She has an S on her chest!

Here’s a story of hope, love, faith, and perseverance. A story of how to play the cards we are dealt with; of believing in God and not letting your faith quiver. A story that continues to unfold and I am honored to tell it to you today.

My cousin Kellen, we call her Kesh, was a lovely girl growing up; she was fun, loud, cheeky and very opinionated. She still is, but now with a wealth of knowledge under her belt. She is a real African beauty, with big eyes, curvy in all the right places and stands at 5’2. Nikafupi.  She is the firstborn in a family of 3 kids and like all firstborns, learned responsibility at a very young age. But that never stopped us from always putting her inside a huge tire and rolling it down the street for our own amusement as kids. She even had a concussion and ‘went mad’ one time while she was doing cartwheels and ran off, but that’s a story for another day.

We went to the same primary school, MFA, when it still stood in its glory, I hope it still does. Primary school for her was ish-ish, not good, not bad. Hapo tu. She loved extra-curricular activities like athletics and music. She can belt out some heavy tunes by the way. After primary school, her dad decided to take her to Uganda for her O and A levels, where she experienced different traditions and cultures. She had an amazing time during her stay in Uganda and had an absolute blast. I mean, who wouldn’t?  She was far from home, an adolescent with a curious mind far from the glaring eyes of African parents.

Growing up, she always wanted to help people. She would come to our place and start helping my mum around the house and make me look bad; I was lazy in doing house chores, still am. She had this dream of being an air hostess but her height wouldn’t have allowed. She was very ambitious and one time went to Mathari Mental Hospital to look for work. Amused, the nurses asked her what she wanted to do, and she said she wanted to assist them in taking care of the patients. They burst out laughing and asked her if she even had the strength to hold someone down with her tiny body. Of course, she didn’t get the job but they told her they’d call her. She is still waiting for that call. And much to our amusement, she has never been able to live down that story.

True to her big dreams, when much older, she pursued aeronautical engineering for a semester but later jumped ship and did flight dispatching and operations and there started her career. The reason for her changing courses was very simple; after doing a month-long internship, her nails couldn’t handle painting, doing engine overhauls and scrubbing propellers. Eeei haigwesii…

Kesh always wanted to get married and have kids. She envisioned a life with a faithful and God-fearing man whom she could introduce to her father and gets his blessings. A man who would cherish, adore and honor her, and they would raise their family and stay together till death do them part. When it came to religious matters, she took it very seriously. She never missed church services, always involved herself in church activities and loved to sing. So it wasn’t a shocker when she joined the praise and worship team. Aside from the great things, she also had her fears. For her, life was supposed to be lived on the straight and narrow. She had a reputation and image to uphold and always lived with the fear of ‘what will people say?’ She wanted to be perfect. But sometimes things don’t always go as we want them to. Life has a way of testing our faith, our patience, that it throws things our way and leaves us in a daze.

In 2013 she was lucky enough to get work in Dubai and started to pursue her career. She met and fell in love with a Kenyan man and they got married in 2015. That same year, she was ecstatic to find out that she was pregnant. This is what she always wanted; get married and have kids. The stars had seemed to align in her favor and she loved it. But 3 months and 3 days into the pregnancy, she had a miscarriage. It was heart-wrenching; losing something she always dreamt of, yearned for! But that didn’t break her spirit; instead, she was more pumped up to try again. In early 2016, she got pregnant again and this time prayed and willed to see and hold her child.

Her pregnancy was a beautiful one, radiant and majestic, and she soon found out that she was having a girl. At 5 months, she had gone for a regular antenatal visit and had to do a scan to confirm that all was okay. It was not! The results showed that something was amiss. She learned that the baby was not showing significant growth and had irregular developments which led the doctors to give her an option of terminating the pregnancy.  She couldn’t. She never wanted to terminate her pregnancy after her miscarriage and she never wanted to explain to people where her 5-month-old pregnancy that was already showing went. She had faith that she would carry her pregnancy to term and have a healthy child. Due to her high-risk pregnancy, she had to go for appointments every Sunday for the rest of her pregnancy.

Kesh went on with this routine throughout the following weeks and took measures and precautions that enabled her and her unborn daughter to be safe. Being prayerful, she often prayed for God to heal her unborn. She never wavered in her decision to keep her baby. She lived and went by faith.

During a routine checkup on one of the Sundays, they realized that her amniotic fluid had decreased significantly. Her doctor told her that was a show of concern and she had to give birth immediately. Panic automatically set in and she had to go home, take a shower, remove all jewelry and come back by evening. She arrived back and was immediately taken for induction. While doing the routine tests and monitoring, they realized that the baby’s heart rate would disappear with every contraction and she was advised to walk to hasten the process. She walked around the ward and other women would give birth before her. She labored for 16 hours but never dilated.

Not taking any chances, beautiful baby Krystal was born at 37weeks on the morning of October 12th via caesarian section. Her head wasn’t as big as they had expected but by the end of her first 24 hours, she had already undergone numerous tests. She was taken to ICU and they found out that she had 3 holes in her heart and also fetal ventriculomegaly. This is when the fluid-filled structures (lateral ventricles) in the brain are too large.

She also had lissencephaly which means the brain was smooth with little folds and groves. She was diagnosed with Miller-Dieker syndrome. This is where the brain malformations cause severe intellectual disability, developmental delay, seizures, abnormal muscle stiffness, weak muscle tone, and feeding difficulties. The doctors informed Kesh that babies born with such a condition usually live an average of 6 months only.

It was painful for her to hear all these big medical terms for her tiny beautiful girl. There began her journey of immense love and great perseverance. Raising a special child needed strength and courage.  It was not an easy task. Kesh had to resign from work because the medical bills were racking up and came back home to Kenya where she could also get the help she needed. Her husband had to stay behind to fend for his family.

She went through times that she almost gave up. Every day that passed had its own challenges. But baby Krystal was a sure fighter, she fought so hard and gave Kesh the hope and resilience she needed. In her words, every passing day was a miracle.

Baby Krystal had severe convulsions almost every day. This usually led to more tests and more MRI’s. Krystal had to take medication several times a day. The routine was always food, medication, food, medication. She barely grew in weight and she never hit any milestones. But one thing that Krystal amazed everyone was her appetite. Despite her body not growing, she would eat plenty of food and her diapers were always full; a situation the doctors termed as being brought by her condition.

Over the months, Krystal had to go to Kenyatta Hospital three times a week for physiotherapy in the OT department. The sessions were painful for her and her mom. The sessions were meant to help her hit her milestones. She had also given Kesh scares that they would end up with them always rushing to the hospital. Not a week passed that they weren’t in hospital for one reason or the other.  It was hard for Kesh to see other children who were Krystal’s age mates grow and start crawling and walking; it broke her heart and it was painful for her to watch.

Despite being past 6 months, Krystal’s neck never firmed up, she couldn’t sit on her own and her feet were extremely sensitive that if you tried to help her stand, she would cry or show immense discomfort. Kesh would get negative responses especially from mothers in church who always judged her for not wanting to carry her baby. What they didn’t know is that Krystal was always fragile and always in pain and discomfort when she was held.

“Sometimes I would put her on my arm, just to feel her. Her cries would just make me smile because when she cried, I knew she was still with me! Its past 6 months. The doctors said she wouldn’t make it but it was past 6 months and she was still kicking it. And it came to pass!”

On the 31st of March 2018, they had traveled upcountry to visit Kesh’s grandma but due to Krystal’s condition that day, they never left the car. The weather was chilly and Kesh couldn’t risk taking her out of the car. Everyone came and said hi to her in the car and food was brought to them there. She only left the car to go say hi to her grandmother and immediately rushed back. On their journey back home that night, they decided to take Krystal to Kenyatta hospital because her cough wasn’t going away and she now had a fever and had difficulty breathing. In the hospital, it was heart-wrenching for Kesh to see her baby crying, coughing and in discomfort and they had to be admitted. It was a tough time for her because she had never been this way. She struggled with trying to keep it together and literally breaking down. As the hours went by, Krystal did not get better.

“As I held her in the ward, I realized her temperature had gone up even more and so I asked the nurse to check it again and it had risen to 41 degrees. That was the longest night of my life. Her breathing was not getting better, she kept coughing and in the morning, there was a bright beam of light in the midst of the nimbus clouds and a deep voice said: “Set her free”. I didn’t want to accept it and I kept saying “let your will be done”. I looked at her, she breathed 3 deep breaths and that was it. I rushed out, went called the nurse and they came and tried to resuscitate her, but she had left us.”

Baby Krystal passed away on the morning of April 1st, 2018 at 1 year and 5 months. She was strong and fought a good fight. That remains to be one of the saddest days of my life. She was buried on the 6th of April 2018 with close friends and family all turning up to show support.

 

 

All this while, Kesh did it with the help of her brothers and parents. She traveled back to Dubai with her husband who came for the burial but their marriage never made it and they eventually called it quits. She had received a lot of negative and external pressures from all corners and she could only handle too much.

Not all the people were on Kesh’s corner. She has faced humiliation, abuse and some uncalled for treatment. But like a phoenix, she rises from the ashes, she soars high and mighty. She tells me she had to go through all that to be strong. And indeed, she IS strong!

Kesh continues to live her life in Dubai, alone but definitely happy! She is slowly and steadily healing from her wounds. She continues to keep hope that one day, God will give her a loving husband and lots of healthy bouncing babies. She continues to pray and thank God for her experiences that have made her tougher and definitely stronger. As a family, we continue to love on her, to pray for her and encourage her to live her life!!

In my eyes, Kesh is my hero. She has shown me what resilience, perseverance, and faith literally look like. She has made me believe that there is life after tough times and that all we have to do is trust God in all we do. You can never go wrong with the big guy upstairs.

 

I pray for your continued healing, joy, happiness, wealth and prosperity dear girl! With lots of love!

 

Photo credit

 

 

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