I was told that the appointments would die down, we would accept what happened a little better and we’d have time to digest what had happened before we were plunged into this crazy world of cerebral palsy and tube feeding. The intensity of raw emotion is something that I don’t think many people will experience in their lifetime.
This time last year I was full term pregnant and desperately hoping for my little bundle of joy to arrive soon.
You have these idyllic images in your head of baking together, painting together, going on walks, those first words, those first steps etc. I became so impatient in my pregnancy as the discomfort grew. I had a sweep and was due another but my waters broke. Next thing the contractions started and we rushed to the local hospital.
The heartbeat slowed down and in the end I was rushed for an emergency c-section. It took 8 minutes to bring our little girl back to life and then she was rushed to the city hospital for cooling treatment as she had sustained a severe brain injury. We were told she may not make it through the night and that if she did she would be a “total vegetable”.
We never gave up hope, not at all. As the weeks went by our little girl grew stronger. By this point we were tube feeding experts and were learning as much as we could to facilitate getting her home faster. Eventually she was home with us and we were still in a deep state of trauma from what had happened. The trauma of the past, the difficult present, and the uncertain future.
Every professional through our door was a well meaning but painful reminder of the severity of the situation. We learned how to put on brave faces and how to get by on almost no sleep. As time went on, surgeries happened, hundreds of hospital appointments and home visits the routine started to set. You become sort of numb to it all but every now and then something will just rise on up out of nowhere and smack you in the face and it’s “Boom. Feeding issues. Boom. Mobility issues. Boom. Money issues” etc.
I genuinely think the first year will indeed be our hardest. The first Birthday will be full of joy, gratitude, grief, anxiety, hope, anger, celebration, sadness and so much more.
A nurse said to us at the start there will be good days and bad days. I can see that today is a bad day, but just wait for tomorrow and it’ll be okay.
Our appointments are actually on the increase as we are planning to learn sign language, attend messy play to help with feeding issues, constant dietitian appointments for g-tube related feeding issues, physio (soon to be group physio) and various other things.
I am learning to enjoy the appointments now and to view them as giving our daughter the best opportunity possible to achieve her full potential. I love our specialists, they are all genuinely dedicated to helping us and can all see how full of promise our bright little girl is. For anyone earlier into the journey than myself – A few things I wish I had known back start.
Your baby is so tiny right now... they don’t stay that way long… whilst this is a difficult time do enjoy every nice part of this that you possibly can. Accept help – you are not weak for needing help. If you are struggling mentally then go to a doctor – you are not weak… your brain might not be releasing the chemicals you need to cope with this very unexpected and trying situation. Stay strong, rest as much as you can (easier said than done).
A diagnosis does not define your child, your child’s “limitations” are merely challenges, it does not reflect your child’s amazing personality, eagerness to learn, and cute traits.
For anyone further into the journey than us – continue being you, and being a huge inspiration for us at the start of this.
Happy Birthday to our amazing Amy-Rose. You have been through more in your first 12 months than most of us have in our entire lives and you are our world. I’d like to take this opportunity to send out a massive thank you to absolutely everyone who has supported us in this last year.
To friends and family that have been there for the tears, but also been there for the amazing parts.