Marc’s 15th Birthday: Our Adventure Continues


by Gemma

15 years now!  Every day with Marc is a triumph and a beautiful gift.

It has been a year since we wrote the post on how we went from fear to hope.  A year later our adventure fortunately continues.

A doctor told us “Your son has started the change.”  We were struck by fear — a teenager!  Hormonal changes, mood swings, and so many character changes!

Marc had a time in which he complained and we couldn’t find an answer to his discomfort.  Many times we believed these complaints were due to these changes.  We did thousands of tests and it was finally discovered that his hip was dislocated, his teeth were changing, and his bladder retained urine and did not work properly.  He had many reasons to complain!

Marc smiled when we hugged him, seeing that we understood his pain.

After we overcame this hurdle, Marc continued with his changes, becoming an adorable teenager; the hormones seemed not to annoy him so much.

We have seen how Marc’s needs are increasing.  This year he has changed schools; in his new school he receives daily therapy and medical follow-ups in his class.  Another change!  How did he face it?

His ability to adapt to changes is incredible; in two days he had all the professionals wrapped around his little finger.

He has enjoyed the summer, the mountains, the pool, and of course, one of his favorite hobbies, the “tapas at the beach bar!”

It has taught us that, contrary to what people say, life is not a struggle, life offers us small achievements and pleasures every day.  Our fight is against his disease.

That crying does not make you weaker, it only makes you more human, and that a hug and a smile can make you touch the sky.

Being able to stop, to think and feel all this makes us feel that perhaps our life is not normal, it is simply intense and extraordinary!

We can only thank Marc for being our teacher, for showing us every detail and with his gaze giving us strength and making us understand that together we are a team.

Together we will continue on this journey, and we have all of you who are reading this post to help and support each other.

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