( 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.
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