him in the most difficult of situations. We have become involved in and helped develop and set up support groups such as Sunshine and Smiles-Leeds Down Syndrome Network and the Trachesotomy UK Support Group. We have been involved in the most incredible campaign to Save the Childrens Heart Surgery Unit at Leeds appearing on local and national TV, radio and newspapers. We have learnt Makaton sign language and helped Lyall to gain a voice despite the barriers he faces in learning to talk! Most of all we have formed friendships with people through all of the above who we know will be friends for life. Some of these people we have yet to meet in person but we will in time. Shared experiences and struggles can mean friendships form across the internet. Many a time a virtual hug has been what is needed to get us through a tough patch!

So as we embark on the next period of Lyalls life we will never ever forget this time. We are looking forward to really really enjoying this time with Lyall before he starts school in September. If we are perfectly honest we feel a little bit cheated, almost like we have spent the last 4+ years keeping him alive and just as we get a bit of worry free time with him, he’ll be going off to school! So watch out Lyall because your mummies have got lots to cram in with you before September! Shall we start with swimming???????