WE accept that being a parent is tough as is. However, when an extra layer is added, parenting an “extraordinary child” brings additional challenges—ones most are not expecting. Being the parent of a child with a disability carries unique responsibilities, stressors, and even rewards!
While each child is unique, after speaking with other parents, one discovers that there is common ground in the challenges that parenting presents. As parents of children with disabilities proactively seek information, support, and advocate for their children, they may discover frustrating limitations that reinforce a sense of isolation or exclusion and stoke emotions such as grief or anger. It’s hard when you try to be strong for your children every minute of the day, and your proverbial cup becomes empty.
It requires an extra dose of emotional resilience, perseverance, and resourcefulness. As a result of these and other factors, parents seeking support for their children have distinct needs of their own when it comes to SELF-CARE.
WE spotlight a few extraordinary mothers and seek their insights as they integrate wellness at a granular level into their daily lives and that of their extraordinary children.
I’m the mother of two children living with Type 1 Diabetes. My story starts with my son, Jawan, being very ill and coming down with the flu. I observed many signs that alerted me that something was wrong, one being that he began losing his appetite, unable to eat the things he would normally like to. This made me rush him to the hospital.
His blood glucose was significantly elevated and other tests confirmed that he had Type 1 Diabetes. The doctors reassured me that Jawan’s condition was no fault of his or my own and tried their best to assist me in answering any questions that I had. It was an emotional time for me, and still is, as I thought about my baby being sick. He was only three at the time when he was diagnosed. I asked myself many times if I would be able to cope with this, not knowing what to expect. However, I came to terms with what I had to face and did so day by day, each day learning from the last.
When my daughter, Tiana, turned three, I immediately began worrying about her, as my son Jawan was diagnosed at that age. My heart sank when we began observing the signs again, and we questioned and were in denial, saying that this could not be happening a second time, but it was.
Each setback taught me more about the care they needed. Dietary changes, frequent blood sugar monitoring and daily insulin injections were on the list of my daily responsibilities from that day onward. Jawan and Tiana are now five and seven, and as one can imagine, managing my daily routine is very challenging, but I do make some time for self-care. It’s a must!
My advice is:
• Develop a routine that allows you some time for yourself. You need this time to meditate and pray to your God and ask Him to be in control.
• Make time for you, as difficult as it is - Sit and have a cup of coffee, even better when it is with a friend. Keep a positive outlook on life. Involve physical activity and creativity, these are my de-stressors.
• Always reach out to parents in similar situations as they are the ones who will understand what you are going through and could offer a wealth of advice. Sometimes you need to stop, exhale and cry if you must.
• Do not hover over your children, allow them to be as normal as possible. They need to be able to express themselves, REMEMBER they are living with Diabetes not dying of it!
My daughter Mya was diagnosed with Sickle Cell Disease (HbSS) at the age of one. For six years she received monthly blood transfusions at the Mount Hope Children’s hospital and for every month of those six years we both existed in a space of anxiousness and anxiety. I remember moments when finding a vein to insert the needle was impossible.
Explaining to a 4-year-old the importance of going through a process that brought such pain, discomfort and distress was heart-breaking, but Mya was always a strong child. With every transfusion her strength to withstand the pain of finding a vein and the needles to carry the blood became easier.
During the transfusion hospital stays we grew closer, and I intentionally fed her mind and soul with the understanding that her extraordinary life with sickle cell disease is in no way a disability, liability, or a weakness, but it is a life that required more discipline, diligence, and intention.
Mya is now eleven and just faced the SEA, despite the medical challenges she has encountered. She has grown more resilient, more formidable with a greater appreciation of life and a gratitude for her journey. As mother of a child with an extraordinary life, my daughter’s journey has also given me superpowers that I know I would have never possessed if not for her existence. We have both met the higher versions of ourselves through God’s grace. Our superpower; SAPP - Strength and Purpose in Pain.
Many ask “How do you cope?”
Developing a self-care plan for a child with an extraordinary life is no easy task. You go through trial-and-error moments, progress and regress situations with a multitude of medical and lived experience advice. Even with the same diagnosis as other children, I grew to understand that sickle cell impacted Mya’s body quite differently. While there are standard things that hold true for her disorder, I had to pay attention to her triggers and develop a care routine that was not only based on medication, but mindfulness as well.
Mya’s Sickle Cell Care Routine:
• Mindful discussions about her internal challenges.
• Attending to her nutrition; Always stay hydrated – 3 litres of water every day.
• Take medication at the same time every day.
• Watch and read stories of children with the same extraordinary life.
• Foster friendships with children with the same extraordinary life
• Extracurricular activities are a must – music and art, anything that allows the creative expression.
• Taking care of myself, so I can achieve all of the above and more for her!
A Happy Healthy Mum = Happy Healthy Child
rom birth, my son Elisha Elijah Archie was diagnosed with Cerebral Palsy or Motor Development delay. This would take me on a life journey we never knew about nor were we prepared to managed. During his fourteen years, we saw so many medical challenges such as high fevers, stomach pains, indigestion and recently seizures.
There were no special schools available to accept him due to his immobile condition. I tried several schools, but only one accepted him initially, however after one week, his level of care was too demanding for the school and was better optimised at home. Quality resources to manage all the needs of a child with Cerebral Palsy are difficult to establish; from physical therapy to occupational therapy, to the medications, to babysitting, the list is ongoing, even to today.
The demands of balancing work, family life, financial challenges, care for my other children felt overwhelming and even depressing at times. There were days when many tears flowed, and I felt like giving up.
However, my mantra is “Is there anything too hard for the Lord to do?” I could have easily given up, but I knew my other children were looking on. Other women and men are looking for some form of hope also. My strong spiritual relationship kept me going during these debilitating days, my trust and hope in my Lord kept me grounded, looking forward for better days ahead.
My strong family network, my mom and dad, my two elder daughters and son and my husband, everyone played a role in his daily care, during my office hours and even during my church attendance on a weekly basis.
I kept trusting in my Lord for the strength to continue this journey. Joining the Women’s Chapter of the Full Gospel Businessmen Fellowship International (FGBMFI) offered the world of support. In serving as the President of the Women’s Chapter, helping others through their difficult moments have blessed my life with strength and resilience to face any challenge that comes my way.
Getting involved with other parents is also important. This allows you to speak freely, hear their challenges and form a network where you can share ideas and solutions. I know many women have no choice but to stay at home and take care of their precious child/children, but there is hope, continue to pray and trust in God, “He will Never Leave You nor Forsake You”. My journey ahead is not a smooth, paved road but with God’s grace and guidance, I know we shall overcome, and Elisha Elijah will be stronger and healthier as we move forward as a family.
As a woman, mother, wife, leader, I am contended to balance multiple roles; it takes spiritual, emotional and physical strength to face each day when you are responsible for the well-being of a precious child.
My message to all, “Please let us love them unconditionally, let us never discriminate against them, they are the most loving and kind children you will ever encounter!”
In 2005 when my son Jabez “JB” was just three-and-a-half years old he was diagnosed with a rare form of childhood cancer, alveolar rhabdomyosarcoma – cancer of the muscle.
The diagnosis was numbing as the statistics then was one in fifteen million children got that type of cancer. His primary tumour was in his tongue.
I’ve always been a solutions-approach person’ so we dived right into his treatment - Chemotherapy, Radiation and Surgery. JB’s major surgery included removal of part of his tongue and rebuilt with muscle taken from his stomach.
His journey continued and JB battled on, however this cancer was an aggressive one and spread throughout his body. He lost his battle at the age of five-and-a-half in 2007.
The devastation is one we feel, even today, but is eased by his memories and the developing of the JB Foundation as part of his legacy.
What would have been his sixth birthday, on August 2, 2007, the JB Foundation was launched with the mission to use all our experiences, both positive and negative to help other families of children with cancer and to ensure that no family walked this journey alone. I was not only inspired by JB’s selflessness and compassion toward other children at the hospital, but also learned more from him in the two years of his illness than from anyone else in my entire life. As a result, I am a much better person today.
My advice to mothers who are caring for a child diagnosed with cancer is; in spite of your focus being on your sick child and keeping the rest of the family together, self-care is very important. I’ve always maintained that if Chevaughn, the individual is not well, mentally, spiritually and physically, then Chevaughn the mom, the friend, or the auntie will totally derail.
My solution is my relationship with God. I don’t always get the answers I want to hear, but rest assured, it’s always the right answer at that moment. Though the sayings “God knows best” and “His will be done” are hard pills to swallow, they ultimately provide you with comfort.
I kept a journal during JB’s illness. Writing was very therapeutic for me, it helped me keep in touch with my feelings, even if I couldn’t share out loud what I was truly going through for fear of being misunderstood, writing was a great avenue to de-stress.
I continued writing and recently published the second part of my six-part children’s book series ‘Anansi Goes to Hospital’ – where Anansi will be diagnosed with osteosarcoma - cancer of the bone. The series will take readers on the journey of what happens when a child is diagnosed with cancer and how it affects the entire family.
It’s been 16 years since I lost JB to this dreaded disease, but it is 16 years, The Just Because Foundation has given support to countless families and patients and we have much more work to do to raise awareness of childhood cancer. JB’s love continues through every patient helped.