By SWAN UK member and blogger - giraffesdodance.wordpress.com
What is acceptance?
How did I finally come to this destination?
Can I stay forever?
All good questions, I’ve asked myself them a lot recently. I’m not sure I have the answers or even if I want them to be honest.
For now I seem to have reached a state of acceptance for all that life has medically and socially thrown at us. All four of us “medically unique” are doing well. Our family, of five, is happy and we’re marching on, taking what life throws at us together.
The biggest battle for me, on the acceptance front, is we still don’t know all the answers. We are still largely undiagnosed. For now that doesn’t matter, for now actually I’m ok with it. That’s life.
We have pieces of the puzzle, almost complete areas of the picture but we can’t put it all together. There’s the rainbow of connective tissue disorder; probably Elhers-Danlos. There’s the sun shining with the unique view brought by the boys Asperger’s. But the rain of the muscular element is not known; it just keeps raining and making us wet. The connecting pieces are missing.
There are some distinct areas to our puzzle but no complete picture. Elliot’s eight now; since he was born and I realised something was wrong and I had a puzzle to make, I’ve been trying to piece it together.
For a long time I struggled, sometimes on my own, not helped by the fog of post natal depression; twice. I knew I had a puzzle to make but no-one could help me or our family. Many nights I lay awake long after the house was quiet, my mind unable to sleep. I couldn’t switch off.
GPs thought I was neurotic, “Just let him catch up” they said. When it became obvious he wouldn’t the fight to help him began; my puzzle needed making.
The paediatrician, who didn’t really know: “let’s try this and that”, forwards, backwards and a long way out to sea. Then back we waded to try again with something new.
The physiotherapist, who got Elliot to weight bare and walk in his unique way:” That’s it”, they thought. But time again showed it wasn’t. He couldn’t keep up and he was tired; so tired. Everything he did was still behind; the years slid by and still no answers came.
Professionals came, professionals tried and professionals discharged.” We don’t know”, was the answers that always followed. After a clue from a fellow SWAN (Syndromes Without a Name) mum I went to the GP and tried again. She suggested I go armed with facts and I did. Genetics this time.
We all trooped in together, by then we were five. After an hour of her time she had an idea. Elhers Danlos she suggested. The diagnosis wasn’t just for Elliot it was for me, Oliver and Emily too. It was like a lightbulb moment. So much was answered. Maybe the puzzle was made?
The tests showed they were on the right lines. Bits of my puzzle fell into place. The partial diagnosis helped us get some of the other services we needed. A lot improved from there.
The best of the bunch, by far, was a new paediatrician. He listened, he was interested, he cared. He didn’t pretend to have the answers but he was prepared to keep pushing. Nearly five years on we still see him and have so much to be grateful to him for. He’s still pushing for more in every way for us; for our family.
You see the years have marched on. Elliot’s nearly 9; the journeys been long and not what we’d planned. I miss the hopes at times, the,’ what could have been’. There have been roller-coaster rides with all of the children. So far up we thought we could touch the sky. So low I thought I wanted to give in. So many of the niggling worries have been proved right, but I’m stronger now; my puzzle is clearer.
Why I’m stronger I just don’t know. I guess if your plans and your destination are changed for long enough you learn to go with the flow. I joined SWAN and found lots of other friends to join with on our journey together.
So for now we are undiagnosed and happy and I have accepted that. I’m happy we may never know; I rarely stay awake at night. We’ll still go on with trying to find out why. I’d still like to finish my puzzle, but for now I’ll look at the beauty of the unconnected pieces.