Category Archives: Projects
The last third of the year can become unenjoyably busy for our family very easily, with ten family birthdays and our anniversary sprinkled in among the bustle of Halloween, Thanksgiving and Christmas. So in 2016 Greg and I resolved to designate one day from each weekend in October, November and December as an “at home only” day: no outings, no plans, no chores and no to-do list. We called it a family Sabbath, although we first instituted this for practical reasons and our own comfort rather than as an effort to obey the religious guidelines of Sabbath keeping.
When we first decided to implement this in October, I breathed a sigh of relief, knowing that we would benefit so much from the rest this boundary around our schedule would afford us. There was one problem though. The only date that worked well for Rowan and June’s joint birthday party fell on the same weekend that the huge Lego tour would be in town. The Lego event that Rowan has been asking to return to since he saw it the last time it came to town two years ago. The one I had been excited to take the kids to for months.
We looked at three different scenarios: attending an abbreviated weeknight Lego session, packing the Lego fest in on the same day as our at-home birthday party, or breaking our Sabbath guidelines and attending the beloved Lego event on the second day of that weekend. We decided to break our new rule and go to the event on the second day of the weekend. After all, we made the rule so that we could enjoy the holiday season more fully, and we knew we would all enjoy the Lego fun. This never sat right with me though. In seasons past when our busy-ness sapped our strength and joy, our schedule was (over) filled with fun, enjoyable things- no drudgery; yet the pace still wore on us. So I sensed that breaking our Sabbath boundary to avoid missing out on something fun and enjoyable was not going to work at all. I knew that every single weekend during this festival-and-party season, the prospect of something fun, memorable, important or educational would beckon to us, asking to be dropped into that emptied Sabbath calendar square. Still, I persisted. I told myself, “We’ll go to the Lego fest this one time, then that’s it- we’ll protect a Sabbath day each week through the end of the year.”
Two days before the big weekend, I went online to secure tickets. I had delayed, at first, because we were throwing around our scheduling options, and next due to reluctance mixed with a delusional belief that the less popular time slots wouldn’t sell out. In reality, all of the time slots for this hugely popular, once-every-two-years event sold out long before I got around to checking on tickets. So we didn’t go. After the excitement of their birthday party, the kids never even asked about the Lego event that weekend. They still haven’t- it just hasn’t come to mind. While I’m sure the event would have been a blast, I was surprised that there really was no sting in missing it. And we had a very restorative day at home instead.
That first experience illustrated to us the immense value of rest, and it revealed that the one obstacle that most often robs us of rest- the fear of missing out- is actually not a very formidable foe; it turns out that the thing we feared- the phantom prospect of missing out on something- never materialized at all. True, we did not attend the Lego event. But during our peaceful unplanned day spent at home, we did not miss it either.
This is how we started to implement the principles of Sabbath as a family. We continued this practice of keeping one weekend day clear for the rest of the year. We have enjoyed it so much that we are going to continue it indefinitely.
A quick look back:
Unbeknownst to me, this Sabbath idea was percolating at the beginning of 2016. Last year began with a post about The Big Rocks: Self-Care for Care Givers, which describes prioritizing items in your schedule which are of the most value to you, then fitting in less important or unimportant tasks around those big rocks. It seems as though the rest of last year was a slow, progressive implementation of that post as our family pared down our schedules and our possessions. That was providential because 2016 was indescribably stressful for me, with so many people, opinions and mistakes thrown into our well-established routine via the Medicaid hoops, nursing SNAFUs, invasion of our introvert sanctuary, the start and shuffling of twice-a-week therapies, the transition from ECI to the school system and ongoing nursing and Medicaid difficulties. This “Big Rocks” process of purposefully stewarding our time and energy protected my sanity last year. At the same time, I was completing an intensive spiritual discipleship program through our church which introduced me to the works of CS Lewis and other gifted Christian and Jewish theologians. As I studied, the themes of prioritizing my time and resources and seeking rest stood out to me, given my stress. Naturally this led to the study of the Sabbath, with is prominent in the Jewish theology I ventured into, and which is the subject of the Bible study I ultimately finished the year on (Priscilla Shirer’s Breathe).
A look ahead:
As I mentioned in the last post, however, this attention to rest and Sabbath results in less blogging. Or no blogging. So, while I have many topics and resources I would love to share, posts in 2017 may be sporatic. If you ever wish to check-in with us or ask a question, feel free to use the Contact button on the blog. We don’t expect any big medical changes for June this year, since she recently got her g-button out (WOOHOO), and her doctors want her trachea to grow for another year before re-evaluating options for another attempt at removing the trach. However, Greg is hoping to transition into a new professional field this year, so we are waiting to see what new adventure his school and career opportunities will bring to us as a family, in terms of our routine and location.
We are quite excited about the year ahead.
I didn’t know if my kooky idea for this quilt would work at all, because in order to do it, I had to try some unconventional techniques and break a few sewing rules. First, I hand sewed a stack of irregular shapes at the bedside in a crazy quilting style because, first, I love that style, and secondly, it does not demand precision that I cannot maintain while sewing in the ICU with June, stopping and starting often and without using a table. Later I overlaid the irregular shapes with a fabric square with a heart cut out of the center to reveal the crazy quilted section below. Each crazy quilted section is built around a green frog fabric piece, because June loves Hopkins the frog from Signing Time. (And because I acquired lots of great frog fabric.) The hearts-and-crazy-quilting squares were sewed into 2×2 squares, and alternated with 2×2 squares of pink and the same frog-patterned fabric that the crazy quilted sections are built around. Then, much to my discomfort, June decided she wanted the quilt to be bound in dark blue, which is not located anywhere else in the quilt, but, hey, it adds an interesting contrast.
What worked: June loves the quilt. Also, using the negative space of the heart-shaped squares turned out just how I hoped.
What didn’t work: I mixed all types of fabric for the quilt including flannel, fleece and quilting cotton because I was working exclusively from my stash. This is dangerous because different fabrics react different to wear, tear and washing which can damage the quilt. But I wanted to try it anyway to test the limits of what I can mix and match from my large and varied collection of fabric of indeterminate type. The quilt held up surprisingly well after washing, although one crazy-quilted section did rip and needs repaired.
There has been a flurry of activity here in the Safari Household recently as we transition from our dino-mite summer back into our typical routine. Several posts are vying for very scarce editorial attention, and which one will triumph first is anyone’s guess. So in the meantime, I thought I’d share the topics of these posts which I hope to cover soon:
- Leaving Facebook- I left FB “for real,” as in deleted my personal account. I deactivated the FB page for this blog in the process, but you can still follow Yes This I Know on Twitter, Pinterest, RSS and by email.
- Continuation of the Nursing Saga- I reached my limit with dreading the nursing visits, and we “let one of our nurses go.” ***Joyously singing the Frozen song now*** Meaning I now only deal with one nurse visit per week.
- Crazy Heart Block Quilt– I am both thrilled and surprised that I finished this recently, just over a year after starting it while June was in the PICU recovering from her LTR (The project does not require anywhere near a year to complete; I say I’m surprised because I usually have to caplitalize on momentum to finish a big sewing project, and there’s just no momentum to be had on personal projects while parenting 3 kids under 5.)
- Special Needs Family Outings series- several posts about our travels and special needs travel decisions in general
- Reading- I’ve been in reading hyperdrive this year as a lot of varied topics have been important or intriguing to me, and unexpected connections seem to arise often between subjects or to ideas I’m mulling over at the time
- Homeschool Curriculum 2016-2017- homeschool planning posts are always exciting!
….and a couple of stragglers that might escape the drafts box onto the blog eventually. Maybe even a Quotes of the Day.
Parents of medically complex children handle reams of paperwork- that which we review, sign, and much of it we are given to retain for our records. It’s all part of our secret part-time job. My rule of thumb for filing vs recycling is that if it can easily be found on the internet or in books I own (ie vaccination info, first aid, general parenting advice), if it’s an easily accessible record such as on the hospital’s online patient record portal, if it’s legal form letters (hippa, liability, institution policies) or if it’s not likely to ever be an essential reference (dme packing lists), then I recycle them. This rule usually eliminates any information that isn’t especially helpful and specifically about June. This has helped me pare down significantly the files I retain, but it still leaves quite a bit. After not quite three years of using this system, these are the records I’ve retained- the “short” stack on the left is medical bill records, and tall stack of files is the actual pared-down medical data on June, and the spirals are my own notes from doctor visits and hospital stays.
I found that June’s records alone were taking up a whole file cabinet drawer. When I sat down to write a “concise” review of her medical history for a genetics consultation, I had to admit that at this point and volume of data, I needed to further organize it in order to make it useful.
Previously, I saved the medical bills in folders by year, which works well for the annual schedule of our flex spending, health savings, and taxes etc. But I kept all of the medical data in one folder (and then a second and then a third) filed chronologically, rather than splitting it all up by institution, year or subject. The reason for this bulk file approach, besides not having toddler-free time to work on filing systems, is that for a good portion of June’s early life, every service, specialty, and institution was delivered inpatient. If I were to break it up- would a dermatology consult while inpatient go in the hospital file or a specialist file? Would g-button instructions from the hospital go in a hospital folder or in a surgical info folder? Would g-button instructions from the DME company go along with those hospital g button instructions (wherever those end up) or with the DME file, or with the hospital file since we received them while inpatient? On and on and on. So I just put everything into one file chronologically until that system became ridiculous, which is now.
I picked a hybrid organizational system for this data including a general medical data files separated by year- data which I further thinned- and specific files for organizations when they have enough paperwork to warrant it. So the tower of paperwork has been distributed among:
-4 files of general Medical info: 2013, 2014, etc which includes anything not in the folders below; this tends to include timeline-relevant info on June’s health including pcp, specialists and inpatient
-Speciality pharmacy for Synegis
-Speciality pharmacy for Lovonox
-3 files, one for each nursing agency we’ve had the misfortune of utilizing
-My notes spirals
-Surgery photos, pictured below. This includes her two trach placements, g-button surgery, larygotracheal reconstruction, a lot of bronchoscopies and various minor sedated checks and OR procedures, with each procedure netting between one and three of these surgery photo pages.
The files are all manageable and easily referenced. I think this system will serve us well for a while, which is good given that it took me a year to finally sit down and cross this off of my to-do list. And the motivation for it- writing the “concise” review of June’s medical history- was well worth the effort. Doctors are using to try to draw connections between her varied symptoms and history to see if a genetic syndrome might be present, despite no clear diagnosis from the exome sequencing. But just as valuable to me is the fact that I have a copy of it in her medical bag and can quicky give any new professional a concise but thorough history of her so they can have a complete clinical picture.
The last month and a half has been difficult. It’s not the kind of difficult that needs fixing, it’s just one of those periods of rough transition that inevitably comes and must be weathered in order to emerge with the tools you need for the next season. I call this a ‘desert time,’ referring to the many times in the Bible that God led people into the desert for a period of difficulty and growth, like Abraham, Moses, Elijah, David and Jesus.
Factors in the mix include:
- the kids’ adjustment to the new baby- which brings emotional and behavioral parenting challenges despite the fact that they are both in love with their little brother
- our family’s adjustment to June’s ongoing and changing medical needs- which also brings emotional and practical routine changes for all of us constantly
- a few recent emergencies and hospital trips with June (which all resolved well)
- the irregular schedule that comes with a new nursing baby
- the difficulty of having energetic young children under the same roof as elderly dogs
- the need to adjust physical limits and teaching/discipline strategies as the kids’ abilities and independence increase each day, not the least of which is June being able to remove her pulse ox and HME at will (more on that soon)
- the kids’ love of “sensory play,” and the soap, water, pom pom, toilet paper, cereal, coin, fabric, dirt, paint …. messes that result, often as a surprise discovery for me due to the previous point
- never-ending adventures in potty training ‘interest’ from the kids that I *try* to patiently encourage and help them with, but that doesn’t seem to be developing into actual training
- the typical holiday busy-ness with related events and tasks (though seeing family and friends was a very welcome treat)
- time spent launching my baby sign language business which was time well spent, but definitely a tight fit into our schedule and routine
- the normal end-of-the-year paperwork for the house, taxes, insurance, banking, career, etc.
This month and a half I’ve been mostly praying a variation on a specific part of the Lord’s prayer- “give us our daily bread-” by praying for manna for the day. By prayer I mean words mumbled with a palm on my face when the newest parenting challenge presents itself, as an alternative to breaking objects out of frustration- not prayers done formally during a serene, set-aside time. This is a reference to the Old Testament when God provided daily food- manna- to the Israelites every morning in the desert, but only enough for that day or that day plus the Sabbath. Similar to my favorite slogan, “One day (or hour or minute) at a time,” I find it comforting to focus on God’s provision for the current needs, even if the future needs and provision are unknown. And, like manna, I’ve had just enough energy and patience each day during this time to compete the bare essentials.
But I think and hope the ‘transition’ period is over and the ‘new season’ has begun.
A few tools I have emerged with, and have big hopes for, include:
- Prayer/meditation/alone time which I strive to capture once a day
- Continue to prioritize my own self-care and non-parenting activities like seeing friends, being involved in several church activities, and learning sign language
- Toy rotation (see this wonderful series on it)
- Rotation of the chore magnets, so that the often-skipped chores move up in priority the longer I avoid them
- Updated homeschool schedule– we’ve been pretty unstructured so far, which I feel is a good fit for the kids’ ages. However, I think a little more structure will help curb the conflicts between the kids and the surprise messes.
- Reorganization of several common “problem areas” of the house, which are no longer functional or which aren’t a good fit for the kids needs right now
- Expanding the use of “toy jail” to include temporarily losing toys that aren’t picked up at the end of the day
- Rehoming my sweet dog, Sahara, with my parents, perhaps temporarily until her hip problems and the kids’ spontaneity aren’t such a dangerous combination
- Playdates or outings- I plan to try my best, but it may not result in many trips because of our need to keep June away from sniffles/coughs, our need to be near to June’s medical equipment, June and Miles’ sensitivity to cold air, and having to work in/around June and Miles’ feedings
- A part-time return to cloth diapering, which I love but I avoided when June was young due to her health; I hope it will help with potty training and the challenges of having three kids in diapers
- Breathing. I’m surprised how often I catch myself nearly holding my breath when I’m stressed. Seems like breathing is good. I’d like to do more of it.