Ten things I’ve learnt about life with an undiagnosed child

One year ago I started this blog with a post called That boy of mine. It was written to celebrate Undiagnosed Children’s Day. Tomorrow is the second awareness day and I am delighted I get to share my blog birthday with such an important occasion. 

Life with a child with an undiagnosed condition means you basically live under a cloud. Some days the sun shines through and other days this cloud is dark, heavy and eclipses everything.

I have learnt such a lot in the past 12 months and 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.

Gabriel is now three and a half and 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. Special schools are lovely sunny places

This one surprised me. When Gabe was little and I’d see the special 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 statementing 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 giving glory be to the father. 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, cast of Hollyoaks – 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. Some people will always be bigoted and ignorant

I knew my emotional mindset was getting more controlled when I sat politely and listened to a medical journalist at an obesity press conference dole out uninformed opinions on people with genetic conditions. “If we lived in the animal kingdom, survival of the fittest would mean that these weaker animals would just be eaten then genetic defects would eventually be wiped out.” Good to know she is educating the masses. What can you do? Same as people who use words like “mong” and “retard” in chat because they are too lazy to find a different word. I am sure I’ve used them as a teenager trying to be funny unaware of how hurtful they can be. Let it go. Shrug it off. There are bigger battles to fight.

7. 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.

8. 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. One of my most favourite people I have met on this journey is a mum whose child can stop breathing for no reason at any time. For a long time she lived like a hermit on a knife’s edge. Now she accesses a hospice and has time out from the high intensity living to spend time with her husband and other son. She’ll be the first to tell you this has saved her. Try and do things for yourself. Please. Something you love. Every now and again. Even if it is train spotting or teapot collecting.

9. 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!!

10. 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.

Happy Undiagnosed Children’s Day!

 

9 Comments on Ten things I’ve learnt about life with an undiagnosed child

  1. Mumbling Wildly
    April 24, 2014 at 1:34 pm (5 years ago)

    Brilliantly sane & honest post, & exactly the kind of thing I needed to read in those early days when life was filled with tests & uncertainty.

    Happy blogday to a truly wonderful blog! xx

    Reply
  2. Jenny phung
    April 24, 2014 at 8:58 pm (5 years ago)

    Written perfectly. Thank you Alison.

    Reply
  3. Judith Hurrell
    April 25, 2014 at 2:16 pm (5 years ago)

    Great advice for those going through what must be such anxious uncertainty x

    Reply
  4. Alison Bloomer
    April 29, 2014 at 8:09 am (5 years ago)

    Thank you – hope it helps someone somewhere – and I am not just suggesting you go and get drunk with your friends (but I am really!) x

    Reply
  5. Sabrina Craig
    October 28, 2014 at 7:41 pm (4 years ago)

    It’s rather difficult to live with uncertainties, especially when it comes to your child's health. You could get blind-sided as to what the exact condition your child was suffering from. Hopefully, you were able to identify the specific condition Gabe has, so that you could seek the right treatment he needs.

    Sabrina Craig @ Medical Attorney

    Reply
  6. Danny Diaz
    April 10, 2015 at 7:22 pm (4 years ago)

    This comment has been removed by the author.

    Reply

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