When I first started sharing the vision of Lucas House as a place of “respite” for children with life-threatening conditions and their families, I found often that people weren't familiar with the word "respite". The formal definition is as follows:
Respite: a short period of rest or relief from something difficult or unpleasant.
synonyms: rest, break, breathing space, interval, intermission, interlude, recess, lull, pause, time out
I love Lucas with all of my heart and never see him as a burden. However, sometimes his condition of Lissencephaly gets overwhelming. The moment we get comfortable with a symptom, something changes and shatters our sense of security and normalcy. A chance to recharge and renew become essential to be the best mom, advocate and caregiver for Lucas.
I want to take a moment and share what respite means to me as a parent of a child with a life-limiting prognosis. Respite means taking a short break from our daily routine of around-the-clock care for Lucas. Lucas needs total assistance in all aspects of daily living. Respite means reconnecting with my husband. Respite means having one night of uninterrupted sleep and waking up feeling refreshed and ready to tackle the new challenges of the day. Respite means connecting with my other child and having that special one-on-one time. Respite is essential to help prevent burnout and family disintegration. Respite care becomes a necessity, not a luxury.
Through our amazing journey caring for Lucas, we found a huge gap in one area of care; respite or relief care. Most often finding a care-giver to give overnight or multiple-day breaks needed is not attainable because of the specialized amount of care required. Hiring a babysitter isn't an option. From our personal experiences validated by hospital administrators, doctors, therapists, nurses and parents, we realized this is a service needed right here in our community and surrounding regions. Through our research, we found that some parents have no other option than to bring their child to the hospital to find the respite they are desperately looking for. Lucas House will fill a needed gap and be a much more cost-effective option.
Lucas House will be following a proven model of care that started over 35 years ago in England at Helen House. With George Mark Children's House and Ryan House as our US models, Lucas House will be a place where children of Idaho and surrounding regions with life-limiting conditions and their families can come and receive respite and palliative care, and as needed, end of life care.
I know first-hand the incredibly positive impact Lucas House will have on our community, state and surrounding regions. I look forward to the day Lucas House opens its doors and provides unique, innovative and compassionate services to children and families!