RAISING A CHILD WITH LIMB DIFFERENCE

As Two Dads from different ethnic and cultural backgrounds, we’ve learnt to embrace our differences and that of our son who is similarly from a different ethnic and cultural background. That, which is completely normal for us, is weird, ‘abnormal’ and a little uncomfortable for others who simply can’t or don’t want to understand what makes us a normal, loving family. If anything, our differences are what make us a stronger family unit, where we have each other’s backs, largely because we have all felt or heard the unkind tone of prejudice as it festers into hate. Imagine then how much more physical differences would cause uncomfortable reactions or simply avoidance and rejection, just because society demands that we all exist within the box of preconceived ‘normality’ where being different is taboo. 

Another family that chooses to embrace being different and live their normal without fear of rejection or ridicule is this family and we just love their own story and journey of courage in their own words. 

I often wonder why limb difference awareness month is not celebrated for more than just one month in the 12-month calendar. I think about it almost daily because limb difference is a lived reality in my home. My husband and I are proud parents of Tawana affectionately known to loved ones as “Wana”. Wana was born at 27 weeks, with a limb difference, and he is one of the toughest people we know. He was lovingly known as the “superstar” of the neonatal ICU during his rather long stint in the ward after his birth. He is the kindest, most loving six-year-old we’ve met (if I do say so myself). Wana’s life has made me believe in miracles.

One week before we were scheduled to have our 3D scan, baby Tawana decided to grace us with his presence. He was born at 27 weeks and weighed a mere 1,260kg. I had some complications with my pregnancy because of an infection that caused severe inflammation of my gall bladder. Thus, leading to his premature delivery. In retrospect, his birth and everything that followed were all part of God’s plan. Our Dr. told us about a couple that was in his care who discovered a limb difference during one of their scans and opted to terminate the pregnancy because they were concerned about the quality of life their baby would have. Our gynaecologist never forgave himself for not having discovered the limb during the prenatal scans, but I digress.

Tawana was a medical miracle, every doctor we encountered would exclaim, “Oh is this the little champ that survived all the odds. I heard all about him!” It seems Tawana was the talk of the hospital, and we learned this with each visit with a different specialist. Seeking corrective surgery fast became a priority because in our minds that was what was the right next step on this journey. But we quickly realized that all the visits to the numerous doctors were not about Tawana, but in fact, about us and our fears that we were projecting onto him. Almost immediately we called it quits on the consults with the doctors and surgeons and all the medical advice. We made the decision that Tawana would make the decision to have the surgery he feels he needs or decide whether he wants to have a prosthesis or not. It was not for us to decide for him. Until that time, we will support him as best we can.

It was hard enough that life for new parents didn’t come with a ‘Parenting 101‘ manual. We had many questions that needed answers. Answers that we could not provide for ourselves and ultimately for him as he grew older. We researched and networked and read up as much as possible, but nothing could sufficiently prepare us for the time when he would start to notice that he is different and start asking the questions about why he looks different.

We have been blessed with a great support system in the form of amazing family and friends who have not only been a safe space for Tawana but who are working tirelessly to raise awareness and teach their communities about differences and celebrate those differences. Tawana has many cousins and friends where he does not feel judged or looked down on, and he can just be a kid amongst kids, and we are eternally grateful for that. We have also joined the Lucky Fin Project community which has been amazing. The Lucky Fin Project is a US-based organization that strives to bring awareness to limb differences in people of all ages, races, and geographical locations (Lucky Fin Project – Ten Fingers Are Overrated.)

“A child being born with a limb difference is not tragic. It’s extremely important to show our children how capable & wonderfully made they are. If we treat them as flawed or limited that is who they will believe themselves to be- and that would be the tragedy.” -Molly Stapelman, Lucky Fin Project Founder.

We have on occasion, had instances where kids and sometimes even adults are quite hurtful in how they receive Tawana in public places. We go to parties, restaurants, or just to the supermarket to buy bread, and people will stare. Children are inquisitive by nature, especially about things/people that appear different from what they know as ‘normal‘, and while some will just stare to no end, others will approach him and ask, “What happened to your hand” or “Why do you have one finger”. Interestingly, we have noticed that the older he gets, the more impatient he is becoming with the never-ending stares and questions. Generally, he responds to the questions with “God made me this way” or “I was born like this”.

It is in those encounters that we (as Tawana’s parents)  have learnt to find teachable moments, by simply chatting to the parents and the kids about limb differences, highlighting why it is important to have these discussions with your children at home, and educators to teach in schools because it is highly likely that Tawana will not be the last person living with a limb difference that they will encounter. Regardless of a person’s physical or mental capabilities, it is important to practice kindness always.

As parents, we have done everything in our power to ensure that life for Tawana is as ‘normal as possible, whatever that may look like in a society that is pro perfection.

Looking back on the journey of finding Tawana a school, I can’t help but smile. Tawana has had the great fortune of having amazing educators and classmates. We have never felt like he was judged or made to feel less than in any way. We went through the admissions process like any other parents looking to place their child. Of course, the school asked if he had any special needs that would support his learning abilities in the classroom. His classmates have been an amazing bunch and his teachers are just phenomenal. We encouraged the school to use the word “differences” as opposed to “disability” which they willingly obliged. Why? Well because representation and the language we use matter. It really does matter!

Wana is a big brother to Takunda, his young brother whom he is very protective over. It was a difficult journey finding out that we were about to bring another member into our small family while we were still navigating the complexities of parenting Tawana. We had many questions, and we were anxious. Our gynae, who was the same one who delivered Tawana, walked every step of that journey with us and answered all the questions we had. Would this child have a limb difference too? If so, then what? We had several tests done and I recall the specialist obstetric gynaecologist saying “This one is normal” and I wanted to scream!!!! Why would he say that? It was then that I realized that we would have our work cut out for us. While raising Tawana and his limb difference in the most normal way possible, we needed to be mindful of the little person that would soon be his little brother and what that meant for them both. Tawana has been a superb big brother. It is heart-warming to see just how much they love each other and look out for each other at school. As most siblings do, as hard as they love, they fight just as hard.

We are not naïve to the fact that we will have many more challenges to overcome in the future. We are trying as much as possible to stay one step ahead and pre-empt and prepare for them. We have talked about engaging a child psychologist that Tawana can speak to and even Takunda to help them along the way. Do you know the old saying “It takes a village to raise a child”? Well, our village has shown up in a big way for us as a family. Sometimes it gets tough, and it helps to hear the encouraging words from friends and family. It is nice to see the teachers being patient and giving him encouragement. The road ahead is long but as long as we have each other we will overcome any obstacles that we might encounter.

To anyone reading this who encounters a person living with a limb difference, I urge you to exercise a bit more patience, and kindness and for the love of all things good, please do not stare! Rather ask “What happened to your arm?” as opposed to staring. Let’s all normalize and talk about ‘differences‘ with your children and your families. A little kindness goes a long way!

*Photo Credit – Tawana’s Parents