Tag Archives: miracles

The caregiver life, hopes and dreams

You can’t imagine the frustration of wanting to leave the house but not being able to on such a long term basis. This summer I have had more freedom than I have had in a long time. Lately with my oldest and the grand baby not living here I’ve had many opportunities to leave my son in charge at home and leave the house. It’s been amazing, but tomorrow school starts and I won’t have the same freedom and backup like I’ve had over the summer. Over the years I shelved personal hopes and dreams. I had to come to a place where I was completely content having my life revolve around being home and taking care of Mike. As school starts tomorrow I find myself reminding myself that home is where I belong and that I can have complete contentment right here at home. It just takes some rebalancing and centering of my thoughts. I have taken on some work days with a photography company, starting hanging out with new friends, going to church again and have gotten a taste of life outside the house. It’s bitter sweet enjoying the freedom but it being limited. 

Its one thing to have kids and find a babysitter, but I find myself with no options for a “sitter” for my husband. (If there was an emergency I have people who will drop everything and be here. I’m talking about just wanting to leave the house) I know there are private companies, nursing homes, adult day cares – but for one reason or another they are not the answer for us. His comfort, our finances, etc.

I need to blog more on the daily life of caregiving. I think people don’t realize the intensity of caring for someone who can’t care for themselves. Mike was up at 3am hungry. He can’t even pour a glass of milk, make toast or a bowl of cereal. So yesterday morning I was up at 3am and took the opportunity to shower him. He can’t shower himself and he often refuses to shower in the moment. He always says “later” but later never easily comes. So I showered him, dressed him and fed him. Then I let him lay back down. I spent some quiet time with God thanking him for the blessings in my life (because there ARE so many blessings.) I prayed for peace over the house and an ease to take everyone out to church. I loaded up the wheelchair and we went to church. While we were out I decided to push our luck and try a fun outing. Mike started to complain of feeling weird, overwhelmed, exhausted, and head hurting but we went for it anyways. We ended up having a beautiful day out of the house.

There are so many dynamics to being a caregiver to someone who has brain issues. There is awkwardness when a waitress asks a question and he doesn’t understand. I have to keep in mind that he gets confused with utensils easily so I either have to cut up his food or order him something that won’t confuse him.  There’s the blindside and the fact that there is a likely chance he will swipe anything off the table that is to his right. The fact that many places do not have family restrooms and he isn’t stable to walk well on his own often. The physical toll of lifting him when he can’t stand. The physical toll of lugging around a wheelchair and getting him in and out of the van and in and out of the wheelchair. The fact that he can’t be left alone ever…at home or in public. If I were to take him somewhere alone I can’t leave him at a table or in a church service to go to the bathroom. That many times places just aren’t really handicap accessible. Don’t take this as complaining; it’s just awareness. There are family members out there of caregivers that have no idea what they really go through and I barely scratched the surface. Many are completely bedbound. As hard as life is with Mike, I am passionately thankful for th me aspects of our life that are blessings.

I will continue to be so thankful for his life. Many others like John McCain don’t have the chance to live 6 years after diagnosis like Mike.

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As I was scrolling through photos. This one came up. This was a day I was able to leave the house and was really excited to come home and tel Mike about my day. He wasn’t mentally there for conversation that day and slept the entire day. This is the norm. He spends most of his time in bed. I try to stay lighthearted about it so I laughed about him rolling over and going to sleep when I tried to talk to him. I might get mad at our situation but I never get mad at him or take it out on him. This isn’t the life he would choose either. I hope something in this blog touches you in some way. I hope it brings awareness or comfort depending on your situation.

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A caregivers poem

We promise to stay by your side, to be your guide.

….Even in the moments it feels as if the entire universe and our plans collide.

A compass in the wilderness.

Even when the task is vigorous.

We have a bond that only we could ever share.

We will do our best to ease your mind and show we care.

We won’t ask you to remember, or ask you to understand.

We will simply be here to hold your hand.

In the morning, joy will come… even though the night is proving to be unbearably long.

We will rise and stand strong.

When life is crashing like a turbulent wave.

When we feel like we’ve spent all of our energy on day to day tasks, we dig deep to that reserve of energy we knew we had to save.

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Look what the Lord has done!

I had an opportunity to hang out with Revival Worship Movement at the Chesapeake Jubilee this past weekend. If you know me or have read this blog, you know I can go on and on telling our story. I have a lot of words to say! There are SO many layers to it and it’s actually 22 years in the making. It all started with a prophesy 22 years ago when God said “I will turn the heart of one around. Your prayers regarding his life will come to pass.” We’ve seen physical healing, family healing and heart healing. As I stood there during that worship song, I realized God didn’t want me to beef up our testimony with lots of words this time. This time I was just to share briefly enough to say “Look what the Lord has done!” I don’t think I’ve EVER summed up our testimony in less than 2 minutes, even with a random person at the grocery store. It was a simple message of hope. Thanks to Terrance Howell and Revival Worship Movement for giving us a chance to share what God has done.

Untainted Love by Revival Worship Movement is available for purchase at the following links!  Amazon  Google Play  Itunes  Spotify Tidalshauna


Because May is brain tumor/brain cancer awareness month…and because I look back at the last 6 years since diagnosis and say “Look what the Lord has done.” 

We aren’t any more worthy than anyone else and I don’t understand why I’ve seen so many amazing people lose their lives here in earth to Glioblastoma and why Mike is alive – I do know many lives have been touched and I knew in 2012 to start my blog so people could follow because I felt that God was going to use our situation for something big. I just felt like there was a bigger picture all along. I accepted the prognosis. I prepared, I planned a funeral, we made sure all affairs were in order. We found peace. I have gone through some lows and have been exhausted too, but 90% of the time in the past 6 years I’ve held strong.

Mike’s surgeon specifically told me not to even bother with a second opinion. That’s a huge part of my memories and a huge part of knowing God was in this from the beginning. I’m a people pleaser and I had to learn to stand up and fight back. To be an advocate for Mike and not accept just whatever I was told. His surgeon was amazing and I know every person we dealt with had a purpose for our lives. But I remember by discharge I already knew I was taking him to Duke and I had kinda asked the surgeon his thoughts on a second opinion at Duke or MD Anderson before starting treatment – he said no, not to even consider it. To contact a local doctor – which by the way, there is no a treatment that will cure GBM – chemo and radiation is just a way to buy some more months of survival. God put us on someone’s heart before Mikes surgery even happened!! She gave me a heads up on GBM and told me about how amazing Duke was before we had a diagnosis, I ALREADY knew that if I heard “GBM” that we were going to Duke for more options. She told me she knew Duke gave her extra precious months with her husband before he passed away. The Brain Tumor Center at Duke gives hope and options sometimes when other doctors don’t. Sometimes they just can’t, but I was told to get there fast (before starting any other treatment) for the best chances of having options. 

GBM is a horrible diagnosis. But it wasn’t a death sentence for Mike. Even if he would have died within that first year, GBM brought Mike into a place of eternal life. And not only Mike! So many lives have been led to God through this. CA71A330-7CDC-4F1F-A466-28CF909484E8


Grace – Our Afflictions Eclipsed by Glory

We are two months short of Mike’s 6th year past diagnosis.  My very first blog post stated “I hope this blog ends up being an awesome testimony of God’s healing and restoration.”

I haven’t posted many updates lately.  I’ve been in a place where I just couldn’t see purpose in all of this anymore. I didn’t feel like it was worth it anymore. Not feeling like you have a voice or purpose is an awful feeling. Especially since I’ve always been such a big advocate of HOPE.  I reached a place where individually I felt like my life was somewhat hopeless and was being wasted. I didn’t feel like I was living fully anymore, I was simply going through the motions.   I didn’t even know what to hope for anymore if I did dare to hope for anything.  To put it simply, I’ve just felt like a mess and was hurting a lot.

As I’m typing this, things have changed for the better since the darkest of the days.

I’m trying to figure out what I’m supposed to share, when, how and where. I’m not sure if I should be writing, speaking, etc. But I do know that I’m not going to sit back and let this past 6 years be for nothing. I’m not going to stop believing that there is purpose in this hardship. That I have purpose.

Many have heard 2 Corinthians 12:9 “My grace is sufficient for you, for my power is made perfect in your weakness” But I want to back it up to 7 and 8 where Paul speaks of the thorn in his flesh, a messenger of satan, to torment him. Paul pleaded three times with the Lord to take it away from him. How many of us have something that TORMENTS us? I know I have had many things in my life that I BEGGED God to take away. God’s response was not to take it away. God said “My GRACE is SUFFICIENT for you, my power is made perfect in your weakness.”  I will be the first to admit that this has been a season of weakness for me. But Grace. My afflictions eclipsed by His glory.

I will never forget sitting in front of my husband’s oncologists office in 2012 wondering what we have done wrong to be facing a terminal cancer diagnosis. Certainly a good Christian would not be diagnosed with cancer. Certainly this is a direct result of sin. I opened my bible app and the verse that day was John 16:33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”  He never promised that we would have an easy life! He actually TELLS us we WILL have trouble! He DID HOWEVER, promise us GRACE. Grace can get us through all circumstances.

As simple as that sounds, its not always something that feels attainable. I don’t want to mislead anyone into thinking I have this all figured out. Being a caregiver is hard.

God’s grace shows up IN OUR WEAKNESS. IN OUR HURT. IN OUR BROKENNESS. IN OUR IMPERFECTIONS. IN OUR MISTAKES. God’s grace can eclipse all of that!

Grace allows us to still have thankfulness, to still have joy, to still have peace…even in the midst of our hardest days. His grace and forgiveness washes away even our biggest mistakes.  Or maybe sometimes Grace just realistically looks like “Hey, I survived today. I had patience today. I had peace today. Well, maybe not even in every moment…but I was those things when I didn’t think I could be.” I think we sometimes have a hard time really comprehending the big picture. For me personally, when I think of Grace….I think of surviving moments that felt helpless. I think of coming up for air when I felt like I was drowning and didn’t have the energy to even tread water. I think of the days I was able to remain calm and patient when everything around me was spiraling out of control. 

My husband was a Marine for 21 years. Two years after he retired, a month after our youngest turned 3, he woke up one day severely confused to the point that he could not even function. He had taken Thursday day off work to blow bubbles with our youngest daughter before leaving the next day on a business trip to Japan. He was really confused that morning though. He was looking in the fridge for his socks and said he needed help getting dressed. I knew something was wrong, so I loaded the two of them up and went to the ER. Initially they realized he had no right peripheral vision and they ordered a CT Scan. They found a mass on his brain and ordered an MRI. That night we spoke to a brain surgeon and were told that we were going to stay the night while they got his brain swelling under control and then we should go home and get our affairs in order and prepare for him to have brain surgery the next week.  The doctor suspected it was a high grade cancer. To make a long story short, he was diagnosed with Glioblastoma which has a prognosis of a weeks to a few months with no treatment, or maybe about a year WITH treatment. People don’t survive this cancer generally speaking. Less than 4% live to see 5 years past diagnosis.

Mike went on hospice in January 2015. While he was on hospice, our 15 year old became pregnant. That entire situation was a huge lesson for me on grace. How to give it and how to walk in it.  In Dec 2015 our grandbaby was born while Mike was still on hospice. After a year and a half on hospice, Mike was removed.  He is much like a dementia patient as he struggles with self care and memory. He requires 24 hour supervision and assistance. Through all the struggles, all the stress, all the overwhelming moments, God’s grace has sustained me.

God’s grace is bigger than our mistakes. And have I ever made mistakes.

God’s grace is bigger than our brokenness.  And I am the first to admit I’m broken.

God’s grace is bigger than our mess. I am a mess at times. I’ve made messy decisions…I don’t have all this figured out quite yet.

God’s grace is bigger than our PAIN. And let me tell you, I’ve experienced pain this year. All the emotional pain of the last 6 years hit me hard and took me on a downward spiral. I can’t be the only one who has experienced this. Nothing specifically changed on the outside, but on the inside all of a sudden I just felt Raw. Broken. Hopeless.

At my lowest, as God always does, he swooped in and saved me… Again.  And I have a feeling He will do this again and again and again.

The Session this week is called “Call it Grace” and those three words are what inspired this entire blog post. Log into Facebook and check us out April 21st at about 7pm Eastern time and hear more about the life saving power of grace.

 

 

 

 

 


Inspiration

I’ve realized lately that being an inspiration really drives me. Not in a way that I want attention or that I feel like I’m receiving some kind of praise, but more in the sense of wanting others to be better, to feel better, and to have hope.  If I can share my experiences and if that sharing can result in others having more hope or for them to find the energy to push through something they didn’t think they could face, or for them to have a desire to pay something forward and help someone else – that makes me want to share more. I want to see lives improved, refreshed, and uplifted.

I haven’t been sharing a lot lately for several reasons. Our life doesn’t change much day to day and there aren’t medical updates. In the beginning I was learning how to navigate Glioblastoma and I had three purposes for this blog – To give God the glory for the healing that I believed was going to happen, to keep friends and family updated, and to help others navigate their diagnosis and give them hope and inspiration.

Our experience with Glioblastoma is not a normal experience because Mike is still here 4.5 years later.  Now I’m learning to navigate an entirely unplanned situation.  I like to plan and I like to have an idea of what my future holds. Even when the prognosis was scary, there was comfort in planning.  I had to plan for him to pass away as thats the normal outcome of someone diagnosed with Glioblastoma. I have learned that I have no idea what life has in store for my family.

….Then I realized that life would be hard either way. That losing him would be unbearable…and I also realized that this new normal wasn’t going to be easy or full of enjoyment either. I’ve had to embrace that its ok to feel that way. That I shouldn’t feel guilty for grieving what we had or what we thought our future held. I did lose a lot with his diagnosis. He is here but there are many things that we grieve that are no longer here.  I had to realize that I couldn’t prepare for the future.  I have to just face it each day and navigate the best I can. I’m a wife in my 30’s – but I feel like I’m living a lifestyle of someone much older. He’s like a dementia/alzheimers patient. Going from having a husband who was a strong head of household in many ways to now being the head of the household has really been a transition for me.  All responsibilities fall on me. I now have a husband who doesn’t understand how to pour himself a glass of milk.

I’ve grown so much through this experience and I want others to know that whatever it is that you are facing – you can do it.

Having a husband on hospice and a 15 year old daughter who was pregnant felt impossible.  We did it and we are still doing it.  I could have given up. I could have decided I couldn’t face the next day. But I didn’t. I fought through to see the joy that I knew was coming. I’ve always held onto the thought that joy comes…if you hold on long enough, you will have a moment that made all the hardship worth fighting through.

Establishing a successful business felt impossible with the limitations of being homebound and taking care of such a hectic family – but I’ve made Trainer with LuLaRoe and have been absolutely blown away with the success of my business.  For many months I thought “Ok, I will keep putting one foot in front of the other until I fail, and then I will throw in the towel.” I gave myself permission to fail before I even started. In my mind, I wanted to go ahead and try and get the failure over with so I could get that desire to try behind me.  I knew I wanted to try selling LuLaRoe. I figured I’d fail. Guess what…I’m 6 months in and instead of bracing for failure, I’m now excited to continue to build my business.  Sometimes you have to face a situation with tenacity. You have to dig deep and you have to fight to get through some things.

So here I am – hoping that I can give  you some inspiration to face those things that feel impossible. New diagnosis, scary prognosis, personal situations – whatever it is, you’ve got this!

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On Christ the solid rock I stand, all other ground is sinking sand – Hope with Glioblastoma

Lately I wake up all hours of the night worried about the future.  I know the bible verses that say not to worry.  They are plastered all over my house as a reminder.  But it happens. I woke up with the song “On Christ the solid rock I stand, all other ground is sinking sand” in my head.  I never wanted to be in a place where I had nothing to hold onto but Jesus…but here I am. Its a hard place to be.  I looked up the song, and the words meant so much more to me than ever before. 

People will say “My husband is my rock.”  With that thought, where does that leave me with Mike’s terminal illness?!  It leads me right to the cross.

My hope is built on nothing less
Than Jesus’ blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus’ name.

When darkness veils His lovely face,
I rest on His unchanging grace;
In every high and stormy gale,
My anchor holds within the veil.

His oath, His covenant, His blood
Support me in the whelming flood;
When all around my soul gives way,
He then is all my hope and stay.

When He shall come with trumpet sound,
Oh, may I then in Him be found;
Dressed in His righteousness alone,
Faultless to stand before the throne.

On Christ, the solid Rock, I stand;
All other ground is sinking sand,
All other ground is sinking sand.