Life As A Special Mom

I have recently taken a survey with KKH homecare nurses to assess the quality of life as a caregiver to child with special needs.

The sad truth is, the welfare of caregivers are often shadowed by the needs of the patients. Caregivers are silent heroes who speak little of their pains and sacrifices. No one talks about it at all! That is the reason why most people are unaware of what it's like. So come! Step into my world today and take a glimpse of my life (currently it's equivalent to no life) as a special mom.

Typically I work round the clock, 7 days a week. I get an average 4 to 5 hours of disrupted sleep and I take 2 meals a day (sometimes it's down to just 1 for various reasons but proper meals are substituted by bites on the go). Below is how a fuss-free (w/o sickness and hospital appointments) day with C is like:

7.30am     Suction C (as required)
                   Milk for C with half-hour rest

8.00am     Sanitize C's mask before storage

                   Clean suction machine

                   Top-up water in humidifier for next usage

                   Light chores

8.30am     Get C and myself dressed

9.00am     Out with C to do marketing

                   Stroll in the park

10.00am   Unload and sort out groceries
                    Bathe C

10.30am   Milk and massage for C

11.00am   Food preparation, cook

11.30am   Getting C ready for nap

12.00pm   Blend C's food, store for consumption later

12.30pm   My brunch, me time and chores

2.30pm     Meal for C

3.15pm     Play with C (train gross motor, cognitive)

4.15pm     Cartoons for C (R&R), exercise

5.30pm     Milk for C, self-play

                   Occasionally cook for family

6.20pm     My dinner

7.00pm     Bathe C

7.30pm     Time with children, chores

8.30pm     My shower time

9.00pm     Suction C

9.15pm     Milk for C

9.45pm     Prepare humidifier, BIPAP machine, oximeter

10.00pm   Put C to bed

10.30pm   Chores (if any), me time

12.30am   Alternate sensor probe on toes

(Between 1am to 7.30am -  Light sleep for me. Wake from time to time to help C flip to his sides, need to check on C whenever the machines' alarms are set off)

3.30am     Alternate sensor probe on toes

                   Milk for C if demanded

5.30am     Turn off humidifier

7.30am     Wake up

Between these, I would need to squeeze in time for machine & parts cleaning (there are filters to change, pipes to sterilize, containers to wash, parts to change weekly, machines to be serviced), maintaining this blog, raising funds for C, running errands & managing online sales, hospital appointments, social life (or rather, what's left of it). How crazy is that?

What I have written is just the physical demands for taking care of a special needs child and frankly, C is yet to be fully dependent on machine support and this is already the amount of work and time devoted to him. Other families are probably doing much more.

I hope the next time you spot a SN child, spare a second take another look at his caregiver, admire them for they have made sacrifices beyond the imaginable. Lend a helping hand for a simple gesture e.g. holding the lift/door makes their day :)