Large Family Happenings, Life or Something Like It

Baby Shower, Bridal Shower, Birthdays, Bathrooms

Baby Shower, Bridal Shower, Birthdays, BathroomsBaby Shower, Bridal Shower, Birthdays, Bathrooms

Can I just say that I can sometimes overwhelm even myself?  Well, I do.  More times than not, I get myself into more things than I should.  So, now I’m in the middle of a Baby Shower, Bridal Shower, Birthdays, Bathrooms.  In between November and the end of March, and (of course) the holidays, there is a lot happening.  We have about 12 birthdays and anniversaries.  Then there is my first grandbaby that will make her appearance.  Now, we have to slap in a baby shower, bridal shower, and a 5-day hospital stay and you have my life in a nutshell.  All birthdays went very well.

Baby Shower

With that being said, a baby shower is a must.  Due to covid restrictions, we did a virtual baby shower at my house.  My sister came and my kids.  We ate, she opened gifts, and we had fun.  She got a ton of stuff for Charleigh Mae and they are very thankful.

It is so surreal to see your daughter pregnant with her first daughter.  She is so beautiful.  This pregnancy has not been easy for her.  She has struggled with all-day sickness, loss of appetite, and all the other fun things that happen.  Yet, she has handled it beautifully.

She is going to be such an amazing little mama.  I can’t even contain my excitement.  Who would have ever thought I’d be excited to be a grandmother.  Honestly, who ever thought I was mature enough to be a grandmother.  Yet, here I am.

Bridal Shower

We had scheduled the shower for a week before the wedding.  I just couldn’t get it all done in such a squashed amount of time.  Sadly, Alyssa got really sick before the shower.  We knew she didn’t have covid19, so we assumed it was a bug or the flu.  Since we weren’t sure, we decided to postpone it.  If it was a stomach bug, Arkie could have gotten it and there are a lot of immunosuppressed people in our lives.

Arkie never got sick, but other things ended up happening.  We had a hospital stay (Hunter) and a snowstorm because that is just how things roll.  It got pushed back to the day before the wedding.  We were trying to get a date that his mom could be there, but due to the storm, it just didn’t happen.

It got done and they had a good time. We were all tired but the kids seemed to enjoy opening their gifts.  Luckily, we got great pictures that I will send to his mom.

Rehearsal

That was something as well.  It seems nothing wanted to go smoothly.  This snowstorm just threw a wrench into all the things.  His family was not able to travel to the rehearsal because they got more snow than we did.  I hated that for them.

We were able to get in and get a lot of decorations done.  Most of the people who were in the wedding was able to come.  I’m so glad there is a trial run because that’s when I got all of my squalling out.  Those songs she picked.  Geez.  I was crying, my mom, the girls…it was a cry fest.

We ordered pizza and just came back to the house to eat.  After eating, they opened gifts.  Then, we cooked for the wedding.  It was a long and crazy night.  After all that was done, we snuggled for a good long time.  Sigh, that girl has my heart.

Bathroom Remodel

To add to our fun, we decided to do a remodel on our bathroom.  A few years ago, my boys got into a scuffle and things happened.  One boy aggrevated another boy.  Then, the other boy pushed the one boy.  That boy’s butt went through my wall.

I have not used that bathroom in a long time because I get so mad that all I see is his full butt print.  There are 2 cheeks and a crack.  I bought stuff to redo it, my way, because we weren’t getting it done any other way.  Bart stepped in and did some work.  Then, he made some phone calls.

Once that happened, all the things happened.  We now have a new shower, the toilet was already fairly new, bought new flooring.  Our friend ordered new closet doors.  The next big thing is to get the sinks out, new ones bought, and installation.

Go Big or Go Home

So, all this stuff, at my house, happened with a torn up bathroom.  That and a front closet FULL of Charleigh Mae’s gifts, a corner in the living room FULL of Alyssa’s gifts, and birthday presents.  Upstairs was full of wedding stuff.  I mean, there is stuff every where and I haven’t known which way is up and which way is down.

Honestly, I wouldn’t know how to do something 1/2 way.  I have got to do it all they way and then add a little spice.  It’s what dreams are made of.

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Family Update February 2021

Family Update February 2021Family Update February 2021

Here is our BUSY Family Update February 2021.  For the shortest month of the year, it *feels* like this month lasted 428 years.  So.  Very.  Busy.  That meme cracks me up.  I’m not sure if it is my guardian angel, my mama, sister, or therapist.  Maybe all of them do that when I tell them something new.  Tis my life.

School

Still, Job Corp is not open.  I believe, to date, one has opened, so that is progress.  Right?  Noah got accepted into MSU and got his financial aid going.  He is figuring things out, so I don’t have to.  We’ve decided that Hunter will have his therapies at school.  Virtual therapy is STUPID.  It is seriously the dumbest thing ever.  He will only be at the school for an hour and a half.  Physical therapy, Occupational Therapy, and Speech will all be done weekly.  Maybe we will see some progress.

As for the boys, Jude is doing well.  He is learning to take his time.  The school gives him the ability to redo his assignments, but not tests or quizzes. He is learning to ask questions and study.  It has been a journey.  Daniel is struggling.  With FASD, it is hard.  Teachers “see” one thing (virtually), yet life is another.  We are going to take him 2x a week for tutoring.  After much back and forth, we adjusted his 504.  Praying that is going to help.

Happenings

There have been lots of birthdays this month.  Grayce, Hunter, Alyssa, Mimi, daddy, and several nephews have celebrated.  Also, we had a wedding shower for Alyssa on Hunter’s birthday.  That is one way to crunch it all in.  Originally, we had a separate day to do their share. Sadly, Alyssa got the flu or a stomach bug.  She was pretty pitiful.  We were not certain what she had, so we canceled until the 19th.  That would be one day before her wedding.

The rehearsal didn’t quite go as planned because there was a major snow/ice moment.  We considered postponing the wedding.  It was touch and go.  Alyssa was a wreck.  Arkie was a rock on the outside, still unsure of what lies beneath.  We got that done, without Arkie’s family.  Sadly, they got more snow than we did and just couldn’t make the trip.  I know that was a hard decision for them to make.

Once home, we did their shower.  Luckily, both my moms were here.  Hannah and Savannah were here.  Once the parents left, we started cooking.  We were all so tired but got it done.  Then, my girl came and snuggled with me until about 2 am.  Sigh.  Worth it all for that moment.

Wedding

All in all, we got it done.  My daughter was breathtaking.  Simply breathtaking.  Arkie.  I tied his tie and saw this sweetness in his eyes.  He really is a sweet boy.  Change is just hard.  Alyssa.  Stunning.  His family was able to come home.  The sun was shining.  Her pictures will be so beautiful with her flowers and the snow.

My mom knocked it out of the park with her flowers, doors, and all the things she creates.  She is brilliant.  My other mom was so helpful.  I’m so thankful my aunt was able to come.  The boys kicked in and helped clean up.  The food was good, the company was good.  Alyssa was so full of joy.  Arkie was so excited about his apple pies.

Health

Big Daddy was diagnosed with diabetes.  He has lost a lot of weight and his sugar levels are really good.  My plantar fasciitis sucks pond water.  That is in my right foot.  In my left foot, I’ve lost feeling in a couple of toes and the top of my foot.  It is due to a bone spur.  Eventually, when I lose feeling in more toes, we’ll address it.  My essential tremors have calmed down as have my psoriasis.

We have some upcoming appointments with Daniel to have him assessed for autism.  Honestly, we have always suspected it but as he gets older, things become more prominent.  Also, we have some upcoming appointments for Jude.  We are hoping to get some help with his FND.  Hunter had a massive treatment that I will address in another post.  So, stay tuned.

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Family Update January 2021

Family Update January 2021

Family Update January 2021

I believe it is time for a large Family Update January 2021.  SO much has gone on with everyone in my house.  I am physically, mentally, and emotionally exhausted.  Honestly, I do not remember the last time *I* deep cleaned my house.  Sleep is not my friend, my emotions are on edge, and I have gained weight.  Also chopped my hair off, but that is a different story.

January

We started off the year with no school.  Really, no different for us because we were already doing virtual school.  This involved getting Daniel enrolled in high school.  He was coming off of being gone for several weeks and we had to enroll him.  There was a lot of togetherness.  We were all pretty much sick of each other.  Let’s be honest, we’ve been sick of each other since Covid19 and quarantine began.

We had the baby shower for Charleigh.  Again, not what we wanted but what is necessary due to the pandemic.

Counseling Continued and Began for Some

I continued on with counseling through January.  Honestly, it is nice to talk to someone but still frustrating.  I want to see more results, heal more, resolve more.  The boys also started counseling.  Honestly, the jury is still out on it.  They are with the same group as I am, but 2 different fellows.  We shall see how this pans out.  I hope it is successful.  We have goals.  There has been on revelation type opinion that we are further seeking out.

School

Again, it has not been the best experience.  I know the teachers are doing their best, but it is so hard for the students who struggle with special needs.  It’s almost like they are just continuing to ignore and let these kids fall through the cracks.  Just get by.

The kids do get the opportunity to retake homework and such to better their grades.  Yet, one of my kids needs more.  He struggles but no one sees it because he can work really hard and make passing grades.  The invisible disease of Fetal Alcohol Spectrum Disorder, possible autism, and a host of all the other things make education hard.

I am not impressed with the level of care the administration has for my son.  They said that there is nothing really that they can do and I find that disturbing.  Hunter is doing well, for the most part

Technical School and College

Job Corp is still not open, so we are in limbo.  The county that this particular school is in has to go “orange” in order to open.  College is going well for my son.  In the fall, he will begin going to Murray State.  He will start his junior year.  Where did the time go?

Health

It’s been a hard month OMS-wise.  The shaking is pretty significant in his hands.  His behavior is hard.  Schoolwise, he is doing really well.  Jude had one seizure this month.  We did up his meds for epilepsy.  He has not had any more Non-Epileptic Seizures.  The Functional Neurological Disorder stuff is a work in progress.  Daniel is transitioning home fairly well.  It has been an adjustment with him being home.

Family

Bart is okay.  Work is a struggle.  Covid19 sucks.  Bug and Ben are well.  Baby is doing great!  I’m so excited to meet her.  Alyssa and Arkie are engaged.  So, there’s that.  G … life as it happens.  Noah is good, busy, but good.  I pretty much gave the update on the younger boys.

For me, I’m tired.  Old.  Tired.  Trying to find time for self-care.  This level of parenting is so different.  It isn’t physically exhausting as much.  For me, it is mentally and emotionally exhausting.  I just want to be and do all the things for all the kids.  Sadly, I can’t.

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Keep the Season Merry and Safe

Keep the Season Merry and Safe

 

Keep the Season Merry and Safe with Innovative Takes on Holiday Gatherings

Keep the Season Merry and Safe.  The 2020 holiday season poses new challenges for parents trying to balance family life and health concerns.  However, with caution and creativity, it is still possible to enjoy some seasonal socializing. Families who have already experienced stress or loss over the past year may especially benefit from the opportunity to laugh, interact, and even celebrate. Whether you plan an online meet-up or a small in-person party, a little innovation can go a long way.  This goes towards keeping the spirit of the holidays alive during difficult times. Barefoot Faith Journey invites you to consider the following ways to celebrate safely.

When health concerns are paramount, online might be best.

The easiest way to keep a gathering safe is to host it remotely. By now, most of us are familiar with many of the technologies for online interaction. With applications such as Zoom, Skype, and Facebook Messenger readily available, families can choose which best suits their personal preferences and tech capacities. Communication and planning are key to hosting a good remote party, so everyone knows when and how to join.

Families that are used to online meet-ups for work or school responsibilities might consider making their virtual gatherings more festive by adding costume themes. For smaller children, think about themes from superhero movies or their favorite animated series. Older children and adults might find a period dress a fun way to step out of every day. If everyone prepares snacks and beverages in advance, you can chat.  Also, maybe even play games and enjoy some holiday treats.

Online Activity

As always, when engaged in online activity, make sure you protect yourself and your devices against cyberattacks. Use a secure network, set up strong passwords, and avoid clicking on any dubious links.  Also, be aware of downloading any applications that you haven’t carefully vetted. And never give away private personal information online unless you know you are dealing with a secure and trusted source.

If it is safe to do so, consider hosting a small in-person event.

Depending on weather and public health regulations in your area, you may be able to host a holiday event.  Even if it is just for a few close friends and family. Always check the recommendations for your state and county.  Do this before making plans.  Invite people you can trust who will abide by precautions as well as communicate clearly with you about potential risks. In general, outdoor gatherings are safer than indoor ones. Ask that your guests bring masks, and set up a small hand-sanitizing station near a point of exit and entry. As much as possible, everyone should provide their own food and drink, and avoid sharing utensils.

Colder Climate Ideas

For colder climates, firepits and outdoor heaters might be a good option for creating a comfortable outdoor space. Just be sure to follow your area’s rules and recommendations for fire safety. Add fairy lights and tiki torches for ambiance, and plan games or entertainment that don’t involve interpersonal contact.

Indoor parties might still be possible, but remember to take precautions.

For those in areas with reduced risk, indoor gatherings are still possible. When meeting up inside, it is preferable if all guests have already been sharing a quarantine bubble.  Also, minimizing outside contact. Travel over long distances for social events is generally discouraged, but those who feel it is safe or necessary should heed these travel safety tips suggested by experts. Even when gathering with others in your quarantine bubble, avoid unnecessary physical contact.  Also, check temperatures beforehand, and remember to wash hands frequently.

It has been a difficult year for many of us. You can still celebrate the holidays with friends and family, this year just requires a little more creativity. Even if you have to arrange your events a little differently this time around, remember, some things haven’t changed.  The holidays are still a time for celebrating the relationships that make our lives richer.

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Update on my Family

Update on my Family

Update on my Family

Well, I guess it is time for an Update on my Family.  It has been a while since I’ve given one and I guess it is long overdue.  Can I just say, I am SUPER glad September is over!  That whole month weighed so heavily on my heart.  Reading the stories, reflecting on my journey, and just allowing myself to feel.  Suicide is a real thing and it is out of control if you ask me.  Please, check on your friends and family.  Spread love and kindness.  Help.  Be an ear.  God is so much bigger than that moment of uncertainty!

Bug & Ben

They are still married (yay) and are doing well.  Still young, still got a lot to learn, still navigating all the things but all in all, things are good.  They are both working from home, so that is a LOT of togetherness!  In that togetherness, they forgot to be socially distant and are now expecting a little one.

Let me repeat.

They.  Are.  Expecting.  A.  Little.  One.

One more time for those in the back.

I AM GOING TO BE A GRANDMOTHER.

Breathe.  It’s fine.  I’m fine.  Breathe.

Don’t get me wrong, Flash and I are excited to meet each other.  Hunter named the baby Flash because well, he is 6.  We don’t know if it is a boy or girl.  Honestly, I could care less.  I used to think that was a crock of crap when people said that.  Now, I get it.  I truly don’t care.  So, I am going to be Lolli and Big Daddy will be Pop.

Get it?  I wanted us to be Harriet and Nels or Alice and Mr. Edwards.  Only Bug agreed with that, no one else did.  Whatever.

Peach

My girl did it.  She graduated college with her Bachelor of Science.  Sadly, her last semester had to be done virtually because of stupid co-vid, but she did it.  Come November, she is walking for graduation.  I could not be more proud of her.  I mean, geez.  She is brilliant and beautiful.

Trying to find that “big girl job” has been tedious, but she is working.  It is not her dream job but that will come.  She really is good at what she is doing, it is just hard emotionally.  Her niche is geriatrics.  She loves the elderly and has such respect for them.  The love and grace she shows in working with them…the respect.  She is her mother’s daughter.

Echo has a friend now.  My Ted moved in with them and so did Maureen Kitty.  She is a plant mama and has a cute little apartment that she has decorated so pretty.  This girl of mine…she is going places (just not too far from me!)

Gigi

It’s been a hard summer.  Honestly, it’s been a hard 13 years.  I am not going into any detail because my head and heart simply can’t.  This month, she will be attending school, away from us.  She will be learning a trade and life skills to move forward in her life.  This has been a hard decision for us to make but it is necessary.

For 2 months, we were blessed with the best gift, at the perfect time.  A friend offered to let her come to her house for a couple of months to let life settle a bit.  It gave us all time apart to heal and reflect on what is best for her and the rest of our family.

I pray the Lord guides her every step.

Boo

Well, he still has a female friend and has mentioned moving out.  As I choke back on my vomit and tears, I now refuse to discuss it.  I was pretty good about the girls moving out, but why oh why am I struggling.  Geez.  His little female friend has captured my heart.  She is a sweet girl, though we often talk about making space for Jesus when they sit too close to each other!

He is still in college and loving it.  I think he wants to be a sports journalist.  He loves sports and he has discovered that he loves writing.  In his job, he left his first job for another and then left that one for the first one because he was going to be promoted.  He is a hard worker but his room is a pigsty.  I just don’t get it.

Catfish

Due to the events of the summer, D is away at school until December.  Some things occurred where it was necessary for him to be away.  I email him.  He writes (when he remembers) and he calls every Friday.  Some are good calls and some, he just misses his mama.  I sure do miss him but I know he is learning so much.  Thankfully, this school is geared towards the career that he is wanting to pursue.

Sadly, he got co-vid (well, he and 13 other boys).  That was crappy but luckily they were asymptomatic.  We have had to send him a lot of soap LOL and shoes.  He is wearing them out!  Thankfully, he is learning and working through the events of this summer and processing some of his choices.  I am super proud of him.

Jude

He doesn’t have a nickname…wonder how that happened?  I’ll have to think of one.  He is “virtually” schooling from August until December.  I am hoping he will be back in school in January.  The past year, we have been struggling and fighting to figure out what has been going on with him.  This summer, we finally got our answer.

He has Functional Neurological Disorder.  In normal terms, he has narcolepsy.  Let me tell you, it is not like what you see in the movies.  It has been so hard.  In the midst of all the testing for Idiopathic Hypersomnia (which turned out to be FND), we stumbled on Epilepsy.  Yep, you read that right.  He also has Generalized Epilepsy.

Triggers

His triggers are stress and lack of sleep.  We have had TONS of stress this summer and he has narcolepsy, so there is your lack of sleep.  He had his first grand mal seizure and that is something I never want to see again in the history of ever.

Kid

Good grief.  He is busy.  So.  Very.  Busy.  He talks.  All.  The.  Time.  He is virtually schooling and doing pretty well.  Amazingly enough, he has promoted up a reading level…to HIS reading level on HIS grade!  He is reading so well.  Treatments are going as well as they can.  His OMS is still there and prevalent, but he compensates like a beast.

He is getting so tall and loves being outside.  His favorite thing to do is run.  “Mom, I just need to run.”  I can think about it when he was in a wheelchair.  Most days, I just sit and watch him run back and forth through the yard and I smile.  This child is fearless.  He brings joy to my heart.

As For Us

We are healing, as a family.  Big Daddy is adjusting to working from home.  I’m looking at going back to work part-time.  We have A LOT of kittens.  When they are weaned, we are getting the mama’s fixed so we don’t have to worry about that anymore.  I know you want to know their names…right?  In no particular order:

Karen, Inez, Joan, Janis, Joplin, Lloyd, Linda, Lonnie, Ronnie, Roger, Kim, Pat, Wenago, Tibebu, Ephraim, and Bart.

So freaking cute.  I love cats.

I guess that is all for now…until next time.

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Take Care of Your Mental Health

Guest Blogger, Jenna Sherman, is writing again to help you to find ways to reduce your stress and Take Care of Your Mental Health.  Due to the subject matter of this month and the continuing pandemic of Co-vid19, self-care and reducing stress is imperative.

Take Care of Your Mental Health

How Families Can Reduce Stress and Tension During the Pandemic

The COVID-19 pandemic has been going on for months, but for self-isolating households, this time probably feels much longer. Keeping up with current guidelines and information is stressful enough.  Many families are also dealing with stress from being stuck indoors together. Fortunately, there are numerous ways to address household tension.  This will help your family grow closer as you ride out the rest of this pandemic.

Take Care of Your Mental Health

Before you can be there for your family, it’s sometimes necessary to take care of yourself first. Prioritizing your mental health is always important, but it matters even more during these stressful times. Following Barefoot Faith Journey and other bloggers who regularly write about important mental health topics is a great way to start your journey toward better mental health.

 

Practicing self-care is also important during the pandemic. Self-care can take countless forms, and it means something different to anyone. You might not be able to practice all of your usual self-care habits.  During the pandemic, it still helps to prioritize simple things.  Things such as exercising regularly, getting enough sleep, drinking plenty of water, and eating nutritious foods.

 

If you find that you are struggling to cope, the National Alliance on Mental Illness (NAMI) has great resources available to help you through these times. For example, some resources can help you locate treatment options during the pandemic, while others can help you find solutions if you are feeling overwhelmed with finances or other stressors that may have worsened because of the pandemic.

 

Keep in mind that your children may also find it difficult to cope well with the changes brought on by the pandemic. Listening to your children’s concerns, providing structure to the day, and giving context to the news are just a few ways to help, according to the Anxiety and Depression Association of America.

Spend Time Outside

Getting fresh air is one of the most effective ways to bond as a family during the pandemic while also eliminating stress and boosting everyone’s mental health. You might not be able to enjoy all of the same activities you did before, such as pastimes that require you to be in large crowds, but there are plenty of other ways to get outside.

 

Going on a camping adventure is a fun and socially-distant way to try something different and get your minds off the situation at hand. Likewise, visiting local parks you haven’t been to before is a nice way to explore your neighborhood and stay active while self-isolating. You can even have fun without having to leave the backyard. Try having a backyard bonfire, playing yard games, or stargazing.

Keep Boredom at Bay

Boredom can easily cause tension to rise despite your best efforts. Going outside is a great way to reduce stress.  There are also a variety of fun indoor activities that are equally fun bonding opportunities. For example, having a weekly game night is a good way to pass the time. Opting for cooperative board games and video games will allow you to keep the mood light rather than having it turn competitive.

 

If you want to get serious about online gaming with each other, make sure your internet connection can keep up. Upgrading to fiber optic internet is a smart move.  Especially if you plan on playing multiplayer games like Fortnite.  Also if you are letting your kids play games while you work from home.

Fiber optic internet can handle several devices at the same time. As an added benefit, a faster internet connection also makes it easier to download or stream movies.  This is good if you want to have a family-friendly movie night.

 

Some tension is to be expected as your family navigates the pandemic and adjusts to the new normal. However, it’s important not to let stress get the best of you. Checking in with your mental health, getting outside, and finding ways to combat stress indoors will help your family weather whatever the pandemic throws your way.

Guest Blogger

Is Your Family Ready for the New School Year?

Is Your Family Ready for the New School Year?

COVID-19 Resources You Need for a Safe and Successful New School Year

Is your family ready for the new school year? If not, you’re probably not the only one. After all, it can be difficult to navigate pandemic challenges along with the normal back-to-school concerns. That’s why you need the steps and resources below to make your life easier.

First, You’ve Got to Have Some Faith

This year’s going to be tough but you’ve got this!

Then, You’ll Need to Keep Things Clean

Homeschool or regular school, keeping your home clean is crucial.

Next, You Can Start Shopping for Supplies

No new school year is complete without shopping, so use these tips to make it easier.

Finally, Work on Getting Kids Into a Routine

Honestly, this may be the hardest part of the new school year, but these resources will help.

This year is going to be a challenge. So put the resources above to good use but also have some faith and patience with yourself, and your family.

Photo Credit: Pixabay

Resources:

Raising the Next Generation

jennasherman@parent-leaders.com

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3 Years Ago Today

3 Years Ago Today

3 Years Ago Today

At 4:30 pm, 3 Years Ago Today, our lives changed forever.  Opsoclonus Myoclonus Syndrome began to rear its ugly head.  Our lives were altered.  There has not been one person, in our home, that was not affected by this devastating condition.

This day comes and goes, for most people.  In our world, today, we see Co-Vid19, racism, and protests.  It seems like everything is falling apart.  In lieu of those horrendous things, I stop today and give thanks that my son is still alive.

Treatments

In the course of 36 mths, he has had

  • A bazillion IVs
  • 28 IVIG treatments which equal almost 250 hrs in a hospital
  • 2 Lumbar Punctures
  • 3 MRIs
  • 1 EEG
  • A bazillion labs
  • The second highest genetics battery of testing
  • 5 diagnosis’
  • 46 ACTH shots in the thigh
  • Countless high dose rounds of Dexamethasone
  • 3 rounds of Chemo
  • 5 hospitals
  • Countless stays in said hospitals
  • A Make A Wish trip
  • Wheelchair-bound for months
  • Gait walker dependent for months
  • Ramp installation
  • Multiple rounds of high/low-frequency acupuncture
  • Bioimpedance
  • Amish Iridology
  • A death sentence

My Son

He is a warrior.  This child has been prayed over by hundreds of people.  Donations have helped us travel many miles to seek help.  Many tears have been shed.  Faith has been torn down and redeveloped.  Hope has abounded.  In 2017, our lives changed.  2018, we were given a new diagnosis and told to take him home until he “succumbs.”  In 2019, we got the “old” diagnosis back and were given hope.  Now, in 2020, my baby is not only alive but has graduated from kindergarten and lost 2 teeth.

How I Feel

My gut aches.  I am physically ill at the pain that he has gone through.  There has been great pain.  No one will ever know what he and I have been through together.  There is a bond that we have because through it all, it’s been Hunter and me.  Bart has been amazing.  He goes when he can.  The support, love, devotion, and still have to deal with other kids and a full-time job.  My children.  Family.  Church.  Friends.

I know Christ died on the cross to heal Hunter.  It just has not manifested, completely in his body.  We still do treatments every month.  He still struggles in some areas and tremors are always there.  We still worry about when he gets sick and a flare-up.  I still carry around the “what-if” guilt.  It is still there and I am now praying for deliverance for that guilt.

My Baby

He is busy.  Mouthy.  He pees on kittens occasionally.  There are still some fits, tremors, eye twitches, and speech issues.  Yet, there are no more rages (praise God), no more ACTH shots, no more OCD (for the most part) issues.  Treatments are easier because he is a pro at getting an IV.  Meds are taken with grace and not a fight.  He is aware that he has OMS and is learning about his condition.

My baby runs, plays baseball, jumps, dances, and says things like “Taco Tuesday and Hump Day.”  He has changed his name from Hunter to Kid to Mario.  I’m no longer “mom” because that is old, done, gone…I am not Princess Peach.  He apologizes when he is wrong.  Loves to have me smell his hair and say “it smells like rainbows and sunshine” after a bath.

He is alive.  Death from OMS is not in his future.  God has big plans for him and He has allowed me to be front and center.  The phrase God is good all the time and all the time God is good runs through my head.  I never thought I’d be able to say that and mean that again.

Yet…He is good.

 

Life or Something Like It

Self-Care 101 During Co-Vid19

Self-Care 101 During Co-Vid19Self-Care 101 During Co-Vid19

I have been in this house since the beginning of March.  Well, I have been “out” 2 times.  Both times were to take my son to treatment.  **Be jealous.**  I do drive around town, occasionally.  My son is medically fragile.  I choose to be safe and keep my behind at home.  My husband works outside the home 2 days a week.  Boo, our oldest son, does have a job.  For the most part, my family is contained.  We don’t see anyone and no one comes here.  YET…things are slowly opening up (wear masks and wash your hands)!  So, Self-Care 101 During Co-Vid19 is happening!

Excitement #1

People of the internet land, I am getting a massage!  I cannot tell you how excited I am.  When my friend texted me, she told me that A) she was opening up with HUGE restrictions based on our state.  She scheduled me.  Then, B) she had to cancel because the number of restrictions were hard, so she was going to have to wait until it loosened up a little bit more.  Safety for all people, ya know.  Mad respect for that, yet HUGE disappointment.  Then, C) because God is good…our governor switched things up again and I got scheduled again.

90 minutes of sheer bliss.  I can’t even.  Not only do I get to see the precious face of my friend but she is totally going to jump on my back and work her toes into my knots.  She is AMAZING!  I’m so pleased that she is so mindful of the rules, my health, her health, and all the things.

I might have told her that I was gonna walk in with nothing but my mask on.  She, politely giggled and said “Uhm, no.”  LOL.  I love the fact that we laugh and talk.  It isn’t total silence.  We catch up on all the things.  Then, when she does my back, I fall asleep and drool.

Excitement #2

I GET TO SEE MY MAMA!!!!!!!!!!!  Oh.  My word!  I have not seen her in 3 mths.  Now, we talk multiple times a day but I get to SEE HER FACE!  You will not be able to peel me off the ceiling!  As you get older, you realize that you still need your mama (and dad) and how precious they are.

I gave her instructions.  First, we were going to hug for an hour.  Then, she was going to rock me for at least 2 hours.  Next, I’m going to curl up in her bed and she is going to stroke my hair and sing to me while I nap for about 4 hours.  Last, I’m going to wake up and she is going to have cooked my favorites.  Fried chicken, mashed potatoes, green beans and potatoes, macaroni and cheese, and lima beans.  Before I leave, we will hug for another hour.

She kindly said “now, Brandi, we probably won’t do all of that because there is no touching.”  Little does she know…I will wear a garbage bag or something to keep the cooties away.  I just want to see her person.

Excitement #3

We are meeting friends for dinner, at their house (where they have not gotten out…so no one will have been exposed).  Grilling out, swimming, chatting with other adults.  All my kids (who again, have been quarantined).  Stop it.  Just stop it right now.  I miss this friend, terribly, and I’m so glad that we have 1 case in our county.  For the most part, people are abiding by the rules.  There are the ones that don’t listen well, which is sad.  Having a medically fragile child puts all the things into perspective.

Excitement #4

I am getting my hair done.  Let me clarify, I’ve decided to let myself go gray (oh my word).  So, I’m just getting a haircut BUT I miss my friend.  I’m so excited I get to see her.  There have been some amazing humans touch my hairs.  I have been so blessed by the hairstylists who have become good friends.  Now, if God would just create in my hair a pretty blonde and ringlets, that would be great!

I have been cutting my boys’ and husband’s hair for a long time.  It is an art and I am not qualified.  Luckily, my husband lets me shave his off.  My boys’ hair, I have learned how to scissor cut and not make them look like they have an Amish hair-do.  I did, last night, trim my daughter’s hair.  My friend gave me tips and I did a pretty good job.  No layers, bangs, or anything wild over here.

Excitement #5

Because all things have been closed, my #2 daughter has asked that my oldest daughter, the youngest daughter, and me over to the place where she sleeps.  She wants to have a “spa” day and treat us all.  I mean, how sweet is that.  We will probably order pizza and watch movies while we pamper each other.  By “pamper” each other, I mean they give me a mani- and Pedi- because that is not something I’m good at.  Maybe we can get those peel-off masks that are so relaxing to me!

All of this is happening over the next few weeks, so it’s not like I’m doing it all in a day.  My mental health has taken a hit, like most people.  Self-Care is not selfish or wrong.  It is imperative that we take care of ourselves.

Listen to Me

Reach out to a friend, call your pastor, check with a counselor, call your doctor, take a bath, take a nap, read the Word.  Find a good book or movie or show.  Pet a cat, bake cookies.  Whatever you find relaxing DO IT!  There is no shame in having a movie marathon day.  Your mental health is so important.  If you need help, it is there.  You are loved, you are worth, you are strong, you are kind, and you are good!  Love yourself.  If you ever feel like life is too much, you can text 988 for help!  Or you can call Suicide Prevention Hotline.  Your life is worth saving!

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So Very Sick

Medical Issues

So Very Sick

So Very Sick

So Very Sick

Good gracious, I have been So Very Sick.  What started out with a bladder infection, ended up with a co-vid19 scare (other people scared of that, not so much me).  Honestly, I have never gotten a bladder (or kidney) infection until about 2 years ago.  Since my bladder sling, I’ve had 3 and they suck.

I have discovered that taking Cipro is like eating a tic-tac.  A tic-tac that makes your pee orange.  #GoodTimes  As luck would have it, I have a dear from who is a Physician’s Assistant and when I contacted her, she was ready to help.  Since I knew that Cipro didn’t work, we moved to Macrobid.  Take it 2x a day, with food, for 12 days and it will clear it up.  I did as I was told.  Considering I trust only a handful of humans…she is one that I trust.

Do You Have a Doctor You Can Trust

It is easy, for some people, to trust those in authority, especially when it comes to our health.  Me, however, not so much.  I have an amazing doctor, that I have known for a long long time (think probably 10 years) personally and professionally.  He has heard and seen some really difficult things in my life and the lives of my family.  I have been known to show up at his house LOL.  He’s a good one.  When I can’t see him, his associate is a PA and is as brass and ballsy as I am.  We have a good relationship and I’m sort of honest with him.  The nurses there, I have an amazing friend/professional relationship.

I say all of this to say that I’m perfectly happy with my health care providers.  Yet, there are some things I never ever talk to them about.  They will never get near my girl parts and I will not discuss those parts with these men.  I mentioned it once and I giggled at the beads of sweat forming on his forehead.  He would do whatever I needed…I just wanted to make him squirm.  We both got a good laugh out of it.

Girl Parts Doctor

I did meet a great dr who did my hysterectomy and my bladder sling.  So kind and I used about 80% of my words with him.  He was good and did a great job on my surgeries, but he left that practice.  Then, I remembered my friend who dabbles in a little bit of everything.  One, late night, we were texting about a book I wanted her to read.  I divulged my pain and some other “girly” issues I was having and she was a wealth of knowledge.

She is just who I needed at that moment.  God is good like that.  She fixed me up.  With my bladder infection, she prescribed Macrobid.  She knows my drug allergies and this is not one of them.  We thought it was safe and would take care of the issue.

Here’s the Thing

Since I went to our holistic dr in St. Augustine, my body is different.   I have had more sensitivities to meds than I have EVER had before.  These are meds I have taken for years and now, they make me feel “off”.  Also, my hair falls out, I am lethargic, grouchy, and so on.  The anti-depressant I took made me throw up for about 9 hrs.  This is a med I had been on for several years before going to the holistic dr.  So.  Freaking.  Strange.

Co-Vid19

With this going around, every single time I sneeze or cough people duck for cover.  Listen, I have allergies.  Really bad allergies…to cats…I have 12 cats, so 1 + 1 = 2.  This time was different.  I was down with the bladder infection, but it was manageable.  I took my first dose and I started feeling nauseous.  Almost like morning sickness.  I powered through that moment.  Honestly, I was just thinking that I didn’t take my meds with food.  I was diligent after that.

I took it on a Wednesday night and Thursday morning I was dry heaving for the next 6 hours.  It was awful.  I had nothing on my stomach and couldn’t keep anything down.  There were no other symptoms until my fever hit.  That’s when my mom, other mom, and husband got worried.  I had been nowhere, so I could not have been exposed.  My symptoms were not consistent with Co-Vid19 symptoms and I was too sick to move.

I contacted my EMT friend, who has been treating a ton of these cases, and my PA and neither of them had a concern.  Plus, I was fine the next day. Tired, but fine.  Then Saturday, I was great.  I didn’t take the meds on Thursday, Friday, or Saturday morning.  I did take it Saturday night.

Giant Mistake

Come Sunday morning, everything returned.  Dry heaving, stomach ache, and fever.  This time, I added in shortness of breath.  When I inhaled, I whistled.  Once I could keep liquid down, I took a Zofran and a breathing treatment.  Also, Tylenol every 4 hours.  Sunday was horrible.  Monday I was simply exhausted and by Tuesday, I was fine.  It has taken me time to get my appetite back up.

We checked and I have all the symptoms of having a Macrobid allergic reaction.  So, on a bright note, I had suffered through enough of the meds for my bladder infection to be gone.  Also, I lost about 4 lbs.  On a crappy note, I don’t really know what to do if (when) I get another bladder infection.

Proactive

I’m going to get some cranberry gummies, I have been taking probiotics.  Also, I’m drinking more water with lemon and cutting down on sugar.  I don’t know how helpful that will be but it can’t hurt to try to prevent it.  I’m very thankful it is not Co-Vid19.  I have had friends that have had it and it is no fun.

Wash your hands, wear masks, be mindful of the elderly, immuno-compromised, and young people.  Take care of yourself.  I am on the mend and I’m thankful for that.  Still, I’m resting more and really trying to listen to my body.

Hopefully, I can get back into blogging.  Got lots on my mind…just a matter of if I can get it eloquently out of my fingertips.

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