Saturday, 4 August 2012
( Continued from my post titled :2007, the special year that my daughter and I was born)
We were still in hospital so I couldn’t check the internet to confirm whatever I was hearing but it was just so isolating really despite that we were introduced to lots of therapist like the occupational therapist, physios , speech and lauguage therapist and dr Liz Marder who ran clinics in Nottingham for families with DS . I remember the first day we met Liz Marder, I can remember prior to the meeting, me just being so confused as to not knowing what to expect of the meeting. For my husband and I , all we wanted was for joy to get well and be home with us.
When I met Dr Liz she informed about me about the level of support available for kids/families with DS. I was particularly happy to know that there were parents groups at the Cdc where families of children with DS meet up to interact and learn from each other. She also came with lots of books about DS which I still have till today.well, I kind of have a library on DS. You can call me an expert in DS really(laughs). I remember a funny scenario after meeting the doctor when my hubby was like well we don’t want to part of any strange club. It was all so new and definitely welcome to Holland make a lot of sense. I resolved to allowing myself become a student once again and to allow Joy be the headteacher because I just wanted to learn from her and perhaps get to know her better.
I remember that whenever that doctors are on their ward rounds, I would listen attentively to the things they said about Joy because asides the fact that I was curious. At the time, I felt that well I could find a cure for this. The oxygen was one of the hardest things to accept and we had to adjust to getting used to seeing her strapped up with wires and monitors. After fours weeks of more test and fantastic medical care, joy was allowed home. I remember the day we had a taste of going home, we were given a room where we were told to ROOM-IN with joy so joy was in a proper cot right beside us, just the three of us, me , my hubby and joy. Wow, that was one of the best feeling ever. Though we were still in hospital , we started experiencing the joys of parenting that we longed for.
My hubby and I were so joyous that we bought balloons and dressed up like we were going to a party on the day we brought joy home. Though it was quiet because we didn't have friends and family there, we were happy to be free to take our lovely baby home.
i surprised even myself about how fast I took things in, like learning how to tube feed, learning how administer joy’s oxygen, chest physios, monitoring saturation and all. I was even given a first aid training which was part of the requirements of going home, I was taught how to resuscitate a baby if the baby stops breathing.
Maybe it was the amount of responsibility I was given at the time that helped to me to grow up really rapidly. I had moved from the young girl who cries at anything upsetting like I could watch a movie and just cry and cry imaging why something wrong had happened to someone lol. I had moved from someone who loved perfection 100% into a full grown woman who was willing to love unconditionally. Joy definitely is a gift from God, I think caring for her allowed me to move on from mourning my mother’s death because when you have a little fragile baby in your arms all you want to do is to protect that baby. She had a really low muscle tone at birth so even carrying her took a lot of care and attention to detail. How the transformation happened to me in terms of how strong I became is really amazing to me myself. Suddenly, I wanted to learn more and more about downs syndrome. Joy’s breathing was one of the issues that really made me toughen up really quickly. I felt so responsible for her.
I guess this in a way unconsionsly helped me adjust to our new life because you don’t really have the time to sit down to moan about anything. Passing the feeding tubes down her nose /mounth which one of the things I had to demonstrate I could do before we were allowed to go home. When you pass the tube s and then test it, you have to 100% sure that the tube is in the child tummy otherwise milk goes into the child’s lungs. So it takes a lot of alertness and attention.
So one’s mind cant be occupied with too much worry as there was already a lot of information about Joy’s care to take in. From the early days at home, we were already adjusting to Joy being home. We took her upstairs to show her new room and Joy is kind of lucky because she had loads of toys and massive baby things! Because I couldn't stop shopping when I was pregnant. We didn't really announce to the wider community that Joy has been discharged because we didn’t know what to expect of anybody’s reaction and answering the unknown questions that friends and family might have will be definitely exhausting as my hubby and I didn’t have answers too.
All we knew was we love our daughter, Joy. Though I had read the books the doctors gave me to read about DS, my head still felt empty, maybe we can call it information overload. and the fear of saying the wrong things to people about joy definitely kept us to our self. We only allowed really close friends like Justine and Gordon(who were actually like like parents to us) and my church pastor and of course the medical professionals( those were our compulsory friends really). When the physiotherapist rings up to arrange a home visit, sometimes you just want to be alone to enjoy your baby but knowing that she will need lots of support, my hubby and I threw our doors open to the medical professionals to joy’s benefit really. I can remember a really nice lady among them saying to that I didn’t have to accept every appointment.
It can be a bit daunting because you often feel that you don’t own your life anymore, appointments and appointments.
The only person who gave me a bit of worry was joy’s elderly health visitor. Armed with the growth chart and joy’s weight. Joy’s weight gain/ loss were big issues that my heart always skips whenever the health visitor announces that she would be visiting. It was so daunting to maintain joy’s weight as her weight often fluctuated due to her reflux which is probably related to the fact that that she was tube fed at the time.
Everything took a lot of adjusting and what I can infer from my early experiences was growth and maturity accompanied this experience . With Joy, I learned how to patient, really patient because I remember that growing up if I wanted something, I wanted it now. I was a goal getter and an overly ambitious person.. I remember when I wanted to take some exams equivalent to the GCSC’s normally It should be the year after that I should take it, I remember that I insisted to my parents at the time that I don’t want to wait to take the exams the following year.
Most importantly, I have developed empathy and a special affection for other families with special needs babies/ children. Its still in me till today that I expect that any mum with a child with special need should be my friend lol. Prior to having my daughter, it wasn’t as if I was ignorant of disabilities. I wasn’t but I just didn’t care really because you think it was meant for a certain group of people. I definitely know better that it happens to everyday normal people because I’ve met lots of lovely ladies who are blessed to have a child with DS! I look back and wish that I had befriended the kids in my primary or secondary school that were a bit slower but I know that I still have the chance today to show some love to other people other than joy. I’m really grateful for that because being a mum to Joy is one of the best things to happen to me.
My marriage to my wonderful husband is one as well. Joy has widened my thinking and horizon and really toughen me up as well which is really important in life . I’m grateful to her that she’s helped me not to be myopic in my thinking like judging people and all. I know what’s its like to be stereotyped now because people can decided who they think you are before even knowing the real you so I’m grateful that I’m out of that league. Also in terms of the wonderful people I have met because of joy, its really amazing. I’m going to dedicate a section of my blog to talk about our angels, some of the people that have really touched our hearts along the way. Some of them I had only brief encounter s with and some I’ve lost contact with. Finally and most importantly, having Joy I believe has drawn me a lot closer to God. I constantly want to know more about about the eternal rock of ages and the one who was, who is and who to come. God has the key to future.