One of things I’ve said many times, and I’ll say again, is that when Clara pulled through the dark stages I’d wonder what life would look like ahead of us. Would she be on TPN more or less than the many years they predicted? Would she be able to go to school? Walk? Talk?
As time went on, I’d still wonder the same. I know no-one can predict the future but when diagnosis (is that a plural?) are being thrown at you, it’s pretty hard to not sit an wonder.
We never had any concerns that Clara’s brain wasn’t functioning right. Even early on, all the correct signs were there, even as a young baby. I was happy with that. The bit I was struggling to visualise was if she would walk or talk.
Clara started confidently crawling the week before she turned 1, and confidently started walking the week before she turned 18 months. I know that’s “normal” by baby development stages, but since she turned 1 I found myself constantly analyzing if it would happen. I’d (most probably) driven my close friends mad observing how she wouldn’t bend her knees, or she’d walk stiffly, or she’d walk so well holding a hand but not at all on her own.
It’s difficult to ‘just give them time’ when your baby’s got such an extremely medical past, with so many medical eyes on her wondering if and when she’ll be affected by any of the white matter on her brain, the strong drugs given in NICU, or the amount of time spent laying down.
But she’s done it – she’s walking, confidently! So confidently in fact she’s desperate to run when she sees someone or something she loved, her little legs moving so fast and she’s not quite sure how to stop them.
So off she goes, walking between rooms, her new mini backpack on her back (empty of course, she just loves it), a big grin on her face knowing full well she’s achieved something mighty.
With regards to her talking, she’s chattering more than ever and picking up words when she chooses (this is Clara, remember). “No” has become “No way” and “Dada” is regularly “My dada”. She’s also in the last couple of days learnt a variation of her childminder’s name which she says with a big grin, she loves her so much (we do too!)
I’m now happier than ever to just sit back and wait. To watch, to smile, and to laugh with my own little miracle.
Life is good to us.
3 thoughts on “Thoughts at 18 months old”
Hii ,its really very nice of u, u shared your story. My situation is similar as yours, my newborn is now in hospital. Can u tell me did clara had any surgery to make intestine lengthy? My daughter’s now remaining intestine is 50 cm. How much was clara’s after dead bowels removed?
Hi, I’m so glad you found our story useful. I’m sorry to hear you’re on this journey too but hopefully you can see our short gut children can still live excellent lives. Clara’s had no surgery to lengthen her bowels, just time to adapt. Has your daughter got her full colon and ICV? Clara was left with around 25cm small bowel, no icv, and full colon.