“When my rare son was born my world expanded”. These words swirled through my mind as I stood with the winter sun on my face and looked out over Lake Geneva towards the Alps. I thought back to when my son was born and nothing could have been further from the truth for me. I felt trapped and suffocated. Leaving the house became difficult and anxiety-inducing. Friendships fell to the wayside as friends either drifted away or I deliberately stopped seeing people to protect myself from the pain of seeing typical children. The woman then added “and my community expanded”. Now my son is nearly three and I can finally relate to what the woman on the podcast said. My world and community have both expanded beyond my imagination. I see kindness and generosity all day every day within the rare disease community and from allies outside of it. Sadly some friendships have come and gone in my life but I think this applies to everyone as we grow older , experience more, move around and evolve as people. Some friends disappear, never to be seen or heard from again; others turn up years later with meaningless excuses for their unexplained absence. Some stick by through thick and thin, weathering every storm and some new friendships blossom out of solidarity and shared experience.
New friendships
When Kasper was diagnosed with Infantile Spasms, I joined every Facebook support group possible and I immediately wrote a post explaining how petrified I was. Before I could catch my breath, messages came flooding in from mothers all over the world. It felt like beacons of light lit up everywhere (the scene with the beacons from The Lord of the Rings springs to mind). Even thinking about it now makes my eyes well up in gratitude. I still speak to some of those mothers two years on. I’ll never forget their kindness in a moment of abject terror. All my new friendships began online but some turned into real world friendships. Let me tell you about two very special people.
One of these amazing friends has a son who has a completely different syndrome to my son yet the challenges both face are so similar. Both our boys even had the same PT before we met (we actually both fired her for making us cry and generally being awful).
When we meet up we can talk about how we feel grateful for the support with all the therapies our boys receive yet how overwhelming it can be.
We can talk about how guilty we feel for not doing therapy every day and how we just want to enjoy being mothers to our boys.
We can talk about our frustrations and worries.
We can talk about feelings of jealousy when we see or hear other mums doing normal things with their children and worrying about seemingly mundane things.
I always leave feeling lighter and re-energised.
The second friend is a rare gem. Despite her husband’s fears that a total lunatic (meaning me) would harvest her organs, she drove a 10 hour round trip to visit me (a total stranger). For months she’d been helping me with the highs and lows of accepting a new life. I now consider this incredible woman one of my closest friends.
We can talk about all the ugly thoughts that swim around in our heads.
All the things we can’t say out loud to those who wouldn’t understand.
We cackle over some pretty dark humour that might horrify some people.
If you can find someone who gets your life, gets your struggles and gets your humour, never let them go! When you find these people, life can feel a lot more bearable and a lot less lonely.
Old friendships
Not all friendships will weather the storm. It’s sad but true. You’ve said no too many time to social events, your life is just too messy and complicated for them or your grief is just too much to bear. Whatever the reason is, sometimes it just doesn’t work out.
But, sometimes it does. There are some people who stick by you through thick and thin. Perhaps these friends don’t get it and may never completely get it even if they try. Maybe their children are typical in every way. Maybe they don’t have children. Maybe they don’t even like children. But they show up time after time and offer their support. These people are truly magical. While other friendships fade with time or perhaps stop abruptly, these magical humans don’t give up.
There’s the friend who messages me every day without fail to see how I am, the friend who lives on the other side of the world but still checks in regularly, the friend who slept on my sofa during the first lockdown because I was so terrified of being alone dealing with seizures and the friend who used her free time to set up this website. They are my rocks. They were there when I needed them the most and others dropped off the face of the earth. I don’t think I’ll ever be able to repay the kindness they showed me but I will shout from the rooftops how grateful I am.
Getting to the stage where your world and your community open up is not easy. We have to accept the loss of friends while making space for old ones to withstand the hard times and for new ones to grow. It may not seem like it yet but your world and community will expand too if you let them.
