The Origins of MiMi’s House and CRSS

If you drive up Midgard Avenue in Saanich, you will drive by MiMi’s House, probably without noticing any particular difference between it and the other residential properties along the street.  You may get a glimpse of a van that is wheelchair-accessible and of the awning of a wheelchair-accessible swing out in the fenced yard, but little else aside from the beautiful parent-made MiMi’s House Sign at the doorway gives any indication that inside is a specialized care facility.  What you would find inside–beyond a typical living room, recreation room and kitchen–are four specially equipped bedrooms and a bathroom outfitted with a hydraulic lifting bathtub with ceiling tracking for a sling running from the tub area to the nearest bedroom.  But more importantly, and the point of it all, you would find four very special children and the very special caregivers who look after them while their very special parents enjoy a weekend of respite from the daily demands of their children’s care.

MiMi’s House was born out of crisis–a crisis for the children and families who were already all too familiar with crisis in their personal and family lives.  These children were among the most medically fragile and vulnerable children in the Greater Victoria area, and the demands of their continuous, 24-7, care was largely left to their parents and other family members.  Caregiver burn-out was understood and expected, and to give them a break, five beds in the Todd Wing of the Queen Alexandra Centre had been allocated for respite care.  But on September 17, 2002, families of the children receiving this respite care were notified that respite care at the Todd Wing would end with no arrangements made for the provision of respite care at another facility in our community.  This impending closure was an undisclosed consequence of VIHA’s redesign plan tabled earlier, in April, 2002′

For the affected families, their ability to continue providing care to their children hung by a thread, and the respite care at the Todd Wing was that thread.  At home, they had learned to care for a child who might never be able to walk, or to talk, or to see.  They had learned to manage feeding pumps, oximeters, trach-vent systems, catheters and insulin injections and to administer a host of medication for seizures and other serious medical issues.  They were experts in the hour-to-hour, day-by-day care of their children, to such an extent that nurses and doctors relied on their specialized knowledge of their children.  But many of them were beyond burnout, having to cope with chronic sleep deprivation and fatigue, stress and exhaustion, and the challenges of having also to navigate the additional demands of marriage, the needs of their other children, and their work.  They struggled to find some shreds of normal family life.  But, as they would soon read in the local newspaper, they were said to be “lucky families” because they had somehow managed to receive respite at the Todd Wing.

They were lucky!

Lucky to live in Canada, in BC, in Victoria.  Lucky for having their family and friends.  Within hours or days or weeks of the births of their children, as the word spread of their plight, these parents soon found just who were their ‘fair-weather’ friends and ‘fair-weather’ family members and who were their ‘foul-weather’ friends and their true family.  They were lucky for the love and care that they and their children would come to receive from the ones who stayed close to them.

In a very strange and seemingly incomprehensible way, they learned that they were lucky to have their very special children.  Life with their children had opened a door that the parents would not have dared to imagine beforehand nor willingly choose to go through.  But once through, they came to experience and value their children’s essential and unique humanity: their children’s patience and at times their rage, their gentleness as well as their stubbornness, their capacity to love and their receptivity to being loved.  In the simplicity of their being, their children showed to them the clearest evidence ever to be found for the existence of the human soul.  For all of that, the parents were lucky.  They were blessed.

But they had to fight.  Losing respite at QA was a blow that they couldn’t absorb, so they organized and fought back, first individually, then as a group.

After the shock of the September 17 notice had subsided, the affected parents–23 families in all and largely unknown to each other–began to reach out to each other to check facts, to vent their anger, and to plan a response.  On October 17, the parents held their first meeting at the Pearkes Multipurpose Room.  Informally identifying their group as Parents In Crisis (PIC), they met on a weekly basis through October and November.  Representatives of the group met with VIHA administrators, MCFD administrators, the Queen Alexandra Foundation administrator, and local MLAs.  Interviews were taped with various broadcast media–the Times Colonist and Victoria News and Saanich News.  Letters explaining the circumstances of the impending closure were sent individually by fax to relevant BC Government Ministers and MLAs, to all of the VIHA Board of Directors, to all of the pediatricians in the Greater Victoria region.  A request to give a presentation at the quarterly VIHA Board of Directors Meeting was made but denied by the Board.

Meetings began with MCFD administrators.  The intended November 16 closure of respite care at the Todd Wing had been forestalled, and by December 6, MCFD administrators had begun to acknowledge the need for “another staffed resource.”

The focus then became how to bring this about.  Anscomb House at QA was identified by the parents’ group as suitable and immediately available.  In December, 2002, and January, 2003, the parents’ group continued to press for interim respite care at the Todd Unit and for no loss of funding for the new staffed resource.  By mid-January, the parents learned that the BC government was opposed to siting the resource at QA, either at Anscomb House or the Todd Unit, maintaining that it needs to be ‘in the community’. Meanwhile, interim respite care continued at the Todd Unit.  The parents’ group continued to meet regularly every one or two weeks, and representatives were chosen to correspond and meet with VIHA and MCFD administrators, to press for the continuation of interim respite care and the creation of a staffed resource.  By the end of January, the parents were told that a “Request for Proposals” (RFP) was being finalized by MCFD.  By early, sites in the community were being identified.  The parents learned that the proposed facility would operate for three days a week, rather than seven.  It would be limited to four beds.  By mid-February, MCFD had developed a short list of properties to be considered for purchase.  In early March, the parent met with MCFD-CLS to press for interim respite care and for the staffed resource.  An RFP draft for service providers was prepared for review, and the house acquisition process moved forward.  By that time, the original 23 families had been reduced to nine.  The parents’ group advocated for inclusion of more children and families than those presently affected–inclusion, for example, of the families on the CLS waitlist.  Pressure was maintained on VIHA not to reduce the funding for respite care to MCFD from what was previously provided for the Todd Unit.  By March11, a CLS respite planning was held to review the RFP for service.  The RFP went out late in March, and interim respite was assured to be provided until the end of August.

At the end of March, the Earlston house was viewed as the most favorable by CLS and the parents, and the house was purchased in early April.  The RFP closed April 24, a short list of service providers was drawn up, and interviews were scheduled for the end of April.  In early May, Centaine Services was chosen as the service provider, and plans were made to add a fourth bedroom to the Earlston house, as well as to bring it up to code for a respite facility.  Possession of the property occurred on June 1.  By late May, the admission criteria for MiMi’s House were drafted for discussion.  Construction on the house progressed throughout the summer, while Centaine Services hired staff for MiMI’s House, many of whom had previously worked at the Todd Unit of QA.  On October 8, MiMi’s House opened.

Meanwhile, the parents’ group, PIC, incorporated itself as a registered society, Children’s Respite Suupport Society, on September 12 and became a registered charity on December 17.

The purposes of CRSS are,

  • To augment the provision of respite care for children in Greater Victoria through fundraising,
  • To act as an informational resource for respite care for children in Greater Victoria,
  • To work to improve respite care for children in Greater Victoria by coordinating programs with other societies and agencies with shared interests.

To be clear, CRSS provides no operating funds for the care given at MiMi’s House.  Thompson Community Services, Inc. has assumed the provision of care given at MiMi’s House under contract with MCFD.  The house itself is the property of the Crown, owned and maintained by the BC Housing Authority.  CRSS has used the donations it has received to carry out many projects over the years to improve the care given at MiMi’s House and the enjoyment of the children during their stay there.  CRSS funding for its projects has been raised from,

  • individual, group and website donations,
  • a benefit concert at Alix Goolden Hall,
  • a Ronald McDonald House Charities event,
  • a WestJet Ticket Raffle,
  • and many voluntary contributions of time and labour given by MiMi’s House parents and CRSS members.

The above material has been exerpted from a presentation given to the Capital Unitarian Universalist Congregation on February 26, 2017, by Charles Card, Secretary of CRSS