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Caring at Christmas: '24: The number of hours I work per day'

When it comes to numbers, the number attached to my age isn’t important. There are, however, some numbers that are very important to me, writes Tracy McGinnis.

Tracy McGinnis Special needs mom, writer and advocate

IT WAS MY birthday recently. Let’s just say I’m 39 again.

Some days I feel 25. Other days I feel 105.

When it comes to numbers, the number attached to my age isn’t important. There are, however, some numbers that are very important to me so I’ll list them here for all to consider.

50: The number of days Brendan Bjorn has been bedridden due to his pressure sore opening back up for the third time this year.

104: The number of days so far this year that Brendan Bjorn has been bedridden in total due to that pressure sore.

2: The number of days Brendan will be in overnight respite at LauraLynn starting tonight while Declan and I spend my birthday away for a couple of days.

15: The total number of nights I get off per year via respite at LauraLynn Children’s Hospice.

0: The number of in-home respite hours I’ve had in the past 5 months.

24: The number of hours I work per day.

7: The number of days per week that I work.

0: The number of retirement pensions I have to look forward to.

9: The number of years since I’ve been able to work in my professional career field.

2: The number of weeks I’ve been waiting for the county’s tissue viability nurse to ring me just to set the appointment to come out and examine Brendan’s pressure sore.

1: The number of days Brendan Bjorn has made it to school this school year.

30: The number of days since I rescheduled Brendan’s spinal fusion assessment with a promise they would ring me back that same day to reschedule, but with no word since.

6: The number of months since Brendan was placed on the “urgent” spinal fusion list, which is to be no longer than a 4 month wait.

1: The number of years I’ve been trying to find a suitable rental house via HAP that will fit all of Brendan’s special care requirements, but with no luck at all.

1: The number of years the boys and I have been stuck living in an unfinished, unsuitable, unsafe, unregistered house on the private rental market.

2: The number of rental houses I will go view today, again hoping to be selected for the crumbs of an insecure tenancy lease in what will obviously not be a forever, stable, fully suitable or modifiable family home for my boys.

1,100: The number of euros it will cost each month to rent one of the above mentioned houses (but this one actually has a wet room and a ground floor bedroom!).

3: The number of days until New Year’s Eve: A day I will set aside all of these worries; a day I hope Brendan’s pressure sore will be healed by so that he can be taken out of his bed and brought into the sitting room to watch his little brother around the Christmas tree. And a day I will focus solely on the gifts I have: my 2 beautiful sons.

Tracy McGinnis is a lone parent to two sons, aged 13 and 9. Brendan Bjorn (13) is severely disabled, medically fragile, and has very high palliative care requirements. She works 24/7 as his full-time (unpaid) carer, having had to give up her career as a professional child and family counsellor to care for Brendan. In her blog, Transitioning Angels, she writes about the journey of caring for a fragile child like Brendan. She is active in the special needs community in Ireland, working for reform in services, supports, and care for children with disabilities, and for their family carers. 

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About the author:

Tracy McGinnis  / Special needs mom, writer and advocate

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