The Stories behind our unique journeys

By FAITH E. OYELLA

The Will, Passion and Gains! My story

August 21, 2014 God blessed me with two wonderful sons – Joel and Jesse. Their birth was an answered prayer, I always prayed to God to bless me with twins and he did.

Joel and Jesse 5 days old

The boys looked so much alike even though they were fraternal that it was very hard to distinguish them: round faces (what I later learnt to be described as Mongolian face), small ears, very soft.

A day later, the nurse from the incubator asked me, “Do they look like their father?” and my response was “No! They look like themselves”, little did I know that there was more to this question than it would meet the eyes. A nurse standing by whispered in response “they look like they have DS”. I immediately asked, what is DS? “It is related to heart defect”, the nurse replied.

I became very anxious, that I decided not to inform my friends and other family members about the birth of the twins except for my mother, husband and two of my immediate siblings.

After discharge from the hospital, I began researching on Down’s syndrome, the causes, early intervention initiatives, and I discovered other related medical conditions.

I later visited a pediatrician to understand the magnitude of their condition, who assured me, “You should be grateful that you have three normal children, these two because of their condition their milestones will be affected; they may never be able to attain several milestones!”

At this point, I felt my entire world was crushing down. The doctor advised me to seek for some therapeutic support after six months- six months was so so far away, at least for me.

The following morning, I just left for another hospital and requested for a heart test to know their heart condition, the results confirmed my fears the first twin (Joel) had a tiny hole in the heart which healed after a year and Jesse the second twin seemed normal but the doctor advised to do a confirmatory test after six months to rule out anything.

What preceded this visit was a battle I had to fight; I would resign from my position as the CEO of a re-known NGO to give full support to the boys; and I decided regardless of the doctors’ reports, I would raise the boys to be normal and independent.

However, the fear of the unknown soon led to anxiety, stress, sadness, bitterness, I drunk to sleep and struggled with my memory and everything else I used to do with ease.

One morning I thought to myself, Faith you need to check into a rehab and that’s when I called up a friend to recommend one. She said really! I don’t think you need that but if you must see a psychiatrist then that would be Butabika hospital (Psychiatric hospital).

I visited the hospital and talked to a psychiatrist who confirmed I was going through depression and prescribed antidepressant pills to take while attending counseling services for a period of six to nine months.

I came to terms with my reality; the twins became my purpose for living. The months that followed I dedicated to, doing personal research about Down’s syndrome, conducted several tests, spent several hospital nights treating pneumonia and ear infections,  all this was becoming expensive and unsustainable,  I resorted to watching You-tube video recordings on early intervention support,  bought books and videos and based on the knowledge acquired I started managing their dietary needs, daily exercises, Including the gym for a treadmill exercise of 5 minutes for a couple of days, enrolled them to a kindergarten and daycare center at 18 months, since the center only admitted children who could walk, their admission was on condition that there was a helper from home, I offered to attend with them.

Back home, I availed a number of play objects, sand, exposed them to outdoor activities, and provided natural environment that stimulated their learning and development, by 24 months they could sit, crawl, walked with difficulty, socialized, understood most of the things around and bubbled a few words; “bye”, “ball” and “fine”. Today they are very passionate and adventurous boys.

Joel and Jesse at 7 years

This has been a life changing journey, with lessons learnt and a desire to do more for children and mothers of children living with intellectual and developmental impairments.

I went back to the university and did a Post graduate diploma in Special Needs education to acquire more knowledge and understanding on how to support their education.

In addition, the boys are involved in a charity initiative geared at helping them to reach out to other less privileged children in the community; we collect items from friends, family members like toys, clothing, food items and share with children at the orphanage during their birthday celebrations every year.

This has been our  amazing journey. We would love to hear your experiences on this journey.