I remember the start of our journey of ‘What …? Why…?’ with Alex very clearly, though I don’t like to think of it often.
It makes me go cold.
Want to cry.
You never think you ask for much when you ask for a family of four … for everyone to be healthy, no unforeseen complications.
Turns out you’re asking for the moon.
We had endless hospital appointments.
Friends, family, well meaning strangers all trying to understand something that … well, couldn’t be explained. Our son wasn’t developing the way he should. That much we knew. Anything beyond that, unexplained.
No box to tick. No neatly tied up end of series explanations for us. Just endless cliffhangers.
What I want you to know though is…
It gets easier.
You worry less. Or at least not so constantly. Maybe only once a day, not once an hour.
You cry less.
You do find that overly used but-oh-so-true phrase – your new normal.
You will find what works for you.
What works for your child.
What works for your family.
Things feel less insurmountable.
You will feel whole again.
I’m not saying it happens overnight. Alex is six now and there are some days I still feel like I’m drowning in uncertainty… guilt … worry. But those days are fewer.
Without a doubt I – and we as a family – turned a corner when we discovered SWAN UK. We found a group of like minded parents all in the undiagnosed boat. But with numbers comes confidence. And with confidence comes… well, the world.
This amazing group … we are a tribe. We band together to help each other online, in person, as much as we can. With help, advice and humour.
All saying: ‘You’re not alone’.
Previously I never needed an online support group, had no idea what it would be like. But I don’t know that we would have made it through in as good shape as we have without them.
**April 28th is #Undiagnosed Children’s Day and SWAN UK’s mission is to reach out and find those parents of the 6,000 children who are undiagnosed every year. Please help us find them and support them.**
Mummy, are you telling them about SWAN again…? Tell them they are awesome!!