My boys turn 16 this year and recently I have been doing some reflecting on how they, and I have grown during this time. Today I wanted to share my thoughts on how I have managed to live, love, laugh and learn as I have come to terms with Harry’s disability. It’s not been easy and there are still moments and days when I doubt myself and question our lives, but those moments are few and far between now. As always, I hope that my musings here bring some comfort to just one parent who is still walking the earlier part of the path in their altered life.
You will google the shit out of every term you hear once you have a diagnosis. You will see descriptions of the worst-case scenarios and stories of heart-breaking prognosis. Read them but don’t let them become your story. The odds of winning the lottery are 45 million to one and yet we still buy a ticket because hope is stronger than fear. Don’t give in to the ‘what if this is us too’ gremlins.
Remember that you are a person too! Don’t give up on what made you YOU before this all landed at your feet. Make (don’t find) time for the little things that remind you that as well as being a mother, advocate, administrative whiz, fighter and advisor to medical professionals, you’re also you who still has the same interests and quirks as you always did. It’s so easy to lose them in amongst the filing and appointments.
Accept that friends will come and go. Some will stay, some will leave. As Whitney once said, “It’s not right, but its ok.” Trust me when I say, the tribe you need and will come to love may not be all of the people around you now but when you find them, they will be EPIC!
Let people help – don’t be too proud to accept support. Just because others have it worse doesn’t diminish your issues and needing help doesn’t make you weak. It makes you human. The times when we don’t ask for help are the times that crush us and then we are no use to anyone!
Love yourself first. Forgive yourself if that’s something you’re wrestling with (like I was for years!) You can’t go back in time and you can’t predict what might happen next year so accept that you are where you are and learn to love yourself here.
Love your life because of the differences not in spite of them – much easier said than done but when you can remember to, do so.
Try not to fight against the decisions you MUST make. Sending Harry to a special school physically and mentally broke me at the time, in the same way that I know moving him to assisted living will do but, in the end,, they are the best decisions for our children and we ONLY make them with love for them. I’m not going to say that its easy but the stronger the love, the deeper the pain and it does pass with time.
Find the humour. Don’t take yourself or your life too seriously. You will mess up. You will do and say things that make you cringe (like the time my husband told our babies paediatrician that my boys liked my breast milk because it was sweet – WTAF?? And no, he didn’t know that first hand!!) There will be moments that make your jaw drop like the time a guy checking passports in Spain said “Oooo your boy he winking” before he realised Harry had one eye and visibly died inside on the spot. Some moments will feel horrid at the time but will become stories you tell in the future. Try to find the humour. Life is serious enough as it is.
Find time to laugh, even if it’s just in WhatsApp groups with friends, at favourite comedians or movies or reading a funny chick flick. There is a wealth of evidence linking laughter to positive mental and physical outcomes and while our lives may have more challenges than many, that simply means we have to hunt the joy a little more purposefully.
The person you were before this journey will be levelled up magnificently through the trials, tribulations and trauma of what’s to come. In the same way that we tear muscles to build them, you make break at times to become something more. Remember it’s a process, that none of us are perfect and that our best is always good enough.
Keep on top of your admin, appointments and reports etc. Release your inner stationary geek and go mad on colour co-ordinated files and organisation systems. Admit it, that sounds soooo good doesn’t it! (Shout out to anyone who spent their teenage years in Partners Stationers!)
Never feel that you don’t have a place in medical discussions because you’re not a qualified professional. They might be the expert in their field, but YOU are the expert in your child. The best doctors will include you in decisions so that you’re never have to question them or their motivation but trust me when I say that some will see your child as an opportunity to learn themselves. Don’t ever be afraid to speak up or say no to what is being suggested. YOU have the final say.
The worst days are the best teachers – when your heart has stopped banging, when the anger (sometimes at others, often at ourselves) has subsided, when the exhaustion from yet another trial has passed, look for the things you did that you could have done better for next time. This isn’t a blame issue. This is a human issue. We are allowed to get it wrong – I often still do! But looking back and learning helps us to deal with it better next time because lets face it, there’s usually a next time. Learn from, don’t linger in those moments. Equally, when you manage a tricky situation like a bad ass, give yourself the credit you would give to a friend and remember it too.
There we have them, 13 ways to live love laugh and learn when your child has a disability. I am sure there are so many more, and I would LOVE it if you shared your own insights on the blog (rather than the social media site where you may be reading this) so that others can benefit from your wisdom too. If I have learnt anything from being a parent its that while it takes a village to raise a neurotypical child, it takes a city to raise a child like Harry, and that city BETTER have a toy shop!!!
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