Parenting a child with special needs has a lot of added challenges, but essentially it’s not that different from raising any other child.
You change your priorities and routines, centering your days around their needs and spending many sleepless nights looking after them when they’re sick. You suffer when they struggle. Every little laugh seems like the most wonderful sound in the world. You worry about their future, so you try to give them the best tools to become independent and confident adults. In other words, you give of yourself completely, forgetting about your needs and desires. This is something you learn as you become a parent sooner or later.
What makes our journey a bit different is the intensity and speed with which you have to learn to be that selfless parent.
Suddenly you’re thrown into a world in which nothing makes sense. Hospitals, therapies and specialists you didn’t even know existed, diagnoses you can hardly pronounce (never mind understand). You read about milestones that are just a painful reminder of what your child cannot do. You also learn to swallow your tears when you see another child his age doing things so effortlessly. You throw away the plans and dreams you had of a neat and predictable future.
Instead, you become a self-trained nurse, avid researcher, expert dietitian, personal coach, interpreter, advocate and campaigner for your child’s rights. You have to learn all this fast. There’s no time for becoming, you must be that parent, that special parent who hopes — despite the worst prognosis — who gets up every morning even when your body just wants to stay in bed. That parent who sees no limitations of what your child can achieve. A parent who believes in miracles.
There’s grief but no time for grieving. You learn to enjoy the now and what is, appreciate the little moments, and as any other parent you just give of yourself completely, expecting nothing but a smile in return. After all, it’s the biggest and craziest act of love I can think of.