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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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#CaregiverStrong

Being a caregiver to your spouse is a unique position to be in. Often it means you give up the hopes and dreams you had together. In my case, it also meant I stopped dreaming about my own goals and dreams. My entire focus has become Mike’s health and well being. I noticed this happen little by little…

“I will sleep in the hospital because he is too confused to be alone.”

“I will take a break from working.”

“I will cut up his food because he can’t figure out utensils.”

“I will shower him because he’s uncomfortable letting anyone else do it.”

“He has a hard time separating reality and television, so I will keep the tv off.”

“He needs to sleep, so I will keep it quiet.”

“He is in the bedroom resting, so I will just pull some clothes out of the clean laundry.”

“Loud noises are hard, so we won’t go to restaurants or crowded areas.”

Ultimately it turns into “No one can ease his anxiety or care for him as well as I can, so I will stay home.”

…Am I right? This is a common theme among caregivers.

Caregiver pamphlets always have elderly people on them. Has anyone else noticed that? There is a whole community of us that are younger and are facing struggles that no one can imagine.

There is so much life to be lived. You can still live fully alive, even while devoting your life to someone else.

Don’t. Give. Up.

More to come on this subject.

Just know you aren’t alone. #caregiverstrong

 

 

 

 

 


Worth it

I’ve been grieving for over 6 years, only my grief is very different than anyone else’s that I know. I have too many widow friends to count. When their heart breaks, mine aches and chips away with each one. Because I continue to support patients and spouses in the brain cancer community, I continue to love and lose.

The grief I’m talking about though is for my life. I know I have a lot to be thankful for. I know I’m blessed. But I lost my husband and marriage in many ways.  The kids lost their Dad in many ways. It’s  heart wrenching to see Kenzie wish her Dad could do the things that other Dads do.

Our marriage has evolved into something very different. Being totally transparent, Mike and I were already in marriage counseling when he was diagnosed. We had good times and bad times, but everyone who knew us knows we had a turbulent marriage. But even so, our marriage was our normal. It was our choice. We made a conscious decision every day to choose each other. Even though we struggled, we had hope for our future. We had plans for our future. We had things we could work on, things we could improve. And we were excited at the possibilities!  There was an excitement for the future! We started traveling. We took a beach weekend getaway, a random weekend in San Francisco, I went with him to Hawaii on a business trip for a week. We had just started deeply focusing on us and taking the extra time and effort to invest in our marriage.

And then one day, everything changed. We went into survival mode. We had to walk each day out not knowing how to even plan for the next.

I lost my husband in many ways very quickly after diagnosis in June 2012. His loved ones lost many pieces of him as the brain tumor and treatment slowly took away his ability to run, play, reason and think in many ways. He didn’t have much common sense, but he was SO smart. 😉 I miss having conversations that he could follow. I miss connecting. I miss him being the head of the household. I miss bouncing ideas off of him. I miss him doing the homeowner repairs, yard work, taking the trash out. I miss him working and stopping by the store on his way home. I miss him coaching our childrens soccer team. I miss his crazy entrepreneur ideas like buying land and canoes and running a business in the mountains and front porch rocking. I miss family vacations. I could go on and on.

We gained a lot too. He still is witty and has his sense of humor. He appreciates and loves deeper than ever. He has a level of compassion deeper than before. (He was compassionate before too.)  He is so kind. He is gentle. (Except when his anxiety and confusion is out of control)

So touching on grief, I’ve been working hard on healthy healing. I want to fuel my body with healthy foods that will nourish my body. I am working on exercise. It’s been quite an experience realizing my strengths, weaknesses and habits. It’s hard to make time to take care of myself. I make sure everyone else is taken care of: but taking care of myself has proven to be a huge challenge. Challenge accepted.

I even started an accountability and support group on Facebook for friends who also want to work on their health.   I did this to hold myself accountable and to help others achieve their goals through accountability and support. I thrive off of the thought of inspiring and motivating others. I might not care about myself enough to exercise, but if my exercise will get someone else motivated to get out and move, I’m more likely to get it done.

I’m not even sure if I stayed on track with this blog post, but I’m posting it anyways.

Thank you for being there and for the prayers, love and support.

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A fall, Vacation, & a Wedding!

This post is going to be all over the place because my brain is all over the place. We planned a vacation to the Outer Banks months ago and I decided on a house with a pool so that the kids could have entertainment at the house and opted against an elevator to save money. So much changed in the months since the house was reserved. The night before we were to leave we were going to have family photos done. Mike was resting on the couch under the photos she took of us 6 years ago two days before his brain surgery so I snapped this photo of him resting. F8B088F3-DD83-40D7-86EC-3F4DF634F3F7 (1)

Before we even started the family photos, Mike fell. Sharon took a few photos with permission and posted about it here on her facebook photography page. Please take a moment to head over to the link and check it out. 37025591_10156351903053405_4841967523295395840_n

The above photo was taken by Sharon Elizabeth Photography. She is amazing. I can’t even tell you how big her heart is.

We were in the ER until 2am. It was a horrible experience.2E63D4BF-6A43-47F5-8CD0-DCEDD80EB6FA.jpeg

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Mike’s whole body was shaking in pain and after nothing was seen on the xray and CT scan, they sent us home before he could even put weight on his leg. He had dilaudid, fentanyl, percocet, another dose of fentanyl…and was STILL. IN. PAIN.  And they sent us home. They didn’t even help us to the vehicle.

We did have a few laughs in the experience anyways…I wasn’t going to attempt to put his jeans back on him while he was in pain so I looked at my best friend standing next to his hospital bed and said “Can you go in the bathroom and try Mike’s jeans on so he can wear your leggings?”  She did! I had to snap this photo at 2am as we got him home and into bed.5E2E8B57-B892-428A-85A7-3D4DFAFA6FA0.jpeg

Like I said, this post is all over the place. The morning of his fall I pulled the walker out because for weeks he was becoming less and less steady. After the fall it was even worse. I figured if he was going to recover in bed, he might as well do it in a beautiful house on vacation that we already paid for. We got home from the ER and got to bed finally around 3:30am. The plan of leaving at 6am was already not happening. I wondered if we were even going to be able to to at all. While in the ER I just knew his hip was broken again and assumed vacation was off. But we made it there.  It ended up not being restful at all. He was very restless and anxious. He wasn’t able to be left unattended. He didn’t sleep well and was in pain. There were good moments but it was a very hard week. The last night there he was out of bed about 15 times. Each time he tried to stand someone had to be at his side to make sure he didn’t fall. He had one fall there and I had to go get my brother in law out of bed to help me lift him back up. The week was so hard. E5EFAC66-E0B8-4BD9-A16D-D96415EB8C74.jpeg

If your loved one needs assistance walking and you don’t have a gait belt, get one! I don’t think we could have gotten him down the stairs without one. We got him up the stairs to his bedroom the first day of vacation and then took him down the last day.

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I had moments of frustration that this vacation went all wrong and was nothing like I planned. BUT we did end the week with a beautiful day and occasion. Kayla got married!! We attempted her Dad walking her down the “aisle” with no walker but then he had to be the one walked down the aisle, but as you can see Kayla was just as happy that her Dad was able to give her away.

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Even at the wedding, we still didn’t get a family photo and I was only in one photo. It’s been a crazy couple of weeks.

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I will honestly tell you that I have felt overwhelmed and exhausted and have hid in the bathroom many times to cry. It’s hard to portray the truth of life on social media. I can post pretty pictures all day long – those moments ARE moments of truth – but there is also so much going on that is heartbreaking and hard to handle. I hope this blog post shows the wide array of life as it is.

I hope this post shows you that there can be joy and sorrow simultaneously. Neither one takes away from the other. They are simply able to be experienced parallel to each other.

 


Featured Blog Post – Dustin

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Rebecca was amazing to sit down and write out a blog post to share how Glioblastoma has affected her life. I almost typed “her story” but there is no way to put “your story” into one blog post. I know she has so much more to share.  I’ve cried so many tears over people I’ve never even met since Mike was diagnosed with Glioblastoma and Dustin and Rebecca made a huge impact on me. As I look through these photos, the tears are flowing again. Rebecca, thank you so much for taking the time to share. I know others need to hear your voice and to know they aren’t alone.

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In Rebecca’s words…
“As I sit here with tears welling up in my eyes as I watch my baby boy graduate from kindergarten, my heart is so full of emotions. The moment is bittersweet. He’s grown up so much in the last few years and he’s looking and acting more and more like his daddy each day. His daddy should be here though. Dustin should be here proudly watching his son walk across the stage from Kindergarten to first grade, but he’s not. GBM took this all away from him. GBM robbed Dustin of all the experiences and proud moments of fatherhood, and GBM robbed Michael of a normal childhood growing up with his daddy proudly looking on. It’s hard to believe it’s been almost 5 years now since Dustin succumbed to that horrible beast. As you can see, the havoc it wreaked on our little family continues on to this day and will for our lifetime ahead. The pain and wounds may ease a little with time but the scars remain embedded in us forever. In what are supposed to be happy, beautiful moments in life like our son’s kindergarten graduation, these wounds reopen and become fresh scars that weep. The most memorable happy moments in life are also now some of the most bittersweet.
Becoming a widow from GBM at the age of 29 gives you a whole new perspective on life that most people never receive until late in life. I would never wish the GBM nightmare we went through on my own worst enemy, but I do wish others could have the perspective I have now.
When Dustin was diagnosed in late November of 2012, our son Michael was only 8 months old at the time. Dustin passed away just 8 months later, barely getting to see Michael complete his first year of life. The amount of suffering Dustin endured was immeasurable. I can only liken it to Jesus’ suffering on the cross. The tumors, the surgeries, the endless chemo and radiation treatments, the grueling hours of physical therapy, and the side effects from the countless medications all took their toll on him. He fought so hard to no avail, and to think he was a healthy elite athlete prior to GBM entering his life. In fact, he had run an ultramarathon (74 miles in 24 hours!!) just 2 months prior to his diagnosis. He was the epitome of excellent health and only 28 years young. GBM shows no mercy and knows no boundaries. It can send the healthiest, youngest and full of life people into heaven way before their time. Dustin wanted so badly for it to be in God’s plan for him to survive through this nightmare. To beat the beast. To watch his son grow up one day. We’ll never understand why it wasn’t. Dustin’s suffering touched so many lives though, and to this day I still receive messages from strangers telling me how much his suffering and story changed their lives. I like to think God used Dustin’s suffering to help others who needed to be woken up to Christ in their own lives. This is the peace I hold onto in making sense of it all.
I’m a changed person from this horrific journey we were forced to partake in. I have learned so much about myself and about life. Life is so short. In an instant life can change forever. You gotta live in the moment and have no regrets. It’s sooo important not to take a single day we’re given for granted, because tomorrow is never promised. In an instant GBM came in and plucked my husband, our home, our jobs, our life as we knew it. It left me widowed with a 16 month old baby to care for and no direction to go. I felt like a stranger in my own life. How could I possibly go on without my other half – the person I loved more than anything and who loved me more than anything, who when anything and everything went wrong in life, was always there to help lift me up. How?? How would I do this? Life seemed impossible now. When Dustin died I felt like I died with him. Or maybe it was because I wanted to die too. My heart literally felt like it was ripped out of my chest and was bleeding my tears. I now understand how people can die from a broken heart. Dustin and I had shared almost half our lives together. How could this be it? How could I be expected to do this alone now? And how could I possibly raise our precious baby Michael all by myself?? WHY?? Why did this have to be this way?? Life is so unfair sometimes.
I could’ve given up. I could’ve allowed GBM to indirectly take my life too. I’ll admit it, I wanted to give up. Grief can make you crazy and make you do crazy things. I probably hit my lowest of lows at that time, but hey, wouldn’t you too? But something kept me going. If it weren’t for my baby Michael, I wouldn’t have had a reason to get up in the mornings. He played a big role in my saving grace. But the biggest role was played by the big man upstairs.
On Halloween night about a month prior to Dustin’s diagnosis, we took little Michael to a trunk or treat Halloween event at a local church. There we received a tiny fortune cookie and in it was a Bible verse. “Trust in the Lord with all your heart” was written on that tiny little piece of paper. There was no way of foreseeing what would happen in the coming months and little did I know the role that little fortune cookie would play in my life shortly thereafter and for the rest of my life. I took a photo and hung the fortune on the fridge that night not really even knowing why. It just resonated with me for some reason.
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(This verse actually is from Proverbs 3:5)
The day Dustin was diagnosed I bawled my eyes out staring at that same little piece of paper. Somehow I knew God put it there just for me. I took it off the fridge and placed it in my wallet where I still have it to this day. It became, and still is, my lifeline to God. Throughout Dustin’s GBM battle I held onto that Bible verse with every ounce of faith I had. I nearly screamed in helpless frustration on a daily basis. A few times I yelled at God for making us suffer this way, begging for his mercy. The mercy I was looking for never came, but instead He kept directing me back to that bible verse and amazingly it strengthened me. One night as I wept next to Dustin’s hospital bed, I remember feeling that I had lost all sense of control. I realized that I was powerless over everything and I couldn’t fix Dustin or the situation. It was the most awful feeling I had ever had up until that point. I remember yelling and pounding my fists on the chair at God to give me something, anything. I suddenly realized He already had. He gave me that verse — Trust in the Lord with all your heart. I suddenly realized I wasn’t completely powerless. God gave me the strength and power to turn it all over to Him and place all my worries, fears, anxieties, all of it to Him. In doing so, I realized there was one thing I COULD control and that was my attitude. I could be resentful, angry, miserable, and sad, OR I could give it all to God and be hopeful and focus on the positives, however little they might’ve been. From that day on, I promised myself and the Lord that I would place my trust in Him and let Him take care of the rest. My burden was immediately lifted. It’s amazing the power God has in your life if you let Him in.
It’s all about casting your cares on the Lord. Without God in my life, I know for certain I would not have been able to withstand the storms that GBM threw at my family, and I know for certain I would not still be here today. I couldn’t have trudged through hell without God carrying me through. He gave me light in my darkness, and I chose to see it. After Dustin died I decided to take Michael around the country running races while pushing him in the stroller to raise money and awareness for brain cancer in Dustin’s memory. We checked a few things off his bucket list too. I wanted to keep Dustin’s spirit alive and I ran with Dustin’s running shoes in the bottom of the stroller so he could be with us the entire way. I ran and still do, because I can. I owe it to Dustin, Michael, and to myself.
I’ll never understand why GBM took Dustin away from all of us so soon and what the purpose was in God’s plan. But I do know that when you trust in the Lord and give it all to Him, he will lead you wherever you are supposed to be. We all have a purpose.
It’s been almost 2 years now since I married Jeff, a wonderful loving man whom God brought into mine and Michael’s life with a purpose. Michael is now a big brother to his little sister Kaia Grace, whom he adores.
Because I trusted the Lord, I was able to open my heart to love and be loved again. Out of the ashes, God has created something beautiful. The heartache of losing Dustin will never end, and I will deal with this heartache as long as I live. It certainly hasn’t nor will it ever be easy. But the beauty of it all is God gives us endless capacities to love and be loved. As I watched Michael, who is now 6 years old graduating from Kindergarten, I can’t help but smile too amongst my showers of tears. Although his angel daddy Dustin is not here physically to witness this memorable milestone in Michael’s life, not only is he always protecting and watching over him from the heavens but he’s so very proud of him. Additionally, Michael is blessed with a second daddy to love him and be loved by him. His earthly daddy Jeff will be there as a father to catch him when he falls, and help guide him through the good, the bad, and beautiful moments of life. I couldn’t be more grateful. It isn’t the ideal life or scenario, and certainly not what I had imagined for our life, but nonetheless I choose to be thankful instead of bitter for every chapter in my book of life, and I’m grateful for all the blessings He’s bestowed on us. The scars of losing Dustin will always run deep, for once you’ve loved and been loved by someone, that love always remains. However, I know for certainty that he is ultimately in the place we all want to be in the end — with our Lord and Savior Jesus Christ — and someday God will reunite us all again. Until then though, we must trust in the Lord with all our hearts and continue to live life to the fullest each and every day, no matter how tough it may be.”

The struggle in hopes and dreams

It drives me absolutely crazy that I don’t know what my future holds, that I can’t have a plan, that I can’t even really hope for anything specific. What is my future going to look like? Am I going to be a caregiver for a long long time? Am I going to face even more pain and loss? Can I even focus on me and have dreams and hopes of my own or does that overfill my plate too much and take away from the most important job I have right now of being the head of my household? Am I to be still in this season? I don’t think so. I’ve been still for so long. Am I to step out and do more? I think so. How is that even possible? That’s the part I take day to day.

Yesterday was a wild day and I had evening plans to do the live streaming for church. Mike kept wandering off away from the house. I was in the bathroom for a few minutes and things got silent so I rushed out just in time to see Caralyn and Mike outside near the lake. He had opened the door for her not realizing you don’t just open a door and let a toddler to run out. As soon as he realized she was leaving he tried to go after her but he is unsteady. Yesterday was a highly anxious and agitated kind of day for Mike. He wasn’t content with anything and repeated a loop of anxious questions all day. “Is my Dad ok? Do we make money? Where’s my wallet? Where are the kids? The baby needs you.” Is what I heard all day. (Caralyn didn’t need me. He was terrified she was going to get hurt even just sitting and watch tv.) Good enjoyable moments at home for him seem to be few and far between.

Kenzie had to go to the doctor yesterday and I left him alone for an hour thinking he’d sleep through it. A neighbor caught him wandering away and went it and took him back into the house.

I want to do so much for others but I try to keep my commitments to people who allow me to be flexible. I work with people who I know I can call and say “I’m sorry, I tried but I just can’t leave my house right now.” For a long time and often still, I let the full plate determine my plans. I see that I can’t fit any more on my plate, so I don’t even try….but when I keep moving forward, sometimes just enough is cleared from my plate for me to fill it with the next thing.

Yesterday was completely insane until the moment I walked out the door. Even 10 minutes before I was like “How is this even going to work?” I just kept moving forward in faith that I’d walk out that door, and it worked. I walked out the door and was only 2 minutes later than I planned.


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