Category Archives: Authenticity

Special Needs Family Outings: What Didn’t Work (for us) Part 2 of 2

Today we conclude the special needs family outings series with the second part of the discussion on what did not work so well for us (see part 1 here).  Here we’ll share difficulties we encountered during two of the most challenging travel situations we have faced: flying and handling a medical emergency away from home.

Special needs family outings What Didnt work

 

Flying With a Medically Complex Kiddo

June thought having her own airplane seat was pretty cool when big brother wanted to take a turn as mama's lap baby

June thought having her own airplane seat was pretty cool when big brother wanted to take a turn as mama’s lap baby

Two winters ago, our family made the unusual decision to fly across the country with the kids in the middle of RSV season.  My grandfather had passed away after a long illness, and it was important to our family to join the many people who were gathering to celebrate his life and honor his memory.  In order to do this, we faced many challenges including flying with very young children, having access to June’s medical equipment during the flight, and combating the risk of contracting a cold, flu or RSV in the cramped germ incubator that is an airplane.  One idea we had was to snag the first seat in our section, reducing the number of people we are close to.  That did not work, since we then had no underseat storage ahead of us, and we had lots of equipment to stow in arm’s reach.  Another bright idea we had was to be the last people to board the plane, so we reduce the amount of time we are sitting in stagnant air before the plane’s air circulation/cleaner system is operating (the internet said this was a good idea).  That backfired as well, as the plane was full to capacity and passengers were already having to check their carry-ons because the overhead storage was full.  Along came us, with 6 carry-ons which were all essential.  We stood awkwardly at the head of the plane isle while other people’s luggage was shuffled and checked to make room for ours.  And also so that we could switch seats with some very kind passengers in our section since our spots at the front wouldn’t work for us.  When we were seated, we discovered that the essential items we needed to have on-hand (oxygen concentrator, suction machine, and emergency bag) did not all fit under the seat in front of us, so one item had to be stowed above during the critical take-off and landing times, when we aren’t allowed to stand up. I waited very nervously for those few minutes wondering what would happen to me if June did have an emergency and I had to stand and take out our equipment during that critical take-off time.  Thankfully we had no emergencies on either flight. Lastly, on the flight back, which I made alone with the two kids, Rowan had a loud, one-hour melt-down during which we collected some stares, some sympathetic grimaces, and even some gold fish crackers that a compassionate mom brought to us from another section of the plane.  These things were all stressful, but not insurmountable.  Despite the logistic adjustments during boarding and the tantrum, the kids were fascinated by the flight and we had a really wonderful vacation. While Greg and I enjoyed seeing everyone and having dozens of extra hands helping with the kids, the kids learned about their great-grandfather’s amazing life, met many relatives, played in snow for the first time, and witness vehicles driving on lakes.

Vehicles on frozen lake in MN

 

Local Medical Care Is Inadequate (and everything else went wrong)

June, two days after an unproductive trip to the local ER, recovering splendidly and having fun on our road trip this summer.

June, two days after an unproductive trip to the local ER, recovering splendidly and having fun on our road trip this summer.

When travelling out of our own metro area, Greg and I always look up the nearest children’s hospitals in the event that June needs emergency care since most adult or non-specialty hospitals don’t have the experience and equipment to help her.  During our recent road trip, we were encouraged that we would be close-ish to *the* best children’s hospital for trach patients in the country (Cinncinatti Children’s). But when June developed a bad stomach bug, we were 5.5 hours away from Cinncinatti.  June was getting dehydrated vomiting every 30 minutes, so we decided to seek an IV at the local hospital while we evaluated whether we should make that 5.5 hour hike.  My sister graciously took Rowan for the day while Greg, Miles, June and I went to the hospital ER in the mid-sized city close to the relatives we were visiting.  As always, I warned the nurses that it is always very difficult to get an IV in June, and even moreso when she’s dehydrated.  So, I pointed out the only two sites that are successful for IVs 90% of the time, requested ultrasound assistance in locating the vein, and asked that they not draw blood from an established IV.  Some of the nurses were condescending and short with me, stating that they will use their judgment as professionals, and they proceeded to use sites other than those I showed (which failed), tried repeatedly without the ultrasound (which failed), got an IV with the ultrasound and then drew back for blood on it (which caused it to fail), and ultimately did not succeed in establishing an IV at all. The doctor prescribed June an anti-nausea medication which I refused because I knew from previous illnesses there is a life-threatening interaction between it and her heart medication.  The doctor also ordered a chest X-ray but discharged us before reading it. In short, the ER trip was a torturous waste of our time.  Thankfully, June’s vomiting subsided on its own without complications. But that was just the beginning of our misadventures.

In the hospital Greg and I ran down our cell phone batteries entertaining June and keeping family members updated. Miles and I left the hospital with plans to charge my phone in the car, pick up Rowan from across town then return to pick Greg and June up. But I discovered that my charger was not in the car; it was with the jumble of cords we had unpacked back at our lodging.  As I pulled away from the hospital, my phone died completely.  I didn’t have the address or phone of where Rowan was staying.  I didn’t have a map or GPS.  I couldn’t contact Greg. And after one or two turns on one-way streets, I didn’t even know where the hospital was anymore.  So. I drove in “boxes,” always turning right onto one-way streets to stay in the vicinity until I could find something I recognized.  Finally I recognized a street name, then a landmark, and then, by divine providence…Greg and June, who had exited the hospital and were headed for my former street-parking spot.  And Greg’s phone had 22% battery life.  So we rationed the battery to find our way to pick up Rowan and then to navigate to the place we were staying, 22 miles way.  We watched the battery life dwindle as we traveled the dark rural roads.  Near the end of the journey found ourselves on an unlit dirt road lined with 6-foot-high corn on both sides, and our headlights illuminated a fork in the road that wasn’t on the map. And then the phone died completely.  If the horror movies are to be believed, we just knew we were all about to be devoured by zombies.  I must add that despite the drama of it all and the danger involved (we were lost, without communication, in a deserted area with a sick, medically complex child), Greg and I laughed at the sheer absurdity of the situation, and the fact that we tend to have more than our fair share of wild surprises like this.  Ultimately, we saw a light off to the right, so we decided to try that fork. This is another glimmer of divine providence, because the light turned out to be that of the relatives house where we were staying.

June got over the stomach bug fine with Gatorade and some phone consults with our doctors, and we went on to have a ton of fun on the trip.  The boys actually developed the stomach bug as well just in time for our drive home.  But we took advantage of the leisurely pace we had planned for the drive back, and since the kids mostly preferred to rest or play quietly while they were recovering, the drive home was actually pretty relaxing.  We even enjoyed a stop at Dinosaur World without any gastric emergencies.

Dinosaur World in Kentucky is awesome.

Dinosaur World in Kentucky is awesome.

I hope that these stories of our shenanigans may offer some knowledge, wisdom and humor to other special needs families.  I hope they don’t dissuade any special needs families from travelling if they’re considering doing so.  Because despite these bumps, these trips have all been worth it.  The memories we made far outweigh the various difficulties we encountered.  These things have been good learning opportunities, too, and have helped us to prepare better next time.  Which means that every time we venture out, we are increasing our ability, wisdom and mobility as a family.  And collecting some good and unusual stories along the way.

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Special Needs Family Outings- What Didn’t Work (for us), Part 1 of 2

We conclude our special needs family outings series with a discussion of what did not work so well for us when traveling.  I’ve divided the post into two parts, the first being an assortment of issues/examples and the second will cover difficulties we had while flying and handling a medical emergency away from home.

We try mightily with careful planning and creative ‘rigging’ to minimize our risk, overcome obstacles to travelling and increase our mobility.  We’ve been fortunate to enjoy several memorable trips in the last few years which were overall very successful.  But they weren’t without bumps big and small along the way.

Special needs family outings What Didnt work

Forgetting Things
We tuck away duplicates of everything possible in case we ever forget something, but there are some essential items that have no such back-up.  Most notably, the portable suction machine which we keep in a bag along with everything needed for an emergency.  Having this “emergency bag” with June at all times is a matter of life or death. As such, I have forgotten to put it in the car about three times ever, and in each case I noticed its absence within 2 minutes and turned around to retrieve it without incident.  Actually for the first two years of June’s life I *never* forgot it because we suctioned her at least once an hour.  But as she grew, and especially after her LTR surgery last summer, June can clear mucus from her trach tube very effectively and does not need to be machine suctioned very often; sometimes only once in 24 hours.  So the first time I forgot it, it was because I capitalized on the momentum of the particularly rambunctious kids who were already in the garage for an impromptu drive around the block.  The break in routine, leaving from the garage rather than the house, contributed to forgetting to grab the bag. On the other two occasions, I had another person with me and we each assumed the other had grabbed the bag.  Now we verbally confirm that assumption before leaving.  In a less dramatic event, when June had first switched from total oral feeding to total tube feeding after her surgery last summer, we once forgot her feeding pump and prescription formula at home when we went on a day trip.  I had the back-up g-tube extension, but we had no way to acquire the rare formula she needed.  So we gave her water and Pedialyte manually that day and cut the trip short by just a little.

Lack of Handicap Access

Our current set-up, the Graco Ready2Grow loaded with emergency bag, oxygen tank (when needed), diaper bag and a couple a' kids

Our current set-up, the Graco Ready2Grow loaded with emergency bag, oxygen tank (when needed), diaper bag and a couple a’ kids

We’ve struggled at times with lack of ramps or space for the stroller that carries June’s medical equipment. A local museum has a strict no-stroller policy at one of their wildlife exhibits, but we explained that (at the time, before June could walk, and I couldn’t carry both her, the suction bag and the emergency bag) the stroller is medically necessary to carry the heavy equipment in the same way that a wheelchair is necessary for some guests, and I asked if the exhibit is handicap accessible in that regard.  That helped to clarify our need and we gained entry, but still while we toured the exhibit, other well-meaning staff approached us to explain that our stroller was contraband.

In another instance when we all went to support Greg at a mud/adventure race, we were assured access to handicap parking at the event itself, but the day of, due to muddy conditions, all vehicles were required to park in a field 18 MILES AWAY and return via shuttle busses.  So, we parked in the field, loaded the emergency bag AND oxygen tank into the double stroller since we would not have access to our car, pushed the stroller across uneven rocky ground and loaded it into the back of a yellow school bus that served as a shuttle.  Then at the event they weren’t kidding about the mud.  The heavy laden, low-riding (non-jogging) double stroller sunk into the stuff.  At times, my feet had no traction to even attempt to push it, and when I did push, the front end was just accumulating a wall of mud in front of it as it burrowed further into its own little mud quarry.  Several times, friendly race finishers, caked with mud and full of endorphines and adrenaline, happily picked up the entire stroller as I traversed the roughest patches of the spectator areas. To top it off, Greg had no cell phone on the muddy, wet race course and couldn’t communicate to me that his team was taking four hours longer than expected to finish.  By the end of it, we were all thoroughly baked in the sun, I had wearily checked with all the medical tents and authorities for news of Greg’s whereabouts, and it was only by a small miracle that we eventually did spot each other in the sea of 10,000 muddy people.

The mud. I would have enjoyed the mud fun a lot more if it wasn't taking place on farm land that was littered with cow patties....

The mud. All that mud.

Environmental Hazards: Smoke, Heat and Weather

The most common environmental hazards we deal with are proximity to smoke and lack of air conditioning.  Usually we can counter these by leaving the smoky area or hopping into the car for some AC, but that’s not always possible (such as when your car is parked 18 miles away. Ahem.). When visiting relatives once, we made plans to stay at a home that I had completely forgotten was infused with 50 years of cigarette smoke AND had no air conditioning.  We had to change accommodation as tactfully as possible.  In another instance, Greg and I used the Hotwire website to secure discounted lodging only to find that the hotel it booked for us only had smoking rooms available (even given the medical basis for our need).  They explained that they could not offer a refund since we dealt with Hotwire, and likewise, Hotwire has a rather iron-clad no-refund policy with ample warning-jargon in the usage agreement that room preferences and amenities may not be available. (This warning never bothered me because we aren’t picky about amenities, but the possibility of being left with only smoking rooms never occurred to me.)  We accepted the fact that we’d probably would not get a refund, and looked around for other lodging that night anyway, without success.  Ultimately we returned to the Hotwire find and reluctantly settled into the smoky room for a few hours of sleep.

In terms of weather, we always have to be mindful of potential power outages that would limit our use of June’s medical equipment as well as any conditions (road closures, disasters) that would affect our access to medical care if needed.  Thankfully we haven’t had any problems, but we have altered our course when bad weather arose- including a few minutes after we took this photo while stretching our legs at a park on the Mississippi River.  A severe storm was blowing in quickly from just across the river, and a minute after we snapped that photo, everyone in the area was scattering, running for cars and shelter as the surprising 60 mph winds arrived just ahead of the rain.  Somewhere at that park is a favorite sparkly shoe of June’s that we lost when we picked her up to run to the car. (Thankfully, our fashionista has plenty more.)

ms-river

Check back later this week for part two!

 

Special Needs Outings: Misunderstandings and Judgments

This series focuses on special needs family outings: what goes into the decision and what comes out of it.  The last post featured two mall outing opportunities that appear identical, but are actually on opposite ends of the spectrum when viewed from a risk assessment perspective.  Consequently, one invite was accepted and one was declined, which would be puzzling to an outsider to whom the invites appear the same.  Special needs families know all too well how often this situation occurs, and the unfortunate misunderstandings and judgments that can result. The already difficult process of making travel and outing decisions can feel like a mine field of potential interpersonal conflict. 

At this point in our journey, we as a family are blessed to be surrounded by wonderful friends and family who have invested time into understanding our circumstances, so we rarely deal with these difficulties nowadays.  But along the way we’ve experienced each of these misunderstandings at some point, and we’ve heard countless similar stories from others in the special needs community.

Today we’ll take a look at a few misunderstandings that special needs families often face and how they can be managed.

special-needs-family-outings-misunderstandings

The last post hit on the most common type of misunderstanding:

1. People outside the family seek and/or assume black-and-white rules for the family’s outing decisions when, in fact, none exist.

open-book-1424269

Usually the root of this problem is that others assume the special needs family has been given straightforward “dos and don’ts” by their doctor, leading to questions such as,

“I thought you could leave the house now.”

“Are you allowed to go to the mall or not?”

“You mean can never be around school kids?! That makes no sense.”

If the family has an opportunity to explain in response that travel decisions are based on risk assessment rather than absolute dos and don’ts, the misunderstanding usually clears up quickly.  However, other people’s receptivity to this explanation is usually directly related to how often they use this type of risk and benefit assessment in their own decision making; occasionally people find this approach so foreign that the misunderstanding ultimately remains.

If the family is not given the opportunity to explain (or if they choose not to), people may make unfortunate assumptions about what appears to them as inconsistency in the family’s decision making.  We’ll discuss this below.

A second type of misunderstanding or source of conflict is when

2. People seek to make accommodations for the family but are disappointed with the results.

hands-1438638

People who understand the decision making process may offer to mitigate some of the risk in hopes that the family can attend or participate more fully in an event, which is wonderful!*  However, if for whatever reason, the family is still not able to do what the well-intended person was envisioning, that person may very naturally feel disappointed, sad or even resentful.  In the mall scenario, the second friend may say,

“Can I help carry the stroller over the narrow parts?”

“I can run after the kids if they leave the play area…”

In the example, those are big helps. And they represent significant effort on the part of the friend who has 2 preschool kids in tow.  However, the friend may not realize that these helps only address minor aspects of the total risk, leading the family to decline despite her offer. The friend may understandably feel like she’s “bending over backwards” trying to get together and that her generosity is not appreciated.

(*Sometimes offers of help do tip the scales so that the family can go.  If so, HOORAY!  Win-win!)

The last common type of misunderstanding is often an outgrowth of one of the first two types we discussed.  It occurs when,

3. People make assumptions and judgments based on what appears to them as inconsistency in the family’s decision making.

Judgment and misunderstanding

Routinely in special needs forums, people recount heartbreaking stories of loss of relationships due to this type of misunderstanding.  This misunderstanding usually starts when someone is disappointed in the special needs family decisions- perhaps the family cannot attend this person’s event, or cannot see them as often as they used to, and/or this person begins to take personal offense to any activities the family is able to do without them, viewing it as the family’s declaration that they value that experience more than they value that person.  Again, it is easy to see how this occurs from our two mall outings example, when activities which appear identical to outsiders actually carry very different levels of risk.  In any case, this person is disappointed initially.  The either don’t understand or don’t accept the basis for the family’s decision, so they create their own explanation, often as their disappointment is blossoming into sadness, anger, resentment or grief.  Some sadly common examples of things that are said about special needs families in these situations:

“They just went to the mall last week.  They can go.  They just don’t want to.”

“They use that kid as an excuse.”

“They saw Talia last month.  I guess I’m just not as important to them.”

“I bet they aren’t coming because they’re embarrassed that [they don’t have…../their kid can’t do…./they can’t do xyz….]”

“They said that their kid has [xyz problem] but I saw him doing [abc], and that doesn’t make sense.  I don’t think he’s as sick as they say he is.”

“They make a big deal out of everything.  They just want attention.”

Naturally, the relationship suffers when disappointment ushers in anger, resentment, gossip, and judgment on its heels in this way.

So what can be done?

For special needs families and those close to them alike, communication and grace are the simple but powerful keys. 

These can be put into action by:

  • Everyone involved remembering that the special needs family is solely equipped and empowered to make these choices. Each decision is so unique that it really can’t be compared to others or evaluated by those outside.
  • Special needs families proactively sharing their decision making process to others, when possiblenot with the aim of justifying the decision but rather to raise awareness of the process for their own sake and that of other special needs families.
  • Those close to special needs families asking questions about the family’s needs and/or how they can help.
  • Both sides bearing in mind that patience and grace will frequently be needed as they work to understand each other.
  • Both sides taking the risk of talking over their misunderstandings and disappointments with each other and resisting the slippery slope of judgment and gossip.
  • Special needs families who find themselves being judged should likewise avoid the unhealthy trap of vilifying, gossiping about, hurting the one judging them; rather, they should confront the person involved as gracefully as they are able, which will end the cycle of misunderstanding and judgment either in a resolution or in cutting ties.

    Soon we will explore a much more fun aspect of this complex topic: sharing some of our own adventures including what travel and outing plans worked well for us, what didn’t, and how our decision making in this area is changing as the kids get older.  

    Special Needs Family Outings: Decision Making

    Special needs family outings Decision Making

    Today we continue the series on special needs family outings, including vacations, day trips, or even simple play dates.  Special needs families have extra considerations when planning an outing, and people outside of the family are often unaware of what those extra considerations are, or even of the fact that they exist.  Without this information, outsiders can misunderstand the family’s decision making.  Unfortunately being misunderstood or misjudged for such decisions is a frequently lamented occurrence in the special needs community.  It is a significant factor in the reduction or loss of relationships that new special needs families often experience.

    Since every family’s needs are different, I cannot compile an exhaustive list- or even a most-common list- of extra considerations that a special needs family may have.  Instead, I’d like to offer two examples of decision making which illustrate how misunderstandings can occur.  I hope this may be a helpful conversation starter between special needs families and those close them.

    The two scenarios below are entirely fictional, but I will suppose the family involved is my own- that is, the Safari household with three children under 5, one of whom has a trach and a g-tube- since I know what all of our “extra considerations” are.

    Scenario 1:

    The Safari family is invited to the mall for a playdate on a weekday morning in March by a friend who has 2 preschool-aged children.  The Safari family accepts.

    Scenario 1 decision making:

    Deciding on whether to go on an outing is about benefit and risk assessment. It’s not black and white- it’s a judgement call in which the family does their best to judge the risk and decide whether to incur it.  Some of the many factors which may be involved in a decision include:

    Season– This includes considerations like weather and seasonal bugs. March usually falls right after the end of RSV season in our area, although the season is sometimes extended.  During RSV season, especially when June was younger, we avoid unnecessary exposure to the public and especially avoid exposure to young children.  (Read more in our Intro to RSV, here.)  In this scenario let’s assume RSV season has ended for our area (meaning the number of RSV cases reported weekly in our region of the state has dipped below the agreed upon threshold) and there is no inclement weather, so the ‘season’ consideration leans in favor of the outing in this scenario.

    Timing- This refers to how the time of day (morning), week (weekday) and year (non-holiday) affect the outing. For any family, it is easier to keep track of children and manage behavior in quieter, less busy areas than it is to do so in louder, crowded areas.  So, while the mall isn’t the quietest, calmest place possible, going on a weekday when kids are in school and many adults are at work is pretty workable.  The ‘timing’ consideration gets a check in favor.

    Environment- Assessing the environment for risk involves a myriad of things including the flow of vehicle and foot traffic, handicap parking availability, stroller accessibility, ease of accessing our vehicle in an emergency, level of childproofing (fragile, sharp, heavy, hot things in reach), physical limits of the area (enclosed play place vs wide open), visibility of the kids in the area, sanitation practices, ability to comfortably use the loud suction machine, environmental hazards to June like smoke, dust, glitter, incense, perfume, strong smells, and splashing/standing/spraying water, AND the amount of effort it require of us to deal with the hazards present.  In this scenario let’s assume the parking at the mall is adequate, though I would be moderately far from the car in an emergency, the play place is enclosed but with good inside visibility (no tunnels, houses, walls), adequate sanitation schedule/supplies, a stroller can enter, there are no water features and it is non-smoking- all of which amounts to only mild risk.

    General exposure to germs- This involves some guess work, but we think about what level of germ exposure we expect for the location itself, which is influenced by the population (mostly adults or lots of kids), the turnover rate (an all-day event with one group versus being in a play place with kids coming and going continually), amount of contact the kids and others have with surfaces (sitting at a table versus climbing around a play place), the sanitation practices in place if any (a mall play place versus an outdoor park playground), and the health of the population present (an outdoor park versus a play area at a doctor’s office).  In this scenario, the exposure to germs gets a high risk rating, although the reduced traffic on a weekday helps some.

    Close exposure to germs- This involves thinking about the people our kids will definitely have direct contact with on the outing, in this case, our friend and her two preschool-aged children.  Our friends are aware of the risk to June, so they always tell us if their family has been exposed to illness recently so we can assess whether to reschedule.  In this scenario let’s assume the mom says one of her kids had a runny nose the week before but no fever, and seems fine now; that would be mild to moderate risk because if the child was sick, germs might stick around for a while. But being around children who have mostly recovered from mild respiratory illness is a risk we typically take when it’s NOT RSV season for three reasons: first, because June would be exposed to these germs in the public anyway, secondly, so she can build up immunity to compensate for being sheltered from germs during the winter and thirdly because her pulmonary health is strong, and having a common respiratory infection is not likely to be devastating.

    So, Scenario 1 involves favorable season and timing, pretty good environmental set-up, a moderate close exposure risk and a high general risk of germ exposure which we will deal with by extra sanitizing during and after the event.  We decide to go for it.

    Scenario 2: 

    The Safari family is invited to the mall for a playdate on a weekday morning in March by a friend who has 2 preschool-aged children.  The Safari family declines.

    Decision making:

    Comparing the basic facts, this looks like the same scenario.  But when looked at through the lens of benefit and risk assessment, they are very different.

    Season- Let’s assume the season and weather in the two scenarios are the same, so this consideration is a positive for this outing.

    Timing- Although it is on a weekday, this outing falls on Spring Break, during which time children, teens and adults alike descend upon the mall in a celebratory mindset, making it very noisy and busy.  This area of consideration is a net negative for this outing.

    Environment- This is a different mall than in the first scenario, and let’s say here, the only handicap parking is outside of a wing that has active construction going on.  The hanging plastic sheets don’t quite contain the sheet rock dust and who-knows-what-else (this is an asbestos abatement project, you say?), so we would have to park elsewhere to avoid it in the back of a chaotic lot full of vehicles that were similarly displaced.  The barriers for construction have narrowed some walkways in unexpected areas, making it difficult to push the stroller carrying June’s medical gear.  The play place has a tree house for climbing, and children cannot be seen when they are inside of it; this is problematic for June because I need to assess her visually at least every 60 seconds to be sure that her breathing isn’t obstructed. Also there is no wall around the play area, meaning while a mom is dislodging one child from a plastic tree branch, another one may be running to a far off Ninja Turtles display inside Macys’.  This area goes in the negative column.

    General exposure to germs- Exposure to germs is higher for several reasons including additional children present from spring break, the enclosed nature of the tree house, and poor sanitation practices since I’ve never seen a mall employee climb the tree to wipe down the inside and there are no hand sanitizer or sanitizing wipes posted for the public.  Eek, negative column.

    Close exposure to germs- Let’s assume the mom and children we are meeting are healthy, yay!  That’s a positive.

    Scenario 2, while it appears identical to Scenario 1 at first, involves positive things in regard to season and close contact with germs, but significant negatives in terms of timing, environment and general exposure to germs. Ultimately we decide not to incur the risk. 

    It’s easy to see how misunderstandings can arise when these two scenarios look identical at first glace, but the family accepts one invitation and declines another.   It’s most important to note that the decision to decline was based on a judgment of the situation as a whole, rather than on any absolutes.  Most misunderstandings arise when others seek to infer black-and-white rules, like the Safari family can go to the mall,” “can’t go to the mall,”  “can’t go to Northline Mall,” “can’t go anywhere that’s under construction,” or “can’t leave the house during Spring Break.” Given the right circumstances, our family could do any of those things.

    In an upcoming post, I’ll take a closer look at common misunderstandings like this that occur in this area, the their results.  The key to avoiding all of them, though, is communication and grace.  I hope this small peek into the special needs decision making process raises awareness and sparks discussion among those making, and those impacted by, these decisions.

    Nursing Update: On the Myth of Helplessness

    We have had home nursing for a little over a month. We use only 2 shifts a week, intended for ‘respite,’ or a break for us.  So, as of the middle of last week, we had had a total of 8 nursing shifts so far. And I truly didn’t think I could handle having nursing anymore.  This will not be a surprise to other special needs parents who have nursing.  But I know others outside of this medically complex family lifestyle often struggle to understand why nursing (or many other well-intended helps and fixes) can be more of a burden than a help.  Let me explain.

    Nursing Update: On the Myth of Helplessness

    First, how could professional nursing help, paid for by insurance, possibly be anything but a welcome blessing to a family with one child with complex medical needs and a total of three children under 5?  I addressed many such reasons in a previous post about why we oh-so-happily declined nursing two years ago.  A few examples of how these reasons manifested in real life in the past month:

    • These 8 nursing shifts have been staffed by FOUR different nurses, and we are soon to receive a FIFTH.  So during these “respite shifts,” I’ve met, screened and continuously trained four different people. Enforced boundaries big and small with all of them. Navigated four new personalities while assimilating them into our daily routine.  Not to mention the first nurse we had, I trained for a few hours, and she enthusiastically discussed her upcoming schedule for the week (along the way, breaking a few HIPPA rules and her own company policies I noted), then she left to pick up some missing paperwork for our case at the nursing office and never returned.  She never called.  Didn’t show up for her next shift. And the nursing agency informed me that she was completely new to them when she took our case, and after disappearing from our house she wasn’t returning any of their calls either. This strange incident left us scrambling to figure out if she had access to any of June’s, or our, financial or identifying information while she was at the house, because children with disabilities are vulnerable targets for identify theft and fraud.
    • The only reason nursing would be helpful to me is to have help directly observing June 24/7 to watch for trach plug emergencies.  As I mentioned in the previous post, handing *June’s* emergency trach changes is a task that many trach-trained nurses would not even be up to.  The only emergency trach change that occurred while a nurse was here, I handled myself, because the veteran nurse with decades of trach experience had just finished telling me, “It’s been 20 years since I’ve had an ambulatory patient [one who can walk/has strength and motor control],” and she wasn’t sure if she could handle the quick-thinking wrestling match that an emergency trach change with June requires.  Indeed, she was pretty wide-eyed after the trach change, and regarding her ability to handle a similar one herself next time, she offered sheepishly, “I can try.”
    • Despite reassurances from the nursing company to the contrary, our nurses are not able to end a shift away from our home.  Meaning, we have to be home at 5pm. So, when I needed to meet Greg at work with the kids in order for me to leave for a much-needed mom’s night out?  I had to send the nurse home early.  When we scored a last-minute doctor’s appointment but the only slot available was 4pm?  We had to change the appointment.  When an early afternoon appointment unexpectedly went long?  I did not have the freedom to stop for dinner, or an impromptu play date, or a museum tour while rush hour died down.  Instead, I had to plod through the thick of traffic for two and a half hours, three screaming kids in tow, with a nurse anxiously texting her husband about our ETA at home (and her shift end) which ended up being an hour and forty minutes past her planned end-of-shift.  And because of our limited nursing hours, not only did the nurse end up missing her chance to see her young child before she went to bed that night, the company may not be able to compensate her for the over time. Obviously, that was a terrible afternoon for all of us, and how I wished I had been able to take the kids to see the new amber exhibit at the “dinosaur museum” instead, like we normally would have done.
    • BUT WORST OF ALL. As an introvert, interacting with people other than my little family drains my battery and I need to recharge it in solitude, or near solitude, like driving without other adults in the car, or like supervising the kids while they’re engaged in something else such as the museum trip, both of which were *prevented* by having nursing.  At the end of last week, when I happened to have people in the house every day with no way to recharge, my battery drained to absolute zero.  At zero internal resources, I couldn’t bring myself to engage at all socially. I stared straight ahead and avoided eye contact and talking. Since the nurse was engaged with June, I turned a self-protective shoulder to June, too, which I hated doing.  Ultimately I decided to send the outsiders home and to recooperate by treating to kids to chick-fil-a- hoping to get a little near-solitude while watching them stay occupied in the playplace.  But the momentum of the stress and depletion continued, and I ended up wracked with stomach cramps.  I had to call Greg to leave work early and meet me and the kids.
    • Stewing along with all of this are several upcoming decisions about June’s therapy schedule and schooling decisions, with differing opinions being thrown in the ring by myself, ECI, the school district, the doctors, the caseworkers, the therapists and even other special needs moms.

    I share this in order to explain a larger truth:

    The “help” that is available to special needs families is often very different in practice than what it is imagined to be by those suggesting it.  And for that reason, special needs families must be able to CHOOSE what help is appropriate for them. 

    Respite would be helpful if it worked as it ideally should, but in REALITY, I have spent far FAR too many hours in the last year stressed and dealing with problems caused by this nursing process.  Hours and energy that I don’t have available to waste.

    The reason why this nursing problem exists at all is that someone who is not in our situation decided nursing should be forced upon us, “for our own good.” (Our Medicaid requires it; also see here why our situation and insurance necessitates the use of Medicaid.)  While I heartily support resources being made *available* to special needs families to utilize as their unique situation calls for, forcing families across the board to accept unwanted advances of charity is by no means helpful, or even respectful. We have similar battles every time a course of treatment or therapy is suggested that we know from experience detracts more from June’s well-being more than it helps (if it helps at all). We are purposeful about educating the professionals involved about our actual experience of such helps, and why we feel various options are not a good fit.  But even if ONE battle is laboriously won with ONE professional, more suggestions and demands meant to help continue to be thrust at us at every turn in this journey.

    Why is this? What about having a special needs child could possibly imply that we no longer have the capacity to manage our own lives, schedules and homes?  Why should we suddenly be subject to any and every idea of “helping” that others conjure up based on their limited observation of our life, AND their limited knowledge of what that “help” actually consists of practically? Indeed what about this situation makes it acceptable for “help” to be inserted into our very living room by the government?

    It is actually related to an innocent-sounding myth that often appears when people see a special needs family like ours:

    “They need all the help they can get.”

    It comes from the right place, on the surface.  But lurking just below is condescension and a denial of common dignity.  Allow me to dispel this myth.

    First, this myth paints special needs families as pitiful and helpless, in a constant state of need.  Actually, we are quite capable of seeking help if we need it.

    Secondly, this myth that “we need all the help we can get” carries with it the implication that it is acceptable, even encouraged, to attempt to ‘rescue’ us without invitation or permission.  Meaning that anyone can freely assert their opinion, will or resources on us, our home, or our time as long as their heart is in the right place.

    Being the recipient of misguided and unwelcome generosity doesn’t sound that bad?  Where shall I send your gift basket of puppies?

    To refute these assumptions of helplessness and denial of self-agency, I must say:

    We, as a special needs family, are resourceful and intelligent.

    And as the sole experts on our situation, WE should decide what our family needs and doesn’t need.  

     

    And what does my family need right now?  RESPITE FROM OUR FORCED “RESPITE.”

    To spend my time snuggling with my kids instead of corralling the dog while texting with nurses about why they are late this time.

    Snuggle

    To be able to pull the car over to nurse my wailing infant, play at the park, or stop somewhere for a snack without the danger of holding an employee hostage in the process.

    Park

    To go to the dinosaur museum- or arboretum- or zoo- or fair- after doctor’s appointments. Or anytime, really.

    IMG_20160304_131524

    June checking out a giant beating heart at the Health Museum

    Library

    I love parachute activities just as much as the kids

    To be able to wear pajamas past 7am.

    Celebratory confetti for pajamas!

    Celebratory confetti for pajamas!

    To meet my husband for dinner on a whim.

    High five to that!

    High five to that!

    To watch my kids, clean, and cook without a stranger sitting at the kitchen table.

    Baking IMG_20160413_163600

    To be able to devote time to my small business anytime I decide to, rather than being technically forbidden to “work” while a nurse is providing respite hours.

    The firestation (which we toured recently) is one place I'm excited to offer an ASL seminar, so emergency workers have some basic signs and knowledge of special needs patients.

    The fire station, which we toured recently, is one place I’m excited to offer an ASL seminar, so emergency workers have some basic signs and knowledge of special needs patients.

    What do I want? Simply put: TO BE LEFT ALONE by those who want (and succeed sometimes) to force their will on our complicated life. To be treated with dignity that DOES assume that we are capable of assessing and meeting our family needs by seeking OR declining the range of tools available to us.  And for people to understand that having a family that is different than ‘the norm’ isn’t “a bad thing to be fixed” or compensated for or pitied.  For people to stretch their imagination enough to believe us when we say: Far from being pitiful and in need, we like our life.  No, it’s not your normal. But it’s our normal. And it’s a unique adventure.

    A family meet-up at the park so we could 1- Discover new parts of the city 2- have dinner out 3- Greg could take the big kids while I took Miles to a much-needed mom's book club evening

    Exploring a cool downtown park this week where we waited to meet up with Dada, who was attending an afternoon sporting event nearby. Then we had dinner and Dada took the kids so MAMA could attend an evening mom’s book club on a far side of town. I say that’s a win all around, but it would have been impossible if we were tethered to the house by a nursing schedule.

    Mom Problems: Meal Planning

    I’m not sure what changed or when.  For years I was good at meal planning.  I made a master list of all of my favorite recipes for everyday use, for entertaining and for quick/no-bake options.  I composed weekly meal plans for several months at a time.  For a while I juggled a mixed vegetarian and carnivore household, and later I juggled a non-dairy non-soy diet for myself and June while the boys continued to eat like humans.  I made my own granola cereal, chocolate and ice cream.  We even went through a period when June couldn’t eat, which sounds like it would make things a bit easier, but try maintaining a functional kitchen- and using it- when you have an active toddler around who can’t be allowed to access food.  I handled all of that fine, and enjoyed the challenge.  And I don’t know what changed, but recently

    *I’ve become completely and utterly inept at meal planning*

    Meal Planning

    I never knew the were so many ways to mess up at it.  I’m still discovering new ones….

    In addition to not starting slow-cooking meals on time, making too little or too much food, forgetting to refrigerate left overs, letting left overs spoil, forgetting key ingredients while shopping, forgetting key ingredients while cooking, letting key ingredients expire, using all of a key ingredient in one recipe when it’s meant for two, letting meat and produce spoil before their meal night is scheduled, and ALWAYS forgetting to prepare the sides, I also frequently….

    ….grocery shop too late or too early to order from the meat counter.

    ….find weird cuts of meat on sale that don’t quite perform right in recipes

    ….don’t notice when a recipe sneaks a whole other recipe into the *instructions* area (now serve with Spicy Mango Salsa!!)

    ….am disappointed when I attempt that trendy “freezer meal” thing (so, it still takes a ton of time to prep and THEN cook from frozen, and by nature it’s a large volume of one flavor/consistency you are stuck with as meals and left overs.  Am I the only one not seeing this as a “magical economical cooking hack”)

    ….somehow can never keep paired food in the house at the same time for the no-bake options….eggs and bacon, peanut butter and jelly, bread and lunch meat, cheese and crackers….

    ….buy too little milk for several weeks, and in subsequent weeks I double stock our milk twice or three times, creating mandatory milk binges in the house.

    ….stock up on frozen meals as a fool-proof way to have food available, but day after day I realize I’ve missed the 1-billion hour advance window that I need to put it in the oven for it to be ready by our early dinner time

    ….have no idea what canned goods we have because the kids have started using them in their pretend games.  I end up saying things like, “Rowan, go check your train and see if there are any diced tomatoes in there.” (The answer was no, and I substituted spaghetti sauce, which really is a whole other way to ruin a meal.)

    I don’t know if it’s having a third kid, mom/nursing brain, or maybe I just decided I need a break from meeting the challenges of meal planning after fielding all of our crazy dietary needs for the last few  years. That, and it’s now nearly impossible to do a full grocery shopping trip with the three kids plus June’s emergency bag; the best I can do is bring my double stroller, hang a several reusable bags from the handle bar on some mom clips and shop until those are full. Whatever the reasons contributing, we seem to be single-handedly supporting the fast food industry near us.

    Suggestions from veteran moms??  How do you handle the ever-changing stock of household food, dozens of expiration dates and time frames, perishablity of healthy fresh foods, starting prep at the right time in the day while juggling 100 other things, and the challenge of fitting time to sit down to meal plan, then shop, then, yes, actually cook then clear/refrigerate into your week?

    The Home Nursing Analogy: Why we are reluctantly seeking some nursing again

    Recently I wrote about why we declined home nursing for the past two years, and a little about the mammoth of a topic that is being awarded secondary Medicaid.  The fact that Medicaid requires us to use at least some nursing hours is a big reason why we are seeking it despite the long and varied list of reasons why we prefer not to.  There is a second reason, though, which can be illustrated with the following analogy for home nursing.

    Home Nursing Analogy

    Imagine that you were told that your young child would be involved in two car accidents every week for the foreseeable future.  The exact time of the accidents would be random and unforeseeable, and they would vary in severity.  However, the accidents would always occur in your own vehicle and on roads you are intimately familiar with.  

    Now imagine that you are told you have the option to let strangers drive your child around in your car, a little or a lot– all the time if you’d like!  But they would handle those inevitable car accidents, in your car and on your roads, and tend to your child afterward for better or worse.  But don’t worry!  These strangers are licensed drivers of course!  Now, as far as how long they’ve been driving, whether they’ve driven a car anything like yours, or EVER been in an accident, who knows- that varies.  And they are completely unfamiliar with your roads and the traffic patterns of course.  What do you say? Would you like us to send someone to take a shift?

    This is what utilizing home nursing is like for us. To explain in more detail…  For a while during the winter, June was having two emergency trach plugs per week (“car accidents”), some minor, like partial plugs, and some major (“varying in severity”) like full plugs or incidents when we couldn’t physically get a new trach in, during which June would nearly lose consciousness.  These events were always unexpected, they occurred at night, during the day, in the kitchen, in the car, in the backyard… But, just like “knowing your own car,” Greg and I always instantly know how June is doing by the particular sounds of her breathing, her behavior, the condition of her stoma and lungs, and it allows us to anticipate these otherwise completely unexpected emergencies (or “car accidents”) somewhat.  Just like “knowing your own neighborhood streets and traffic patterns,” we know by heart where all of her emergency equipment is located in the emergency bag and in the house, so no precious time is wasted fumbling for those things, and we know what environmental and circumstantial hazards June is likely to encounter that would make an emergency more likely.  And most importantly, we are her parents, and our presence is an irreplaceable comfort to June when these emergencies occur.

    A nurse has none of these advantages when handling an emergency (or “car accident”).  A nurse is licensed by the state, but that is very similar to the general nature of being a “licensed driver” in this scenario.  She may never have handled a trach patient (“a car like yours”) or may have had only trach patients with very different circumstances, such as a patient who is immobile on a heated circuit vent and never has trach plugs.  As such, she may have never handled an emergency trach plug or emergency trach change (“car accident”) and therefore, even she doesn’t know how she will react.  (No kidding here– other parents of kids with a trach have shared that their nurse became hysterical, left the child and ran out of their home screaming and waving her hands, when the child had a plug and a difficult trach change.  Thankfully the parents were there, too, and they finished the trach change calmly in the nurse’s absence.  In fact, when looking for a nurse this time, I strongly emphasized the need to perform well during an emergency, because June has them frequently, and thankfully several nurses have honestly said, ‘In that case, this isn’t a fit for me.  I get jittery when a child is in danger.’)

    SO!

    You may say, “Wait, I thought this was a post about why you ARE seeking some nursing, not topping off the pile of reasons not to.” Well, hear me out.

    My husband and I have been caring for June ourselves just fine for the last 2.5 y ears, “taking shifts driving,” so to speak.  The only times we have not personally observed and cared for her are for 2 hours while Greg was at my bedside when we had our 3rd child last year (and June was with her medically-trained grandmas in the hospital waiting room, ready to text Greg if he was needed), and for 45 minutes here and there during inpatient stays when we left a dedicated attendant at the bedside with June so one of us could go buy food or rest.  It has worked fine for us- it’s our normal, and we actually have a fun, silly and adventurous family life.  But I realize: we’ve been lucky. There has never been a time when we were both unavoidably unavailable. Greg has always been able to take off of work when I’ve been sick or in the hospital.  But eventually, there will be a time that, for some reason, neither Greg or I can provide the 24/7 monitoring she requires. And it’s also true that it is *healthy* for us to take a break “from driving” occasionally.  So, when that time comes, I’d rather have someone available that at least knows “our car” and “our roads” a little bit than not at all.  I’m reluctantly seeking some nursing, first, because it’s required, but secondly, because it will benefit June by establishing another care giver to ensure she has proper and safe care if we ever absolutely need it or in order to provide us some respite so Greg and I will have the endurance to provide her excellent care long-term.  

    Still, ug.

    Let the nursing adventure begin?

    The Big Rocks: Self-Care for Caregivers

    The past month has been a vast improvement over our overwhelming December. The solutions I mentioned in the last post were a great success, especially potty training progress and toy rotation. Also, while Greg and I normally have the luxury of relaxing after the kids go to bed, last month we each committed to doing just one extra ongoing household chore (laundry, dishes, picking up) in the evening before shifting into leisure mode. That way I could pare down our list of one-time “to dos” (end-of-year, beginning-of-year, 100 little tasks displaced by holiday madness etc) during my day.  It was amazing how quickly we tackled that backlog of “to do”s with that little schedule adjustment.

    Now, I’m looking ahead and envisioning our new routine. Greg and I often reference the ” big rocks” analogy of time management. If you are unfamiliar with it, one presentation of it is here:

    The basic idea is, if you put the important things into your schedule first, you’ll find you can still fit many of the smaller tasks in between them naturally. But if you pile all of the small tasks and time wasters in your schedule first, it will appear as though there is not room for the big important rocks. Greg and I often discuss what we consider to be the “big rock” items in our family schedule, and whether we are treating them as such. This practice has always served us well.

    Recently however, even though we use this purposeful approach, and even though we are blessed with regular help from extended family, and even though I am a seasoned and compulsive multi-tasker, and even though I am so stubborn that I often give 120% of effort/energy (more than is healthy) to finish whatever challenge I’ve decided to tackle…I’ve wondered if it’s really possible to fit all of the important rocks right now, as I’d like them to look. So it’s time to revisit my priorities to see if I truly am expecting too much (quite possible) and/or if I can distribute my limited time and energy differently to achieve a better balance.

    Based on the prevalence of articles on time management/juggling things/finding balance, I think  I’m far from alone in struggling with the constraints of time and energy.  I was talking with a friend- a fellow stay-at-home/aspiring work-at-home parent of preschool children- who summarized my thoughts perfectly:

    “I want to take care of the kids and the house, maintain my own health, and do some kind of career related activity. But I find that I can only ever do one-and-a-half of those things.”

    That has been my experience exactly. Taking care of the family and home always seems to comprise most of the “one,” and everything non-mom-related competes for that “half.” And every time I devote energy to getting one life area up to par, I find that another area has deteriorated into an unacceptable state.

    If you find yourself in this same spot, unable to fit everything you want into your days, try these steps along with me:

    big rocks self-care

    • Identify the “big rocks:” those things that you will fit into your schedule purposefully because they are most important to you. Personally, in addition to caring for all aspects of the kids’ well being, maintaining a safe home, and sharing the journey with my partner in adventure, I (try to) prioritize my nutrition, health, spiritual life, social support, and some pursuits that are lot directly related to motherhood, such as hobbies (blogging!), learning, and a few (very) small business pursuits.  I truly believe that prioritizing most of these things is essential in order to care for my children well, as explained next:
    • If you are a caregiver, remember to prioritize self-care.  The analogy of the oxygen mask on the airplane (“Put your own mask on before attempting to help other passengers….”) is well-worn but still a powerful picture of how important self-care is in being an effective caretaker. Not only does proper self-care provide the energy and resources necessary to care for others, but the self-care that you model will shape how those in your care will treat themselves one day.  For these reasons, it’s useful for “helpers” of all kinds to remember: show yourself the same consideration, compassion and grace that you show those you are caring for, and let that be reflected in your “big rock” choices.
    • Identify your specific expectations for each “big rock” area. These can and will change. In seasons past, ‘taking care of my health’ meant making it to the gym 3-4 times per week.  Recently my health goal is to shower more and brush my teeth on the majority of days.
    • Identify which “big rocks” are making it into your schedule and which aren’t. For those that don’t fit, think about whether it is the expectation or your schedule that needs to be adjusted.
    • Adjust expectations as needed.  Personally, I know that while I have three kids under 5- one with complex medical needs- I will only be able to maintain minimal expectations in many of these areas.  Our family will eat fast food more than I’d like, I’ll exercise less than I’d like, and my hobbies/learning/career will progress at a seemingly glacial pace.
    • Adjust the distribution of your time, committing to your big rocks first.  First, you may want to schedule the big rocks into your week. Many, many tasks compete for the precious little time that the kids are asleep and my hands and mind are free.  It’s overwhelming to figure out what to do with those limited time periods.  So,  Greg and I have a general weekly schedule for our evenings- one night is for watching church podcast together (we can’t bring June to Sunday services with us during RSV season), we each have a designated night out with friends, one evening I study ASL, and one night we just relax and watch our shows. Somewhere in there I get the bills and blogging and my small business tasks and continuing education done. Secondly, you may find, as I did, that you have too much of a good thing– perhaps you are spending a lot of time on a specific “big rock” area at the expense of other things you want to fit into your schedule, too.  Which brings us to…..
    • Make a “to-don’t” list.  After you’ve identified what you DO want to do, it’s helpful during busy seasons to identify what you WILL NOT do, so that you’re not tempted or guilted into cramming it into your schedule.  It feels strange at first because the “to-don’t” list is populated with good, fun things that are probably related to your “big rock” values. Ironically, writing this blog post has been on my “to-don’t” list for two months!  There is a lot of value in recognizing our limits, and stating “for the record” that you aren’t going to do these things right now is a helpful way to reinforce the boundaries we are putting around our time.

    Wow: An End-of-the-Year Sigh.

    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.

    cropped-263e5-desertmoses.jpg

    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

    Chores Magnet Board

    • 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

    SaharaBed

    • 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.

    A Day in the Life, Updated #1day12pics

    One of the most frequently pinned posts here is A Day in the Life, in which I describe a typical day for us as a family with a medically complex child. So much has changed since I wrote that a year and a half ago- June is walking, climbing, and communicating (signing), she has a g-tube, is NPO (can’t eat by mouth until her trachea fully heals from the LTR surgery this summer) and we have a new little guy here too!  So today I am issuing an update in the fun “one photo an hour” format that has been popular for years but, in true 30-something-mom fashion, I only recently learned about.  I chose October 30th, and I have (at least) one photo from every hour of our day, plus a description of what we were up to- the medical, the mundane, and the unexpected. My hope is that by sharing a little of our experience, I can provide support, raise awareness, and dispel some of the mystery surrounding the special needs/medically complex life.

    6 AM

    6AM

    I wake up, Rowan is awake*, and we eat breakfast.

    I have one baby monitor watching June and one listening to Miles.

    Rowan tries to persuade me to take my coffee, breakfast burrito and cheddar biscuit upstairs so we can play Jurassic Park on the computer during breakfast.

    *We opt for early bedtimes for the kids (6-7pm) but that *does* translate into early  mornings, too.  Rowan is up by 6 most days, and June wakes shortly afterward.  Miles sleeps a little later some days.

    7 AM

    7am

    I see on the video monitor that June is awake.  We complete her morning routine including turning off the overnight humidifier, turning off the pulse ox and removing the probe, draining the G-button extension, administering her three morning meds via the G-button, changing clothes and diaper, and then grabbing the new feeding bag, new suction catheters, feeding pump and backpack that we need for the day.


    7am (2)

    While I gather supplies June gets away from me and proudly sneaks some crackers since the baby gate securing the kitchen was still down from the previous night.  Much of my day is spent keeping June away from food since she is NPO.  Much of June’s day is spent trying to acquire food.
    7am4

    In addition to baby gates securing the kitchen, we keep our kitchen chairs up high or with cushions removed so June can’t use them to reach food (she’s an expert at this).

    7am3

     

    I mix June’s formula for the day using blender bottles, place June in the high chair and connect her feeding pump to her extension for her morning meal.

    I check our pharmacy hours on the web as they were closed the night before when we went to pick up meds.  Sadly, new shorter hours are in place.

    I feed the dogs, note that one of them is still inexplicably limping, and let them outside.

    Miles cries but I find him still sleeping when I check.  I sleepily decide it’s a Diet Coke morning.

    I sit down to do a lesson on my Signing Online course, but June is signing about reading books and asking here Daddy is.  She quickly decides she also wants to watch Baby Signing Time, so I put a DVD on from my instructor set.

    I do the 10 minutes of floor exercises that I attempt to fit in each day, and amazingly no one jumps on me while I do.

    8AM

    8am

    June signing cereal

    Rowan eats a snack and the instant he vacates his chair-with-seat, June climbs up to finish his cereal.  I remove her and a tantrum ensues.

    Everyone needs a diaper change, resulting in a very fragrant aroma near the kids’ rooms.  I turn the bathroom fan on, and June walks up and down the hallway outside signing SCARY POTTY.

    June’s feeding pump finishes and I remove her milk backpack.  She finds and disassembles the backpack, proudly signing MILK.

    9am

    I nurse Miles.

    Now that it’s business hours, I call the durable medical equipment (DME) company about some problems with our last shipment. (This is that part-time job all special needs parents have.)

    While I help Rowan disassemble some Legos, June presses Mile’s bouncer down as far as she can, turning it into a baby catapult. I intervene to prevent Miles going airborne.

    I sneak away to brush my teeth and put my contacts in.

    9AM

    9am3

    June tries to steal my cheddar biscuit snack.

    I suction June’s trach.

    The kids play, and it gets rough when conflict arises with Rowan saying, “JUNE YOU CAN’T TOUCH MY TOYS!” while shoving, and June signing to me STOP, BROTHER HIT AGAIN.

    The hospital calls to apologize about a billing error I inquired about earlier this week.

    I call our car dealer to follow up on a maintenance letter we received, and I add a carcappointment to Greg and my Google calendars.

    June has a tantrum that I won’t let her play with the clean dishes in the new dishwasher.

    I prepare and place June’s feeding pump backpack on her for her next feed.

    10 AM

    10am

    10am1

    Rowan and I enjoy “smuggling” together.

    Rowan asks me to “charge” his iPhone and wonders if it takes pennies. June takes his discarded pennies and places them around Miles in his bouncer.  Miles is awakened unpleasantly by these and other gifts

    The kids draw together as their contribution to birthday thank you cards, and Rowan tries to convince June to draw on her forehead.

    10AM5

    Being unsuccessful in convincing June, Rowan draws on his own forehead.10AM6

    At point point, everyone was upset about something different, but the details elude me.

    11AM

    11AM

    June plays with stacking toys while Rowan plays on his LeapPad.

    June’s feed ends- I remove the backpack and refrigerate the feed bag.

    Another round of diapers.

    I receive a follow up call from Medicaid about June’s application.  (For a wonderful post on why June would need Medicaid, despite having private insurance and two plan-prepare-saving-oriented parents, see this wonderful post by a fellow special needs parent.)

    I slowly work on the written part of the kids’ birthday thank yous.

    12PM

    12PM

    I nurse Miles, and he drifts back to sleep, guarded from dog noses and sibling presents by the pack-and-play.

    The older kids finish playing and sit down to lunch.

    June goes down for a nap during which she wears a pulse ox which will alert me if her heart rate or oxygenation venture out of the specified safe ranges.

    1PM

    1300

    Rowan and I read the Lorax while June and Miles sleep.

    I attempt to nap, but am awakened by Miles needing to nurse.

    I download a free augmented communication app for June to try, as recommended by her speech therapist.  But it turns out this free version doesn’t work independent of the paid version so I delete it.

    2PM

    June wakes up from her nap and insists on keeping her pulse ox cord on her foot.

    Rowan has a tantrum and refuses to go into time out.  He loses his Legos as a result.

    June is also upset that she can’t eat chocolate.

    Someone is upset that a LeapFrog toy is out of batteries so I replace them.

    I decide its time for a snack.

    June settles down and asks to look at the picture frame on the wall- a favorite past time of hers is signing the “name” (like Grandma) of each person she sees in the photos.

    1400

    And Rowan likes a busy bag activity I set out.

    1400 3

    3PM

    Sphinx is being unusually tame, and Rowan decides she needs to try on some hats.

    1500 1

    1500 2 (2)

    I read There’s a Wocket in my Pocket with Rowan and June.

    1500 2

    Miles nurses and Rowan plays at app on his phone.

    June jumps on the exercise trampoline, asks for chocolate, then ventures outside.  Sahara positions herself so she can see all three kids at once.  She is, after all, Assistant Mom. June comes back inside when her diaper falls off- she finally agrees to have the pulse ox cord taken off too.

    1500 4

    June gets into the kitchen- I suppose one gate was still down from her naptime- and plays with the stinky dog food while Sahara begs.

    1500 5

    I work on my phone including returning emails, reading in my Bible app, and laughing at these parenting comics.

    4PM

    1600 2

    Greg is off of work and we have our customary commute phone call about the day so far.

    I ask Greg to skip going to the pharmacy despite their shorter hours because I am looking forward to finishing the busy day at home and relaxing.

    Rowan plays with Miles, June has fun cleaning up toys, I check on my Facebook pages, and Miles practices smiling at everyone.

    5PM

    1700 2

    Miles has smiling down.

    Greg hangs with the kids while I get dinner ready.  I discover I ran out of alfredo sauce, so I make the very grown up decision to use left over Papa Johns garlic butter as a pasta topping.

    Everyone eats dinner.

    While Greg stays at the dinner table with the kids, I prep June’s room for bedtime including filling up the humidifier with water, drawing up her meds, preparing her overnight feeds and preparing her trach care supplies.

    6PM

    Greg and I take turns putting Rowan and June to bed respectively.

    While Greg puts Rowan down, I put the kids’ drawings into the completed thank you cards.

    Being Friday, Greg, Miles and I settle in to enjoy the week’s spoils collected on the DVR including Blackish, Modern Family and the feature presentation- the Blacklist.

    Blacklist

    (OK, not a photo, but I already have more than 12 from earlier.)