Two for Joy*

Today, we celebrate two years of our beautiful daughter Marigold. Two absolutely amazing years filled with joy. Two years also full of unexpected challenges due to her unique genetic condition, 3q11 trisomy mosaicism.

One of the hardest things to cope with over this past year has been Marigold’s ongoing respiratory illnesses. At the end of 2014, we seemed to fall into a predictable pattern which ran as follows:

  • Week 1: Marigold starts to get ill. Becomes listless and vacant. Doesn’t want food. Wakes at night a lot.
  • Week 2: Full blown atomic illness. Violent coughing episodes resulting in huge sick ups; temperatures; full hunger strike; more sick ups; awake all night (and I mean, ALL NIGHT.) Trip to the emergency doctors to beg for antibiotics. Commence course of Coamoxyclav.
  • Week 3: Revert to stage one weaning for the 100th time as will now only eat purees and drink milk. Still coughing and waking up in night. Exhausted from illness. Development gone out the window. Looks fed up and miserable.
  • Week 4: Perks up. Gradually starts to eat a bit more, coughing eases up.
  • Week 5: On form happy, eating a bit better, sleeping better, doing lots of new stuff developmentally. Parents breathe sigh of relief.
  • Week 6: Starts to get ill, doesn’t want food, waking up at night etc. We hear that first cough. Parents’  hearts sink. Prepare to start cycle of misery all over again.

Repeat for entire year.

This is not an exaggeration. Last year we would maybe enjoy one or two weeks of Marigold at her peak before the illness cycle would start all over again.

I am really not bothered about Marigold’s developmental delay. She will get there in her own time. But the ongoing sickness has been heartbreaking as it made her so miserable, tired and weak. She would often lose a lot of weight. This of course, affects development even further. It also puts an incredible strain on family life as you try and function on minimal amounts of sleep and constantly dread hearing that first cough.

Towards the end of last year, we finally met with an amazing respiratory consultant. He explained that low tone children like Marigold have trouble clearing secretions when they get ill. So when she was going down with a shitty toddler cold (which as parent know, is a constant occurrence at this age) secretions were just pooling and becoming infected leading to her epic illnesses. We were prescribed prophylactic antibiotics, Azithromycin, which she now takes on a weekly basis and acts as both an antibiotic to prevent infection and an anti-inflammatory to stop the production of secretions.

Now, I had written quite a smug paragraph here about how it was nearly two months on and we have only had one bout of fairly bad illness (conveniently the day we were due to travel to France resulting in a cancelled New Year’s trip), but otherwise we have seen a much improved Marigold. However, just the mere act of writing this naturally invoked the evil eye and the eve of her birthday was spent coughing in our bed! With a trip to France planned next weekend, we are praying that the Azithromycin does its stuff and stops this illness from going full blown ‘atomic.’ We will see over the next few days. If it does, that will be two bouts of illness in two months, so I guess that is an improvement on the three weekly cycle of last year.

But overall, Marigold seems brighter, hungrier, happier, stronger and is making great progress all the time. She is behind, two years old and not yet walking or talking, but she is trying so hard. She is such a happy, good natured, loving little girl we can’t help but feel optimistic. And we are all a lot less tired. (Please note I wrote this before the coughing last night. Today I am very tired again.)

So two years of joy. Marigold has taught us so much in this time. She has made us more inclusive, more caring about those who may not be in mainstream society, helped us see beyond people’s differences to the unique individual inside. She has taught us perspective and made us strong – even though at times it has not felt like that. Through Marigold we have met some incredible people who I am proud to think of as friends. She has made us realise that life is not about success and achievement, but just about being happy. She has made us experts on genetics and child development – small win for me was when a medical professional thought we were medical professionals as were bleating on so much. Her relationship with her brother is a constant joy to observe. She has taught him how to be patient and gentle. They are each other’s best friends and I hope that will always continue.

She has taught us acceptance, strength and to always strive for happiness.

That quite some achievement for a little lady of just two years old.

So Happy 2nd Birthday to our wonderful little girl. This has been an unexpected journey but one full of learnings and love. It is a privilege and an honour to be your parents and to watch you grow in your own unique way.

*I dedicate this title to other believers in magpie superstition!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

6 thoughts on “Two for Joy*

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