Conclusion: M.E.

The conclusion is clear. Our boy has been diagnosed with ME. He has symptoms from all over his body, pain in his muscles and bones, he has disturbed sleep and temperature fluctuations. Among other things. The doctor considers treatment that can ease some of this, but it is difficult to find treatment that will help him.

This week has been hectically filled by many emotions. Grief, anger, fear, panic…

Our sweet little boy. He is only 8 years old.

Foto: pixabay

Foto: pixabay

8 years old and just as curious and with an appetite for life as only children have.
Just as happy and satisfied by small pleasures, which only children can be.
Just as beautiful and innocent as any 8-year-old should be.

The problem is that something is different about him. Something is not as it should be.
Behind the happy and sparkling eyes, I see a tired and brave little boy. A boy who is also a bit unsure and afraid of what is happening to him. A boy who misses to run around like his friends without having to pay for it later.
A boy who is already afraid of being a burden to the others, because he cannot keep up with them. A boy who is afraid to be left behind by his friends.

I’m crying. Why?

I cannot bear to see him like this. I wish so much that I could promise it’ll soon be over.
Wish so hard to say that with a little rest and some medication, everything will be fine … but I do not dare. I dare not promise him that.

I say that this will pass and that we shall find ways together.
I promise to take care of him and help him along the road, comfort him and smile.
But I dare not promise that it will disappear.

I promise that we will do our best and that we should never lose hope.
I promise that we, together, will become stronger than the mountains.

Fortunately we have been adequately followed up so far, and we had a good experience at the hospital. This has been important in this process.

We must let all the doctor’s words sink in a bit, before we proceed further. Or really, I do. The boy actually handles it well. Children are easy that way. They live in the present.
I’m a little more ripped apart, but fortunately lion mums like us have an ability to glue ourselves together pretty fast. I’m on my way … one pace at the time.

Much has happened over the past week. Right now it’s just about getting a good team together for the boy. Everything is just confusing to us now. A thousand thoughts in my head need to be sorted, but I know I have strong moms covering my back. This means a lot!
Thank you for all the help and advice in the process we have been going through.

Thank you for listening!

By a New ME Mum

Norwegian original here

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Om ME-foreldrene

Bloggen ME-foreldrene drives av foreldre til barn og unge med ME. Vi samarbeider om å øke innsikt og forståelse for vår og våre barns situasjon. Støtter biomedisinsk ME-forskning. Du finner oss på facebook.com/ME-foreldrene og på Twitter som @MEforeldrene. Les mer under «Om oss» og «Hjem» (Sidene vil oppdateres fortløpende, da ME-mammaene som startet bloggen nylig har slått seg sammen med en gruppa ME-pappaer.)
Dette innlegget ble publisert i ME, Personal from parents of children with ME og merket med , , , , . Bokmerk permalenken.

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