MICRO MIRACLE FOUNDATION
So it all started the day we found out we were pregnant, the roller-coaster ride. Jaden was planned and so when we discovered that we were pregnant, we were so excited. My roller-coaster journey started at exactly 4 weeks being pregnant, I was very sick and by that I mean throwing up for almost 9 months…. Can you imagine?? It was awful. We went for our regular check- ups and scans once a month to the gynae and had all our tests done and Jaden was growing well, there were never any signs of anything being wrong. As new parents we were overjoyed and preparing for the arrival of our baby boy, daddy even made his cot from scratch which we are all very proud of. The day was scheduled for my C-section and so we went in and Jaden was born a healthy 3.76kg and with an apchar score of 9/10 then 10/10 within 2 minutes. I still remember being rolled out of theatre with this little human in my arms, it’s so overwhelming having this little bundle entrusted to you, with their life completely dependent on you …. so priceless.
I remember my mother was there as I was being rolled out and she said later on that she has never seen that expression on my face before ha-ha. There was never any sign of Cerebral palsy.
The first night in the hospital Jaden was in the nursery and I had fallen asleep feeling “high” and on asking the nurse possibly why they replied it was because I was given pethidine which by the way I eventually told the nurses to stop giving it to me because it made me feel so out of it, I hate that feeling of not being in control of things. I rang the bell when I woke because I was wondering where Jaden was and why nobody had brought him back to me, so one of the nurses came and told me that Jaden had gone a bit blue and that they had contacted ICU and they came to check and said that everything was fine they also called the pediatrician and she said that they didn’t need to put him on oxygen. This “blue incident” was also recorded on the nurse’s logs/reports. They never made a big deal about it at all. Why wouldn’t they have come to me and told me about what happened, why did I have to ring the bell and ask what is going on, not knowing how long I was out for (10mins or 1 hour) as I was unknowingly on pethidine and only then get told about this matter.
The service we got in hospital was not good at all and my husband even requested from the gynae that we leave earlier as he had to ask the nurses to SHOW him how to change and bath Jaden (not to just do it) and that he could take better care of us at home, not to mention a string of other service related matters we were not happy about. It was this poor service and attitude that lead us later to believe that it was possibly related to the “blue incident”. We felt that we needed to investigate this incident a bit more so we contacted lawyers and they needed all Jaden’s Dr Reports, scans etc. The lawyers went through all the documentation and concluded that the case wasn’t strong enough to prove negligence…you really need to have a very strong case to take a hospital and Dr’s on which was disappointing but at least we knew that we did try. Eyebrows continue to be raised as with every test nobody has managed to pinpoint the cause.
We all thought everything was fine and that we were going home with a healthy baby. The time went on and we were going for our regular check- ups at the pediatrician. It was only at 6 months old that the pediatrician got very concerned as Jaden wasn’t grabbing toys, his head control and body posture was poor and he had a squint. We as first time parents didn’t realize anything was wrong as we didn’t know what a baby is supposed to do at that age. The pediatrician then called us back later that afternoon and said that she wants to send Jaden for MRI brain scan and EEG. Umm Hold on…What is going on here??? That was very scary. The pediatrician was very supportive during this and wanted to find out what was going on. Needless to say we were absolutely terrified.
Seeing your tiny baby go into hospital and getting repetitively pricked as they try to find a vein on such a young baby so they could run blood tests, screaming his little lungs out is a day I won’t forget very easily. I remember standing in the hospital jumping up and down crying because I didn’t know what to do to help my boy. Seeing this tiny person being put under sedation so that they can do a MRI brain scan is just heartbreaking and not knowing what the outcome can be…is it a brain tumor, is it Cerebral palsy etc. is just so so scary. I wished that I could trade places with him and still do because I hate seeing him struggle. All I wanted to do was protect my son from this evil world and it just felt like this world was consuming him and there was nothing I could do to protect him. That’s the most terrifying feeling.
Jaden’s results came back and they couldn’t really pick up anything major on his brain scan just that is white matter (controls movement) in the brain is smaller than it should be and that the grey matter is fine (grey matter is your personality and intelligence). At this point you are probably got the same question in your head as we did…”WHAT does that mean for our son??”. It’s incredibly frustrating not knowing what caused this...was it the night in the hospital that he went a bit blue or did it happen in the womb but if it happened in the womb then why were his apchar scores so high. So many questions and no answers. The pediatrician then called us in to discuss the outcome and she then mentioned the dreaded word “Cerebral Palsy” to us. Now at that point in time we had no idea what that was. Like anyone you resort to wonderful Google to find out more and dam did we get the fright of our lives. Never Google! It always makes it sound so much worse and so incredibly scary. The neurologist came to see Jaden in the hospital while he was there for all his tests and she wasn’t sure yet if it was Cerebral palsy or developmental delay or maybe some sort of disease and she wanted to see him at 9 months old again to re-access him and so we waited.
We then took him at 9 months old and our fears were confirmed that Jaden had cerebral palsy. So much goes through your mind …how bad is it, how did this happen, will he be able to walk, will he be able to talk, will he be able to FEED HIMSELF, will we be able to interact with him mentally, was it me did I do something wrong while I was pregnant? I know I always tried to be healthy, and the list goes on and their answer simply is “only time will tell”. Do you know how many times I’ve heard that saying. So frustrating and scary. You then get told that you have to start physiotherapy, occupational therapy, speech therapy straight away…..WHAT?!!? I didn’t even know where to start and didn’t even know you got all these therapies for kids. This opened my eyes to a whole new world. This was going to be my new world. My husband and I came to the decision that it would be best for me to stop working and look after Jaden full time.
We took a leap of faith. We wanted to try give Jaden the best possible chance at life. Got right down to it and started with all his therapies. His therapies have been a tough journey for me. I say this because I’ve had to become my sons Physiotherapist, occupational therapist, speech therapist, dietician etc. at home, learning as much as I can from the wonderful therapists he has, which hasn’t been easy. It’s very stressful having to implement everything at home in his daily life. You get “homework” from each therapist and have to incorporate it all. I swear I can open up my own therapy Centre at home with all the equipment etc. I have seriously learnt so much and I am still learning as the earlier treated the better with these conditions. As parents you keep desperately searching for that therapy, pill, treatment that can maybe be the answer to your child’s diagnosis. The answer to help him and at the back of your mind hoping it will be the “cure”, the thing that will get him to sit or walk or talk. Coming to the realization that your child will always be different and have more challenges and be labeled “ special needs” is tough. Seeing your friends and family with their non-special needs children is difficult when your child gets excluded and cannot do what the other kids can.
Seeing your child wanting to play and explore and he cannot unless you physically help him and even so, we can only do so much on these jungle playgrounds that do not allow adults. At Wimpy they usually have a playground and Jaden kicks like crazy to get there and we can only go a little way in…we managed to put him in a tunnel and he was so happy to lie in the tube, looking at the colors and the kids laugh and play but is heartbreaking as we know he cannot enjoy as much as we would like him too.
We are incredibly grateful to have this amazing boy and have seen such worse cases of CP. Jaden has changed our lives with his awesome personality….we love him as he is and that has nothing to do with CP….CP is just part of his life that we desperately wish we could remove (God willing). When in this situation a parent becomes incredibly sensitive, we can get hurt by subtle comments that people do not even realize. One small example would be like congratulating us on being such great parents for not putting Jaden in a home!! – He is in a home AT home with us!, the thought of giving him to a place to look after him away from us would never of crossed our minds and hence thinking of it makes us want to literally throw up. Please note, we understand that some situations require this and we are not judging any family that has to go through this.
I feel so helpless sometimes, we try so hard to help Jaden in every way possible and we still haven’t seen any major milestones, don’t get me wrong we are very grateful for his progress thus far but he is almost 4 and still not fully sitting on his own or walking unless we hold him then he takes steps. With all the effort we put in you desperately want to see more results and you keep telling yourself that maybe when he reaches 2 or 3 or 4 or 5 that things will change and that he will start to sit fully unaided and maybe even be walking. You keep saying let’s give him a few more months and maybe he will be doing what he can’t do now. Not that it’s not possible, of course he can start sitting on his own but when or will he ever?? It’s a scary prospect that he might not be able to.
We are almost 4 years into this roller- coaster of a journey and you might be wondering how on earth do we cope? To be honest the only thing that sustains me is my relationship with God. He has carried me through every situation in my life and we believe that Jaden has a greater purpose for his life and that he will be a testimony to God’s grace. I will never stop believing that. We all get dealt different cards in life, nobody has an easy journey on this earth and this is our journey and we will keep fighting, keep believing, keep trusting, keep on having faith. Jaden situation has taken me on a completely different path in my life and there’s a reason for that. It has pushed me to trust in God more and rely on Him completely because ultimately this situation is out of our control. It has taught me patience…which I’m still learning and this is a very difficult one for me. It has showed me God’s grace through people, it has caused a hunger in me to seek for God, It has brought about new friendships and the journey is still young and I believe that there is still a lot more to come.
I would like to take a moment to tell you that writing this hasn’t been easy for me. I’m quiet an introvert when it comes to my emotions so opening up about my life and feelings isn’t an easy task at all which is another thing this journey has taught me to do is to open up and that its ok to do that and that its ok for things not to be perfect because it never will be anyway and its ok for people to know that your life isn’t perfect and that the struggles are real. I’ve always been the kind of person to put a facade up about my life with all my family problems I had growing up and now I have a situation with my son that is in the open for any stranger to start an emotional conversation with me as I can’t hide my sons condition from the world, I now have to embrace it and tackle it head on and open up and realize that life isn’t perfect and I can’t pretend that it is.
Thank you for taking the time to read through our journey thus far.
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