The 4th Undiagnosed Children's Awareness Day takes place on Friday 29 April. The aim is to raise awareness of undiagnosed genetic conditions and SWAN UK (syndromes without a name), the charity that offers support and information to families of children affected by these conditions.
At five years old, my son Gabriel still can't walk or talk and struggles with feeding. Yet I have no idea why. Despite a raft of testing taking place over many years he remains undiagnosed.
As a family we have come a long way. For families starting this journey, getting to a place of acceptance and a semblance of normality feels unattainable.
Here are ten things I've learnt in the past few years:
1. You are on an emotional rollercoaster
There are days when this is so painful you'll want to curl into a ball and shut the door on the world. Other days you'll think you are the luckiest person alive. Unfortunately it tends to be your child's current state of health that dictates this. I always find that if Gabe is well, feeding okay and making progress then I am on top of the world. And his health has settled so much now he is older. It doesn't take much to knock you down with a bump - chest infection, horrible negative medical appointment - but we get back up. We are all good at doing that. If you can't please don't be afraid to seek out some professional help.
2. Testing is hell but there is light at the end of the tunnel
It is hard to describe the gut aching feeling of repeatedly holding down your child for blood tests, sedating them for scans and letting doctors poke, prod and pull them on a weekly basis. Waiting on test results after test results is like sustained water torture. You come up for breath only to be plunged under again. Hopefully you have a good team that will do this testing process swiftly and it is over before your child is two years old. Being undiagnosed having exhausted testing is living in limbo - but it is a lot sweeter place then testing hell and the cake goes down better without that lump in your throat.
3. Specialist schools are lovely sunny places
This one surprised me. When Gabe was little and I'd see the specialist school buses picking up children around town it used to break my heart in two. A doctor had already told us not to expect a mainstream education for him and I couldn't bear it. But as we started creeping through the system and looked around some schools we realised this was a good move. His school is amazing, we are part of their community now and he is flourishing there.
4. You need friends in the same boat
This is why SWAN UK is so important. With a growing membership, there will be people just like you who have children similar to yours. You need people to share gallows humour with - who get it and understand why one minute you are singing the blues and the next thanking the Gods. I go for drinks with these new friends and it is so good for the soul to drop the mask and be the "you" that you have now become.
5. Don't give up on old friends because they don't understand
If it is early days you are in a state of painful grief for the child you expected. You'll want to lash out and hurt everyone around you. Frustration that no one understands will make you push people away. Pause. Give them a chance. People just don't know what to do and say. When you feel better you'll want that friend who always talks about shoes as you'll feel able to talk about the importance of a good shoe again. You will. Or dresses, politics, football, books, reality TV - whatever floats your boat. Don't let go of the old versions of yourself - let your friends remind you of who you are when you are ready. True friends will wait.
6. Take control of your medical team
You can. Of course you can. If you hate one of your team, think they are being obstructive - swap them. Go to a different hospital. We travel to see some of Gabe's team and you'll often find the real gems don't work in the big hospitals. Experienced experts of note matter not a jot when you have a child sailing in unchartered waters. It is better to have one willing to go the extra mile and think outside the box.
7. Be selfish - it's crucial
This is so important. I know your child might be very ill and needs you. But he needs you to be mentally fit more. Try and do things for you. Please. Something you love. Even if it is only every now and again.
8. Never give up on hope
Just don't. These kids are writing their own books and who cares if it takes them ten years to eat with a fork or take a step. A new medicine could be around the corner that improves that worst symptom and changes their quality of life. Access to better therapists might bring different results. Keep on hoping and dreaming. Who actually knows!
Last bit of advice is go now (go) and give that child a squeeze. Because they are yours - you made them and they are uniquely fabulous. We might be living a life we never expected but it is our life. The only one we have. Let's celebrate on this special day for our children. And remember this - together we are stronger.
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