Deep, deep breaths

This is the first in a series of blog posts to mark the fourth Undiagnosed Children’s Awareness Day, which takes place on  Friday 29th April.  Each one will highlight different aspects of raising a child with complex medical needs of unknown cause – the good, the bad and the blooming lovely.

Dear me from four years ago

I stumbled across the photo below from Christmas morning 2011. One year after Gabriel was born – his second Christmas. Two weeks after you nearly lost him for the second time when his lung collapsed. And four weeks from when he was placed on a life support machine as his heart was about to give up.

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A typical Christmas morning scene some might think. You look worn out but an observer could put that down to being up early with excited little people.

I remember this well. You were only half watching the children ripping open their presents – both evidently delighted with their carefully selected gifts. You had spent a bit more on them that year than you would have normally. Guilt. For not being around – either emotionally or physically.

I remember you were shattered. Awake all night fretting and watching the clock. Willing it to be Christmas morning. Calculating if you could take the chance and let the children open their presents first before you called an ambulance.

Praying that his little body would be strong enough to bounce back. Again.

The respiratory physiotherapy that they had taught you in hospital had cleared his lungs in the small hours, but his breathing was still laboured, he wasn’t feeding and you could barely keep him awake.

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He had been desperately ill – from a simple RSV virus  –  his tiny body unable to cope due to medical malnourishment from an as yet undiagnosed milk protein and gluten allergy.

I can see the worry on your face but I also know you were mad. Pissed off that you couldn’t just have this one normal day. The unfairness making you want to weep long self-pitying wails on the one day when everyone is expected to ooze merriment and joy.

I want to tell you that it will be okay. I want to jump in the picture and give you a hug. I want to insist that you enjoy your day with the little ones. I want to let you know that this is as bad as it will get. This is rock bottom.

I want to tell you to take deep, deep breaths.

These will save you time and time again in the next four years. They will steady you when you feel like you are sinking. They will give much-needed calm when you feel like screaming. They will give precious seconds so you don’t give up on hope – to halt the feelings of suffocation and desolation.

They will also help you to capture and savor some of the most stunning moments of your life. Moments you can’t even imagine as you hold him tight, sick with fear and worry.

Take deep, deep breaths.

The day when you sit alone in that miserable tent on that cold Irish beach littered with jellyfish. When the rest of your party goes for a long walk leaving you with a wailing hungry child who refuses to feed. When you look at the bleak angry sea and wonder for the briefest of seconds what it would be like to walk into the bitter waves and never come back.

Deep, deep breaths.”

When you spend hours each evening putting symptoms into Google and  “researching” hundreds of potential syndromes with outcomes that give you nightmares. When you share your fears and findings with the medics and witness again the same tight little smile. When the professionals make you feel foolish and finicky for attempting to find out what is making your child so ill.

Deep, deep breaths.”

When you start tube feeding and the alarm beeps for the eighth time that night. When that tell-tale cough signals that he has once again expelled all he has consumed. When you kneel at the end of his cot and rage at the gods wondering how he could possibly survive. When it feels they are merely prolonging the inevitable.

Deep, deep breaths.”

When you sit, headphones on, as the machine gun fire of the MRI scanner takes pictures of your baby’s brain. When you try to watch the scanners’ faces to see if the results are bad. When you phone and beg your neurologist’s secretary to just tell you the results. When you cry that you can’t live one more second without knowing if he has the horrific life-limiting leukodystrophy they suspect.

Deep, deep breaths.”

When you lie awake in the dead of the night brooding on all the things that you haven’t done. When you start to panic at 3am about work and money. When you wonder about that “other” life – the one you would have had if genetic conditions hadn’t touched your world.

Deep, deep breaths.”

When you leave him for the first time at his new special school. When you pretend not to notice all the wheelchairs and standing frames lining the corridors. When the communication day book comes home and they tell you that he would not eat that day. That he did not settle.

Deep, deep breaths.”

When he wakes up just as you lay your head on the pillow and refuses to settle until it is nearly time to get up. When you have to sit downstairs for hours huddled under a duvet as he is wide awake and his siblings need sleep for school. When he lies beside you grinding his teeth and whimpering from some pain that you can only guess at.

Deep, deep breaths.”

When he starts to sit all on his own and you realise that he is actually playing with the toys placed before him. When he falls over in excitement at the sight of Iggle Piggle. When he roars with laughter as his swing soars in the air and you think your heart will explode with happiness.

Deep, deep breaths.”

When he seemingly masters bum shuffling overnight and you turn around to find him unexpectedly behind you in the kitchen for the first time. When you don’t know whether to laugh or cry so you scoop him up and swing him around and around doing both at the same time.

Deep, deep breaths.”

When he learns to sign for “finished” and “yes”. When he shouts “Al” as he watches you climb up the stairs. When he taps his hand to his chest – his sign for “I love you” and lays his head on your shoulder for wonderful lingering minutes like he never wants to let go.

Deep, deep breaths.”

When you sit in the audience for his first nativity with proud tears streaming down your face. When he gets the headteacher’s termly award for vocalising and his music therapist reports that “He sang. He sang today. It was glorious.”

Deep, deep breaths.”

When he decides it is time to stand. When all he wants to do is practice his steps. When he gets too carried away and attempts to try the running he has witnessed for many years with bemusement. When even his 87-year-old Granny takes a turn stepping him around and around the living room a side-splitting grin on her face.

Deep, deep breaths.”

When you ask yourself whether it will be okay? Whether you can do this? Are you good enough for him? When you wonder if a life like this can be fulfilling and happy and all the dreams that you once dreamt can still come true?

Deep, deep breaths.

Because it mostly will be, yes you can, you are and it already is.

walking

The aim of Undiagnosed Children’s Day 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. The theme this year is The Big Ambition and the aim is that all families affected by a syndrome without a name get the support they need, when they need it, regardless of whether their child has a diagnosis or not.

For more information go to http://undiagnosed.org.uk/undiagnosed-childrens-day-2016

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15 Comments on Deep, deep breaths

  1. lauranne
    April 6, 2016 at 9:19 am (1 year ago)

    And now I am in tears!

    You are so amazingly strong I have no idea how you have faced all you have. I mean I sort of do, you are a fighter and have no choice but to go on fighting I mean what’s the option?

    I just wanted to (badly) say how much this post touched me and how awesome, strong and brave I think you are
    lauranne recently posted…Can we ever own our own Social Media profiles?My Profile

    Reply
    • Alison
      April 10, 2016 at 10:02 am (1 year ago)

      Oh bless you Lauranne – it is all just strangely normal now – so good to look back and see how far he (and us) have come. Thanks for your lovely comment x

      Reply
  2. laura dove
    April 6, 2016 at 1:32 pm (1 year ago)

    Oh this really moved me, so emotional!! What a gorgeous boy you have, and what a proud, brave mummy you are. #sharewithme
    laura dove recently posted…Why do I blog?My Profile

    Reply
    • Alison
      April 10, 2016 at 10:01 am (1 year ago)

      Thank you Laura xx

      Reply
  3. Vicki
    April 6, 2016 at 5:30 pm (1 year ago)

    What an amazing Mum, what a lucky little boy you have. I read your post with tears, and a huge ache in my heart. I feel all of those feelings too, my little man had difficulties too and after a third round of genetic testing we are still non the wiser. We face difficulties but no on the same level, I admire your openess honesty determination and courage. Thank you for sharing your thoughts and making me feel that I am not on my own. Kindest wishes

    Reply
    • Alison
      April 10, 2016 at 10:01 am (1 year ago)

      Good luck Vicki on your journey and I hope you get the answers you need. Much love xx

      Reply
  4. Jenny
    April 6, 2016 at 5:39 pm (1 year ago)

    I can’t begin to imagine what it must be like then and now and you are so strong and brave for sharing your touching story and helping raise awareness for such a great campaign in the UK. Thanks so much for sharing your journey and what you have experience to maybe help others too on #ShareWithMe
    Jenny recently posted…Share With Me Blog Hop #14My Profile

    Reply
    • Alison
      April 10, 2016 at 10:00 am (1 year ago)

      Thanks Jenny for hosting and lovely comment x

      Reply
  5. Right Royal Mother
    April 9, 2016 at 10:44 am (1 year ago)

    Goodness me. This has stopped me in my tracks. You are amazingly strong. I have some friends whose son has an undiagnosed genetic condition and I have no idea how they – or you – face it all. I think you are amazing – and thank you for sharing an awesom campaign. #coolmumclub

    Reply
    • Alison
      April 10, 2016 at 10:00 am (1 year ago)

      Thank you. You face it because they are your babies – you’d be the same. Hope your friend and son are doing well xxx

      Reply
  6. Lynn Pringle
    April 9, 2016 at 9:45 pm (1 year ago)

    Reading this has brought the tears, my grandson born Oct last year has we are told an undiagnosed syndrome. Its heartbreaking. At present hes in hospital 9 weeks hes been in. He cant keep the milk down and they are trying a tube. God knows when he will get home.

    Reply
    • Alison
      April 10, 2016 at 9:59 am (1 year ago)

      Lynn, I am so sorry to hear this. It is an extremely frightening time. I hope the tube makes him stronger and he starts to surprise you all xxx

      Reply
  7. Savannah
    April 10, 2016 at 10:38 am (1 year ago)

    This truly is wonderful. I cannot imagine the strength it took to learn that all it takes is deep, deep breaths. I am so happy that you are willing to share your story for all the other parents who may have similar struggles <3 #coolmumclub

    Reply
  8. Talya
    April 11, 2016 at 11:25 am (1 year ago)

    Wow this is such a moving post darling. Skin tingling and no other words apart from that. Thanks for #coolmumclub lovely x

    Reply

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