What my son’s condition has taught me about life

Like any first-time mother, Winrose Muthee was both anxious and excited about the birth of her son Declan. PHOTO| COURTESY

What you need to know:

  • Apart from that he couldn’t eat as usual due to the frequent respiratory pneumonia infections, a fact that saw the doctors first introduce tube feeding.
  • It is a very costly affair meaning that first of all she had to buy this tube at a cost of Sh 7,000. But that’s just but a tip of the iceberg compared to the amount of money and time she spends to ensure that her little boy’s life is "normal".

Like any first-time mother, Winrose Muthee was both anxious and excited about the birth of her son Declan. The nine-month journey had run smoothly thus far and she was looking forward to finally holding her son in her arms.

Come February 24, 2014, her labour pains kicked in. At 6.30 am the next day, she delivered a baby boy weighing 2.9 kilograms.

But her joy was short-lived as just after giving birth she sensed that everything was not okay.

“He was crying as if he was in sort of some pain, a cry that was immediately followed by an abnormal silence,” she says.

HAPPIEST TIME IN HER LIFE
“I watched him and all I did was pray to God to spare his life. I remember a midwife stitching me, but I could not feel anything as my focus was on my son. I begged God to spare his life. Holding my son, Declan, in my arms was the happiest moment in my life,” she adds.

Her son was later diagnosed with cerebral palsy. Cerebral palsy (CP) is a condition that appears in early childhood and which leads to various problems including poor coordination, trouble swallowing or speaking, weak muscles, and tremors.

Often babies with CP do not roll over, sit, crawl, or walk as early as other children their age with some faced with the difficulty of thinking and seizure attacks.

It broke her heart that she could not breastfeed him as she had hoped to, but she made herself focus on taking care of him.

DEPRESSED
Winrose started sinking into depression when she realised he was not gaining any new skills.

“He was my first and only child. I felt so angry, life became very dark, but with a lot of counselling and friends I connected with online, I started appreciating the gifts my son brought into my life,” she recalls.

She found help on Kilimani Mums Group, a Facebook group credited for launching the “My Dress My Choice” campaigns.

“Some people will be quick to say how idle and nosy they are, but that group was a source of great comfort for me. I met with some mums who had similar problems and their stories made me want to live each day stronger for my son and to give him the best I could ever give,” she adds.

SURVIVAL AND FIXER MODE
“I switched into survival mode. After his first month of hospitalisation, I decided to do everything in my power to once again beat the odds and get him to feed, walk and talk. I continued with every treatment prescribed by the doctors and the review clinics that came in handy.

When he was just four months, I was advised to start occupational therapies and I did so without hesitation. They were expensive, but I had to bear with the cost as I looked for more affordable options,” she adds.
Winrose explains that she also went into fixer-mode where she wanted to fix everything that was wrong with her son.

“I wanted to do everything in my power - and everything outside of my power - to fix him.

I spent my days and nights researching, reading and finding out more information about our son’s disorder I did all the networking I could.

I tried everything anybody could advise me at the moment. I didn’t want to accept the fact that my son was going to be bound to a wheelchair, unable to speak, walk and do the things healthy children do during their developmental years. I sunk into depression again when I realized I could not “fix” him.”

“I accepted him as he was when I realised that he was all I had, it was my decision to wake up to reality and be strong or live unhappily in denial. My family's and friend’s support was overwhelming.”

With her resolve to help her son strengthened, she sought help from a different hospital.

“His feeding was poor and I felt that if only I could feed him, then I would have less to worry about. He looked like a 3 month old baby yet he was 10 months old. I decided to change hospitals. The doctors there suggested a gastronomy feeding tube,” she says.

Winrose still feels guilty whenever she takes time off for herself but has learnt to take each day at a time. She says that she has learned that her son’s purpose in life is to show people that one does not have to be like everybody else in order to be happy.

She also acknowledges the support of her employer and workmates who allow her to take time off whenever her son needs her.

“It has been a step each day, but I am proud and thankful to God for it all,” she adds.

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EXPERT VIEW ON ONLINE SUPPORT GROUPS
Seeking help from online groups is a move that Ken Munywa, a psychologist at the Talent Recruits institute in Nairobi, terms as healthy but at the same time cautions that could be misleading.

“Getting a group of mothers facing similar challenges is a great idea as it will prepare you to deal with certain challenges that are brought about by this condition. But at the same time there is a danger of being misled as we intend to deal differently when faced with the similar issues,” he adds.

It is for this reason that Munywa insists that you have to seek professional advice both for you as a parent and for your child. “Actually this condition can be tackled early in life and make a huge positive difference later in the child’s development,” he adds.