I wish I had magical words to ease your anxious heart and mind, but as I write this letter I realize that sometimes in life there aren’t perfect words. Words can fall short in moments of drastic change and only time can bring clarity and weight to the words that often feel so cliché. I want to let you know that I do not presume to know exactly how you feel, but I can only imagine that you are feeling overcome with a tidal wave of emotions as you enter what seems like a foreign world because I was there not too long ago. I remember so vividly receiving our daughter’s diagnosis and the journey it took my family on, which is why I write this open letter.
Between multiple appointments, assessments, questionnaires, and navigating through medical lingo, it may feel as if the odds are against your child – and you. Attempting to wrap your mind around the prognosis the specialists are giving you is difficult to digest and the intensity of your new hectic schedule has you mentally exhausted. The grief that comes with mourning a child who is still alive is gut-wrenching and guilt-inducing all at once. The loneliness and envy that creeps in as you watch others living the life you wanted – the life you had hoped for but didn’t get.
I remember those days.
There may be moments of feeling a very deep sense of loneliness that makes you feel disconnected from those around you. The weight of the reality of a diagnosis can practically take your breath away and you crave to find help but aren’t sure where to start.
I remember those days too.
Regardless of how your journey has started, I write this letter not to have you relive what you may be going through right now, but to speak hope into your life. Your emotions may be raw, but I hope that you can trust that just like the beams of light from a lighthouse can break through thick fog even from a distance, you too will be able to break through the emotional fog and find yourself on easier ground in due time.
I want to remind you that you are far more capable than what you give yourselves credit for and your child is far more able than what medical providers gives them credit for. Every moment in which you think you can’t handle it all, you will somehow find a way to. You will not always feel strong and that’s ok – you’re human. Strength will come in the form of both a thundering roar that conquers and in a gentle whisper that says you’ll try again tomorrow.
There is no shame in either.
As you child grows, any pessimistic words you’ve heard come from your child’s specialists or anyone else for that matter will fade into the background because you’ll see far past their inability to appreciate the remarkable person behind the diagnosis. Remember: your child’s value surpasses any milestone checklist and evaluation results.
But the most beautiful thing apart from simply becoming a parent, is the beautiful community you will find that will walk with you through many seasons of your life. There’s a special kind of bond between parents who are raising children with complex needs, so know that you are not alone and there are many who will become champions for your family.
Like a valuable diamond or a pearl, what is required to produce such a treasure is both pressure and patience. And just like your parenting journey, there is no denying the pressure and stress you may feel at times, but hold fast to the hope that in due time your gem, which can come in many different forms, will come forth and you’ll find yourself in a space in which you’ll truly discover that life does not have to be typical to be absolutely wonderful.
With Much Love,
A mother on a similar journey