In Loving Memory
Two smiling eyes stopped smiling
a golden heart stood still.
We don’t know why God took you
and I guess we never will.
He only lent you to us
then came and took you away.
I miss and love you so much
and my heart’s heavy today.
Your presence we miss, Your memory we treasure,
Loving you always, Forgetting you never,
Mom and Dad, JoAnn, Justin, Jana, Jodi & Janessa
(Poem from all great quotes website)
March is brain injury awareness month shown by a green ribbon.
I find it ironic that March is also when our family suffered three TBI’s, from mild to severe, all unique, all different; as I read in one of our online support groups, “If you’ve seen one brain injury, you’ve seen one brain injury”. The injury, healing and after-effects are unique to that one brain injury. To me it is so amazing that both Jana and my brain injury were both classified as severe yet how different the outcomes were and are. I’ve been told a little too often “but you look so good”. Well some days, looks can be very deceiving. And green-to me green stands for life but in one sense life for me ended that night, the life I knew anyway. I have needed to learn how to cope with the new life I’ve been given and learning new things after a brain injury is often more difficult and needs more repetition.
I looked over the post I wrote almost two years ago about living with a brain injury and there are some things still the same, some things have improved or else I’ve gotten used to it or maybe I’ve adjusted and don’t expect as much of myself as I did. Yes, my brain still aches at times, especially after crying, although I believe with my diet change I have really reduced the severity and frequency of the headaches. The fogginess is better as well. I still have that buzzy, ringing, weird noise in my head, so I listen a lot to Pandora on my phone. Big crowds still very much overwhelm me and if I don’t have someone to focus on I allow myself to “space out” so I don’t go on overload- cause my reactions aren’t pretty to see. (Just ask my children) I still don’t multitask well. I still forget so much stuff!! But I have discovered a wonderful thing on my phone- called a calendar that can alert me when its time to do things- like turn on the oven so we can have supper on time. It also tells me when to do laundry but you’d think I could remember that if I want clean clothes I need to actually, uh like, start the washer. 😲 Thankfully not all days are as bad as that. But I do question and wonder, “What will my little girls learn or need to un-learn or re-learn because of my brain injury?” and I often ask God to protect their young hearts from being too scarred as a result of my limitations and issues. I have learned it helps a lot to be very open about my responses, reactions and struggles and to talk about their feelings.
I have found several online support groups where I can ask questions and talk with others who have experienced a brain injury, as well as hearing from other caregivers that also post helpful articles. It was through these groups that I learned listening to music is very therapeutic and healing to the brain as well as doing a craft or hobby. They are also stress relieving and stress is very hard on a person with a brain injury. I was excited to realize I remembered how to crochet and one of our neighbors asked if I would crochet a blanket out of some yarn they were given and I did. Reading is another very good activity for the brain and for me a paper version of a book works better than a screen version and I guess that’s because I was hit on the back of the head which is the part of your brain where your vision is controlled. On especially bright sunny days I will see floaty or sparkly things flying in front of my eyes. I will often get a head ache as well. Sunglasses have become my friend on our walks to the library or whenever I spend time outside. Another thing I learned is that our brains only heal when we sleep, which is one reason people sleep a lot when they have a concussion. But getting to sleep is one of my biggest challenges; it would be nice to be sleeping before midnight but too often I see midnight. The other thing I learned was I need to try to remember to look ahead when making plans so I don’t try to do too much. I have scheduled an hour of free time each day and over JoAnn’s surgery I realized again just how necessary that time is for me; time for me to rest, to sit back and drink a cup of tea or coffee. I read this article from the But You Don’t look Sick website to my family about “spoons” and it helped me explain to my family how I need to plan how to spend my energy. So I get asked, “Mom do you have enough spoons to do…?” Or I’ll be like, “girls the spoons are getting very low, I need your help or I need you to be extra quiet.”
I admit I still question, “Why did God allow our family to have two severe brain injuries to live through? How can He be honored and glorified when it feels like my life is messy and chaotic and my responses are not always Christ-like?” I have more questions than answers but one thing I do know is that 2 Corinthians 12:10b is very true, “For when I am weak, than I am strong.” In accepting my weakness and learning to live with my limitations, I have become aware of a strength, (sometimes it’s physical strength to continue to the end of the day, sometimes it’s a mental strength to say “No, I can’t do that”) a confidence to continue living an abundant life even while experiencing pain; physical pain from the injuries of our accident, emotional pain of missing my smiling, cheerful little girl, as well learning how to best care for a disabled child. Even while experiencing shattered dreams and living in the tension of longing for another world while living in this one. Papa God is so good. This song Even If by Kutless is my desire, my prayer…
Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come
Our Wedding Day
Our eyes are full of stars, and our hearts full of dreams and our brains think they know how to make this thing called marriage work – – I mean we both love each other — how hard can marriage be?….
10 Years later…
The stars and dreams are not as bright and vibrant and the brain is beginning to wonder if knowledge is enough to have a good marriage?? But it has a stubborn/hardened streak – – If I just do the right things: like reading the Bible everyday, praying more, being more patient and kind, going to church more, then surely somehow, doing the right things will make a good marriage….
20 Years Later….
The stars have burned out, the dreams died and the brain is numb and doesn’t know anything anymore…. All the good I’d done didn’t help me when I found out about my husband’s infidelity, when I discovered his secret sin. We were in the process of losing our house to bankruptcy and foreclosure. Could life get any worse??? I started questioning God and everything I thought I knew about Him. As a last chance to save our marriage and to find out who God really was; I took the Core and Lab 1 classes at Life ministries. I promised myself to give it all I had, to be as nakedly honest and real with myself, my heart and God as I knew how to be and I found out- – There is a very loving Father God!!
And a month after our 21st anniversary life did get worse – much more than I could have ever imagined. I now know why the divorce rate is so high after the death of a child (80-90% within 10 years) and after a disabled child (25%) and after a traumatic brain injury (25%). Statistically our marriage didn’t have a chance to survive. And had I not met God during our classes at Life Ministries…..it might not have survived.
25 Years Later…
The stars are starting to twinkle again and dreams are staring to shimmer again – the brain stills feels it knows less than it ever did but my heart has experienced God in ways I have trouble finding words to describe – I’ve experienced such an awesome God, my heart quivers and trembles, there are no words – just here I am God. I’ve experienced such a kind, gentle, loving Papa God, my heart rests and says “This is the Daddy I’ve always longed for.” So if its possible I’m more excited about the next 25 years than I was on our wedding day. And I think its because I – well Casting Crowns says it perfectly..
Is there room in your heart
Is there room in your heart
Is there room in your heart
For God to write His story
You can come as you are
But it may set you apart
When you make room in your heart
And trade your dreams for His glory
Make room in your heart
Make room in your heart
And this song also encourages me that because of our brokenness, our marriage actually has a pretty good survival rate.
“The only way we’ll last forever is broken together.”
I’ve put the updates here that I had sent out via text to our family as well as some of my thoughts as I’m processing this journey.
February 23, 2018 We’re here with JoAnn. She slept well last night. Her pain is a little less than yesterday but she also had a reaction to the one kind of pain medication. So they have to find a different one cause she can’t come home on morphine. She had a rash as well as a bit of a fever. They weren’t sure if the fever was from the meds or because of the surgery.
And we just talked to the doc. He is very happy with the MRI results and feels like he got 99% of the enhanced area. He wants another MRI done in 3 months when surgery after effects are gone. The cysts were over the ventricle area which is were the spinal fluid is made that surrounds the brain and spinal cord. Because of surgery there is some open areas causing swelling and in time it should reduce and the ventricles close up. If not a shunt will need to be put in. So please pray that the swelling goes done and the ventricles close correctly. She has 26 staples in her incision which will come out in 2 weeks. The doc is not ready to send her home today possibly tomorrow.
February 24, 2018 We’re with JoAnn again. Her pain is better but she has more facial swelling and she’s still rather weak and tired. The nurse said the doc did not put a discharge order in and when she heard JoAnn’s got to go to the 3rd floor at home, she agreed with us that it might be better to keep her another day. So if you could pray for the facial swelling to go down and strength to build up. Thanks for praying.
February 25, 2018 We found JoAnn, 😏 they moved her twice since we were there last night. 😲She had a fairly good night’s rest despite the move in the middle of the night. We were told she could go home. The nurse got all the paperwork and discharge instructions and she got dressed and we are headed home now. Her facial swelling doesn’t seem to be as much as it had although both eyes are a bit swollen instead of just one like yesterday but her forehead isn’t as swollen either. Please continue praying for healing and thanks so much for your prayers.
We are home now and I think she is resting well; it’s hard for little sisters to play quietly especially when they are so excited to have big sister home again. We do have an appointment for the staples to be removed, as well as a check-up in about 2 weeks; as well as needing to schedule another MRI in about 3 months to see what that enhanced area is doing to know what to do from here. Thank you for continuing to pray for us through this journey. As I was processing my emotions the past couple of weeks through all the uncertainty of brain surgery. I had this very real fear that it might not possibly turn out like we hope. (So much so that we did some paperwork taking care of JoAnn’s financial and medical needs if things don’t turn out well.) And it sure didn’t help the early morning check-in paperwork listing all kinds of risks: seizures, coma, along with lots of others, even death. And then the doc says, “And for you, since this is your second surgery, that increases the risks a bit more”. Oh!! be still my heart remember… remember the message of the cardinal. And then to see the cardinal painting in the surgical waiting room. How awesome is our God!! There is no doubt in my heart that Papa God is good and is for me and He is quite okay with my emotions and feelings my heart experiences in these hard, difficult and painful places and times. But what do I do with them, Do I face the pain head-on or do I seek relief? Do I put trust in that paperwork we did or do I choose to trust His heart?
I very much identified with this song “Whatever You’re Doing” by Sanctus Real
Whatever you’re doing inside of me
It feels like chaos somehow there’s peace
It’s hard to surrender to what I can’t see
but I’m giving in to something heavenly
We talked with her surgeon and he was pleased with how everything went. They took out a softball sized cluster of cysts and as much of an avocado seed sized enhanced area as they safely could. This enhanced area is what causes the cysts to grow. He also ordered another MRI to check for bleeding which is routine and also to better tell how much of this enhanced area is still there. She is in a fair amount of pain it seems at the moment and is very drowsy but otherwise is doing well. Thank you so much for your prayers.
This is part of the one painting I saw hanging in the surgical waiting area. I was surprised but I really shouldn’t have been, God is so much more than we can even begin to imagine. And I couldn’t help but remember seeing the real cardinal in my city backyard and the message I heard that day. God is so good.
The doctor called and wants to do surgery as soon as can be planned due to the size of the tumor/cyst which increases the risk of seizures. So surgery is scheduled for February 22; quite a bit sooner than the game plan we had so neatly arranged in our minds. How does one process the tailspin news like this puts me on? I’m not sure, but… well actually, I’m pretty certain Papa God is more okay with my turmoil of feelings than I am. If I can manage my feelings, neatly arrange them, I have this totally wrong idea than I’ve got it under control, that I can handle life; but if I can handle life then I don’t really need God. Yet when it feels like I’m in a whirlwind, it makes me question, Where is God? Is life safe anymore? How am I even to make future plans when this life keeps throwing me curve-balls and messing up my neatly arranged plans? And I begin to question the goodness of God which shows just how human I am… I just went to make supper and I saw a beautiful red cardinal enjoying the seeds from the bird feeder. I had not yet seen a cardinal at our feeder here in the city. I felt God saying, “See I do care about you. I am here for you. I am for you and not against you.” “Thank you, Papa God.” I was filled with a wonderful feeling of peace and comfort that even though I don’t know the outcome, God does and He can and will handle this whole thing. I just have to be willing to trust Him.
I keep listening to this song by Matthew West and am reassured once again that I don’t have to do it alone, God is more than willing to do it with me.
Prayer requests:
~ That God would guide the doctor’s hands as he does the surgery.
~ That everyone would stay healthy, especially JoAnn over the next several weeks.
~ That JoAnn would feel God’s peace over the next weeks and that recovery would go well.
~ That JoAnn’s siblings could have peace and comfort; some have been a little high-strung the last few days.
~ That God would be glorified and honored through this experience.
Thank you!
Is there a difference between experiencing anger and being an angry person? In my opinion there is. And I think Jesus showed us there was and granted His responses were perfect. He experienced and responded to the anger He felt when the people made His Father’s house a den of thieves instead of a house of prayer. But when falsely accused at His trial He did not respond in anger. He was not an angry person; He knew Who He was and Whose He was. He knew where He came from and where He was going to. He had a vital connection to His Father, a connection we need as well and should strive for.
I believe too often we become angry people because we do not allow ourselves to feel, to experience and process our emotions or when we stuff our feelings. A person who is easily offended is an angry person. I believe if my first response to things done against me is anger, especially minor things, like a driver cutting me off or my child spilling a glass of water; I’m an angry person and I need to look deeper into my heart. What other deeper pain have I not admitted and processed? What other emotions am I not allowing myself to feel? Anger is often a secondary emotion; there is something under that emotion. I’ve been there- I’ve been an angry person and when I looked below all that anger there was a deeply hurting heart. A heart that was stuffing and denying a lot of emotions. A heart that was dying piece by broken piece. I realized my heart felt insecure and afraid. I had been violated, taken advantage of and my world was not a safe place. I became an angry person to hide my hurting heart. Responding in anger felt safer, I felt stronger. Anger would keep people away. Who wants to be close to a prickly person? Yes, it’s in relationships we experience our deepest hurts but it’s also in relationships where we experience the greatest healing. And the most important relationship we can have is with Jesus. I very clearly remember the night I poured out my intense anger at God. I actually shook my fist in His face and told Him I think He’s being very unfair. He has no idea how painful my life has been and to lose a child to death was just the most awful excruciatingly painful thing He could have done to me. The words and anger just rolled and boiled out of my heart that night. And when I was spent, my heart emptier than it had been in a very long time; and yet through the anger, I felt in a very real sense the loving arms of God holding me and gently whispering to me, ‘Oh yes, I know the pain of your child dying. And all that other stuff I never wanted to happen; it was a result of the sin cursed, broken earth you live in right now.” And I never felt so loved and cared for as I did in that moment. I experienced Isaiah 42:3 “He will not crush the weakest reed or put out a flickering candle.” I never felt as loved as I did that dark night. I realized God is more concerned about me being honest and real with Him than He is about me doing everything right so I can make my way to heaven.
I don’t believe God wants us to be angry people but I do believe He wants us to get angry at sin yet choose to respond in a healthy good way. I believe He wants us to care for our hearts so they can be healthy. A healthy heart experiences and expresses a multitude of emotions and a redeemed healthy heart’s desire will be that its responses honor God. If I am godly- I will be like God- Love what He loves, hate what He hates, and get angry at what makes Him angry. Granted He will do it perfect and I will not but God knows my heart and the motives of it and His grace and mercy extends to my faltering efforts.
Update/Prayer Request: Joe and JoAnn were both back to Hershey for checkups. Joe is good for another year. But the tumor/cyst on JoAnn’s brain is enlarging/growing again. The doctor feels something should be done. But is it surgery, radiation or something else? Should it be done now or wait til she has more symptoms? The team of doctors was going to discuss her case this week sometime and hopefully come up with possible options. So it looks like we have some decisions to make. I’ve been feeling a bit fragile as I think of the possibility of brain surgery or whatever is decided. I know a whole lot more about how our brains work than I did 3 years ago when JoAnn had surgery done. I have more knowledge as to the possibilities of what could go wrong and the effects of that and part of me wishes I’d be a little more innocent of how much our life is impacted by how healthy and how well our brains work. Brain injury, whether traumatic or acquired, is a life changing, ongoing event. Also Jana has been back doing physical therapy again and her therapists have decided to try a brace for her left foot, as it was over compensating for her right foot, which would cause her to lose her balance and at times fall. Than you for your prayers.
Heaven is your home
As I weep and grieve
I remember the love and joy
That together we did weave.
Heaven is your home
Though it breaks my heart
It will not be forever
That we remain apart.
Heaven is your home
And when my time is done
I know that I will see you there
Shining brighter than the sun.
~ Tanya Lord ~ 2014 ~
My favorite Christmas song this year is “Heaven Everywhere” by Francesca Battistelli. I have always loved the Christmas season, although the past several Christmases have felt more painful than joyful yet there was still something about Christmas I was longing for and I think this song explains that longing- “there’s a little bit of heaven everywhere”. And somehow Christmas makes heaven seem just a bit closer, which makes you feel closer to us. Another song I love is “The Sweetest Gift” by Craig Aven the chorus of this song says it just right. And it’s knowing where you and Who you are with that makes all the hard, painful days or nights easier to live through. I thank God for that hope, that faith and His love.
You’re with the Son of God
You’re with the Prince of Peace
You’re with the One we’re celebrating
And that thought amazes me
Sometimes I still break down
Grieving that we’re apart
But the sweetest gift is knowing where you are
You’re with the Son of God
We painted our porch this fall. I wanted our front porch to be a spot of beauty and a place for people to rest as they wait for the bus; we have a bus stop right in front of our house.
So I started searching Pinterest for ideas for painted rugs and I found a couple but of course changed them a bit and we’re happy with the finished results even though it doesn’t quite match the picture I had in my mind. I had some interesting conversations with people as they strolled by or waited for the bus. I want to get some sort of wicker furniture yet for us to use but till I got the painting done I couldn’t find any available, but hopefully come spring we’ll be able to find something.
I wanted our names on the quilt and as I thought about our family’s story I knew God had to be in the center because He held us together through it all and then we were totally covered with Faith, Hope and Love. Although at times, it was someone else’s faith believing for us and someone else hoping for us and someone showing us God’s love, because in the darkest, hardest times I had no faith, hope and love or at least very little.
Thank you so much for having faith, hope and love for us when we didn’t have the strength to have it for ourselves. Thank you for praying for us.
I know that you’re in a better place
But I’m still here missing you today
It isn’t easy to say goodbye
But I know it’s only for a little while
Run up ahead and I will catch up
‘Cause I’m gonna see you when tomorrow comes
On the other side
On the other side
Some days that’s the only thing that gets us through…knowing we will meet again on the other side. I just wish it didn’t have to hurt so much or take so long to see your smiling face. I hope you have a wonderful heavenly birthday.