HAHNER TRACH LIFE UPDATE - AUG ‘17

“Remember the days you prayed for the things you have now?” – O HOW FAR WE’VE COME!

…way too much info, but this is a cut/paste of my writing that I include in Vivs annual Life Book where I keep track of our medical journey and life together in pics & text, my magnus opum each year, and will catch old friends up and give insight into our lives for those who don’t know us that well…

LONG TIME – NO UPDATE

This is my first info post since moving to Stockton 2 ½ years ago! The move took so much out of me that I got out of the habit, probably a good thing! In the last few years, I’ve become so overstimulated by my cell phone/texting/email/FB and having to use technology more than I would like as everything depends on it these days, I can’t even hear my own voice in my head, let alone the still small voice of God anymore! I would scrap it all if I could. I am reminded of a book a friend, Jesse Rice wrote in 2009, just a few years after the beginnings of FB, called The Church of Facebook, where he points out that this new thing could change our lives for the worst as we aren’t capable of keeping so many connections up and aren’t meant to or able to even process all of the information and details that come with this type of social media and that we, our families and other close knit circles will suffer if we get carried away with this new invention. He equates FB and similar social media to the invention of A/C and the automobile in how it will change and affect our lives forever. WHAT AN ACCURATE PREDICTION, HUH?

On top of getting moved and adjusting to taking care of a bigger house/property, it took almost EVERY DAY OF THE FIRST SIX MONTHS to get all of Vivs medical stuff changed to a new county. There were so many mix ups and lack of continuity of care with getting night nursing & equipment/meds figured out, that I would almost hit insanity every few days having to be on the computer, phone or fill something out & have to send it AGAIN because something went wrong or SOMEONE DID WRONG!  Seth is the better one to deal with this type of admin, but I am the one who usually has to do it. However, he had to help quite a bit when I just couldn’t take it anymore.

Before Vivs, I had no idea how much behind the scenes work it takes when caring for a medically fragile child. Just imagine sometimes having to spend 2-3 or more hours of your day doing what should be other peoples jobs and having to keep track of every phone call, every conversation, every piece of mail…so that you can catch mistakes and TRY to get them fixed, sometimes again and again. Then imagine getting it all going smoothly, you THINK, and then every piece of mail or phone call requires yet ANOTHER task to complete. Things are mostly on auto pilot now, but there are still days/weeks when everything comes at once and I’m on the phone or kp.org WAY MORE THAN I WANT TO BE! With over 10 doctors/therapists & 7 agencies to deal with, 5 meds and over 20 pieces of medical equipment to keep ordered, stocked and inventoried, I can easily fall behind or miss something, so try very hard to stay afloat. I have to remember to be thankful for modern day technology which, when working well, can make a lot of my medical duties much easier! Most friends (EVEN SETH!) don’t ever see this part of my life and I work very hard to get all medical duties, equipment management, treatments, & trach care done so that we can do things and have people over. If I don’t get up at 4am most mornings of the week, I am not able to keep up with my domestic, nursing & homeschooling work. However, due to our night situation with Viv, I have to force myself some mornings to keep TRYING to go BACK to sleep to make sure that I don’t hit shut down. Most days I wake from night duty already ready for a nap, and with homeschooling requiring much more of my time, I have had to start drinking coffee some mornings! I fought this for years, but I’ve finally had to admit that I needed HELP! HA! Part of the reason I never relented was because in the days of living in the hospital or home drug weaning Vivs or adjusting to trach life, we used to have to sleep whenever we could, multiple times a day. I couldn’t have ANY AMOUNT OF CAFFEINE in my system if I wanted to fall asleep even for a few minutes.

If I want to tackle any big projects, like Vivs Life Book I make every year, it often has to be done a few minutes a time as I’m multitasking between other duties. I HAVE GROWN TO HATE MULTITASKING AND I THINK IT’S KILLING US ALL, and I have to force myself to JUST DO ONE THING AT A TIME so I don’t go insane. Yes, most things eventually WILL GET DONE, but if you are a task oriented person like me, you know how hard it is to procrastinate! I also live my life in some level of fear because I know how much there is to do and how much MORE there will be to do if I don’t get a good portion of it done NOW or TODAY, especially if Vivs gets sick and all life stops to stay out of the hospital. This might sound stressful, but I am not able to have down time in the evening if I don’t work hard in the morning! I try to work hard early to play later.

MOVING TO STOCKTON 3 YEARS AGO
One of my big insecurities in moving was leaving our large network of church, friends and neighbors built over 19 years, who walked through Vivs medical journey with us. It deepened, thickened and grew our relationships with so many, and I became very dependent on the meals and empathy that so many showed. I knew that it would be huge to lose this and would take time & patience to build another community. Even though I am out going, make fast friends and love getting to know people, I have to admit that I was NOT looking forward to putting out the energy required. I was moving back to my home town and knew people and had a few good friends, but the thought of a new neighborhood & church were daunting.

The thing I missed the most was the ease of having people around me that understood every aspect of our life. They knew our challenges with Vivs care, were used to her coughing, understood how dynamic & fast changing our life was if she became sick and had been with us in life before & after Vivs. There’s a great level of comfort that comes with these types of relationships built on history and of course it’s the element missing in a lot relations that I’m building here, simply because we have to start from scratch. Because no one sees it, the hardest part of our lives to explain & to truly understand is our night life, unless one knows from experience.  We get a lot of “NOW I GET IT” & “I DON’T KNOW HOW YOU’VE SURVIVED THE LAST 6 YEARS!” comments after friends have a baby or a sick/hospital experience. It’ something I wouldn’t wish on my worst enemy but everyone needs to experience in order to help them understand how much the night affects the day and your ability to function normally! We have grown oddly accustomed to waking up so much at night to care for Vivs, but it will always come at a price during the day, either in energy level or brain power, so have to be very protective of each other’s sleep as there’s only two of us! Although we have adapted, we quickly both become zombies when Vivs requires more night care, either when well or sick. She can have a great night when sick or a horrible night when well. We just never know. Although I’ve never minded telling our story (I’m often TOO DETAILED!), I found myself not even knowing where to start with people here. At first, I used to try to explain everything, in desperate hopes of wanting to be understood. That became exhausting, so now I'm ok with people not knowing it all & letting it come out more naturally. It’s fascinating as some people want to know everything and others don’t seem to have any interest at all. The latter personality type always intrigues me & helps me realize it’s not all about me!

So after living here for almost 3 years, our lives have slowly taken shape. We've gotten to know everyone in our court pretty well and I try to meet other neighbors every chance I get with my cheesy one liner attempts at conversation! I get this from having heard my mom for so many years! She's a master and her one liners sound so much friendlier with a Missouri twang! Thank God for Nextdoor.com (a neighborhood connection site), which has led to me joining a book club (no, I don’t read the books) and making homeschool connections! It's been great to reconnect more consistently with high school/church friends. I have some dear friends that I’ve known for years that always check on me and are incredibly gracious and empathetic when I vent! Despite the very difficult transition for me, it was worth it all just to be closer to my parents. We enjoy lots of time together and my mom is able to provide respite for me as she is the only other person who can care for Vivs. Think carefully how far you move away from your family, as it can be very hard if you have to move back!

NIGHT NURSING

It took 3 months to find a night nurse after moving here. It was an exhausting time because Seth and I switched every other night, a lot more than we were used to, having had nurses for 3 years. However, it was also a more peaceful time in our home since we didn’t have to wait up/get up for nurses, keep Vivs room/bathroom and all equipment tip top shape to host an employee or do hours of admin/paperwork/record keeping/home visits for the agency. Once we finally found and had a night nurse for the next several months, I decided I wanted to go back to doing our own night nursing in order to add to my life by taking away. We liked our nurse and felt she was part of our family, but it was more work for me than it was worth. It’s hard to explain unless you’ve had nursing in your home, but when I sat down to write it all out, the cons outweighed the pros.

Night nursing is a huge responsibility for trached children and many doctors won’t send families home UNLESS they have outside night nursing because they know that it can lead to a dangerous and fatal situation. Many families are sent to sub-acute care for several months or years until they have home nursing in place or show that they can care for their child. We were able to go home w/o having night nursing because the Drs. and nurses saw that we worked hard to learn proper trach care, proved our knowledge, started caring for her around the clock in the hospital and they knew we had Grandma Vivs help as well. We were on a waiting list for a night nurse several months before receiving one.

A big issue for me with night nursing from the beginning was that I wasn’t getting that much more sleep since I still had to get up because Vivs needs aggressive suctioning (going past the trach into airway) to help clearance since her secretions often pool just below her trach and it’s harder for her to get them INTO her trach at night when horizontal due to her narrowing areas from tumors. Most nurses aren’t comfortable doing this. They legally aren’t supposed to and it’s understandable, but each trach child is different and R.T’s (respiratory therapists) all know that some kids just need deeper suctioning, especially when sick. Also, as I mentioned, I was spending 2-3 hours a week w/ home visits/admin/paperwork/record keeping for the agency, which I felt WOULD be worth it if I was getting more sleep. I had my doubts and fears about this decision because a nurse is PAID to stay up all night and sleeps during the day to allow for this, but of course when we do our own night nursing, we have to try to go back to sleep each time to get every few minutes of sleep that we can.

Nights range anywhere from "slightly brutal" where we maybe get a very broken up version of 4-5 hours of sleep total, to what I call "close to insanity" brutal, where we never get a chance to fall asleep for more than a few minutes. Then there’s nights where there’s minimal drama and we are able to get more sleep than normal. On a typical night in her room, we are awakened every 30-45 minutes by either coughing/need for suctioning, the pulse ox going off if oxygen is dropping either from being on her side with a bad lung or secretions starting to build, loud breathing or her many different “trach sounds”, either from her upper or lower airway.  On average, she requires 5-10 suctions/night, but can be as low as 0-2 or as high as 50! She has different coughs that we’ve learned and doesn’t always need to be suctioned after each one. She might have a quiet, peaceful night or a loud, restless night. You just never know! This is all depending on a # of factors, mainly being Vivs coughing frequency, but also includes machine issues or her loudness of breathing. It seems that I am always up between 1-4am, as those are Vivs loudest hours, having various gurgles, whistles and gasps of air. Seth is better at sleeping through these, but it seems that I don't have that capability, so I just lie there thinking and praying, making lists of things to do or sometimes I just get up and get something done and try to go back to sleep when she quiets. Because it’s hard to cough up secretions when horizontal, there are some nights when her 02 will be low for hours as she’s “working” on getting something up and out and has to cough every few minutes. I’ve realized recently why I’m not just physically tired when I wake, but also mentally exhausted. When one is awake at night, one is also thinking, and because I’m awake a lot at night, I’m thinking A LOT, so my mind isn’t getting the mental break that slow wave sleep brings. This fact and my recent breathing issues (explained below) are two HUGE reasons why I must NOT over commit myself or our family and work hard to protect our sleep and down time. I’m not always good at this, but it does stop me from signing up for a lot of things that I otherwise would. Unfortunately, most of the new friends we are making don’t fully understand our dynamic life, as old friends do, so we find ourselves saying “no” to requests here and there to help or volunteer with this or that.

It's been almost 2 years without night nursing. There are times that I wish we had it, but overall, it's simplified and streamlined our life more, freeing up a few hours each week that I can focus more on homeschooling duties.

I still make Vivs take a nap almost every day and try to get a few minutes of snooze if she's doing well. I'm not sure how long I can make her keep doing this, but it's going to have to be due to our nocturnal life, as any sleep supplement during the day GREATLY assists my energy level LATER in the day. Thankfully, a homeschool schedule better facilitates napping and I'm grateful that she still falls asleep well for naps. I'm pretty sure it's because her night sleep is also interrupted a lot. Often, I only get a few minutes of shut eye during naps, as her usual pattern is to have a big cough 10-20 minutes after SHE falls asleep which is about the time that I’M falling asleep, and then I can't get back to that magical place again, but often, just that few minutes is enough! Then there are those once in a while glorious days where she falls asleep and doesn’t make a sound for A LONG TIME and I can somehow ALSO get to sleep and STAY asleep! I try to make sure we are ALL as rested as possible because we never know when she’ll get sick or one of US will get sick and can’t do night duty and the person who was already on 2-3 nights in a row has to take extra night duty, which can be rough, especially for Seth who has a mentally demanding job.

Some trach families stop sleeping with their kids at this age, but it’s not an option for us, especially after hearing stories of trached kids dying in their sleep simply because someone was NOT there to hear the alarm when their trach became dislodged or they stopped hooking them up to the machine all together or another series of unfortunate events. I’m not sure how many more years we will sleep WITH her. A lot will have to improve for that to happen. I’m not even sure if I’ll BE ABLE to separate from her at night. Even though it’s a huge sacrifice, I can’t imagine not sleeping with her. I have grown so accustomed to it. Spending nights with a child is incredibly intimate and I would miss many special and memorable moments if we didn’t have this situation that forces us to be with her. For example, one night when I happened to be coughing a lot, Vivs kept putting her hand on my head to comfort me. Then after a long time of that, she sat up, seemed annoyed and asked me “WHY ARE YOU COUGHING SO MUCH?”. “Excuse me, but YOU are NOT the only who is allowed to COUGH around here!”, I said. Well maybe it’s just spending nights with MY child is intimate because it’s SO DYNAMIC. Most children probably just sleep most of the night and don’t need anything, so you might as well be in your own bed getting sleep! HA! I also get to hear the things she talks about in her sleep, which is always precious. She’s so used to us being in there when she’s falling asleep and wakes up at night that she’ll often reach her hand over to feel our head just to make sure we are there. I always remember being lonely and afraid at bedtime, and just wanting to fall asleep to get rid of that fear, but then it would just come back if I woke during the night. The morning light was a welcome sight! We’ve tried repeatedly to just send her to bed like other parents do, so that we can talk or watch a show together, but ONE OF US has to go and suction every few minutes sometimes and it becomes a “IT’S YOUR TURN!” argument. So we’ve just agreed to let her stay up with us and that whoever has night duty simply goes to bed WITH her.

MY HEALTH

There was a time when I thought more exercise would help me feel less tired during the day, and started running again, but after never feeling better and researching that topic in context of our night situation, and the fact that I am often not able to get a full night sleep to recover after exercising, I came to the conclusion that it would do more damage than good. It seems that if one can’t get a consistent full night of sleep, one should actually CONSERVE as much energy as possible and NOT EXERCISE. This made me sad, but I tried to look on the bright side as this could be the best thing I've heard in a long time and gives me a great excuse! So I’ve tried to put my energy into eating healthier and lighter and keep exercise light. This seems to have helped a lot.

My one main prayer since Vivs was born was that I would be healthy to take care of her. Night nursing was a blessing to us the 1^st few years Vivs was trached, and I would surely need it if I had other children. So after being done with night nursing, I TRIED (didn’t always make it!) to take 5 nights/week and Seth took 2, so that he was never on duty before a work day. However, after over a year of this schedule, one day this last January, I suddenly wasn’t able to get a deep breath and it didn’t go away. I was scared and cried/prayed myself to sleep every night from fear of what would happen to Vivs if I wasn’t able to be her care taker. Right away, Seth had to take more night duty and a lot of things went by the wayside because I just didn’t have the lung power to function normally. The first time I tried to grocery shop, I became so winded by the time I got home and was unloading, I was so scared and emotional, that I came in and cried while Seth unloaded, put everything away and then just sat and listened to my fears. I went on QVAR to see if that would help (never did) and in the meantime, had many tests done to check lungs/heart/blood/allergy/mold. My lung function test showed some level of asthma after being low and jumping 20% after an albuterol treatment. I didn’t know what to make of this except that it could be from giving Vivs her breathing treatments (sometimes hours/day) for the last 6 years. Respiratory Therapists, who’s job it is to give breathing treatments, are at a higher risk of sudden onset of adult asthma and other issues themselves, so I’m sure it’s a factor for me. To my best understanding from a doctor’s explanation, this is because the lungs start to treat the meds as invaders and develop spasms in reaction.

A lot of my research about adult sudden onset of asthma pointed to stress and exhaustion. Although we live a very different life than most, due to Vivs medical needs and our nocturnal life, I feel like I try very hard to make a peaceful home and not be stressed or exhausted, but I had to give this some weight and right away, Seth took as many nights as he could so that I could get more rest to see if my breathing would improve. I have always had fears of experiencing health issues due to lack of slow wave sleep (the deeper, healing sleep after 45 minutes) because Vivs care requires us to wake up frequently during the night. Research shows that overtime, one may experience all sorts of issues; even organs shutting down from lack of adequate rest. This is why we still take naps and I try to get every few minutes I can and have always prayed that God would multiply my sleep minutes and keep me healthy in order to take care of Vivs.

After all other tests were clear and experiencing no improvement after being on QVAR for a month and Albuterol only making me breathe faster while jittery, I decided to stop all meds. The very next day, after 6 weeks of a rare deep breath, I started being able to get deep breaths more frequently and it kept improving from there. I didn’t know what to make of this except that maybe God had healed me. I had also done a lot of breathing exercises, praying and yoga during this time, desperately trying to slow my breathing. After it all settled down, I now take 4 nights a week and Seth takes 3. If Vivs is sick or has a random bad night, we try to go as long as we can in her room before waking the other person up to take over.

JUST THIS MONTH, six months after not having any breathing issues, they have returned again. After giving it a week and trying to figure out contributing/related factors, I started a new med, but stopped after 2 weeks of feeling horrible from possible side effects and not noticing any breathing improvement. I will talk with my doctor and maybe purse a CT scan to check for a more serious lung issue. Of course, I’m much less freaked out this time, but worried that I won’t find a med that works and this will continue to come and go, and never find out why. These recent health issues and our lack of sleep have made me even more vigilant in saying NO to a lot of things in an attempt to keep myself, our home and family peaceful.

DELIVERY SAVES MY SANITY!

Many things have made my life easier since moving. One of the biggest blessings (that benefits ME!) is having Seth work from home. This allows him to take more night duty and be more involved with Vivs, whether it’s helping with a trach change or other medical duties, homeschooling activities, or just having more fun. Home delivery of everyday items has been a huge help! With almost daily deliveries of either medical supplies or food/household goods, I rarely have to go shopping. This is safer anyway, since we live in a town with one of the highest crime rates per capita, I consider all errands I don’t HAVE TO DO, in my safety favor! I always say that, as an old soul, I don’t belong in this generation, but I sure do love the modern advancements of today! When I began having breathing problems in January ’17 which forced me to prioritize responsibilities, always having to keep nursing and homeschooling at the top, I finally gave up trying to cook healthy homemade meals for my family and began pre-made meal delivery a few times a week. This is something I’ve struggled with most of our marriage, as my teaching career & church music responsibilities demanded much of my time and energy, or I LET IT take too much of my time and energy. I loved it, but often found myself jealous of others who had a job/career that didn’t suck the life out of them or that they didn’t have to take home with them because I saw that they had more energy and time to enjoy things outside of work, which I had a hard time doing. Recently, I heard something like “DO YOUR BEST – OUTSOURCE THE REST” and decided to try meal delivery for a few months.  I was worried about the cost, but we’re actually NOT spending much more on food since we’re not going out or picking up take out as often as before and we’re eating smaller, healthier portions…and with Grandma making us a meal at least once a week, I can’t complain any longer about how hard it is to cook for my family…….but, I still probably will! It makes me feel sad and guilty that Vivs won’t have those warm memories that I do of my mom, cooking aromatic meals each night, but I have to get over it. Even though I’m usually always behind on SOMETHING and often feel overwhelmed, I am grateful to be able to stay at home. I have a great job. I can never be fired and for the most part, I can do whatever I want!

THE HAHNER HOTEL

Last year (because I was counting to see how many days we homeschooled), I found that we had 50 days of overnight guests! It’s a huge blessing to have friends and family, mostly from Humboldt, So Cal & the bay area, want to come so often and even though it’s a lot of work to host a part time free bed & breakfast/dinner/supper, it’s worth it not having to pack up all of Vivs medical machines/equipment for travel and it’s much more convenient being HOME if she gets sick rather than somewhere else. We also get to see a lot of people that we’d probably never see otherwise! I love the socializing and it’s great for Vivs physical and mental stimulation. It also motivates me to clean house more! As long as I can get a week or so to decompress, recover and reorganize, I’m usually ready for the next round of visitors! We try to have a lot of local friends over in the evenings, as that’s a time when Vivs seems to cough less, but not always. I don’t know what I’d do without Grandma Vivs help during these times. She helps a lot with food for company if I need. She also takes Vivs weekly for a few hours so I can catch up on the “kitchen counter of collision” as I call it. Maybe you have one too? I also use that time to homeschool plan, which is always “in progress”. We enjoy a weekly night of family time where Grandma cooks a delicious meal and we watch family TV and visit. It’s wonderful to be so close for all of this.

ONLY CHILD?

I still go back and forth on how I feel about it and ask God to make it obvious to me if I’m to have another child. If we didn’t do fertility treatments, we’d have to adopt. I’ve always desired more children, but there are so many cons for me and my sanity/energy level at 42. The ultimate argument that always wins out is that I CAN’T POSSIBLY get any less sleep than I’m getting now, having to do our own night nursing. Having another child would ensure that and compromise my care for Vivs and everything else I’m responsible for and possible propel me to insantiy. I have to admit, that sometimes, I type “benefits of having an only child” into google, just to make myself feel better!

VIVS PERSONALITY & INDEPENDENCE

Vivs has a sweet and joyful demeanor…mostly! She loves reading, playing vet and nature. She is generous, caring and still very sensitive and traumatized by anyone crying around her. She’s come a long way, but will sometimes freeze up and start crying herself from hearing someone else cry. We think this is because SHE couldn’t cry for so long and still doesn’t really, but more hisses when she’s crying.  Another contributing factor is being an only child and rarely hearing other babies cry. This year, she has started testing the waters in her obedience skills. I’m sure most of this comes from me, a not so mild-mannered mom who can be ornerier than most. On top of regular behavior discipline, she’s also needs regular discipline for NOT coming to suction when we ask her to or NOT doing it herself when we are busy.

She’s becoming more aware of our presence everywhere she goes and that she cannot be “dropped off” like other children. We attended our first zoo camp last summer and after all of the parents said goodbye to their children and left, she told me that I could leave her there too. I explained why that couldn’t happen and that I would be in the back if she needed suctioning. I teared up, tried to hold it together and kept a distance. I’ve realized that homeschooling is a benefit to us in this area as most parents often stay with their kids in the various groups and circles that we run in, so I think she’s not focused on that anymore and it makes me less lonely too!

At times I feel sorry for her because she’s constantly interrupted by coughing which is dependent on time of day and amount of secretions. Even though she’s used to it, we have to find the balance between making her “man up” or give her some grace and let her take some time off of whatever we are working on. This year, we started daily family read aloud time in the evenings which is often a time where her secretions increase and she needs more suctioning. This can be a challenge for anything we do in the evening, whether it’s watching a nature show or letting her play while Seth and I talk and sometimes it seems easier to just forget it if we have to stop and suction every few sentences!

Vivs loves to swim, but she can’t submerge her neck, so it can be quite a challenge. It’s becomes a bit easier as she grows taller and is a little better each year at protecting her trach. It is great physical therapy for her, but one of has to be next to her at all times with her pump to prevent any accidents. We don’t baby her about it or let people feel sorry for her when they come to swim. She knows that she can’t swim like others. When we get tired of managing her in the big pool, we kick her out to the baby pool where she still loves to play! Once in a while, she will wake up and tell us about a dream where she didn’t have a trach and she could go fully underwater. Even though it’s not recommended, there are people that swim with trachs, but she’s nowhere near even trying that.

About once a week, I have trach dreams where I’ve left Vivs somewhere, but I have the monitor. I hear her coughing but I can’t get back to her to suction. I have other reoccurring dreams where we see another trached family, but can’t get to them to talk to them or I’m trached and experiencing what Vivs does. In a recent dream, I was 7, trached and in a class with other medically fragile kids. I noticed a boy who was trached and suctioning himself. I seemed to be Vivs in my dream and I asked him how he learned to do that as I thought I was the only one who did. We somehow became boyfriend and girlfriend and I remember a great sense of relief finding someone else who was trached in life. However, I was still married because Seth “my husband” picked me up from school!

She’s learning to brush her teeth better, but we still do it first and then let her practice. The large tumor in her tongue makes it hard for detailed movement that aide in getting food out of and around the teeth as most people can do w/o thinking about it, which can lead to more plaque and cavities. Because any serious dental work for her would have to be done in an OR at Stanford or USCF, we are vigilant about her dental care.

Vivs can hook/unhook her pulse oximeter when going the bathroom during the night, read me her oxygen saturation and heart rate #’s, protect her trach in the bath & play in there alone as I come and go between chores to suction, and gives me time to stock and prepare medical equipment. She is getting up and going to the pump herself to suction a little more often ON HER OWN, but we still often have to MAKE her do it or suction her ourselves. She still often needs catheter suctioning down inside of her trach, which I don’t know if she’ll ever be able to do herself, but she can suction a bit better inside her HME barrel. The constant argument in our household is that I over-suction and Seth under-suctions. However, I have the better reason. I only get two HME barrels a day and I have to make them last and ration my equipment, so I try to suction them frequently to keep them lasting longer. There are so many things that I need to teach Vivs about her trach in order to gain more independence, but I feel like everything she’s doing now is age appropriate. I am working to teach her how to trouble shoot suction pump issues, locate and retrieve medical equipment from the closet and what to do in a trach emergency. She knows the basics of what to do, but needs much more training and my goal is that by age 9 or 10, she is almost fully able to take care of her own trach, unless sick, but that might be too hopeful of me!

ILLNESSES

Even though the condition of Vivs airway remains fragile, she has had her best year yet!

For the last 2 years, we have been able to manage Vivs illnesses at home. PRAISE THE LORD! Vivs is STILL sick on average every 3-5 weeks (12x last year, totaling 55 days of illness). However, she can be WELL for 2 months or sick 3x in ONE month! Any increase in coughing/secretions can be the beginning of an illness. It can happen fast, like with a giant cough during her nap, or slowly over a few days w/ a gradual increase of secretions/coughing and change of oxygen/heart rate #’s. Everything has to stop when she’s sick to make airway clearance top priority in order to prevent pneumonia and stay out of ER/ICU. Seth immediately takes a secretion sample to the lab to check for serious infections, start round the clock treatments and do lots of suctioning. I used to have to sit with her THE WHOLE TIME – DAYS and often still do if she’s coughing constantly, but it seems that she’s having more illnesses where she’s not completely out of it, can sit alone and feels just a bit punky and doesn’t need me there every minute. But I often like to just be with her during these times and let it slow me down in life, as I can get too carried away with tasks. When else can we drink soda and watch hours of TV? However, in just a few hours of taking care of sick Vivs or having a rough night and/or no nap, I turn very testy, overwhelmed & usually on the verge of tears from exhaustion, so I usually cancel all happenings that week.

Seth is a great help during these times and takes more night duty, sometimes even having to split the night in 1/2, so it’s still very challenging. Although she’s had more frequent “shorter” lasting illnesses, she still often seems to take a long time to get back to her baseline after being sick, sometimes up to 2 weeks. Sometimes even when well, there are many days/weeks where I don't feel comfortable taking her anywhere and cancel all classes/therapies/appts because she's simply having more sudden, violent & frequent coughing, and needs more catheter suctioning, but isn't obviously sick. These days, we do full treatments just in case something's brewing and just lie low. We think this could be from allergies, aspiration or other factors. Honestly, I’ve grown weary of keeping my scientific chart of “secretion factors” in an attempt to figure out why they increase and decrease so much. After 4 years of this and finding no correlations, I gave up and just accepted it! Around age 5, after 4 years of avoiding going places to limit germ exposure because it almost always meant hospitalization, I found myself going a bit crazy and realizing that she’s sick even if we stay home, so I started taking her places and risking germ exposure since we hadn’t had to go to ER/ICU every time and I was desperately needing more outings. However, if I NEED her to stay well for something important, I am less likely to take her out and about that week before, just in case!

Seth's family just recently came again. I think it was only the 2nd or 3rd times they have seen Vivs well during all of their visits over the last 6 years! Her wellness during these times makes it so much more enjoyable, as we have minimal treatments and suctioning and can have more quality time together.

CURRENT CONDITIONS

Vivs secretions/coughing are less than what they were a year ago (50-70x/day), which was less than a year before that (up to 100x/day), so we are seeing improvement. We are hopeful that this will continue as her airway grows. We now suction between 30-50x in a 24 hour period, most of that during the day, but not always. This averages to about every 10-20 minutes, but Vivs can often go 1-2 hours w/o coughing! This can look many different ways. Some days, I'm suctioning what seems like every few minutes all morning during treatments & homeschooling or “suction-schooling” as I call it, but then it's less in the afternoon/eve. Other days, it's the opposite. Sometimes, it's more suctioning during naps/nights than day time. There are days when she seems great and I decide to take her somewhere, then she coughs a ton! Other times, she coughs more AT HOME than out and about. We think her airway may be a bit improved since she's needed more nose suctioning from a runny nose, which is super rare with her, as most of her secretions don't make it up that high! I have taken to trying to get all of the sugar out of our house to see if that affects secretions at all, but to my best observations/charting, it doesn’t change a thing.

Vivs recent annual MRI showed all tumors in airway and lower lumbar to be stable. The lower spine tumor is too small right now to cause any issues and we continue to watch the optic nerve area, where one side looks like it has the beginning of an optic gleoma, but can often stay that way for years in NF patients. If nothing develops with loss of vision by age 10, we are probably safe in that area. We continue to keep the pulse on clinical trials that may benefit her. There is A LOT of progress happening with tumor treatments in NF1, but the risks are too high for the benefit. Doctors are hoping that in 5-10 years, there will be a shelf medicine available that may decrease tumors.

Her most recent nose/trach scope shows she still has a turbulent and fragile airway with significant tracheomalacia (loose, floopy trachea) and narrowing in her upper airway below her vocal chords, as well as the narrowing just below trach and lower down in left bronchus near lung. It’s ironic that she HAS A TRACH due to her UPPER airway tumors, but it’s her LOWER airway tumors/narrowing that cause the most problems with secretion management.

Lately, I have been experimenting more with treatments and what’s really needed vs. what we’re told by doctors to do. I was afraid to get away from our strict regimen for so long and did 2-3 hours of “suggested” daily treatments NO MATTER WHAT for the last 6 years. Now that I need more time to homeschool, I don’t want to waste time doing unnecessary treatments. I moved into doing a little less when well and seeing how she did and NOW, after a year of that experimentation and feeling more comfortable with decreasing treatments w/o danger, I’m only doing what I feel is minimal and trying to adjust it according to her #’s/secretions the night before. If I notice an increase in thick secretions or she’s obviously sick, then we do our full regimen of spending about 3-4 hours on 10 treatments a day for airway clearance to prevent pneumonia.

People with NF1 have dozens of café au lait spots all over their bodies and Vivs is no different. However, in this last year, I keep noticing new ones. I’m not sure if they change, disappear or multiply. She has some very cool looking ones that look like shapes that I will catch her starting at for a long time. I also just recently noticed that she still has her upper lip scar from 6 years ago when her tongue swelled out of her mouth from a surgery, that it stretched it!

SPEECH THERAPY/SIGN LANGUAGE

In the last 5 years, Vivs has qualified and graduated from speech THREE TIMES, the latest qualification being under “connective language”. She has come a long way and has mastered many sounds that her tongue tumor was inhibiting, but she still easily falls back on quick, blurry speech and needs frequent reminders to speak slowly and clearly. I will still have her evaluated every 6 months for digression in order to stay on top of any issues. We could pay privately to keep her in speech between graduations/requalifications, but honestly, I need the 6 month break from weekly classes every year or so, as it’s been the schedule so far.  It frees us up to enjoy company and more good old fashioned play time.

She speaks clearer in conversation than in reading aloud, where she has a harder time maximizing her breath and many words are lost on her inhale. Also, when reading vs speaking, she’s lazier about emphasizing sounds that her tongue tumor makes difficult. We go through phases of making her wear her Passey Muir speaking valve since she still has a hard time wearing it for long periods of time due to the pressure she feels from it. It allows air in from her trach but not out, so there’s much more pressure on her upper airway on the exhalation I assume. Depending on how much she’s coughing, that can be another challenge. She stopped signing this last year for the most part, but is now starting again for some reason. I sign to her when speaking most of the day to keep her up on her skills and we continue to learn new signs weekly. We’ve come a long way for not being in the deaf community, which would make us more fluent much faster, but for now, I try to keep a slow and steady progression to increase vocabulary and keep up on it as a back up communication if things go south with her airway.

A NEW BACK BRACE – PHYSICAL THERAPY

During breaks from speech, we tried to go to physical therapy more...strengthening her core and working on leg strength, balance training and spinal extension posture training to fight her kyphosis (rounding back) & scoliosis which is what I'm most worried about these days, even more than trach issues at times. Most doctors agreed that we should try to avoid having her wear a back brace for as long as possible because of the chances of it compressing her airway even more (upper and airway tumors already do) and we don’t want it inhibiting her airway clearance as that would cause more pneumonias.

But this last year, it’s grown increasingly more obvious that I have to remind (NAG!) her every few minutes to straighten up tall, shoulders back, but she’s not able to hold it for long due to her weak core and upper body muscle tone, so I would have to make sure we had several strategies to make her sit straight, sitting a CERTAIN WAY in the chair, watching TV or playing. I had gone back to holding her during most treatments to keep her from slouching over, as she was doing when sitting alone. If she was in an adult chair, she had to have her feet on a stool and pillows behind her back. None of this seemed to help. Growing increasingly sick of hearing myself nag her about it, and then seeing a past picture and noticing how much worse her “relaxed” back posture had become, I decided it was time to have it checked and pursue a back brace. Her xray angle #’s showed extreme digression over the last year. We went to Oakland to meet our new spine doctor.

He showed us significant digression in her back over the last few years, where her angles were 43 degrees (40 is normal) a few years ago and now 72 degrees in 2017. People with NF1 often have unusual spines and other bone shapes that she’s seemed to avoid for the most part. NF1 is probably programmed to give her kyphosis. It’s not a muscle issue, but a bone issue, so not likely that any amount of muscle tone strengthening will improve it, but might only keep it from worsening. People with NF have a different quality of bones and it’s common around this age to have quick scoliosis/kyphosis growth. It’s very unusual for a brace to resolve it but can only arrest it at bay and prevent any more digression. Surgery to correct kyphosis is way too invasive and only suggested in desperate cases. Because Vivs is more flexible than most, there MIGHT be some correction if she wears the brace as much as possible. This is a challenge as we are worried about successful airway clearance while wearing the brace, and will have to limit the brace if she can’t clear her airway as that’s more important. She also has mild scoliosis, but doctors aren’t worried about it yet.

Of course, I was very emotional about this, having felt like I hadn’t done a good job helping her posture & feeling mad at doctors for not making her wear one earlier and mad at myself for not demanding it. I was also fearful of how it would affect her physical activity since she’s already behind and hoping that it wouldn’t be too much of a battle to get her to wear it. Well, it was a battle for a while and sometimes it does seem like it either keeps her from clearing her airway or makes her cough more at times, but we’ve never been able to figure those things out so why start now? Fast forward 4 months as we are in a groove and she is to wear it as much as possible if there will be any correction or we at least hope to arrest any further kyphosis. We give her a break during physical activity and often when friends are visiting, but we make her wear it during all TV watching, eating, driving, homeschooling table time and piano lessons. I feel like I take it off and put it on 10x a day (can’t go bathroom w/ it), but that’s how it has to be. Because a child does not have the discipline and motivation for self-correction, it's sometimes a struggle between her and I. She’s getting a bit better at doing it herself, but it’s difficult for her to get it just right. It’s going better than I expected at this point, but she often begs to take it off and I have to decide if it’s worth it at the moment or not. The hot weather has made it a challenge in keeping it on. We’re taking a break from P.T. and just wearing the brace. She will have more xrays soon to check progress and we will talk about how to proceed with P.T. at the upcoming NF clinic in Oakland.

“COVER YOUR MOUTH!”

After having some guests over for dinner and catching a glimpse of a horrified face while Vivs had a bad coughing fit while eating, it suddenly occurred to me that we've never taught her to cover her mouth when coughing! Why? Well, because she was so little when this all began and no air ever came out of her upper airway, but all went into her HME. She can cough violently directly in my face, but I feel nothing! However, it hit me that this is something that we are going to need to train her to do, just for the appearance of public manners! This has not been as easy as I thought it would be and sometimes I just don't even care, after dealing with so many other things. At home, I don't ever really think of it as we've grown accustomed to her frequent coughing. But I'm starting to see more concerned faces when out and about, so it is something that I need to be more on top of. ARG! I still feel like it’s a waste of my time and energy because it all goes into her barrel, but I have to think of how I would feel as a stranger nearby and seeing her cough w/o covering her mouth!

TWO PIANO TEACHERS!

I started lessons with Vivs last year and we were just getting into a groove when she became sick 3x in a month and I just couldn’t get the groove back. I had wanted to teach her myself for at least a few years before having to pay for lessons, but after coming to the realization that I’m teaching her EVERYTHING and I’m going to have to outsource some things to keep my sanity, I decided to pursue in home lessons, which benefits us in a few ways. First, even though I have to stay near to suction, it gives me a bit of time to get something done. Second, it’s one less thing to have to leave the house for, which saves time/energy for other things we have to do, like speech/P.T. and frees us up to do other out of the house enrichment activities if we want. Having a teacher for her has actually really helped me to teach her more affectively as I simply follow her program and daily practices with Vivs are like additional lessons and it allows me to participate in her piano education as well. She knows she has “two piano teachers”!

It was obvious during the first few times that I was going to have to pay for a longer lesson due to Vivs frequent coughing and interrupting with stories and such, which took up a good portion of the time! She doesn’t always cough a lot during her lesson, but I think the longer time allows more freedom and quality instruction…so far, anyway! I am very sad to move on from our 6 years of weekly Music Together classes, which allowed us to meet great teachers and families, have exposure to a ton of high quality music, and train Vivs well in musical improvisation, something we spontaneously do daily and greatly shows during her lessons! I am honored to have participated in a program of such high caliber.

HOMESCHOOLING

I used to see my life divided into two parts, as “pre-trach/post-trach”, but now that’s changed to “pre-homeschooling/post-homeschooling”. After getting settled here in Stockton and FINALLY getting Vivs pottie trained after what seemed like forever (due to frequent illness/hospitalizations where she was so out of it that diapers were necessary, even at 4 1/2!), I began more formally homeschooling Vivs. Although it wasn’t obvious to me at first that we would homeschool, it became clearer as I played out our lives and how it would look if we sent her to school. Two main factors influenced my decision. First, I came to the conclusion that I would NOT be able to send her off to school with a nurse that WASN’T me and if it was me, because of my teaching experience and obsession for efficiency, I would be wasting both Vivs time and my time as well as be a possible distraction for a teacher and class with all of the suctioning she sometimes needs. Second, simply based on her medical issues, custom trach care needs, the dynamic life we have (especially when she’s sick) and the amount of time spent in medical appts., therapies, breathing treatments and illnesses, it would make it all a very inefficient process of getting educated as well as make our day VERY STRESSFUL having to get up early for treatments before school and then have to fit in therapies/appts in the afternoon AND homework/projects in the evening. If I had to work, I’d have to put her in school with whoever nurse was available, but I don’t have to, so NO THANKS…not the kind of life I want for my family if I can avoid it.

It suddenly hit me last year when logging one of her illnesses in a calendar I keep, that I will have to teach her year round and need to get her as far as I can as efficiently as possible due to her medical issues. On average, we lose 2-3 months a year in illnesses/therapies/appts...even this last year being the best so far, but still sick 12x. Although I think and pray she will continue to progress and need less care, there is a chance of many more serious issues arising with her NF1 diagnosis. Many people w/ NF1 lose their vision and experience serious bone/skin issues and can have many behavior/health problems. I keep these fears for her below the surface, knowing that she may skate by w/o any more issues, but also knowing that something can come up quickly and change her life drastically. So I try to let this be my motivation for setting high standards so she can glean as much knowledge and richness from all that there is to learn, especially if she is going to have more serious issues to deal with in life. A capable and stimulated brain will take her far…I HOPE, ANYWAY! I am attempting a year-round, accelerated program to complete K-12 curriculum in minimal years, but of course, will assess year by year for adjustments. Thankfully, she seems to take after Seth in her learning ability, more than mine! Let’s just say that we have regular conversations that go something like this:  Seth: “Didn’t you LEARN that in SCHOOL?” Me: “PROBABLY, but I don’t REMEMBER it. I just had to MEMORIZE it for the TEST”.

The first year here, I knew few homeschoolers. I was lost and overwhelmed, trying to get connected to the local community and praying for wisdom as I was trying to form my plan of attack. Even with my teaching experience & physical resources saved (basically a small town library & music store in this house!), I have had to re-develop my philosophy of education. Homeschooling successfully has little in common with managing large class sizes of kids and honestly, minimal “teaching” is achieved in this setting where I spent so many years. I find that I constantly have to break my “box” of how I “learned” to “teach” and my soul aches at how much malarkey I’ve been brain washed with and put into practice over the years in my classes. I’ve absorbed a higher quality & caliber of useful information in the last few years of homeschool research/reading than in my 13 years of public education, 9 years of getting a B.A., teaching credential/Masters in education and 12 years of teaching elementary school! Ironic, I know, but that’s how a lot of past teachers who homeschool, feel. My “teaching credential” and time in the classroom taught me more about how to manage large groups of children and the systems needed to make that possible than actually how to teach. It gave me the big picture and I’m very disciplined and consistent in behavior expectations from having to create and keep a structured, organized environment. But honestly, most of the homeschooler moms I know don’t even have a college education and they are better at it than me in so many ways. I often have a lot to learn from them as they are more intimately in tune with teaching their children where I’m busy trying to get a “worksheet” done and achieve a “test score”. It’s taken awhile, but I’ve forced myself to move AWAY from thinking in terms of a “grade level” and have become much more lax in my approach to learning and how it’s achieved. I’m still very grateful for the my teaching experience, especially in the area of science since it was a huge weakness for me but I was hired at a Science Magnet School which took me out of my comfort zone and really grew me!

Having since met more homeschoolers, getting connected to the local community and spending the last year attending as many events as we could when Vivs was well, I now have more homeschool friends and connections than I can keep up with! PRAISE THE LORD! I was invited to participate in a homeschool mom’s prayer/support group and it’s brought great comfort and guidance for me. I’ve met some wonderful families through all of this, who I learn a lot from and hope that they will be lifetime friends. After tons of reading and researching different philosophies/curriculums, I am finding myself settling into a mash up of Classical and Charlotte Mason, which are opposite philosophies but many homeschoolers dovetail them quite nicely. I was going to stay independent because of our year-round schedule and the fact that I don’t want a “boss” or need accountability, but I’m feeling a need for more of a backbone, a skeleton, a road map and sometimes overwhelmed by the huge responsibility of homeschooling long-term. So this year, I will be joining a charter as well as a Classical Conversations community one day a week and continue teaching CM style the rest of the week. I didn’t think I could get away from all of the “worksheet” focused learning, but I deeply love a more literature based approach and we spend a lot more time reading good books and talking about them than formal table learning. This girl already has a better literature repertoire than I had by middle school!

Because of my personality and teaching experience, I make homeschooling MUCH harder than it should be and have to combat this EVERYDAY, but I’m at least over the “honeymoon” phase and at that point where I can’t take another group, suggestion, idea, philosophy or book about homeschooling! I have filled my mind and educated myself for 3 years and now I need time to process, implement, and adjust! Homeschooling, for ME anyway, is a messy thing, both mentally and physically. I’ve got a dozen tabs open in my brain at all times and “homeschooling” is all over the house. Seriously, it’s EVERYWHERE!  I fought it for a time, but now could care less. It’s mostly because I have to homeschool AND carry out nursing duties, often at the same time. While homeschooling, I’m often suctioning (morning times are often Vivs worst), on the phone with the pharmacy/dr., or ordering/cleaning/prepping medical equipment as well as doing domestic chores. Although I HATE TO MULTITASK (I’ve just learned that it’s actually bad for the brain), it’s required of me and if I want to keep our evenings/weekends/Sabbath SINGLE-TASKING & low stress where we can have unstructured time, then I have to work like mad most mornings and multitasking is the only way to do it.

I’ve learned that I’m more of a low energy homeschooling mom. The lack of sleep and my recent breathing issues have forced me to slow down and conserve the energy I do have for homeschooling. That’s about all I can accomplish on top of my nursing and domestic duties each day. I had a hard time with this at first, trying to do too much and becoming too busy and hating it, realizing I was not present, confusing motion for progress, needed to multitask even more to get things done and had little time for doing nothing in order to think, process and simply enjoy life. My recent health issues and the fact that I have to protect our sleep have helped me to embrace boundaries more.

Having access to a lot of nature around us has remedied some of my rushed and task oriented personality. We are able to do a lot of nature study by just going outside and looking for something interesting. We see lots of bird varieties, ranging in size from tiny bush-tits/finches, a rare baby owl sleeping on our road, all the way up to enormous vultures that nest in nearby trees. We see lots of different spiders, our favorite being jumping spiders which don’t build webs but release spinnerets when they leap for prey and turn their head to look at you! We recently saw a tiny baby jumping spider that jumped only a few inches at a time while releasing its silken thread. We had a unique moment with a wolf spider and didn’t realize its “bumpy” back was actually dozens of babies until we saw the spiders “multiplying” in our study jar! We love looking for insects, the tiny baby praying mantis being our favorite because it’s so hard to find, being tiny and green. Every spring, we put out random building supplies for birds and then hunt for bird nests and re-visit often to see the different sizes of eggs and how the babies grow. Last year, a not-so-smart hummingbird built a low nest on one of our front patio plants...right at eye level, and then laid 2 eggs in it! It was such a precious time of learning as we watched them hatch, saw how hard mamma bird has to work to feed them as they almost double in size each day and did OUR PART in preventing the cats from finding the nest. We even only went out the garage entrance for a whole month so as not to disturb them…all this, until just a few days until they were strong enough to leave the nest, one of our cats heard them chirping and then, of course, the nature lesson took a different turn. Let’s say in our bitterness, we didn’t give Oppie ANY TREATS for a long time! 

Our house has become a reptile and aviary sanctuary rescue with three cats bringing this and that in to present to us. It’s worth it as they do a great job keeping the mouse/rat population down around the property! If I hear Vivs say “Moooom, co-meeeeer”, then I know to grab a towel and our critter catcher jar! The birds are usually fine, but sometimes need a little rehab time, and most lizards play dead, but are really alive, just waiting to escape, but with a much shorter tail. We just throw them back outside, probably to be caught again. Grandma Viv had a good scare one day after sweeping under something that I’m too lazy to lift. It was a MUCH LARGER THAN NORMAL LIZARD, dead, but completely intact! I sure hope this doesn't keep her from coming to clean again! Recently, we witnessed the moment when a lizard loses its tail, but the tail keeps dancing around for a few minutes to be a distraction for the attacker as well as taking time for the nerves to stop working. IT WAS FASCINATING!

In all of this nature study, I am reminded of the Bible in Romans 1:25 “They exchanged the truth about God for a lie, and worshiped and served created things rather than the Creator…” and are daily amazed and humbled by what we see around us and take great comfort in knowing that it was all purposefully designed.

SETH

Seth is a wonderful husband and father. He continues to be very involved with Vivs as well as be there for me with an ear and advice for my little break downs when I get overwhelmed. Since moving here, he’s built a chicken coup, swing set, sand box, teeter totter and a picnic table. He helps a lot in Vivs care and takes on my least favorite chore of regularly going to the pharmacy to pick up Vivs meds and supplies. I did it in the beginning, but quickly realized the danger in the germ exposure and my frustration in dealing with the SAME DRAMA EVERY TIME in getting certain supplies here in Stockton that we didn’t have an in issue with before.

He’s been able to do more hunting with my dad and nephew and has been able to practice his favorite hobby of marksmanship (target shooting) much more here, as there are closer outdoor ranges. He qualified for the American Marksman Competition in Vegas last summer and took his Dad for a fun weekend together. He ended up taking 3rd place, which we were both happy about, because it proves he's good, but he doesn't have to go to another longer competition further away, something that's difficult with our medical life as he's my night nurse & suction relief! I’ve even gotten MORE worried about who goes where and how far, simply due to our parental medical responsibilities for Vivs and how hard it would be if something happened to one or both of us. The first few years, I took some little vacations away, but I was anxious the whole time and couldn’t sleep, thinking about what if something happened this far away and I couldn’t get back. I finally decided that it wasn’t worth it for me and that’s is simply not wise for us to “get away”.

He goes to a men’s weekly prayer group and is making friends at church and in our homeschool community. Not having to commute every day and living closer to our church has allowed more of these types of involvements for him. This year, as Vivs improvement will hopefully allow for, we will host a Bible study in our home, which allows us to be better involved in our church and fostering those relationships.

CHURCH – WHY SHOULD IT BE SO HARD?

We didn’t even START looking for a new church the first year and a half we were here due to the work getting settled, adjusting to taking care of a bigger property, Vivs frequent illnesses and still being in and out of the hospital. I would cry every Sunday, missing our long time church and community and knowing that it would be hard to find that again, probably even impossible as it was enveloped with so much of our history with Vivs and everyone being so gracious and generous to us. Let’s just say we were a little spoiled with attention! I was surprised by my anxiety about finding a new church. I kept putting it off, even when Vivs was stable. Even though I’m VERY out-going and extroverted, Vivs situation has changed me some and I was finding that I didn’t want to put forth the effort to make new friends and get involved in a new community. I didn’t want to have to explain our life over and over and was continuing to grieve the loss and the comfort of being surrounded by people who already knew us well.

I decided I didn’t want to go exploring churches as a whole family w/o first scoping it out to see if it would work for our situation. I firmly believe in having children mostly in “big” church with adults so they learn how to behave and listen. However, this view is not popular much anymore and now most churches have children’s program where they “suggest” kids be sent. We COULD keep Vivs with us, but don’t like the coughing and suctioning to be a distraction for anyone and it can be incredibly awkward in a new environment. So I decided I would go church exploring alone. During EVERY one of my visits to a new church, I would be overcome with a mix of emotions and often couldn’t hold back the tears. I LOVE CHURCH more than the average person. I grew up in church and went many times a week, sometimes for children’s church but often sitting in big church where I loved to sing from the big hymn book and listen to the speakers and watch everything. Let’s just say that I love church so much, that I was one of the few at Bible College that DIDN’T try to skip chapel every morning. It has great meaning and comfort for me. I deeply enjoy singing and listening to God’s word being preached.

After visiting MANY area churches, I sent Seth to visit a few to see what he felt. After praying for wisdom, we picked a nearby church that we felt very connected to and felt was an obvious choice. It had a lot of homeschoolers, just ONE service, which I liked and they embraced traditional music. I’m an old soul and somewhere along the way, have grown EVEN OLDER in my views and tolerance levels since having a baby, living in the hospital and being over stimulated, having to have a laser focus on Vivs care, battling lack of sleep and mental exhaustion. I completely stopped watching/reading any news as I couldn’t process hearing about every bad thing happening in the world. I’m 42, but I’m really more like 65! I’ve also become quite jaded in life and am finding myself having that “been there, done that” attitude, which I have to be careful about, but I’m just not excited about much anymore except sleep, keeping ahead of my home duties and having family down time in the evenings/weekends.

Finally a Sunday came when Vivs was well and nothing else was going on, and we decided to start the new church journey as a family and visit the chosen church. I was very nervous about being with Vivs in a new Sunday School environment, so made Seth go with her the first time while I attended service. Seth and I trade off each week being in SS with Vivs, so we are rarely together, which can be a blessing and a challenge. It’s a blessing because we get to know the teachers, other volunteers and other children that most parents never do because we stay in with Viv and often help where we can. The challenge is the “other” parent is always alone in the service. Seth doesn’t mind this, but it’s difficult for me, especially when trying to meet people and integrate into their already established community. I’ve become more fragile and sensitive to people’s reactions to me as I have to attend service alone, also feeling so alone in a huge crowd, always having been able to make friends effortlessly, but now it’s proving NOT to be so easy.  Another challenge, mainly for me, is that Sunday School is pretty much kid-sitting so that parents can sit “peacefully” in church. There are a lot of great teachers I admire in these positions, but it would be much more affective if there weren’t so many over-tech stimulated, disrespectful, misbehaved, attention starved kids that are used to everything being “kid-centered” and “entertaining” to hold their minute attention spans. They end up being a huge distraction and need constant behavior redirection. Their parents either KNOW this and WELCOME THE BREAK, or have NO IDEA how their child behaves when they are not present. We help where we can in this area and Seth is much more unaffected, but this exhausts and discourages me mentally and there have been many days I leave Sunday School agitated. People homeschool their children because of these same issues in a school setting. Sunday School began as a way to teach catechism and religious discipline, but children would still attend church with adults, where they learned how to behave appropriately and listen to mature teaching. Now, children are almost NEVER with adults in most churches, and valuable resources are spent on keeping them separated. I mentioned before that I don’t belong in this generation!

We continued going week after week, rarely missing a Sunday because Vivs was in a wellness streak and if she WAS sick, it was Monday through Saturday! I felt humbleness and deep loneliness from not knowing anyone around me and discouragement, knowing the work it’s going to take to change that. I also felt great joy and fulfillment, being able to go to church and worship God after not being able to go for almost two years from being in and out of the hospital, drug weaning Vivs, adjusting to trach life and staying home simply to keep her well. It can often be a challenge for us to get to church, but a privilege to be able to bring Vivs. We thought she would die over and over again, and here we are and she’s ALIVE and now she’s stable enough to GO to church. We have a lot of thank and praise God for!

After 2 months of trying our darndest to meet people and make friends, we realized we were getting nowhere. God seemed to have mercy on us here and there and we would have a positive, hopeful interaction, but it would lead to nothing. Another 2 months went by and we still hadn’t made any progress. I knew that God was teaching me a lesson, making me more dependent on Him and less on friends and community. He was also teaching me to relinquish control. After all, is was ME who CAREFULLY chose this church based on things that I LIKED! I was in full control, right?

Each week, all of my excitement and anticipation of going to church started seeping out, replaced with nervousness, anxiety & frustration, more after each week of not feeling like we were connecting. It's incredibly humbling when you try to get to know people and no one seems to care that you are there or try to get to know you. I've always been annoyed when I heard people say "no one talked to me" because really, that means that THEY didn't talk to anyone and it’s natural for people to be shy and reserved in that context, especially if that’s your personality. However, if you know Seth and I, you know that could never be the case! Our previous church community spoiled us for love and attention, even from the very beginning and I felt like most people, including us, worked VERY HARD to make newcomers feel welcome and get connected, taking it further than "my name is...". No one seemed to care that we were there or had any interest in getting to know us, or even seem to care when we try to get to know them. We were pretty much invisible, which is incredibly humbling...something I'm sure God is always trying to teach me, as I deal with a lot of "pride" issues! At first, I wasn't too daunted by it, but after a while, it starts to play on your psyche. We didn’t want to judge too quickly and give up and decided to keep plugging away, trying to meet at least one new person each week, not matter what crazy one liners I had to use to start a conversation.

Because I have the gift of hospitality and practice it often, it really hurts me when people seem to have no concern or interest in getting to know others. I know a lot depends on personality type, but I guess I’m tired of people using that as an excuse. Having conversational and relational skills should exceed personality or mood, in my opinion. It was like a slap in the face after all that we had been through, not being ABLE to go to church and freely enjoy it like so many and missing it dearly. Was it just irony, coincidence or a clear message from God that we were so excited to find a new church community and had so much to give in friendship and love, yet unable to find it in a most obvious setting? It seemed the last thing on anyone’s agenda to make a new friend. Everyone seemed “full” in that area and simply too busy for such things.

Seth and I had endless conversations about this, trying to figure out why this might be. Did I make the wrong decision? Why is this SO HARD? This many people CANNOT be so unfriendly, uncaring and oblivious….CAN THEY? It all has to be JUST a coincidence, week after week, right? I’m sure next week, things will start lookin’ up! Maybe it’s our unique situation with one of us having to be with Vivs that’s affecting it? How can we be having SO MANY BAD EXPERIENCES? Why does it feel like pulling teeth to connect with people? It went from being funny to sad to scary. We’re likable, fun people and have a lot to give… or maybe not. Maybe we’re old and out of touch? If we were introverted people, our lack of progress would make sense, but we are NOT, so God must just be trying to make it OBVIOUS that we need to move on, right? But maybe we should STAY and keep TRYING because things like this can take years. We discussed the science of how groups of people develop a “vibe”, a “personality” and why someone would decide to stay at a church or move on. We knew better than to take it personally or make judgments on people or the church as a whole. We’ve been involved in church OUR WHOLE LIVES and know the drama and the frustration that comes when putting humans in a building together and have been a part of churches through the ups and downs. We also know that people can unknowingly act a certain way and no one is responsible for getting us connected or making sure we feel at home. It’s really OUR JOB to do that and to get involved. Proverbs says “He who hath friends must first show himself friendly” and we were trying our hardest to do this.

In one way, it was nice that no one knew us and our talents/abilities because we can’t offer those much because we aren’t dependable anymore and have to put Vivs care first. After doing it for over 20 years, we have made a purposeful commitment NOT to commit to do any church music or sound for specific reasons to protect our family. So it works more in our benefit for people NOT to get to know us because no one asks for help and nothing is required of us!

So what to do? We knew that we were going to church to connect to God, but heck, we can do that anywhere. We need community! So after we felt that we had given it a valiant effort, we decided to move on. We took a break for a while to regroup and start again. We decided to visit a church that was outside of my “required travel radius” and from the first few weeks, we felt connected. I even recognized a few homeschool families and their friendship and “connections” was what propelled me into the local homeschool community. We go as much as we can and do as much as we can and don’t over think it. What’s the lesson to be learned? Well, for me, it was letting go of my control and allowing God to humble me and depend more on Him. For all of us, it’s remembering to be nice to people, to reach out, to not let your “shyness”, “introverted-ness” or “busy-ness” keep you from making a connection, possibly a new friend or simply spreading God’s love in kindness and hospitality. You never know who’s next to you in the circles that you move in, who needs an ear, a friend, some advice or a connection that you have that they need…or someone like me, desperately seeking a new friend, a community, after having left one and feeling lost, alone, and anxious about bringing a medically fragile child into a new community. Thankfully, we don’t have to be dependent on PEOPLE, but God alone. However, it sure helps to have some friends along the way!

We recently enjoyed a 3 week RV road trip with my parents and traveled to Missouri to visit family that I spent every summer with most of my life before college. It was not an easy task preparing all of Vivs equipment and having to have back up generators in case of the worst case scenario, but an RV was the best way to travel in order to keep all of her equipment with us instead of flying and having to have most of it sent, which was a lot of work when we did it a few years ago. We enjoyed so many wonderful moments with family and all of the animals on the farm and we were even able to stop in Nebraska and Colorado to visit more family. Vivs was sick the week before we left and took the whole week and the ENTIRE 3 days of traveling there to get better and stayed well the whole time except for one day where she seemed to have a little bug! PRAISE THE LORD! I don’t think I’ll be able to travel any other way now! We hope and pray that we can have more adventures like this, but I’m always anxious because she can get sick anytime, anywhere, and it’s so much easier just being home if that happens.