The Journey So Far…

This week, I had the privilege and pleasure of watching the recorded version of the #Live2Lead2020 conference thanks to the amazing Dr. Suzy Puplampu, who blogs at suzydotblog.wordpress.com check her out. It was very inspiring, to say the least. I am making reference to this because in his opening speech, John C Maxwell mentioned that ‘everybody shares their dream, but only few will actually share their journey’. This profound statement resonated immediately with me because at one point when I needed help to make meaning of all that was happening in my life because of Down syndrome, the only entity willing to share their story with me was ‘Dr. Google’.

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These stories told harrowing tales of caring for a child with Down syndrome. I had just become a single parent in the process, how do I cope with these anticipated experiences, especially in a resourced deprived setting like ours? I started looking for relatable stories, something I could look up to, anything to make my experience better than I was reading, and I found nothing. Not because I was the first to give birth to a child with Down syndrome, but entrenched inhibitions and socialization made those I found not willing to share their stories openly, which I totally understand and appreciate. That is what made me ‘come out’ to my colleagues at the time by sending a company-wide email disclosing his diagnosis on his birthday as well as informing them about October being Down syndrome awareness month and although I was still learning, just a year into our journey, I was willing to answer any questions any of my colleagues would have in the bid to create awareness.

I got a mixed bag of reactions – those who felt ‘sorry’ for me, those who told me God gave me my son because He knew I could take care of him and those who simply did not know what to do. I actually had one colleague quickly shove GHS 50.00 into my hands on the corridor while not making eye contact. When I realized what it was, I followed her and asked what the money was for, and she just said, buy something for the kid! I knew they meant well by the way each person responded to my disclosure but I also know some of the responses were from entrenched inhibitions and biases that makes us so uncomfortable in the face of something unexpected as hearing your colleague say, I have a child with a disability

I have never shied away from sharing our journey – the challenges, the successes, the heartaches and the joys. For those who are my friends on Facebook, you know my wall is literally used for this purpose and are likely to remember stories of the severe obstructive sleep apnea issues we had for years that eventually resulted in surgery and how the quality of life for the entire family was changed for the better post-surgery. You will also have read about the leaking valve issue with his heart, the challenges with vision that we have been working on for the last one year among others. The fact remains that when a family is caring for a child with disabilities that comes along with additional health, social and educational needs, the entire family has additional needs.

Sharing our journey tells the new parents with the new diagnosis, who is feeling crushed, lost and inadequate for the journey that although the task ahead may be daunting, there are people doing it and we can learn from their experience directly or remotely by observation. I chose to share my journey because I wanted to put a face and voice to Down syndrome. My dream is to teach my son to have self-agency and by able to self-advocate, and until he learns to do that, I will be his voice in articulating his needs and advocating for these needs to be met.

On this journey, I have lost ‘friends’ but gained family – family formed on the fluidity of our humanness and not necessarily because we are related by blood. Family on the basis of our shared but uniquely individual journeys of raising our children with Down syndrome. About a year or so ago, I met another mom whose child had a different condition who told me, ‘Debbie, it is ok to lose friends, don’t take it personal’ and since then, I stopped worrying about whether I was doing something to lose the friends I had before my son came but to make peace with the fact that just us we outgrow our clothes, friendships can be outgrown as well, especially on this journey of caring for a child with additional needs that changes your priorities as an individual and collectively as a family.

For the purposes of this post, I asked a couple of parents within my network now to share a summary of their journey so far with us and here they are below.

‘When I was first told about my daughter’s diagnosis…I felt nothing!  I did not know what Down Syndrome was then. It was when I started asking questions, especially to the nurses who were caring for me and baby when they came on the ward rounds; WHAT IS DOWN SYNDROME? that I was told it is a genetic disorder caused when abnormal cell division results in an extra full or partial copy of chromosome 21. This extra genetic material causes the developmental changes/delays and physical features associated with Down Syndrome.

I was also told it comes with congenital heart diseases, intellectual disabilities and others. ‘Ehiiii what is this’? You see, I prayed for my daughter so when I conceived at the age of 46 without any fertility treatment was a miracle in itself! How can this same perfect, prayer-answering God, give me an ‘imperfect’ child with any kind of disability?  

“I REFUSE IT IN JESUS NAME’ – this became my daily affirmations and prayer over my child. I struggled to accept the diagnosis in the beginning but after equipping myself with information, learning to accept and love my child as well as bringing the questioning of God to an end, all is well with me and Todah now.

Persons with Down Syndrome are not “good for nothing”. The journey is not an easy one, the challenges are real and the ignorance about this condition is also very real. However, with proper care, love and patience, we find the potentials in them. They are adorable children, full of love and understanding. I love my daughter and will not exchange her for anybody else in the world. Motsumi kaa (thank you very much in Dangme)

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‘It’s not been easy with this journey. l was told my baby was different from other children so l asked why that is so and the doctor sat my husband and l down to explain the difference ‘difference’ to us. He also said it was because of our advanced age as a couple but she helped us to understand the challenges to expect on our journey with Down Syndrome and also encouraged us to see the positives in our child – if we see her to be a ‘sick’ child then she will be like that for us, whatever we wish for her is what will be.

Thank Jehovah l have a husband who understood me and Vanessa, accepted our journey and has been supportive since. The rejection from friends, family and neighbors was not easy but thank Jehovah for giving me the positive attitude to care for her. Our challenges with the education system is another story for another day, moving from one school to another just to find one that will acknowledge her additional needs and put in steps to accommodate these… The congenital heart problems she was born with made it difficult to do some things, although she is always willing to try new things.

 As a young adult, I thank Jehovah she is doing beading and she is progressing well. so parents please do not give up on these innocent children because it is no fault of theirs that they are uniquely made, let’s be there for them.’

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