Every human being may have some days which seems heavier than others, however for parents of children with disabilities especially in Ghana, some of the heavy days may seem more pronounced and visible.
Sometimes thoughts about ‘tomorrow’ seem to
be screaming which can easily make one bow to depression
I am a parent of a 12-year-old living with
cerebral palsy in Ghana and I share with you in this article how I deal with
the days that seems heavier than others.
Usually, the heavy days starts with what I
will call a realistic but unnecessary thoughts about my child’s condition and
situation and if I do not catch myself off guard it turns into a spiral thought
of unnecessary questions which do not have immediate answers.
For instance, I woke up one morning and after
bathing my daughter and helping her with the needed morning routine, I thoughts
to myself, “aaaah Eyram by now should
have been the one helping with the chores and even supervising her siblings,
then another thought of when will it end and will it even end followed, soon, I
felt teary.
What has helped me greatly not to continue
in depression for even up to an hour a day is my routine gratitude meditation
that I practice.
I cultivated the habit of asking myself “what
am I thankful for in these moments” and usually the answer to this question
always lightens me up.
I am thankful that Eyram (that is my
daughter’s name) is a very beautiful and intelligent young girl, full of
laughter and grits, I am thankful that Eyram has always survived the hardest days,
and I am super-thankful for the woman I am and becoming.
The
lessons from nurturing Eyram have been enormous, I can never deny that
Often, I will ask myself how I could have developed
this much level of empathy, self-love and self awareness, if not for her.
I also combat such strenuous thoughts with
what I will call a “holy anger” it is not an anger to self destroy or cause harm
but an anger to build a formidable support system for myself.
It is during those heavy days that I am
more than convinced to turn pain into purpose and use my skills as a
professional communicator to advocate
Ghana has no practical corporate support
systems in place for families like mine. There may be some scattered and uncoordinated
support system for certain disability types but for a child with moderate to
severe cerebral palsy, families are usually on their own except for some form
of private support systems from entrepreneurs which usually tend to be extremely
expensive for most families.
Usually
“my holy anger” will push me to ask pertinent questions like, how can I help
others like me, what can I produce, what services can I offer?
One of the suggested policies, I have
offered is the institution of a caregiver training programme supported by
government to help families at the household level access a non-family caregiver
whose services will offer respite to the family of a child with disability.
Such a caregiver programme will not only
serve the families of the children or persons with disability but will also
serve as an employment avenue for the teaming youth who have had education but
are unable to find jobs.
I always say and continue to say that
caregiving is decent work if we pay attention to it and put in place the
necessary modalities to make it work.
I continue to share my experiences because
I believe that no family should walk this path alone, the reason for birthing
the Inclusive Family Alliance - a community platform for parents of children
with disabilities in Ghana
The Inclusive Family Alliance offers tailor
made information pack for families needing help in where to seek support.
The Inclusive Family Alliance engages in peer
mentoring, coaching and counselling for families of children with disabilities
in Ghana in addition to advocacy and policy work
The change we need for families of children
with disabilities begins with you, join the campaign.
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