9 years. Halfway to adulthood.
Today Alex turns nine. This birthday fills me with joy and pride, but also with thoughts about just how precious the next nine years are.
When I look at Alex today, I can hardly believe that nine years have already passed since the day he was born. I remember that day, the fear, the uncertainty, and the moment when our life suddenly became completely different from anything I had imagined.
Back then I was not thinking about what job Alex might have one day, where he would live, or what his adult life might look like. There were moments when only one thing mattered: that he survived. Then came more operations, months in hospitals, rehabilitation, therapies, doctors, tests and diagnoses. Step by step, we began fighting not only for his life and health, but for his development: his first step, more capable hands, better balance, new sounds and words, communication and independence.
Today I can see the extraordinary distance Alex has already travelled. But nine years means something else to me too: it is halfway to his 18th birthday. Just nine more years and, legally, Alex will be an adult. When he was tiny, that day seemed unimaginably far away. Today I know how quickly nine years can pass.
That is why I increasingly ask myself: what will his life look like nine years from now? Will he be able to dress himself, prepare something to eat, shop or travel somewhere on his own? Will he understand money and be able to manage it? Will he be able to work and make his own decisions? How much support will he need in everyday life?
This is exactly why we do so much today. Physiotherapy, occupational therapy, speech therapy, riding therapy, osteopathy, listening therapies, intensive rehabilitation stays and our daily exercises at home are not only about helping him today. Every hour of therapy is an investment in his future. Every skill Alex learns as a child may one day mean one less thing for which he needs help as an adult.
I organise his therapies, appointments and rehabilitation stays many months, sometimes a year, in advance. I take him there, stay by his side and continue working with him at home. I do not know where the limits of Alex’s abilities are, and I do not want to set those limits for him. I want to give him every possible opportunity so that nine years from now I can say: we used this time as well as we possibly could.
But there is another part of his future that I have to think about as his mother: his financial and material security. Today I am here. I organise his life, fight for what he needs, make decisions and give him a home and security. But I also know that I will not always be here.
Perhaps this is one of the greatest fears of a parent of a child with a disability: not only “What will happen to my child when he grows up?” but above all, “What will happen to him when I am no longer here?”
Alex has his sister, Melanie. I hope with all my heart that they will always remain close. But Melanie has the right to her own life – her dreams, her family, her work, travel, passions and her own choices. I do not want her to feel one day that, because I am gone, she must take responsibility for her brother’s life. I want her to be able to remain his sister – not become his carer out of necessity.
That is why my work for Alex’s future has two equally important goals: helping him become as independent as possible, and building financial and material security that can protect him even when I am no longer here. I do not know today how independent Alex will be as an adult. But I do know that we still have nine incredibly important years before he reaches adulthood.
I want to use those years as well as I possibly can: for therapy, learning, development, independence and preparation for life – while also building a foundation that can support him in the future. Because today I am no longer fighting only for Alex to make the next step forward. I am fighting so that one day he can have a life of his own.
The greatest gift I could give both of my children would be the certainty that Alex will be safe even when I am no longer here – and that Melanie will be free to remain, above all, his sister. ❤️
If you would like to support Alex on his 9th birthday, you can contribute to our birthday fundraiser. Donations help us fund therapies, rehabilitation stays and the next steps towards a future in which he can be as independent as possible.