Special Stares for her Special Needs

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.