So at this point Rhys is about 6 months old and If I could go back and to 2017 Rhiannon I'd hand her the biggest bottle of wine i could find and say 'buckle up baby, let the battle begin haha'.
There is no better word that best describes our journey the past 5 years than 'Battle'...
well maybe a few but then this blog would just be filled with a bunch of #'s and that's no fun to read lol. Anyway at about 7 months old we had another Plunket appointment and she agreed!! I can not tell you how happy this made me! Finally someone was listening, finally someone was willing to help, I wasn't crazy. Rhys was nearly 8 months old now, still sick often and sleeping lots but he was happy and rolling now. We were referred from Plunket to see a pediatrician and she agreed with me too! *Side note... She is the most amazing Pediatrician and we are so grateful and lucky to have her! This is when the ball began rolling.
The next few years are honestly a blur... Constant fighting and pushing for answers, repeating our concerns constantly, answering the same questions over and over! We were on a first name basis at the children's outpatients and our calendar was full of non stop appointments! There were Pediatrician appointments, Hospital stays, Occupational appointments, physiotherapist appointments, orthopedic appointments, urologist appointments, ortholab appointments (special equipment), Family start appointments, Pre surgery appointments, Blood tests, Neurologist appointments, Electro appointments speech therapists, play therapists, Cat scans, genetic tests, MRI scans, EEGs, ECGs, Eye tests, Hearing Tests, Reflex tests, Riding for the disabled, special gym classes, endless assessments... You name it and he probably had it.
But everything came back NEGATIVE! It was heartbreaking. We had spent nearly 2 years of his life at this point trying to understand what was going on and it felt like it was all for nothing. He has always been so resilient and never gives up and it makes us so bloody proud!!!. We made countless goals for him and he smashed every single one with some patients and some help. He was doing it just at his own pace and that was ok.
Rhys was delayed with all milestones, some more then others. He was sitting at 16 months and crawling just shy of his 2nd birthday, it may not have been in the worlds 'big book of what kids should do and when' timeframe but he was amazing and he was so happy!
Then things changed, he was getting so angry. He was frustrated because he couldn't get around like he wanted to. So we set a goal with his therapists, a goal that we would get him weight bearing on his own. This was the next step and would hopefully leading to walking. We tried different exercises and equipment to help strengthen his muscles and get them engaging and with every new thing it was like it came with this massive sense of hope. Not hope that it would help because we knew it would but with this false sense of hope that it would 'fix' everything. That it would take away my baby's frustrations and 'fix' his body so he was able to run and get into all the drawers and cupboards he's not supposed to, so he can run away when we are trying to change his nappy, you know 'normal' kid stuff.... I know that sounds silly because how would a standing frame or rolling him on a huge ball 'fix' everything but I think not knowing what was causing his delays meant that I could hope that he might just wake up and be 'fixed' because there was no explanation. It felt like we were failing him as parents because we didn't have a magic wand to make things easy, to help him, to protect him. He always made progress though and we were always so proud of him but if I'm being honest watching that piece of equipment leave the house because it had done its job always hurt, it was such a bitter sweet moment because yes he had out grown its use but it wasn't the magic key to take away his struggles..
Rhys is the most perfect human being we could have ever asked for! He is our beam of happiness that lights up any room he enters. He is cheeky and funny and we would not change a thing. Not even a hair on his head! (maybe his hair after he gives himself a haircut but you know what I mean hahaha). But with all that there is not a day that doesn't pass where I don't wish I could take his disability away. Not because it makes him any less or because of everything we have been through because as hard as its been we have all learnt so much about ourselves and each other but because every day we watch the pain, the tears, the struggle he goes through, no kid should have to go through all those tests, all the appointments, all the equipment, all those falls, it just doesn't seem fair!
After a long time and a world of effort and determination on Rhys' part at 2 years and 7 months he took his first steps unaided!!! He did it and WE WERE OVER THE MOON!
