Today the sun is out and it is around 23°. Which makes it a wonderful day. It started out that way! Zoe woke up after a wonderful night sleep, happy and full of energy. I was talking to my sister Cara (in Australia) on the phone this morning and I was very happy to report that Zoe was having a 'Good day'.
I put her down for her afternoon nap and low and behold she wakes up with a limp and with spots all over her. The spots started appearing after her treatment at the end of June. Her Paediatrician said it was a virus (in the herpes family) and that we would see if it happens again.
He has been on holidays the last 2 treatment days and yes after each treatment the spots appear! So today I have taken photo's to show him on Tuesday and when we go to Paris on Wednesday I will also mention it to her Rheumatologist and see what he thinks.
I have read that spots can occur as a side effect of Actemra. Oh well my bubble has burst today I was hoping for a good day with out pain or at least a semi normal day. As the saying goes 'shit happens'.
I think that one of the worst things having to deal with a child with a chronic illness is the observation period. I say 'period' lightly because the word doesn't actually fit here. I thought this observation thing would be the first 3 months or so but then it became a daily thing and then a minute thing. I find myself watching her every movement, how she sits, stands, walks, runs, climbs. It gets tiring and takes its toll on me mentally and emotionally.
It is very difficult to look at her objectively without over analysing all the little movements that I know shouldn't be there! When I am in that mindset of 'Oh shit is her hip hurting her' or 'has it gone into her foot now'? to have friends and relatives, who do not see her on a daily basis say "but look at her she is playing just like the other kids, she is fine" I want to scream at them and say "for crying out loud how is it fine for a 2 year old to live in constant pain, to never know a day without pain, to the point where this IS her NORMAL so that she doesn't complain she just gets on with it". How the Hell is that fine? How is that OK?
With that said I notice that people can look at her and still put her in the "Normal" basket and not the "handicapped" basket ... because lets face it there are many baskets out there and people love to stereotype. Zoe looks normal because she has an 'invisible disease' but that doesn't mean she doesn't suffer every minute of every day. Medically she is classed as a physically handicapped child but she wont ever let that stop her from obtaining the same goals as Paul and Mia. I am sure she will find it difficult at times but ultimately she will achieve greater things because she will have to work harder. I truly believe that!
Yes she has come a long way from the little girl who would slide on her bum or do an army crawl if she needed to get somewhere, she is walking and running and able to climb things with a little more difficulty and a little slower than the other kids but she can do it and she is determined to do it with out help! She is an amazing little girl and Willy, Paul, Mia and I are so proud of her!
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