There is a kind of relentlessness to running an ICU in my home that can become overwhelming. Day after day, night after night, Levi’s needs are a continuous cycle. It doesn’t take much for the intensity to rise. Sometimes it is as simple as a change in the schedule of caregivers who come into my home. One less night of nursing help becomes three consecutive “parent nights”, where Mama and Papa split the overnight shift. An evening without a PCA (personal care attendant) during dinner and bedtime, means I juggle the needs and routines of both boys.

The first thing thing that gets relinquished is our routine because it simply isn’t possible for me to be in two places at one time. The amount to which we can share parts of our routines, like putting on pjs and bedtime stories, depends greatly on Levi’s medical needs and how much energy Younger Brother has for cooperating. Like most little boys his age, giving up his Mama time at the end of a long day doesn’t always go so well. I can’t say that I always do well at remembering this and being grateful for his neuro-typical emotional expressions.

Come morning time, no matter how much sleep I have had or lost, the continuous cycle continues. With Younger Brother in preschool half of my week is about driving him while trying to squeeze in a grocery store run on the way home or a trip to the pharmacy to pick up Levi’s medications. At home the rhythms of cooking, dishes, cleaning, de-cluttering, laundry, and bathing are all added to the running of Levi’s ICU.

These overlapping cycles leave me with little room to pause and take a few deep breaths. Without this there is no place for reflection and contemplation. There is a lot about my life that I would like to do differently. Changes in our daily routines, ways we celebrate the holidays, how I manage Levi’s ICU and therapies… Little changes that could have a profound impact on our quality of life and the ways in which we relate to one another.

This is why I leave home once a month.

To rest and catch up with myself so the patterns of stress and fatigue can unravel. To breathe deeply so my communication with the Lord can be given a more focused attention. To reconnect with my husband so our relationship has space for nurturing. To pause and reflect upon how we can make the small adjustment that will improve the rhythms of our family life.

We call this leaving home Respite. It took us four years after Levi’s birth to take our first respite break. It was our 10th anniversary and 24 hours away was the most we could comprehend and coordinate. That first breath of fresh air was so pure and cleansing. The unraveling of our stress was profound. We had no idea how taxing it was to run an ICU at home and care for a (then) newborn sibling. Upon our return we decided since the “big” 10 year anniversary trip was completely not possible in our lives (logistically and financially) we would take a series of one-night trips over the course of the year. Collectively they would become our “big” trip.

By the time we reached our 11th anniversary Levi was 4 1/2 years old. He had far outlived any prognosis. The fast-sprint we were running to manage his therapies and ICU-level medical needs had become a marathon. We had to develop new strategies to care for ourselves and our family. This realization gave us the courage to take our first weekend respite. A whole new world opened up for us. Our respite expanded beyond pure sleep and into the realms of self-care, contemplation, and small critical changes that improved life for the whole family.

By our 12th anniversary we committed to leaving home once a month. The cost of which has become equal to that of a SUV/car payment. My husband has to work lots of extra jobs as we scrimp and save all month to make it happen. Both in dollars and in caregiver time for Levi. Having round-the-clock care for him during our 48 hour respite is no small feat. Thank God for my mother who lives close and is active enough in her 70s that she can take Younger Brother for the weekend.

These respite breaks have become a critical part of our strategy for running the race with excellence while being able to endure the realities of a marathon-life.

Most of my friends who are also parenting medically complex kids do not get to leave home. They do not have the combined resources of time, energy, caregivers and family to take these critical breaks. Respite is not something our children’s health care or county resources will pay for. Meanwhile parents are being asked to work longer hours than any nurse / doctor in any hospital. The risk of medical error is great, as is the risk of the parent’s own health and well being.

If there was one wish I could make this New Year, it would be that Crescent Cove’s respite and hospice home for kids and families would become a reality. We as a whole community need to give our time and treasures to make it happen. We need to rise up together and say this matters. We need to provide for the most vulnerable children among us and their parents.

Our six-year marathon-life with Levi’s ICU level needs is not something we could have predicted or prevented. It just came to be in our lives.

Will you join me this New Year in supporting Crescent Cove?

MamaShu.org is a place where Dannell Shu contemplates the realities of parenting a child with a life limiting condition. 
Join the conversation on Facebook. The Facebook link to MamaShu.org is https://www.facebook.com/Mama-Shu-740465396055736/?ref=hl

Blog Posting by Dannell Shu

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