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8 Things I've Learned From Life With an Undiagnosed Son

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The 4th Undiagnosed Children’s Day takes place on Friday, April 29. 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 5 years old, my son Gabriel still can’t walk or talk and has trouble 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 can feel unattainable.

Here are eight things I’ve learnt in the past few years:

1. You are on an emotional rollercoaster.

There are days when this can be 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. It tends to be your child’s current state of health that dictates this. I always find that if Gabe is well, feeding OK 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 a bump — chest infection or a 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 can feel like a form of torture. Hopefully you have a good team that will do this testing process swiftly and it is over before your child is 2 years old. Being undiagnosed having exhausted testing is living in limbo — but it is a lot
sweeter a place than 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 realized 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 in a similar situation to yours. You need people to share humor 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.

In the early days, you are likely in a state of painful grief over the life you expected for your child. You may want to lash out and hurt everyone around you. Frustration that no one understands can 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 think a member of your team is being obstructive — swap them. Go to a different hospital. We travel to see some of Gabe’s team and I’ve often found 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 can be 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 10 years to eat with a fork or take a step. A new medicine could be around the corner that improves the worst symptom and changes their quality of life. Access to better therapists might bring different results. Keep on hoping and dreaming. Who actually knows!

My 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.

young boy sitting on the floor in superhero cape smiling
Alison’s son, Gabe.

Follow this journey on Complicated Gorgeousness.

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Originally published: April 29, 2016
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