After a long and very wet winter and spring, summer is here, well unofficially here!
Summer is a great time to get out and explore and connect with nature, breathe fresh air, adventure, snap pictures, attend and host BBQ’s and bonfires! Enjoy the beach, mountains, lakes, rivers, ocean, forests. A great time to go on a cruise, go camping, do a road trip, day trip, picnic and travel abroad!
But please take time for family! We all get so busy that sometimes we don’t include family in our summer plans.
Only getting together with family for winter holidays is not enough!
When our children were littles, summer was all about family time! Camping and boating and road trips and outdoor adventures! Watching shooting stars! We bought a fire-pit and had many campfires every summer in our own backyard with s’mores and family time! And trips to go see grandparents and extended family!
Now my littles are all grown up, my littles are bigs now, and living here, there and everywhere.
If you live away from your parents or your children, it’s hard to get everyone together in one place at the same time, but try!
Try to plan ahead so you can meet up with family somewhere this summer all in one place! If it’s one of your homes, that’s great, it doesn’t have to be some fabulous vacation destination or cruise! But bonus if it is! It’s all about staying connected with your family, not necessarily the location. But if y’all can meet at a great location, that’s great!
An absolutely awesome and wonderful way to connect with family over the summer is a family camping trip! Invite grandparents, aunts, uncles and cousins! Make it an annual event!
I am so lucky that my sons live in some great places! Last summer, we had a family weekend in Yosemite where one son lives and works. Then we had a family weekend in Laguna Beach where another son lives, works and goes to school. This year, there was a Hollywood weekend where another son lives off-and-on! One son couldn’t make it to Hollywood -and that happens- another son was unable to join us for Easter. Work and life get in the way all too often. But make the effort! Plan ahead.
If you can’t all get together, make the effort to see your family members individually this summer.
I have a dear friend with two adult daughters. They used to have an annual mother-and-both-daughters weekend but it has become two separate annual mother-daughter weekends, one daughter at a time. This works well for them! The sisters still connect on a regular basis as well.
Don’t get so busy that you don’t spend time with family this summer.
It’s not too late to make plans for July or August – or September even!
Make an effort to spend time with your parents, your grandparents, your siblings, your nieces and nephews, your aunts and uncles and cousins, and your children – whether they are littles or bigs!
For those long trips with littles to visit family, entertainment in the car or on a flight is a great way to optimize happy travels -for all of you- and with today’s electronics, it’s easy. But there’s also the old-fashioned travel games such as magnetic chess and checkers and age appropriate toys. And Books!
And I can’t say enough about Mad Libs! Great and hilarious road trip/camping fun for the whole family! And they teach language basics: nouns, adjectives, verbs, etc. Learning while having a blast with the whole family! Play in the car or around the campfire!
Each child with their own backpack or tote bag full of entertainment, snacks and water bottles helps with those long trips. And stop often to stretch legs!
Don’t forget pillows. I’ve included some links below.
Have a great summer! Take lots of family photos! 🌞♥️
Photo Credits: Sharon Britton Schoppman, Cinde Hagelberg, Erica Shepard, Heather Schmidt, Martine Nelissen, and me ~
One of the greatest gifts my mother ever gave me was teaching me how to survive and thrive when medical care is needed – with advocacy, exercising my rights as a patient, second opinions, research – and good manners.
My mom never allowed a doctor to be in complete control of her medical care decisions just because s/he had ‘MD’ behind his/her name.
When she was diagnosed with breast cancer and told she had to have a mastectomy and start chemo and radiation right away, she asked for a second opinion. She also went to the library and checked out every book on cancer treatment in print, as it was the 70’s and we didn’t have Google. She checked out medical journals and researched her options. She learned that they had a great and successful cancer treatment in Mexico that was illegal in the U.S. She learned how to eat and juice to combat cancer. She jumped through hoops until she was able to obtain the Mexico cancer treatment. She beat breast cancer without chemo, without radiation, without mastectomy. And without losing a single hair or ever being sick! Not one day was she sick! She was healthy through it all! Go figure!
I was only nine years old, but this spoke volumes to me.
My mom advocated for many friends and relatives over the years, demanding the medical care they needed when healthcare providers fell short.
I learned a lot from her example. Valuable lessons.
Never blindly trust a doctor or nurse. They are only human and they make mistakes.
Q. What do you call someone who graduated at the bottom of their class from medical school?
The Nurse from Hell: My Mom to the Rescue
With my third baby, I had placenta previa, where the placenta is born before the baby and both mom and baby bleed to death in seven minutes. I was scheduled for a c-section with orders to go to the nearest hospital by ambulance for an emergency c-section should my water break. And so my water broke and we called 911 and went by ambulance to the nearest hospital where the nurse wouldn’t allow me to see a doctor! I explained that I had placenta previa and needed an emergency c-section and she told me I would be giving birth naturally. Yes, she was the dingbat nurse from hell. And I was in no position to stand up and walk out and catch a ride to the next closest hospital. I had to stay prone. I was alone as my husband had to wait for our childcare provider to arrive before he could join me at the hospital. So I called my mom. It was around 4am. She was sound asleep but she managed to get dressed and to the hospital in less than a half-hour. And she advocated for me and quickly convinced those dingbat nurses that it was in their best interest to have me transferred by ambulance to a hospital that would provide proper medical care for me and not put my baby’s life and my life in danger for one more minute.
Had I listened to that nurse, my third and fourth sons and I probably wouldn’t be here.
My mom was the one to have in your corner if you needed an advocate for your medical care. But she also taught me how to advocate for myself and I’ve had to many times over the years.
They Told Me to Abort
When I was pregnant with my twins, I was told the pregnancy was causing my breathing issues and I needed to abort right away. But I had the breathing issues before I was pregnant so the pregnancy didn’t cause the problem and I surmised that an abortion wouldn’t solve the problem. They also said I needed to have a tracheotomy right away although my breathing crisis had passed a week prior and I was now breathing ok. I just got up and walked out of the room. Didn’t say a word. Just walked out. As I was walking away, I heard my husband tell those doctors, “well, looks like that’s a no, bye now.” I didn’t even say good-bye.
Had I listened to those doctors, my twins wouldn’t be here.
Another time I was hospitalized for days and never saw a doctor! They starved me everyday for procedures that were cancelled everyday. I asked to see a doctor everyday and they never came! I would call for a nurse when I needed a breathing treatment and wait forever while in respiratory distress. I was going downhill. I finally called my mom and my husband to come bust me out. I went to another hospital and got the medical care I needed.
And then last year my trachea was both collapsed and stenosed (inflamed and narrowed). The collapse was more than likely due to the years of stenosis and the hospital I was in wouldn’t do a procedure I needed called a tracheal dilation and insisted instead on a permanent tracheostomy which would render me mute for life. But I questioned them and I researched from my hospital bed thanks to Google and my smart phone and I made phone calls and sent emails to other doctors in other hospitals and got second and third opinions and there was a much better option –the dilation– and the good folks at Cleveland Clinic said, “we got this! Come to us!” But a psychopath quack at my current hospital lied to me and told me that the doctors in Cleveland agreed that tracheostomy/muteness was my only option of walking out of the hospital alive! But I had the emails from the doctors in Cleveland saying they could do the dilation and no way should I have the tracheostomy! I read the emails to them. You could have cut the air with a knife. So I busted outa that hospital with the help of my husband and two of my sons – and one son flew with me to Cleveland where they promptly fixed he problem and provided excellent medical care – after begging these other doctors to fix it for over two decades – before it was so severe.
I can breathe well now! And I can still talk!
Had I not done my research, had I not sought more opinions, and had I listened to those doctors, I wouldn’t be able to talk and I’d have a permanent tracheostomy.
Recently, a nurse called to schedule gallbladder removal surgery for me. But I questioned her and as she looked over the doctor’s notes, she gushed an apology, she had read the doctor’s notes wrong! She’s a good nurse, but she’s human, she made a mistake! I’ve been symptom-free for over a year, not needing my gallbladder removed!
Had I blindly gone along and not asked questions, I would have had the unnecessary surgery and lost an organ.
Ask questions! Advocate for yourself!
I used acupuncture and herbs to resolve my gallstone issues!
Another Example of Human Error
My latest example of why it’s so important to advocate for yourself. I’ve started back at physical therapy because I have adhesive capsulitis, aka frozen shoulder, thanks to medication side effects. So my first few sessions, I felt like they weren’t really addressing my shoulder issues, so I spoke up and found out my order was written wrong! Somehow my shoulder issues weren’t on my requisition. So she worked on my shoulder for about a half-hour and added exercises specific to my shoulder issues. And my shoulder was much improved after just one session! Speak up when things seem amiss.
Had I not said anything, my shoulder issues would have continued to go unaddressed.
And it’s Important to Teach our Kids to Advocate for Themselves
My youngest son had a skiing accident which required stitches. The ski lodge medic butterflied it. He skied all day with his injury. And at the end of the day when he got his stitches at an urgent medical care facility, he advocated for himself, refused unnecessary vaccinations and educated the nurses on vaccinations and the laws regarding vaccinations, which he knew more about than they did! Every time I felt like I needed to speak up and defend his rights, he did it himself! And he did it very respectfully. He informed them that he would need to research the vaccine before allowing it. At barely fifteen years old! I was so proud of him!
Mom or dad wont always be there, it’s important that our kids know their medical care rights and how to advocate for themselves.
Firing Medical Professionals
There’s been times that I’ve been in the hospital and had to fire a doctor or nurse or respiratory therapist due to shoddy care.
Refusing Tests and Procedures
I’ve questioned and refused unnecessary procedures and medications. Including some blood draws because every four hours isn’t always necessary, sometimes it is but not always, and if you don’t ask, they just do it. I want an explanation.
Know your rights
It’s your right to refuse anything when you’re a patient.
It’s your right and responsibility to ask questions.
It’s your right to fire folks and have them replaced.
It’s your right to second and third and even more opinions.
It’s your right to contact doctors at other hospitals.
It’s your right to leave a hospital without discharge.
It’s your right to ask to be transferred to another hospital – they may not comply – in which case you do it yourself with the help of friends or family.
It’s your right to request an advocate.
There are advocate agencies, but they are usually pretty pricey. But you can call around your area. Some hospitals provide professional patient advocates and you can request one, contact patient services. If a professional is unavailable and you’re struggling with advocating for yourself, call a friend or family member.
Last year I was hospitalized 200 miles from home and there were meetings with doctors that required I have an advocate other than myself, my son was living in the area and got off work several times to attend these meetings with me.
When there are “meetings“ you definitely need an advocate other than yourself.
I would highly recommend recording said meetings and other talks with doctors because it’s hard to remember everything and it’s in your best interest to do so. All smart phones have “tape-recording” capabilities.
Take notes and write down questions to ask when the doctor/team of doctors come in. Ask for paper and pen.
Healthcare Providers as Advocates
Many times my nurses, respiratory therapists, and doctors, have stepped up to the plate and advocated for me when things were amiss! Love them!
Friends and Family
If you have a loved one in the hospital, try to be there as much as possible to advocate for them. And keep them company! It’s great to have a friend or family member advocate for you.
“One thing I tell people is if you have a sick family member, don’t leave them alone in the hospital. Even when there are visiting hours where you’re supposed to go home, I’ll tell people, find any way that you can to stay anyway, because when you’re sick is the last moment when, as a patient, you’re able to fend for yourself.” – Dr Atul Gawande
Be at the hospital with loved ones as much as possible. When you have to leave, try to arrange for someone else to be there. Attend doctor appointments with loved ones who need an extra set of ears or advocacy. For follow-up appointments after a hospitalization, having an extra set of ears or someone who can help describe your symptoms/progress is valuable.
And when there’s no one who can advocate for you, you absolutely must advocate for yourself. I’ve had to many times. Remember to hit record when talking to doctors.
I’ve also learned to ask for stuff they don’t prescribe or offer. Such as vitamins and probiotics! They don’t prescribe them but if you ask, you get them! If they stock them.
Most hospitals have items to borrow or check out such as laptops – but if you don’t ask, it’s not always offered. Ask for volunteer services or patient services. They’ve brought me coloring pages and markers! (I’ve included links at the end for a wonderful adult coloring book, good to take with you, or take to a loved one in the hospital, they help pass the time and really help alleviate anxiety!) They have books and magazines and other things to make your stay more pleasant. But you have to ask or it seems they don’t show up until you’re being discharged. They are volunteers so be kind.
And When You Have Good Care, Say Thank You!
My nurses, doctors, housekeeping staff, food service staff, et al, are amazed when I thank them! They rarely get thanked! Are you kidding me?! Another thing my mom taught me was good manners! Good manners and treating my medical care providers with respect has gained me private rooms, extra pillows, extra chairs for my visitors, over the limit of visitors, musician visitors and other perks!
I had a nurse tell me I was bumped up on the waiting list and got a private room because I was such a pleasant and nice person. One nurse even referred to me as ‘lovely’ and we are friends to this day! I’ve had great nurses request me because I’m respectful and friendly and I say thank you. It’s really nice to have a great nurse request you instead of getting the luck of the draw nurse.
Show some respect and appreciation for these people who devote their lives to caring for others. They want to be at home with their families or outside enjoying nature, but they are devoted to helping others achieve health and wellness. It’s not just a job, it’s their calling, they are worth their weight in gold and they deserve our gratitude. I greet them when they come in and thank them when they leave and strike up conversations whenever I can. I even thank phlebotomists… they’re just doing their job in an effort to help you.
So I want to pass along to you the valuable gifts my mother passed along to me and I’m passing along to my kids: Patient self-advocacy, knowing and exercising your rights, the importance of research – and second, third, fourth opinions. And saying thank you!
Here’s to surviving as a patient ♥️
Reference: My mom, Bonnie Purington Conlow Graig, in loving memory, thanks mom ♥️
Raising a family is both rewarding and challenging.
The challenges are exacerbated when mom or dad has a serious/chronic illness.
I raised five children while battling a serious chronic illness. As well as having legal guardianship of non-biological children – and being a “mom” to lots of children/teens/young adults. This is our family!
Putting yourself first
This is a foreign concept to most moms. It seems that when we give birth a hormone kicks in that says not only does this baby come first, but so does everyone else in my life: spouse, parents, everyone – and I come last. It even happened to me before I gave birth – when I became a stepmom.
But I was sick and I had four young sons still living at home and a husband and legal guardianship of another child. I was putting all of them first and myself last. It’s what comes natural and it’s what good moms do. But even healthy able-bodied moms need to put themselves first sometimes. And for those of us with chronic illness, it’s an absolute must.
I realized one day that if I didn’t start putting myself first, I wouldn’t be around to see my sons to adulthood.
I had to learn to say no when I didn’t feel up to taking them somewhere. I had to learn to cancel plans when necessary.
I still made/make plans, keeping in mind, they may have to be cancelled. More on dealing with that later.
Take care of yourself. Rest when you need to. The kids can go outside or to a friend’s house or read a book. It’s healthy for kids to learn to entertain themselves.
They also need to do their own laundry. They can learn this very young, mine all did.
If it comes down to the kids needing new shoes or you needing something for health purposes, those shoes can wait. Your health can’t. Shoe Goo works great!
It seems selfish to put yourself first, but for those of us battling chronic illness, it’s actually a selfless necessity in order to achieve our best health possible – for the sake of our families.
Put yourself first. It’s essential.
How much do you tell your kids?
It depends on how old they are. Don’t scare them with details they don’t need to hear. But explain why some days you can’t get out of bed or off the sofa or why you have to watch their soccer game from inside your car instead of the bleachers. Why you can’t always bake them a birthday cake and it has to come from a bakery or store. Why Thanksgiving dinner has to be store-bought already cooked. Explain why they need to quietly entertain themselves and let you take a nap. Naps are very important for our health.
Doctors orders: no housework! If only insurance covered housekeepers for seriously/chronically ill and disabled people! If you can afford a housekeeper, do it! I had one when my kids were little, great investment. And even young children can do some chores to help mom or dad out and at the very least, pick up after themselves. Keep the chores for kids age-appropriate. And don’t put too much pressure on yourself to have an emaculate home. Clean enough to be healthy is my goal.
As for feeding the family, there’s times you can’t grocery shop or cook. I’ve had wonderful friends who’ve brought meals and groceries! I am forever grateful! I also used a grocery/meal delivery service and now there are so many to choose from!
Keep meals and snacks healthy, nutritious, and SIMPLE! Slaving over a hot stove isn’t in your best interest when you have a serious/chronic illness. It will take a toll. I will continue to post simple, healthy, delicious recipes. Stay tuned!
For several years, Thanksgiving was “catered” by a restaurant or grocery store/super market. I just could not manage a feast on that scale anymore. We had Thanksgiving at a restaurant too, but I like leftovers so I prefer to have it at home. So “catered” it was – with the addition one or two of my favorite recipes.
When my sons were old enough, they voluntarily took over and did all the Thanksgiving cooking! That meant the turkey was wrapped with bacon like a mummy! It was a fabulous feast!
All my sons have grown up to be great cooks due to having to cook when mom couldn’t!
Making the most of bad days
You’re going to have days that you have to cancel plans with your family. Days you can’t get out of bed or off the sofa – or you’re in the hospital. Healthy, able-bodied moms do guilt, so for those of us who battle health issues, it’s tenfold. So much guilt. Don’t do the guilt, at least try not to. Apologize to your children. Explain that you’re sick and need to rest.
With little ones, making the most of bad days means cuddle time and story time and movie marathons. Thankful for Disney movies! Lots of sofa time or time on the front porch or back patio. Your children can fetch water and snacks for you and perhaps make lunch of they are old enough.
We invested in a few backyard fire pits over the years, the wood/charcoal kind and a propane one. I highly recommend these for all families, health issue or not! They enhance family time a great deal! Even on bad days if nothing else, I could make it to the backyard in the evenings to sit around the campfire with my family for some wonderful family time! Sharing the events of our day, telling ghost stores, playing Mad Libs, telling jokes, playing charades, playing musical instruments and singing, etcetera. It truly is the small things in life! This was all very little effort and I was resting while having quality family time and making memories with my sons. Note: keep s’mores makings on hand!
That often led to watching shooting stars, campfire or not, watch shooting stars as a family especially in August during the big Perseid Meteor Shower. Trampolines are a great place for the whole family to watch shooting stars! Or lawn chairs or a blanket on the ground. If there’s too much light pollution where you live, if you’re up to it, try to drive to where there’s no light pollution in August to watch the shooting stars. Make it an annual event. Bring chairs or a blanket. Bring the fire pit!
I also joined a local museum/exploration park. There were times I could drive somewhere but not walk far or do much. We bought annual family passes and would go to our wonderful Turtle Bay Park, which is gated and safe. I could park myself on a comfy sofa or a bench outside and let my kids explore all the wonderful educational hands-on opportunities the facility has to offer while I sat and watched! They were “schooling”and having fun while I was resting. With four sons, we had the buddy system down. These places usually provide wheelchairs if needed. They’re part of a network so when we would go to my distance appointments, there were often other such museums/parks in the network we had free or discounted entry to! As well as when we traveled for pleasure! Check to see if you have one near you: http://turtlebay2.worldsecuresystems.com/documents/ASTCTravelPassport-Public-NOV2016-April2017.pdf
Making up for the bad days
I always tried to make up for the times I was unable to do much. When I felt better, we got out of the house and went camping and all kinds of adventures! I’m no longer able to ski, but I sat in the lodge and had lunch and snacks and break-times with my family – and I snapped lots of pictures and videos of them as they skied down the mountain! I make the most of it given my limitations.
I went to all their sporting events – sometimes I had to watch from the car.
I tried to keep most plans a secret/surprise so that when plans had to be canceled, my children didn’t have to be disappointed. Disneyland was always a surprise! If I had to cancel, they never knew!
Riding lessons are great for the kids and the chronically ill parent. If you can get your child into horse riding lessons and hang out with the horses during the lesson, it’s really good for the soul! They use horses for therapy for a reason! You will leave feeling better than when you arrived. And it’s free to just hang out with the horses! And your kids learn so much more than how to ride! They learn anatomy and science and how to diagnose and treat ailments! It has paid off when our pony, donkey, goats, and even our cats and dogs have had various symptoms! My kids are great at treating them or knowing when it’s time to go to the vet.
Note: Putting your kids through lifeguard school when they are old enough when you’re chronically ill can be the best thing you ever did. My son saved my life when I was in respiratory arrest. He has saved other lives as well. He was honored as a local hero.
Public School vs Homeschool – I’ve done both
Whether you homeschool or not, turn your doctor appointments into field trips/adventures! Make it as fun as possible. More on that below.
I feared that homeschooling would be more stressful and take more of a toll on my health than sending my kids off to school everyday. But I found the opposite to be true.
In public school, you have all the germs that your kids bring home to you, putting you at risk. And then there’s all the stress of having clean clothes everyday, those vanishing socks, getting up at the crack of dawn to get everyone dressed, breakfast made and consumed, homework packed up, lunches made and packed up, and get them on the bus before they miss it! Or drive them to school with all the other stressed out parents dropping their kids off before the bell rings! I’m getting anxious and jittery just remembering those days. I’ve seen more than one child get hit by a car during drop-off and pick-up time at school! It’s crazy! Even in my small town! And then there’s all the homework stress! Not to mention the ridicule when you have to pull your kid out of class to go to your long distance doctor appointments because no one will be home when school gets out. I informed the school this would be a frequent occurrence and they were supportive and understanding and compliant. But then after the third time in as many months, that I had to pull them out for a day, I got a nasty letter in the mail explaining that my children were ‘truants’ and the authorities would be notified if I pulled them out for another doc appointment!
When you homeschool, all those situations and all that subsequent stress is eliminated. Well, except for the vanishing socks, not even homeschooling cures that! But you don’t have to set the alarm and you don’t even have to get dressed! And who cares if your socks match! You can make and eat breakfast and lunch at your leisure and with your children! There’s no “homework,” per se. No deadlines unless you set them yourself and then you can always adjust them as needed or as desired.
You don’t have to pull your kids out of school for your doctor appointments, which are field trips when you homeschool. I always made them adventures/field trips.
I once told my ENT that I homeschool and my kids were in the waiting room and before I asked, he offered! He said, “then this just turned into a field trip, bring them in!” They got to watch him do a scope procedure of my trachea while he explained it all to them! They saw it all on the monitor! It was awesome!
For the times you can’t bring your children into the exam room, provide them with entertainment, and for the car/plane ride, as well. More on that here.
Another perk to homeschooling: you can make skiing, riding lessons, lifeguard school, time spent at museums, exploration parks, nat’l parks, etcetera; part of your curriculum. Real life skills. One of my sons grew up to be a ski instructor for his winter job and works at a nat’l park the rest of the year. He trained for it throughout his homeschooling years.
When you homeschool, you can do it from your bed or the sofa.
You can do it
In conclusion, I want to say, whether you homeschool or not, you can do it. My kids gave me a reason to live, to keep fighting to live every single day. To make as many wonderful memories with them as possible. Chronic illness gives you the gift of not taking your future for granted, you take advantage of the time you have and you make to most of it, especially with your children.
They are also a wonderful distraction from health issues.
Here’s to all of us raising a family while battling chronic illness ♥️