You're amazing, just the way you are!

Joy, my brave little girl

London Paralympic 2012

I'm really inspired by the strength and agility of the paralympic swimmers. They just show that there's no limitation to human strength and achievement irrespective of societal perceptions. Surely, this is a human triumph in the face of adversity.
http://www.dailymail.co.uk/news/article-2195366/London-Paralympics-2012-Disabled-genius-Stephen-Hawking-star-turn-London-2012-Paralympics-Opening-Ceremony.html#socialLinks
http://www.dailymail.co.uk/news/article-2195366/London-Paralympics-2012-Disabled-genius-Stephen-Hawking-star-turn-London-2012-Paralympics-Opening-Ceremony.html#socialLinks

DS awareness: We are more alike than different

HAVING JOY

( Continued from my post titled :2007, the special year that my daughter and I was born)

Eventually we were allowed to see joy and I couldn’t wait to cuddle her but she had lots of tubes all around her that it felt as if someone had exchanged my baby for another baby. The whole neonatal ward really looked so scary at the time despite all the doctor’s explanation. Of course we understand now that the doctor put her on oxygen for her own good really because there’s a level of saturation expected from babies. it was a serious learning phase where I had to quickly absorb information and learn in order to keep up with the pace of the information overload. 

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. 

All we want was and is the best for Joy although I have learnt over the years that as well as looking after joy, I was responsible for looking after myself and my hubby too. But I didnt know that then. About the professionals, lots of them that we met the time joy was born were super helpful and kind. One is still in touch with us till today ,doctor liz Marder even though we relocated to the north of England from Nottingham for my hubby to pursue his PhD. Dr Liz still sends me emails asking about joy and that’s really nice of her. I remember when she visited us then at home, she would come upstairs and just listen and listen . I was able to ask her loads of questions. It look like she was one of the angels that God sent to us to help us along our journey. 

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.

Downs syndrome Awareness

http://www.nhs.uk/Conditions/Downs-syndrome/Pages/Introduction.aspx
http://downsyndromenewmama.blogspot.co.uk/

2007, the special year my daughter and I was born

Since I can remember, I have always adored children and still do till today. After I  got married, my husband and I couldn't hide our delight when our first daughter joy was conceived. I was a master’s student at the time and I was really keen on carrying on with my studies as much as I could really. Luckily for me, my estimated due date was a month after my graduation. Midway through my studies, I was allocated a masters project that involved that researching on radioactive pesticides that is studying sorption of 24-d and carbaryl to determine the rate at which they can move easily within the soil and the effects this can have on the environment. 

The first thing that came to my mind was that radioactivity and pregnancy doesn't go together so I discussed with husband who advised me to discuss it with my project supervisor. Because I was over 3 month’s pregnant, it was agreed that I could continue with the research as the baby was past the first trimester. I continued with my lectures, modules and preparation for my research. Fast forward a few months later, I concluded my master’s programme in flying colours and I put to bed at the end of august. Prior to that I declined doing the test for spinal bifida and down’s syndrome offered to all pregnant women because of my theoretical knowledge of genetics as records have it that it rarely happened to women under 30. 

More so, I personally don’t believe in abortion so I felt that there really wasn't any need to test for these anomalies in order for the choice not to arise. Everything went very well with my pregnancy except towards my due date when I lost my mum and the shock was really too much to bear because she had travelled to Nigeria from Switzerland to visit my siblings and conclude my traditional marriage rites as I got married in the UK. At the time of mourning my mother's departure, I can remember my Pastor, Pastor Ibikunle of the redeemed christian church, Nottingham telling me that the mantle of responsibility has now shifted to me and at the time it sounded really confusing. Those were one of the positive words that I hold on to till today. 

Well, I was forced to go to the Queen’s medical centre to test because I had cried so much for a heavily pregnant person that my hubby was really concerned about my well- being. Well, I had to consider my unborn child’s well being as well so I decided to allow God take control of the situation. It was really hard then because I was even too heavy to travel to Nigeria for my mum’s burial. That was really hurting, that I couldn't pay my last respect to someone who invested so much love into me positively. 
Well, I was also closer to my due date so amidst my sorrow at the time, my husband and I decided to name our unborn child Joy because the bible says ''weeping may endure for the night but JOY comes in the morning''. 

Moreso, the name joy really just described how I felt towards my unborn baby as I couldn't wait to hold her in my arms. My siblings in Nigeria really handled things well because they sounded really strong over the phone so this encouraged me to move on as well. At this time, I had to focus more on my baby and I couldn't do much for my siblings in terms of even comforting them as the eldest sibling. 
Well, few days before my daughter was born I observed that she wasn't kicking as well compared to how she was through out my pregnancy and my motherly instinct set in that something might be wrong but being as optimistic as I am especially considering that everything was fine for nine months. I just went for walks and ate lots of curry to encourage natural induction but my due date came and my baby wasn't making any moves to come! 
My husband took me to the queen’s medical center where I was registered to deliver and the nurses said I wasn't in labour and the baby is not ready to come yet though she was due. So I had to go back home, after that day, every 24 hours just seems like the longest time of my life as I just couldn't sleep, that suspense as to what could be happening was so surreal.  Four days after that, our close family friend, professor Justine visited and she took me to hospital.

 I think my labour started at the time and I was admitted straight to the labour suite. This was my first experience so I really couldn't compare how I was feeling to any other. But I remember that my labour took forever and I had to be induced. With the epidural and all, I was already too tired to push and I remember the midwife threatening me in a funny way that if by morning I haven’t pushed (delivered), she will leave me on my own. I guess she was trying to motivate me to try harder to get my baby out but I couldn't stop crying at the thought that my mum should be there to comfort me because I had written a birth plan which had my mum and my hubby as my birth partner. 

My late mum worked as a trained midwife herself and as a child, I had witnessed two life births (that was in Nigeria). Maybe that explains why I just love babies..lol. Well, that morning of the 31st of August, I delivered my daughter naturally though via induction and I can remember just crying and crying as she popped out because of the relief that she was finally here. For me they were tears of joy when my hubby told me he could see her head as she came out. The process of giving birth is really magical I must say and it should be added to one of the wonders of the world!. 
I noticed that unlike my preconceived notions where everyone rejoices at the birth of a baby, the midwives immediately abandoned us, they left my baby on the weighing scale and went to get the doctors. My husband and I were just puzzled, we didn't understand what was going on. I had bought lots of gorgeous mothercare baby blankets that I expected that Joy will be wrapped up to keep her warm. Immediately, I began to experience societal perceptions towards difference of any kind because a  new born shouldn't be left for hours after delivery unattended. I was already too tired and all we could do was wait. 

Eventually, they came back and allowed me to cuddle her and I tried breastfeeding immediately. Wow, that was one of the things I couldn't wait to experience breastfeeding, how beautiful. My hubby was just taking photos and photos. Shortly after,our world kind of fell apart when a pediatrician come-in and she insisted that they have to take the Joy away immediately for testing. I thought to myself, that is that how giving birth should be because I thought she was here now and that’s all that mattered. I just wanted to go back home with my baby. In myself, I didn't even think that I had fully recovered from losing my beloved mum four weeks earlier. My husband being a very positive person was just smiling and encouraging me. 
We were then taken to another ward away from the labour suite and we had no idea what was happening to Joy and we were just there alone. At this point, we starting praying and praying because we just didn't understand what was going on. Then about five grim looking doctors entered the room. The look on their faces, I thought the baby had passed away. I was relieved when they told us that she was alive but she was in the neonatal ward. Wow, my sojourn into the world of medical terminologies started; previously I knew nothing/little about neonatal wards. My mum delivers babies in few minutes and their mothers take their babies them home. So my lessons in the school of life started. This really is quite different from any other sort of education because of the uncertainties but today I can say that it actually makes one stronger and well-grounded as a person.

The doctors went on and on about their findings and I can remember me just looking so shocked as if I was trapped in dream. Meanwhile, my husband was already on the floor crying and praying. I thought oh no, this is a bad dream, I need to wake up. Few minutes ago I was holding Joy in my arms and rejoicing and now doctors are here telling me within hours of her arrival that she has down’s syndrome (trisomy 21). 
I couldn't correlate the beautiful baby I held in my arms with the manuals they presented to me. When I looked at Joy few minutes ago, I was already in love with her. Now I’m being told, she might not be able to use her fingers to hold on to things properly., she might be delayed in some ways, she might not walk or talk on time. I stared at them in disbelief but when they mentioned that someone from down’s syndrome association will be coming to talk to us. Then I started screaming lol (I realized that I’m not dreaming). 

I don’t know how people react to shock but words can’t even describe that feeling. All sorts of pictures started flashing on my mind, wheelchairs, mental retardation and all sorts.  I remembered that we’ve bought lots of things to celebrate Joy’s arrival. At that point, I perceived that things might not be the way they use to be. I tried to picture how Joy will be growing and I couldn't think properly. My husband prayed and prayed and I was just numb like someone that a huge star has fallen upon or someone in a trance…. It was harder because she’s been separated from us and we wanted was to hold her in our arms and cuddle her, all we wanted was JOY.

Here is my first picture with Joy in the labour suite of the queens medical center.

Please go the next post for a continuation.
Your comments will be appreciated:)