#Findingyourcourage, #Keepingitreal, Anxiety, Burn out, Chronic Migraines, College Life, Discouraged, Exhausted, Journey, Keeping It Real, Life, Living The Every Day Life, Medical Journey, Migraine, pain, Parenting, Real, Stress, Trials, Weakness, Weariness

Living My Real

A Day in The Life of Our Medical Journey

Credit: Home. Life. Encouragement

This is how I am starting my day again. Sitting in a doctor’s office parking lot.

Today is a bit harder though. Today I could just sit here and weep as my daughter walks off by herself to go get 25-30 nerve blocks in her head for another month.

I’m choosing to not give in to my emotions though in just the off chance the “Corona Police” are not at the front door inspecting everyone (please, do not criticize my response). I know they are there to help and protect others, but when you live what we live, it isn’t easy to run into this “all” the time.

Thanks to this Corona Pandemic she has to do all her doctor appointments alone, because they will not let me anywhere near the building.

Seriously people, who wants to get all of these shots in their head and do it alone?

I can speak for myself, no, not me! I hate shots and I’m talking just the ones you get in your arm.

But for my precious daughter, she is getting them in her head to help with her chronic migraines. It is the only way she can manage them now. She does this once a month, but who knew we would ever get to a point in life where she would be forced, by others, to have to endure this all alone.

Today is one of those difficult days to watch her suffer and struggle.

I have already texted my husband asking, why?!? Why does she have to battle to live a “normal” life.

Why does everyday have to be one where she endures pain and overwhelming fatigue?

Why can’t she be healthy and live a “typical” college kid’s life?

This has been an exasperating week for us, which is probably why I just want to sit and weep and maybe even just cry.

Our health insurance, which is suppose to be the top of the line, has decided that because she reached her “projected” graduation date that they are going to cancel her health insurance in a matter of days.

These are the same people who pay a “ton” of money for her health care already.

So we have had to jump through some mega hoops to get the proof from her college, (that is closed down due to the Covid-19 crisis), to prove she is still in college.

I am completely baffled as to how and why this is happening still.

We are left now praying that everything we submitted will work to prove she is still in college. If just one person slows this process down, she will be left not covered by health insurance.

Without health insurance all her treatments will stop, she will not have access to the specialists we spent years trying to find, and we will not be able to afford all the medicine she is on.

This is such as scary thought as I write it. It should be something we shouldn’t even have to be going through. The system is seriously broken for this to be occurring. This was something we knew would be coming on her 23rd birthday, and that we were prepared mentally for, and would not have waited until the last minute, or in this case, second, to fix it.

No, in this situation, someone made a serious mistake 2 years ago and we are just now finding out about it and have literally hours to fix it before the damage it will cause to my daughter will be massive, debilitating and permanent.

So, I sit here with a knot in the pit of my stomach, looking at a busy parking lot. There is an ambulance and a fire truck at the entrance where I keep looking up to see if my daughter is walking out of.

I’m left to sit here asking God why? Why does she have to suffer? What will be her story? What will be her testimony? Why does every day have to be a battle?

Until God decides the time to reveal those answers, I know I just have to keep trusting in Him for the direction, protection, and discernment.

Are you in a similar battle? I know others are. Please know I’m here with you. I know the lonely feeling this life brings. Please know if you are, I standing beside you.

You’re not alone!

Educational, encouragement, Homeschool, Inspiration, Journey, Keeping It Real, Learning, Life, Living The Every Day Life

Bubbles and Experiments, The Things Memories Are Made From

Credit: Home. Life. Encouragement

In my quest to bring my blog back to life, I have decided to not just share encouraging information, but to share some our everyday living as well.

I will be adding a new category to my blog and I will be calling it Living The Everyday Life.

This will be my first story in this new section. I will be adding a link to my tabs for this as well and will be adding to them as they are created. Stay tuned to future adventures.

So here is our Sunday Funday accomplishment.

Kiddo needed a lab partner for her college online Biology Lab experiment.

When this happens, it becomes all hands on deck and a family affair. So here are a few pictures from who was available to participate.

Shadow, the technician master. He was not happy to be wearing safety glasses.
Grady, the experimental supervisor.

I love how no matter how old my child is, that she still comes to me for advice, guidance, and/or help.

I believe by having homeschooled her, for her entire life, that it created a learning bond between us. So when she needs educational help or guidance she isn’t afraid to ask for my advice.

Some bonds that are created will not be easily broken.

HD Benson

For this, I am thankful for the years we have spent together.

So today’s adventure in education was the great Bubble Experiment.

She had to hypothesize which brand of bubble gum would create bigger bubbles.

I have to admit, it was a fun experiment, but oh my goodness, bubble gum tastes horrible.

I never realized that at 22 years old, she never learned how to blow bubbles with bubble gum. So guess what she needed help with? Yes, blowing the bubbles.

So mom to the rescue however, despite the horrible taste of the bubble gum, it was a fun experiment.

I will never think of bubble gum in the same light again though.

I will include some interesting pictures and this way if you want to do this with your kids, you will have an idea of how she did her experiment.

She learned about; Constants, Independent and Dependent Variables, how to write a hypothesis, and how to formulate a conclusion while graphing her results.

The pictures below are some of what she provided to her professor proving she did the experiment.

In conclusion, the best part of this activity was the time we spent together and the memories we made.

Take the time today to make some memories with your family and your kids. It doesn’t matter what you do. All that matters is that you do something.

I hope you enjoyed this Living The Every Day Life segment.

Believe in Yourself, Encouragement Today, Inspiration, Journey, Life, Strength

Mom, You Are Enough

Image and Post are Credited to Rachel Marie Martin @findingjoy.net and @TheBraveArtofMotherhood.com 

Encouragement Today

Are You A Tired and Discouraged Mom?

Are you a mom who finds herself struggling with the exhaustion of the mundane day to day life of raising your children. 

I would like to share with you a powerful and encouraging blog post written by my friend, Rachel Marie Martin from @findingjoy.net. She wrote this to encourage the mom who is struggling to find joy in being a mom today.

Why Being Mom Is Enough.

“Being a mom is enough.

It’s enough, I say.

Sometimes we want to look to those big things and use them as a grade for success. We look at the cool science fair projects where our child got the blue ribbon. But, honestly, we miss the hours of interacting and holding glue sticks and looking up things and laughing side by side. We want the trips to Disney or American Girl Doll and discount the time spent in the backyard. The bar of success and joy and happiness gets pushed so high by culture that the little things, the enough mom moments, are lost.” -Rachel Marie Martin @findingjoy.net and @TheBraveArtofMotherhood.com

This post touched my heart today because, for years, I struggled with measuring the success of being a mother against the success I could have had with the career I gave up when I became a mom.
I think because I didn’t grow up with a realistic image of what motherhood was, (not that my mom was a bad mom, because she was not. She had severe health issues and found herself in an abusive marriage which compromised her ability to invest in us like we think of motherhood today).  I believe overall this contributed to my struggle to find my mother identity within the world of motherhood even still today.
 
Before I got married and had my daughter, I was a career driven person who knew what I wanted and was striving to achieve it (this my mother taught me). Then just as I was finishing up college, I met my husband and my life changed from that point forward. He was on active duty with the United States Army and within a year of being married, we came down on orders to move to Germany. After living in Germany for two and a half years, I became pregnant and within six months of returning back to America, my daughter was born. 
 
This is where I can truly say my life changed forever, even though mentally and emotionally I was not prepared for it, my daughter came along and I knew being a mom was more important to her than any career in Law Enforcement I could have had. 
 
This is why this post resonates with me today. It reminds me that being a mom “is” enough. Our kids do not measure us up to a career we have or could have had. They do not measure us up to our incomes we make. They measure us up to the papers we color, the books we snuggle and read together, or the puzzles we make with them. They measure us up to the hours of hiding and seek games we play, the cookies we bake, or the peanut butter and jelly sandwiches we make. 
 
My friend, it does not matter what you do with your kids, the only thing they really want is for us to love them, to share our moments with them, and to invest in them with our hearts and love. 
 
Mom, your reminder today is that “you are enough!” You are making a difference in your children by being “a Mom”. 

Journal Journey, Journey, Life, Migraine

Sunshine Among The Dark Clouds

Journaling Journey

Entry 1

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Today we started the day out at the allergy office and Kiddo received her allergy shots for another week. I am not sure what they did this time, but it appears this set of shots is going to bruise.

Today I asked her how she felt and received a generic response back, but later she came to me with a “real” update, thankfully. I am happy to announce (prior to her going to work) she said her migraine had gone away for the moment and although her head still hurts physically from all the knots throughout her head and neck, she is able to keep this pain maintained. As long as she does not come home from work with a migraine, I am going to hold out hope this set of nerve block shots may actually work.

With her complicated medical issues, there is always a give and take with pain though. As she told me her update, she did allow she is keeping a migraine at bay but is also fearful she has another sinus infection. She is feeling poorly and has been concerned for several days this could be the onset of another infection.

I just put my hand to my head and say, “Why wouldn’t she have one, she is overdue for it because she has gone a month without one.” So now we hold our breath as she fights through the sinus pain and pressure of another possible sinus infection.

I have to share this story she told me about a conversation she had with God. It goes like this,  “Okay Dude, what the heck is going on? Why do I have to battle these battles? So you take my migraine away and let me have a break from that crazy pain, but yet You give me this sinus pressure and pain as well as a possible infection? What the heck am I doing wrong? Why do you keep doing this to me?”

Please do not get me wrong, I have not taught her to be disrespectful to God, but I love the way she is comfortable to talk to Him in such an intimate way because she isn’t afraid of Him. She goes to Him with all her needs, pains, desires, and questions which rarely are answered. I also love her complete honesty in sharing these emotions and conversations she has with me.

Her words show how frustrated she gets over this pain and how real and raw her feelings are. It breaks my heart to see her struggle while she watches other college kids her age living their lives with minimal concerns. We hold out hope one day, she will reclaim her life from all of this pain and agony, but until then we just struggle through day by day and minute by minute.

I pray while she is at work, God is protecting her fragile head and allows her to be a migraine free and if He could add a headache free afternoon, this would be equally as wonderful. I know this would make her happy and appreciative.

These are my random thoughts for today. I hold my breath and wait while we live minute by minute for the next few days.

Chronic Migraines, Journal Journey, Journey, Update

A Summary of Where My Journaling Journey Begins

design-21Let me begin my Journaling Journey by providing you with an update of what my sweet daughter’s medical journey has been like.

When my daughter was 13 she began complaining frequently about having headaches. I dismissed them initially by simply telling her to take some Tylenol if it hurt bad enough for medicine.

Then by the time she was 14, she started complaining about them becoming more intense. This was when my alarm bells began to ring that this has become a bigger problem, but it was just her head. What does anyone do for a headache but to treat it at home and do your best to beat it?

As time wore on, I also began to see her spring and fall allergies become more than just seasonal. She seemed to need allergy medicine more often than just the occasional times. Why? At that time it was anyone’s guess.

Fast forward to 16 years old, now she has headaches multiple times a week and has migraines multiple times a month. Why? It is still anyone’s guess.

I saw her struggling, but did not know why. At this point, she began getting more and more strep throats and sinus infections. So many more that her primary care doctor suggested I take her to an ENT (Ear Nose and Throat Specialist) which I did.

design11He agreed she had a problem but needed to run some tests to determine what might be causing this issue. He removed her adenoids hoping this was the problem and her infections would clear up. He also suggested doing an allergy test to determine what she was actually allergic to so we could narrow down how to properly address her allergy symptoms. The results of this were crazy. She came back allergic to just about everything you could be allergic to environmentally. Why? We do not know.

Shortly after doing the allergy testing she started doing weekly allergy shots, which only continued to make her sicker, but we were told it would only get better and to continue doing them because it was in her best interest.

After almost a year, she only got worse, her sinus infections were not only significant but they never went away. At this point, we were sent to expert ENT with this hopes of figuring out what was going on. This led to the completion of allergy shots and led us to a less than satisfactory doctor experience. I ended up removing her from his care, which for her was not soon enough.

Unfortunately, she did need another ENT and with the quickness because she became a “frequent flyer” to our local Urgent Care and they thankfully referred us to who she still sees today.

This doctor has been amazing. He sent us to her Allergist she is presently seeing, who through determination, stumbled on her Immune Deficiency which she was born with. It finally shed light on why she could not get rid of her strep throats and sinus infections and why when she was a baby she had five cases of pneumonia. It all made sense, but what do we do with this information? This we are still working on. This diagnosis, for some reason, had begun to get worse, and now they would like for her to take Immune Replacement Therapy in order to build up her immune system which is fighting against her. This journey will be difficult as we have already been told, the insurance company will most likely refuse this treatment because it is too expensive. This is a fight both the allergist and we are prepared to fight. I am sure I will be writing about this experience as we begin this journey, as I am prepared for it to be a rocky one at best.

So jump ahead to where we are presently and this is with my child fighting her own body, day in and day out. She battles herself with relentless and chronic migraines, an immune system that does not retain the virus’ information it comes in contact with, and her constant sinus infections as a result.

Why does she have to go through this, I do not know. I wish I did.

So the long and short of all of this is… does she have a serious disease such as cancer or something else equally dangerous, no? This I am thankful for, but yet I sit here having watched her struggle for four long hard years now and we still do not really have any concrete answers as to why or where this came from, minus her Immune Deficiency.

B95A8528-455C-4B1A-89D0-5FF7769D5299We do not know why her body fights against itself with these debilitating migraines. We do not know why they are resistant to treatment methods (and yes, we are at the top there too. She sees a top of a line Migraine Specialist) who has taken her to just about every method of treatment there is. She does Botox every twelve weeks, she just started this new migraine medicine called Aimoveg, and just yesterday had a second round of Nerve Blockers (but he was more aggressive with them as this migraine is just relentless). If this does not work then she could be in the hospital as early as next week to fight this migraine with medicine that can only be administered via a hospital environment.

So in closing, this is what my sweet daughter has fought through for the past four years, she has fought and continues to fight to gain her life back. There have been way too many difficult days she has endured. She has had several surgeries since this started, all of which she needed, and she still battles her body every day.

As a mom, it tears my heart into tiny little pieces and there is nothing I can physically do to make any of this better. The only thing I know to do is to stand by her side at every appointment and stay up with her at night when she is sick and in massive pain, and just keep praying over her mind, body, and spirit every day.

Now I have given you a summary of where this journey for her began, now it should make better sense as I journal my way through the days, weeks, months, and years ahead. There will be days of frustration, sadness, joyous occasions to celebrate, (I hope), and times of what we call dark humor (which we have come to use as a survival technique to find our way through the many dark days we experience).

I am unaware of how many times a day I could journal about this or if I will write every day, but to know I have an outlet to come to is an encouragement to me. I am looking forward to just having an outlet to put my thoughts, questions, and fears without feeling like I am burdening my friends again and again.

It is my prayer and desire that this journey we are on might bring encouragement to other families who struggle with their own problems, that they know the struggles are real and you do not have to be alone. We are here to walk along beside you.

Now my Journaling Journey will begin.

Next stop, allergy shots again tomorrow and we continue to wait and see what the nerve block will do for this stubborn migraine cycle.

encouragement, Journey, Life, Strength, Thankfulness

Thank You, Parents, For Being Present

This is a special note to all of our great parents.

baby sitting on man s shoulder
Photo by Maria Lindsey on Pexels.com

Thank you for sharing the love of a parent with your child.

Thank you for walking hand in hand with your child.

Thank you for going to all the football, baseball, soccer, field hockey, volleyball ball games and so many more.

Thank you for dressing up in the silly and fun costumes as well as going to harvest festivals.

baby touching woman s face
Photo by Daria Shevtsova on Pexels.com

Thank you for sacrificing all the hours you spend at the park.

Thank you for all the smiles and the time you take to listen to their day’s events.

Thank you for all the play dates you have planned.

Thank you for all the birthday parties you have planned.

Thank you for the hours of homework you have invested in.

Thank you for all the books you have read.

Thank you for all then unexpected trips to the Target, Walmart, or craft stores for the unexpected projects that need to be turned in the next day.

grayscale photo of baby feet with father and mother hands in heart signs
Photo by Andreas Wohlfahrt on Pexels.com

Thank you for drying the tears running down your child’s face.

Thank you for the hours of playing pretend with your child.

Thank you for playing play dough for countless hours with your children.

Thank you for all the meals you make whether they be a nutritious and wholesome meal or it is your child’s favorite of mac and cheese (because it is their favorite).

Thank you for the hours you may have spent at the doctors’ office or the emergency room.

Thank you for being you, the loving and engaged parent.

Comfort, encouragement, Journey, Kindness

The Warmth of A Parent’s Heart

Motivation Monday

There is nothing more rewarding that touches a mom’s heart then to unexpectedly hear the words, “Mom, you’re the best.”

Mom’s and dad’s, we all know our kids hearts. We know how to touch them and reach them. We know what their love language is and we try to talk to them and love them by using this language.

55E60F15-8389-4FF4-B8F5-11F9D45F5356We also recognize a lot of times that what we do for our kids goes unappreciated. Keep your chin up and keep doing for them (especially if they are teenagers), because when you least expect it, they will reward those countless efforts with unexpected love and maybe a few short words. Grab the love and those words holding them tightly to your heart.

When my child was small I learned from a pastor to tell our children often that we love them, but don’t forget to tell them you like them too. He stated that all to often our children know we love them, but when asked if they feel their parents like them they say no. When questioned why their responses were no they would reply, my parents have to love me because I am their kid, but it doesn’t mean they have to like me.

Ever since I heard this, I have always wanted my child to know that I not only love her, but I like her too.

I started this out when she was very young and have continued telling her this right through today. I don’t ever want her to think I don’t love or like her.

Mom’s and Dad’s, don’t be afraid to tell your children this regularly and as often as you need to, for them to feel it in their hearts. Do not forget to show them as well. By showing them, it doesn’t mean you have to give gifts. By showing them it is by doing something that will touch their heart. Do they love food, then meet them there. Prepare their favorite food for a meal when they least expect it.

If it is by touch, then sit down beside them and watch tv or read a book together. Brush their hair as we all know how nice that feels when someone runs their fingers or a brush through ours. Oh and sweet mom and dad, DO NOT FORGET THE POWER OF A HUG!

Do they feel special because you share your time, then think about their favorite activity. Do they like to play soccer or shoot hoops, then make the time to do this. Do they like to create things, then meet them their. Do they like to play board games, then play a game.

Do they like to help you, then include them in what you are doing. If you are a dad and you are working in the yard or on the car, include your kids (both girls and boys if they are interested). Mom’s your greatest tool is usually in the kitchen. Allow them to cook with you if they are interested. This includes both the boys and girls as well. Whatever it is you do with your family, include the kids. So many times we are in such a rush that we do everything ourselves while the kids are off playing or in their rooms playing video games or texting/chatting with their friends. Re-engage in that relationship. IT IS NEVER TOO LATE.

It doesn’t matter what you do, it is the investment of your time and love that will touch their hearts and leaving lasting imprints on them forever.

Hang in their mom and dad. If you love your children, then you are doing an amazing job. I know how frustrating this can be no matter how old your child is. There are many times we get tired and weary, but cling to the hope and assurance you are touching their hearts.

Take one day at a time if you are in a season of struggling. Allow God to show you how to touch your child’s heart. He created them and He knows how He wants them molded. Trust the process no matter how difficult it may be. You’ve got this.

Then when you least expect it, you will be rewarded with the wonderful words, “You are the best”or “I love you.”