Additional Needs
Why we need the Special Olympics
by Jodi Shenal
on 3rd May, 2024
A Thousand Thank You’s...
Before I had my son Joseph, I was what some people may refer to as a pessimist. At the time I preferred to coin the term as ‘realist’, but no matter what label you put on it, my outlook on life and of humanity could often be quite bleak.
I struggled on and off for years with anxiety and depression and amongst the many challenges this presented within my own life, it also meant that at times I found it difficult to see the good in the world.
Then, enter Joseph.
Joseph made his dramatic entrance into the world on New Year’s Day of 2019, barely clinging to life after sustaining a Hypoxic brain injury during my labour. From birth he spent 235 long days in hospital before having a fundoplication and gastrostomy surgery, then following this, his highly anticipated discharge at the end of August 2019.
Joseph has numerous medical conditions as a result of his brain injury but despite the initial prognosis that seemed quite grim, he is doing fantastically well. He has his challenges but remains a very happy, clever, determined little boy.
A couple of months after Joseph eventually came home, his Dad, my partner Barrie was diagnosed with Guillain Barré Syndrome. This is a very rare neurological condition in which the body attacks its own nervous system. It affects nerve sensation and movement and in some cases, patients end up on a ventilator and need to have intensive physiotherapy to learn to walk again.
Barrie spent two weeks in the hospital before coming home. Fortunately Barrie had a mild case that kept him out of the ICU but still had at the very least a few months of recovery ahead of him. As Barrie was self employed at the time, with no insurance to fall back on for such an event we were up the proverbial creek without a paddle.
It seemed like life wouldn’t give us a break and I certainly wouldn’t have got through all of those difficult months without the unwavering support of our family, friends and Joseph’s large team of professionals that all rallied round to make sure we were doing ok.
In the 20 months since Joseph’s birth and some of the challenges that we have dealt with as a family that I have already mentioned, I don’t think I have ever witnessed or experienced such an outpouring of love, support and kindness, some of which has come from complete strangers.
I like to think that Joseph’s birth was the catalyst that completely changed my outlook on life. In many ways I have him to thank for opening up my eyes to the fragility of life and showing me how precious and valuable it really is. He has shown me what is important in life and I now have a much greater appreciation for the little things.
Although Joseph is most certainly the main reason that I now have a much more positive way of thinking, there are also a great deal of other people to thank for restoring my faith in humanity.
There are not enough thank you’s in the world for me to be able to express the depth of my gratitude for those that have touched our lives with acts of kindness both big and small during Joseph’s life.
Aside from those that are deeply embedded within the fabric of our lives that regularly support us in so many ways. There are still an immeasurable amount of people that have helped in various ways; some that I have never met and may never have the pleasure of meeting, and some that I have only had a one off chance encounter with that I often think of.
I hope they know that they have made the world feel a bit of a brighter place for me and my family.
I’m sure some of these people will likely be oblivious to the impact that they have had and many will never get to hear my sincere thanks. But I’d still like to acknowledge them all the same.
To the NICU nurse that held my hand, hugged me and offered me words of encouragement and empathy whilst I cried the first day Barrie went back to work after Joseph was born. I never did get to thank you properly before we left. Your words have stayed with me. Thank you.
To the lady in the hospital café that comforted me whilst I cried, after embarrassingly dropping my tray of food all over the floor, in front of everyone the morning after a bad night in the NICU. You sat me down and cleared up the mess I’d made, making sure that you brought me a new breakfast over, free of charge. I still haven’t forgotten about that morning. Thank you.
To the lovely people that knit bonding squares for NICU babies. The squares we received when Joseph was in the NICU brought me such comfort at that immensely distressing time. At a time when despite being across a corridor from my baby, it felt as if I were across an entire ocean from him. To have something tangible to hold, that smelt of Joseph really helped me to get to sleep at night whilst my mind was racing. Thank you.
To the lovely taxi driver who listened to me jabbering frantically about Joseph, the first night I took off hospital duty to go and have some time with a friend. You were so empathic and kind as you listened to my story and refused to charge me for my fare. You didn’t have to do that and it meant a lot to me. Thank you.
To the many friends and acquaintances of our extended family that sent cards and gifts for Joseph and who I know still regularly ask how he is doing. Knowing that so many people are out there rooting for our boy means more than you could ever know. Thank you.
To the Aunt (that we’ve never met) of one of our friends that donated £1000 to our just giving page when Barrie was out of work. To the stranger that has never met us that donated £200, and to the many other wonderful people that donated. That money was absolutely invaluable to us, it helped to provide Joseph with a much needed piece of equipment, it helped to keep a roof over our heads and food in our bellies when all we had as income was my tiny amount of carers allowance and Joseph’s DLA. Thank you all for your kindness and generosity.
To the lady in the local café that took a shine to Joseph. You’ll never know how much it meant to see you holding my baby and chatting to him the way you did. How much it meant to be asked the right questions about him in a way that didn’t make me feel uncomfortable. I hope that others will see you interacting like that with families like us and feel that they can do the same. Thank you.
To the mum of one of Barrie’s old friends that batch cooked us loads of delicious meals for our freezer. You have no idea how helpful this was during a stressful time. Thank you.
To the many other incredible people that I have not mentioned because to do so would take me until next Tuesday. Thank you, thank you, a thousand times, thank you. The world is a better place for having you in it.
I may never be able to personally thank all of these people. But what I can do is play my own small part in paying it forward when I can and be an important piece in the domino effect of kindness to spread around the world.
