It's okay to cry....the heartbreak, the tears and the reality about Down syndrome

After the news that she was born with a genetic condition, I felt my whole world was over.  I felt I would not be able to say to people...meet my daughter.  

Religion and society would not think of me as a mother. Religion may take me up and tell me to my face that I must have disobeyed God while society would blame me for either refusing to terminate the pregnancy or not being too careful during the course of the 9months journey.

Why play the blame game when the child has been born.  Just today, as I do like to visit families with a newborn diagnosis, I visited a new mother with a 6weeks old and she mentioned she searched for poison to take her life and felt depressed every time she woke up to see what had befallen her baby and family.  

I remember our first few days , weeks.....the heartbreak and how I got a high blood pressure and was rushed to the hospital when she was barely 2weeks old.  I thought about so many negative things, google made it worse, some information were scary and my heartbeat raced each time I went on line.  I cant explain the feelings...so you may see me smiling then but I actually was acting and loosing my mind. I felt like a looser.....someone could just ask me a question like.\" Show me your princess even though she is sitted near me but they are thinking she isn't mine\".

I grabbed the baby in my hands today and on the doctor's report was written \"Failure to thrive\". Ok, it shook me for a while, I was sad and close to tears but the  mum was crying already and she just clocked 30, her first child. because this might mean a heart disease secondary to Down syndrome.  I've had my own share but I prayed and wished innocent children won't suffer like this.  

Cut.

What to do with a newborn is to ensure the baby is feeding well like every other but medical issues like hole in the heart.(.I hate those words ..).are of great concern.

At this point, we get a referral to the paediatric cardiologist, opthalmologist, ENT....then heart surgeries..and other surgeries or a miracle happens...and then the baby waits to live or die.

From that age, the child needs early intervention. After medical issues have been sorted. You see, the rejection drives me crazy.  It's not wise looking for whom to blame or a permanent cure.  Some people don't bother spending to help their child because that would never take away the features and Down syndrome itself. So the children are left to live with whatever co-morbidity or co-existing condition some of which could be austism then bang! you have the dual diagnosis ( Do we still say God forbidden?) .

During my home visitation in 2014, I was well received because the first three years are crucial and people do run from pillar to post seeking help from wrong sources. I had no one to run to 7 years ago, everyone his their child at home. The therapies delivered in the first year aids development, bonding and a remarkable difference is seen as the child gradually hit his milestone. We sure do take it...one..day..at..a..time. Its sometimes a long wait.  Oral motor activities, physical and occupational therapy are as important as the air we breathe.

Having had hands-on training with my child when we made the decision to leave the country as we didn't get help, I have invested my time in finding out ways to improve other children's lives. Teaching them to attain independence and to communicate starts from that age so I train parents on how they can help the child at home. At the foundation, we ensure children enjoy all therapies, including music,  arts and craft, dance, sports, vocational and education.  It's true that they can be mainstreamed but not all are educable and the truth of the matter is they should be able to live very close to normal lives or better lives, hold jobs etc.  This doesn't happen magically, because of the developmental milestone delays with speech, communication, eye-hand coordination, cognitive disability, intelligibility disability, impaired hearing, poor fine and gross motor skills development, infections , the commonest , which is nasal congestion, ear infections, enlarged adenoids, tonsils causing sleep apnea.  All of these and more for Down syndrome alone????  It's too much to fathom sometimes....so we take it \"A day at a time\" and it's okay to cry sometimes so we can heal and get the strength to keep working.

People with DS have unique abilities which we have seen over the past years. We are setting up a rhythm and dance class for children with additional needs.

We teach the way they learn if they can't learn the way the teach. They come from a happy disposition and all we need do is accept them.  We go for walkathons, dancathons and door to door awareness drive to enlighten the community.

I am a happy to see them thrive and to spread the news far and wide.

Thank you all for feeling my pulse.

Tola