The life of parenting and caring for a child with FASD can be lonely. Complicated. Too often it’s distressing, the self-doubt is huge. You can feel scared… overwhelmed..freaked…sad…angry…determined…depressed…discouraged…uncertain…lost…guilty…out of control…small.
I have felt every single one of those emotions in the last week – quite possibly each of them every single day.
Yesterday we had a local support group meeting (a group we started where none existed). It was a casual meeting, just talking with other families for two hours while our kids played together in their “FASD Club” as some of the children have started calling it – kids who normally don’t want to go out, but who all look forward to this. For us parents too, it’s a kind of club, where we can know others won’t judge, others will relate. A lunch with another parent of a child with FASD sitting in the rain as if it were natural, because our guy was having a blast in the mud and on the swings. It was rejuvenating. Even though I was bone-tired. Even though the topics can be grim. We found hope.
It’s been a long week (thanks in part to a national media blitz so insensitive to those who have FASD and their advocates that it left me stunned, drained, angry – and yes, recommitted). Last night my husband and I were so tired that normally we would have crashed at an early hour. But a friend had heard about the week – she insisted (took no excuses) – and had our son with FASD over for a sleep over. It allowed us to chill out, spend time with our older neurotypical son. It was low-key – we stuffed ourselves with Thai take away and Hagen Dazs, watching a newly released DVD.
Yes. I know how amazing that day may sound to those who have no such support. I feel bad even admitting this. I know we are lucky. Too many are out there feeling too alone.
Remembering where we once were too, and how massively different yesterday was from those early days, it got me thinking how important it is to acknowledge just how amazing a role friends can play.
I take my hat off to those friends – old friends, new friends, family friends, work friends, social media friends, neighbourhood friends, school gate friends, Facebook friends, dog walk friends, smile-in-the-shop friends. Heroes, one and all, they quite possibly have no idea how much they are appreciated.
Here’s to the friends – the ones with the kettles and the tissues. The ones who check in regularly. The friends who actually slow down and wait for you on the street rather than sneak around the corner as if they didn’t see you. The ones who look past the bags under your eyes and tell you the colour of the crumpled t-shirt suits you. The ones who make you laugh. Who let you cry. The ones who hold a seat for you at the coffee shop, knowing you might not come that day but who are ready just in case.
Here’s to the friends who calmly step over the shoes as they enter your house and who look past the dog hair and the piled-high counters. The ones who don’t ask what is behind the closed doors and the ones who just laugh at the laundry drying everywhere. The ones who ignore the unidentifiable smell. The ones who know where you keep the tea.
Here’s to the friends who didn’t run when things got complicated. The ones who googled rather than denied. The ones who asked questions rather than dismissed what you were saying. The ones who heard your concerns behind your frustration. The ones who were confused and overwhelmed themselves but who asked rather than assumed.
Here’s to the friends who open doors others slam shut. Friends who reassure rather than stress. The ones who don’t tally who is doing the talking and who is doing the listening.
Here’s to the friends who believe you when you say you wish you could do x, but not this week, sorry not today, you can’t because something came up/you’re unable/things went haywire/it’s just one step too far on a day where there is nothing else to give. They know you’d really like to. They don’t make you feel bad. Even when you forgot their birthday because that week there were multiple appointments/illnesses/calls from the school/meltdowns.
Here’s to the friends that tell you when you need a break – the very remarkable few who force you to take the break, and the exceptional ones who make it possible for you to…wait for it…relax.
Here’s to the new friends – the ones you meet through the struggle. The ones who get it instinctively, who can laugh at a situation without mocking or deriding. The ones who can give a look or a nod that says more than a speech. The ones who have walked the walk and who can still help you find the joy on the days when it’s sometimes hard to find. The ones who help you look forward.
Here’s to the friends who can carry you, prop you up, propel you forward or force you to sit – whether they’re in front of you, on the phone, or at the other end of the computer screen.
Here’s to the friends – the ones who see your child.
The ones who see you.
The ones who are there.
Here’s to you all – here’s one big, huge, poorly expressed, dreadfully tired but deeply felt “thanks.”
You really have no idea how much your support means. It’s magic. It gives us what we need to gear up, buck up, stand tall and face this with hope.
And by doing that, you are most importantly giving our child the best gift possible. You are helping us to help him. You are fueling our resilience. You are breaking past our sense of isolation. You are giving us hope that the community exists.
It takes a village indeed.
Not just to raise a child, but to support a family.
And you are so very, very much appreciated.
So here’s to you, for those times when I might forget to say it.
P.S. – For readers who got this far and are thinking, well that’s nice for them but I don’t have any support, please know we once felt that way too. After our son’s diagnosis sucked the oxygen out of us for too long, we knew we couldn’t do this alone. We deliberately started to open up to others about our son’s condition and what this meant for our home life. People are good. When they started to understand more, things changed. It wasn’t easy, but we made a plan. We prioritised it. It takes a long while, but it helped.
Here’s a piece we wrote about it: Reaching Out After an FASD Diagnosis.
If you don’t have a local support group and might like to start one, contact the FASD UK Alliance (that’s where we got started): firstname.lastname@example.org
For online support – check out the FASD UK Alliance Facebook support group: FASDUK – involving nearly 1300 people just like you. (If you do click to join the group, please keep checking your ‘message request’ folder as an admin will contact you to confirm.)
If you need resources to show to family or friends, check out The National Organisation for Foetal Alcohol Syndrome-UK (NOFAS-UK).
If you need some tips on how to reach out to your family, check out The Auntie’s posts on this blog.
You are not alone.