Nothing prepared us for this
unique journey that we are taking with our awesome child with special needs.
There wasn’t a need to be prepared; the only need we knew to fulfill was to
love in all forms, in all conditions and under all circumstances. If you knew
and kindly understood her story, you’ll know what an amazing Fighter-Girl she
is. She conquers many tough battles and she smiles her cheeky, victorious smile
each time. When faced with dusty difficulty upon difficulty, she tries, like a
true warrior, to meet each challenge with outstanding effort. She’s taught me
that strength can be tested and pulled to its limit and that it’s our job to
emerge triumphant each time.
Being our first born, the crash
course into parenting began the moment she was prematurely born. It began with
those machines encouraging our baby to breathe. It began with her precious tiny
body getting sick just more than two weeks after birth- multiple infections,
multi organ failure and lack of oxygen to her brain which resulted in a brain
injury. It began with death breaths away from her lungs. It began with her
bravely surviving all of those months in hospital and then beginning the
journey with the “diagnosis” afterwards. As new parents, we quickly learnt how to
administer medication according to the clock. We learnt to crush and split
tablets using point something of the required sterile water and now- it’s so
second-hand.
I remember the first appointments-
post the lengthy hospital stay. The first of many that would occur. The first
doctors’ appointments previewed what possibilities our child’s future would
have. We knew all too well, that irrespective of the forecast the doctors had
in mind, the Almighty ultimately knows His divine plan for our child. Hearing
that our baby girl had slim chances of walking and talking froze that moment.
It’s like my body sat their holding my precious child as my unchanged face
stared on. My red heart numbed. I felt a sad, hard rock in my throat but I
didn’t dare let my tears water my eyes. I couldn’t. She had been through too
much; her beacon of life was too strong for me to falter. When husband and I
had minutes to “talk”, only tears streamed from our eyes. We comforted each
other that this journey was meant for us and that our little girl is indeed
special and just required special care.
Telling our family and close
friends about her “diagnosis” left little room for support and
understanding. Everyone else also needed
time to accept the information and “deal” with it, in their own way.
Understanding fails when others do not understand that our little girl’s lungs
get sick easily. If someone has a usual cold, it could leave her gasping for
air with RSV, pneumonia or double-pneumonia. Her recovery time which follows is
lengthy as she fights back. We can’t always attend family get-togethers,
birthday parties, coffee dates or meetings with ancient friends we haven’t seen
in rusty years- if they are sick or someone there is sick. We try not to tempt fate
when it’s too cold to chance taking her out. Then it comes: “When will we ever
see you all if any one of us is always sick?” and “Stop using her as an excuse.”
What is the
desired answer?
Then ask: “Should she rather
struggle to breathe on my account?”
Irrespective of the
answers and explanations, my only response is: I will do anything to protect
her. Zahraa cannot communicate when and
where she feels pain, these are the moments when we feel utterly helpless and completely
powerless. It’s like a pack of vicious wolves attacking her with invisible
bites and there is NOTHING we can do to stop it. You see, getting sick easily
isn’t her only obstacle.
When our little Zahraa was
several months old, she had Infantile Spasms which left her with seizures
occurring at unscheduled times. She had to begin a strong medication with
shocking side-effects to stop these seizures to prevent further damage to her
fragile brain. When these seizure patterns occurred, I felt my body stiffen
too. She was always on my lap because she had really bad Gastro Esophageal
Reflux Disease (GERD). Moments after her feed, her feed would emerge, like an
angry volcano projecting its milky lava onto the plains around it. It erupted
from both her mouth and her nose, each time. She couldn’t keep much of her feed
down. We sat with towels over her legs and on our laps, anticipating this
reaction after every feed and between feeds. If she needed a nappy change, our
hands moved so swiftly as to prevent this uncomfortable reaction for her. Most times, it didn’t matter how fast we
attempted to move, it still happened. Even though Zahraa was on medication to
cool the burning acid coming from her stomach, we could see her shut her eyes
and wince from the discomfort. Through
these moments of discomfort, these seizures would creep up on her and steal
those moments to control her body. I remember that there were times she
struggled for air as all the feed wasn’t properly expelled from her nose
passages when these seizures occurred and I held on to her for dear life.
Zahraa’s surgeon advised to wait
a little longer to combat her reflux problem. I remember his stern and firm voice
booming in his office: “If you can handle it, let’s wait”. “Some of these
operations could lead to many more, I don’t want that”.
Be patient.
In my head, all I could think was: I was
definitely going to handle everything- if it meant she didn’t have to get hurt-
if she didn’t have to go through more trying moments. She wasn’t even a year old at
the time. Zahraa’s first year of life was testing, but the more another
challenge presented itself, the more we kept stepping forward to meet it, to
face it with her. People didn’t understand. They wondered and argued why we
couldn’t respond to messages? Why couldn’t we make time? They also needed time.
Why couldn’t we attend functions? Then, one day, I asked husband to hold our
little girl whilst I made time to reply- because the attitudes wouldn’t fade. I
was criticized for my “long” reply because I never made time to reply. And-
wait for it- now I have time to reply. And now I wanted to set things straight.
If wise words claim to understand then understanding should be proven through
trusted actions. No emotional guilt-tripping is necessary. Viewing sharing
information as complaining provides no fuzzy blanket that suggests comforting
support.
When people see a special needs
child, they think the only person affected is the child. Fog clouds their
perception because as Zahraa fights, we fight. As she struggles, we struggle.
And when she is triumphant, we are victorious. You see, what Zahraa was
battling at the time, wasn’t her only struggles.
Zahraa’s brain
wouldn’t and still doesn’t always allow itself to shut down in order for it to
rest and recharge. She could stay awake, without napping, for 22 hours in her first
year of life. In her second year of life, she could
stretch that for 48 hours (2 days) and then 72 hours (3 days). We were
functioning off barely shutting down ourselves. Yes, people wanted to know
where their time was. On these long days
that headed into the nights, I remember when she finally fell asleep and
nuzzled her head against my chest- I wouldn’t chance moving. Any position for
sleep was good enough for me. It didn’t matter if it was 10 minutes or 45
minutes, I was going to sit there and let her snooze for as long as she needed.
One day, as night was approaching, on husband’s birthday, she was a
year and two months old. I heard a sound that she never made before. I
looked into her face and recognized that she was attempting to laugh. A smile
had broken across her face. I called husband as my voice trembled. We stared
with love and hope as her gums exposed their fleshy selves. We tried every kind
of “baby talk” to keep that moment going. Tears trickled down our cheeks
through our playfulness. Her first smile
and form of facial expression occurred after a year and two months. When
that moment came to pass, it occurred at random. When she got sick, it wouldn’t
occur at all. The time laps between smiles and cheeky giggles would be two
months, sometimes longer. Those special moments, I could freeze it in an ice
tray; and dissolve each ice block daily for it to replay every hour.
Through the many appointments
that occurred, we blessfully discovered that we were expecting another little
girl. I learnt just how insensitive people can be when they are given the
opportunity to talk. They questioned my pregnancy as if everything was wrong
with it because, according to them, my body failed to carry Zahraa to term. So,
what could go wrong this time? I didn’t have a magic wand, but if I did, I’d
silence those that thought they knew something about nothing.
Two days before her second
birthday, she welcomed her baby sister into this world. Emergency caesarean.
Nasal-prong oxygen, but otherwise, baby was fine. In the glances Zahraa could
give her sister, it was stares of love and acceptance. Five days after her
sister was born, the number of their awesome pediatrician snuck up on my phone.
He informed us that Zahraa’s little sister was on the ventilator, that there
was a high possibility that there was a hole in her precious stomach. Our
hearts froze and the dry, hard rock in my throat felt like it wouldn’t crumble.
She suited up in her finest armour like a fearless soldier (much like Zahraa)
and underwent an emergency operation to save her life. The operation was
successful, Alhamdulillah (All praise is due to God). And we could breathe
again.
When Zahraa’s sister (Zaynab)
came home, Zahraa’s sucking reflex began to fade rapidly. Zahraa was taught to
drink a bottle and throughout her first year of life she had to be encouraged
to drink and complete it. Some of these bottle feeds would be short whilst
others were long. When her sucking reflex faded, the bottle was no longer a
source of nutrition. Luckily, Zahraa could still eat but her ability to chew
and swallow fought against her. As you sit there, swallow. In the time it took
you to do that, Zahraa takes 6 to 8 attempts before she could swallow what was
in her mouth. Feeds could last from 45 minutes to an hour per feed. After her
feed, she needed to be kept upright for 30 minutes to prevent reflux from spilling
its juicy lava. When Zahraa was sick, she wasn’t strong enough to breathe and eat
at the same time.
When Zahraa was just over two
and a half years old, she underwent a major operation to assist with
her reflux and a feeding tube was inserted. My motherly profession was
stretched from physiotherapy, occupational therapy and speech therapy to
include tube-feeding and stoma care. Alhamdulillah (All praise is due to God).
Our little Fighter-Girl. She fought through initial discomfort and even now,
she fights. As we settled into her new routine, it became easier. Zahraa makes
everything easier. When staring into her eyes, there’s only love. When she
smiles and she catches our eye, it’s only love. Her sister, Zaynab, makes
everything easier. No one would quite understand the priceless input that
she has brought into our lives and into Zahraa’s, especially.
Watching a child a blossom
through their developmental stages is amazing. It demonstrates how Allah (God)
beautifully crafted the brain. When Zaynab became mobile and we were on the
floor for play time, she would abruptly stop and go over to Zahraa. She would
extend her arm around Zahraa’s shoulders and just hold. My eyes watered behind
them as I held Zahraa’s body upright. Zaynab would turn to stare into her
sister’s face and its only pure love as she plants a wet
kiss upon her cheek. There are times when Zaynab feels its sister-sister “chat”
time and she would babble on and on to Zahraa. Whether Zahraa understands her
or not, it’s irrelevant. Between moments, Zahraa’s cheeky smile would sneak
across her face. Zaynab’s understanding
of Zahraa is a precious bond and amazing to witness and to be a part of.
Of course, to protect Zahraa’s
health, we have to ensure that Zaynab stays healthy. Then we heard, so are you
going to keep Zaynab back in life? Then, we understood that they don’t
understand. Zaynab is part of our family and part of this journey. Insha Allah
(God-willing) Zahraa will become stronger as she grows older.
When Zahraa is pushed in her
buggy or being carried in our trusty arms- wherever she may be, people feel the
ultimate need to stare. To stare rudely. Without a smile or acknowledgement
that the little being that they are staring at is a person. When talking to
people, whether it’s sharing a room when Zahraa is hospitalized or in the lobby
at the hospital or talking to family, there are things you can certainly keep
to yourself.
Don’t feel the need to ask me
about my caring for my child in 10 years time and how I’m going to do it. Allah
(God) will light the floating lanterns that guide the way. For those who claim
to have solid faith, don’t feel the need to remind us of the great reward that
awaits us in the after-life for undergoing these testy challenges with our
child when she dies. Our child isn’t just a test from Allah (God). Understand
that she’s our child with a personality whether you understand her or not. She
has likes and dislikes and she comes through life with great strength. And Insha
Allah (God-willing) she is granted many years with us. Don’t feel the need to
calmly sit next to me and ask: “So, what’s wrong with her?”
There’s something wrong with your manners.
I don’t look at your kids and say: “What? Too
much sugar?” to justify their behaviour. It’s not my business. Don’t feel the
need to ever refer to my child as a bulky burden because she isn’t and never
will be. Silvery silence is better. If you feel the need to express yourself
about my special child, understand that I don’t understand. If you feel the
need to question our “sensitivity” regarding our child/ren, understand that
both of them breathed against death’s smoky face. Our decisions regarding our children- are
just that- our decisions. Know that no
two special needs children are the same. It’s not a one size fits all. Children
react differently to medication and therapies. Everyone’s children are all
unique in this way.
To the amazing team of doctors
and therapists that work with our child, we are so thankful for your awesome
input. Your guidance and patience for our endless questions are warmly
appreciated.
We don’t know what lies ahead for
our Fighter-Girl. If you want to know if she’s going to be like this forever,
then know with absolute certainty that regardless- it’s going to be one fantastic ever after- If
forever can hold us, Insha Allah (God-willing). We understand that the ancient
hands of time must tick. And yes, we’ll miss out on some of your memorable
moments. Kindly try to understand that our precious moments right now- needs to
be protected. It doesn’t mean we don’t love or care for you any less. Father
clock’s hands will turn one day and things might be different. Different. Not a road of suffering
and difficulty, it never was. She just has a different journey leading to a
marvelous destination. And her sister? She’ll be exposed to a great adventure
far more than anything that could ever hold her back.
Zahraa’s next obstacle has
revealed itself and she has suited up accordingly. She’s already had two
procedures this year. She awaits another major surgery soon. Her armour is polished and her shield and
sword is at the ready. We will carry our child for as long and as far as we
need to, Insha Allah (God-willing) just as Allah (God) carries us. This little
gladiator is only just over three and half years old. She goes
into combat with courage far beyond her years. There are times when tears
stream down our cheeks but never, not even for an eye blink, do we wish this
was not our journey. When “free” time
presents itself, husband and I talk about anything and everything. And when
those moments come, I prefer pj’s and bad hair days. To love and to love
unconditionally, means to love at all times and in all forms. It doesn’t mean
that we lose hope and stop working towards a one day, some day she might have
the ability to walk or to communicate. It just means that even if she is unable
to, it’ll be okay, Insha Allah (God-willing). And that’s what makes this
journey truly special.
