The last couple of days have been put-everything-on-hold, stay-at-home-and-snuggle kind of days with Natty.
There's been a temperature, there's been vomit in our bed, ingrained in her PJs and even over daddy Downs Side Up's cashmere mix sweater (eugh). There's been a small croaky voice, sore throat and pallid brow, some floppy afternoon snoozes, but essentially she is OK.
She's still managed to make me laugh with her silly impersonations, she's eaten small amounts of toast or mashed potato, she asked for a 'dip, dip, dip egg' and her little giggle has filled the air. She's been well enough to request that awful purple dinosaur on the iPad and to read me a school book. In short, it's a little bug and her body is coping with it. And as awful as it is to see your child under the weather, I have enjoyed the closeness and the enforced pitstop it has given me.
All of a sudden I realised how grateful I was. How much stronger she has become. A couple of years ago a bug like this would have sent us to hospital with a closed throat, chest infection, pneumonia, croup, laryngitis, broncialitis, a febrile convulsion. I still worry. A lot. But since her heart operation she has been more resiliant. We are not on red alert the entire time.
|Natty after her heart surgery|
And then I look around me at my online friends, and I see many still living through that heightened state of alert, of worry, of uncertainty. Steph Nimmo into her 3rd week in hospital with Daisy, Renata moving bravely forward with Dom's recent issues, Baby Harry's family still waiting for him to smile after his stomach op. Friends Rachel and Vicky at home, watching over their vulnerable ones for the first sign of change that can signal a long period of illess.
And then, today, the desperately sad funeral for a tiny little angel with Down's Syndrome who didn't make it through pregnancy into the loving arms of her parents who we had got to know via Downs Side Up. She was so wanted and so adored, and she has changed the world for the better without even realising it, for she has changed opinions and brought family together in an unexpected way.
Baby Daisy, I have thought of you all day, a wild, windy passionate storm of a day. Tiles flew from my roof, greenhouse smashed, trees fell and cables were torn down and I imagined your parents hearts matched the rawness of the elements as they said their farewells to you. Rest in Peace little one.
And as I write, heavy-hearted, I have a tear in my eye, for I realise the fragility of life, of all our lives, but particularly the life of a child with Down's Syndrome. Pregnancy is a minefield, in more ways than one if you have a detectable extra chromosome. If you survive that, then you are one of only 6%.
Tonight I hugged our girls a little tighter.
Ahh it is so true. We are right now battling our way through a bug, hoping it won't be more. Ever vigilant, ever watchful, we monitor every cough.ReplyDelete
My thoughts are with the families. Xox
Yes, quite. Today we are off to the GP to get some unmadeup antib's just in case as it's the weekend. Don't want to get stuck in A&E. Hoping you all get better soon Jen xDelete
You brought a tear to my eye too. I didn't realise the chances of a baby with Down's surviving pregnancy was so small. Natty really is a little miracle and so glad she's getting over her bug xxxReplyDelete
I didn't spell it out, but termination rates are currently at 92% or there abouts. Thank you Kate, happy weekend xDelete
Oh gawd, Hayley... I was having a strong day today as well (life as we know it falling apart, but have come through the feeling sorry for myself phase into the right let's do battle phase)... might have to stop for a small snivel now xReplyDelete
Oh I'm sorry darling. Didn't mean to upset you xDelete
Came across your blog through mumsnet and knew I had to read as my aunt had Down's Syndrome and there is a little girl in my daughter's year at school with Down's. Hope Natty continues to go from strength to strength and that Baby Daisy's parents will be kind to themselves and do the best they can. So sad.ReplyDelete
Oh thank you so much for dropping by. Natty is a true ambassador, model and muse for my blog.Delete
Daisy's parent are finding it so terribly hard, but our collective love must be helping. I hope you will pop back for more of our tales x
As I read ur blog and hear the struggles of other parents... I can ONLY say THANK YOU GOD for giving me Anari... Yes she was born with an extra chromosome.... Yes I wad told that she wouldn't survive.... Yes I was told that she eould need heart surgery.... Yes I was told that she would feed... And the lust goes on.... However in the midst of EVERYTHING... I told the doctors that if they couldn't say anything positive... Then don't say anything at all.... Today Anari is a healthy two year old who goes in for her Wellness Checkup.... And Yes she didn't need the heart surgery.... Yes she fed.... Yes she walked at fifteen months.... Yes she I'd almost potty trained.... And Yes... I am THANKFUL for my daughter was has an extra chromosome....NOT DOWNS....ReplyDelete
Thank you Bernadette for your wonderful story. I wish I had been as brave as you to tell the dics to be more positive. Yes, we are blessed and lucky and honoured. Much love to you across the miles. Hayley xDelete
As i read your blog tonight.... I gave Thanks to God for giving me a daughter with an extra chromosome not Downs... I admit that Anari doctor told me that I was in denial.... But I never accepted the label of Downs.... I was told that she wouldn't survive....I was told that she would need heart surgery.... I was told that she wouldn't feed and the list goes on.... In response to everything I was told... I TOLD the doctors that if they couldn't say anything POSITIVE then DONT say anything at all... Today Anari is a healthy two year child that goes in for Wellness Checkup.... And YES she did survive....Yes she didn't need heart surgery....Yes she fed....Yes she walked at fifteen months....Yes she is going thru the terrible twos.... Yes she is potty training.... So YES.... I guess I am in denial.... I feel as if we as parents with children with extra chromosomes STOP believing in doctors do much and believe in Our children....then we would have a lot less restful nights....ReplyDelete