Extra Hugs, Extra Kisses, Extra Love

by Angela Nyakinyua (Kenya)                         angela.nyakinyua@gmail.com

Down syndrome. A word I had heard of all so often, but never really took interest in, until seven years ago. I remember that  day so well, when the doctor told me that my son Jeremy has Downs. I was dazed, confused, I felt alone, and for like five minutes I just gazed at my son with so many questions in my mind. The doctor went on explaining stuff for like ten more minutes, which I caught nothing of. “Why God? “Was the question that played in my head over and over again like a broken record. How was my life going to be? Will I be able to take care of Jeremy? What about resources? I had too many questions!

So, I did all what we do best. Turn to “uncle Google” for answers. I spent three whole hours gazing at that screen. I read over and over again and wished that it was a bad dream. That I would wake up and my son would be okay. My turning to Google that day, I would say was my savior, because after I slept on all I read, the following day I woke up a different woman. I knew I had to be strong, for my little boy. I got strength, and I was ready……Bring it on downs! Was my new mantra. Funny thing is, I never cried, scared I was yes, but never once did I shed a tear. I was not giving any room to despair.

So started the intense therapy. Jeremy had very low muscle tone. I would take him for therapy three times a week, take him back home then go to work, and still have time for my older daughter {Super woman right there!} I must admit, I was drained, both physically and mentally. But, I soldiered on because I knew that I was fortunate enough to have medical cover, which catered for his occupational therapy, something I am so much grateful for. Jeremy’s therapy taught me so much. The little things that we take for granted like being able to move our neck, or just standing, are a grueling task to some. Hence, it changed my approach to life. Thankfully, we continued with therapy and Jeremy was able to walk at two years. And boy did I celebrate! See, I have learnt to take each and every milestone that he achieves with so much joy! It’s a celebration in my house, and the expression of pride on Jeremy’s face, is just priceless.

At age three, Jeremy joined school. I decided to take him to a ‘normal’ school, because I knew, that here his progress would be better. Thankfully, I found a school that incorporated special needs children as well. The day Jeremy started a school I was the proudest mum! Yes, I cried. I was so proud of my little champ. I had to do a list of his vocabulary to make the teachers work easier, because Jeremy has his own. For instance, tam for come, tet you for thank you, wav you for love you, sack for snack, tensil for pencil and so many more. To date Jeremy loves dong his homework. And he always hi fives with so much joy when he is able to do something. He is still trying to achieve his milestones, but I have learnt to take a day at a time.

The downside though, is the couple of times we were admitted in hospital once he started school. He had very low immunity, so there were countless bouts of bacterial infections, and each cold would advance to pneumonia. Those were my lowest days, seeing him sick weighed me down. It still does. Thankfully, his immunity has improved greatly, and now he is fighting colds on his own. The bacterial infections have also reduced tremendously.  Jeremy is doing really well in school, and he is the darling of his class. He loves music and especially the guitar. And boy does he love dancing{ step back Chris Brown, you’ve got some serious competition!} Many people ask me where I get the strength because I have not broken down even once{though there were days I was at the verge of doing so}.  Ever heard of the phrase,’ God gives special children to special parents?’ Indeed he does. I would never imagine my life without Jeremy. He is such a blessing. He is the sweetest friendliest boy in the world. He gives the most genuine hugs, and kisses, and he literally says hi to everyone we meet on the road! I have never imagined, him being ‘normal’ as many people would term people without special needs. So, today I would like to encourage a parent, or anyone who has a special needs person in their family. Embrace them, love them, they are a blessing. I recently met a parent who has a special needs child as well, and he said something that is now my mantra: Don’t focus on what they cannot do, focus in what they can. That encouraged me. There may be good days and bad days, I agree, but being strong for your child is the most essential thing.  I had Jeremy when I was twenty six, and research sates that the prevalence of having a child with downs is higher in older women. So being strong was the only option.

As a country Kenya, we are still ‘not there’ when it comes to rehabilitation. Therapy is very expensive, not to mention speech therapy. I am a strong advocate for early intervention, because I have seen it work with my son. My prayer and hope is that someday therapy would be free to all, regardless of the class, or race.

Has this experience shaped me? Of course yes. I am stronger, I appreciate life more, and I do not take things for granted. Is having an extra chromosome a bad thing? Of course not!  It means extra, love, extra kisses and extra hugs.

For more info on Down syndrome, start with this link:

https://en.wikipedia.org/wiki/Down_syndrome

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2 thoughts on “Extra Hugs, Extra Kisses, Extra Love

  1. Almost 10 years ago, I gave birth to my second son with a condition called spin Bifida, it was a daunting experience for he had to undergo two operations in the first two weeks of his life. Like you i soldiered on with physiotherapy and my Leonard was able to achieve almost all milestones and today he is in class three in a normal school.
    Because spina bifida affects the spinal cord we have to live with catherization and bowel management for life.
    My comment is to thank you for sharing your story and also make an appeal for governments to support initiatives for disability in all sectors of the economy, it is only that way that a real inclusive kind of growth that the world through the agenda 2030 sustainable Development framework can be achieved.

    Like

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