This summer we didn’t have near as many appointments as the last two summers so I decided it’s the year to do a few fun things. The girls made ice cream one warm day.
It tasted quite yummy and they didn’t get any salt in the ice cream.
Jodi baked a lots of goodies for us and we made “mud and worms pudding”, too. 🙂
Our neighbors’ whole family went away for an evening and they invited us to use their pool. It felt so good to be in the cool water after a hot day and Janessa was so delighted to be able to go in the deep part and not drown.
We did one of our yearly traditions and found caterpillars to grow and hatch.
A friend brought us a picnic lunch and I made our picnic table summer festive. It was fun and the food tasted so good. I think eating outside makes anything taste better.
Joe took the girls for pony rides. They were quite delighted.
We did some crafts, colored pictures and read a lot of books. I’m almost embarrassed to admit we read one whole Boxcar Children book in one day, but when I remember all the missed reading times over the last two years; I have decided its perfectly okay to do that. We painted sun-catchers, sewed felt kittens and simply enjoyed a relaxing summer. Even so Jennie was never far from my mind and heart. I think (or at least hope) I’m learning how to live with pain intermingling in with everything I do, everywhere I go. Yes, there are times the pain is so overwhelming and it slips down my cheeks as tears, and its also quite a challenge to live well in the tension of feeling pain and joy simultaneously.
Did you know being obedient to God’s leading can take you right into a battle, right into a storm? Here are a few more of my thoughts (hopefully they have not scattered too badly) from the Pursuit of the Promised Land Bible Study by Marie Monville.
For the Israelites to get into their promised land they needed to fight some battles, they had work to do, lots of hard work. They were following God’s command to Joshua to conquer and live in the land God had promised to Abraham. And also the disciples were told by Jesus to get into their boat and cross to the other side of the lake. And while they were still “far from land, a strong wind had risen and they were fighting heavy waves” Luke 14:22. Jesus knew that storm was going to come but yet He still told them to go to the other side of the lake. And the disciples obediently did as Jesus told them. I wonder what the disciples were thinking when they were in that storm. “Jesus told us to do this and now here we are in the middle of a storm, maybe we’ll drown! Why did Jesus tell us to go with the storm coming? Surely He knew what was coming. What was He thinking?”
The Israelites, like the disciples, were doing what Jesus told them to and what did they encounter? Battles, storms, and hard stuff. What am I to do with that? I follow God and end up in a storm? a battle? One thing I think God wants us to realize is that difficult circumstances do not mean that He is punishing us. Maybe like the Israelites needing to walk quietly around Jericho; God wants me to walk quietly with Him, to allow Him to fight the battle? Maybe He needs my quietness so He can speak into someone’s heart? Like maybe my very own heart? Maybe like the disciples, after trying their best to get to the other side of the lake and then being scared out of their wits by Jesus, they were ready to accept Jesus’ help; God is wanting me to give it my best and be willing to accept help.
Another thing I think God wants us to realize is that He often uses the “least likely” like Rahab, she was a prostitute but she hid Joshua’s spies and as long as she put the red cord in her window and stayed in her house she would be safe when they conquered Jericho. And Rahab also looked out for her family even though they may have looked down on her, held her life style against her. Rahab was a prostitute but God used her right where she was, living in sin. Even in our sin God is merciful with us. There were times as the Israelites were going into battle Joshua didn’t seek God’s leading, he went ahead and did it his way. And they ended up at places they never would have if they had only asked God first. But God came through and fought for them even though they were in a place they shouldn’t have been. They were in a wrong place because of the wrong choices they made but still God held the sun and moon in place till the battle was won. And I believe God wants to do the same for me- fight my battles but too often I’m afraid He’ll take me out instead of my enemy. Why is it so hard for me to believe that God is for me and not against me? Why is it so hard to trust that God is looking out for me? Maybe I need to learn to know who God really is, how God truly feels about me.
And I have a hard time believing Rahab continued her life as a prostitute after her encounter with God. When we have an encounter with God it very often changes us and maybe that is another reason God allows the storms, the battles- so our eyes, our hearts will open towards Him. So we can really know who we are and who God really is- – a good, good Father who loves and cares for us passionately and is longing to have a close, living relationship with us. For us to know He’s there dancing in the storm with us.
The fairy garden I made today in the workshop I attended at Ken’s Gardens.
I had been working on a different blog post but all those thoughts are scattered to the winds of grief. I thought I was finally getting a handle on this grieving thing. Yes, it hurts just as much if not more than it used to, but it seemed my emotions were stronger. I wasn’t crying as much, I felt calmer in my spirit. I was thinking “We will survive. We can make it.” But Sunday morning, they sang Jennie’s song at church and the dam broke again. I started crying and I haven’t stopped crying much since. Yes, at Grief Share we were told to prepare for the hard days, to be aware of the grief trigger points, the holidays, the anniversaries, etc. And sure there are some things you can think through and prepare yourself, but how was I to know they would sing that song? How could I prepare for that? I never saw it coming. I’m sure the song leader had no clue what memories that song would evoke, what feelings would be felt again. I feel like I’m back in those first weeks of intense pain and raw grief. And all the crying sure doesn’t improve the head ache issues. And my poor little girls don’t know quite what to do with me. One says, “Why are you crying? What’s wrong?” the other one hugs me and pats my arm and say, “It’ll be okay mommy.” Which only, of course, brings more tears. So need-less to say its been a rough couple of days. It’s been hard to see God and I keep asking, “God, where are you?” And I can’t feel anything but pain and I can’t see anything through the tears running down my face. But this song says it about right…
“Your love surrounds me in the eye of the storm.” “My only hope is to trust in You.”
As a prayer request and I don’t even know what to ask for but we are really struggling with things. A variety of things. All I will say is, I’m not the only one with a brain injury and each brain injury is very unique and causes unique side effects. So with three of us having brain injuries on differing levels and effects, it leaves us in an extremely overwhelming situation.
We enjoyed a wonderful family vacation. We rented a cabin for 10 days and didn’t do much but eat, sleep, play games and have fun. It was a very different schedule than the last two years have been. No Dr appointments, no therapy. Just relax and take it easy.
We enjoyed the hot tub.
We played games.
They went fishing.
I read quite a bit.
We had craft time.
We colored bow tie noodles with chalk paint and made butterflies and flowers out of them.
We enjoyed a camp fire and tried a new for us campfire food.
And through it all Jennie was never far from my mind. I know she would have loved it at the cabin as much as any of us, but she is enjoying heaven and I can’t help but think in some ways she was right there with us enjoying it too. We just see though a glass darkly.
In one of the movies we watched, a lady who had just been diagnosed with Multiple Sclerosis said, “We never know what life may throw at us, but I’ll be okay because God is my catcher.” And I just loved that thought of God catching me and holding me. But do I allow Him to “catch me”, to hold me or do I think I need to be strong, to hold up on my own? Do I choose to trust in His goodness even though my situation looks anything but good? Am I willing to “Be still and know that I am God”? At times it is so hard to trust, to believe, to just be held, but the times I do that are some of the sweetest, most beautiful moments this side of heaven.
Last night when I couldn’t sleep, I heard on the radio, “We were never meant to be enough. That is for God.” Isn’t that a wonderful, freeing thought? I don’t need to be enough- – for my hubby, my children, even myself. If I was, they/I wouldn’t need God. But I need to be humble enough to be willing to realize that- and there is the rub- if I’m not enough, then I’m not in control. Am I willing to live with my hands, my heart open? To allow them to struggle through life, allowing them to learn God is enough. What does it look like to allow them to struggle? Am I willing walk with them in the struggle, in their pain? How do I love them well? Can I be okay when they choose something different than I would have? Do I have compassion instead of a judgmental spirit for their brokenness, their hurt, and their issues? Do I believe God is enough for them, that He will take care of them?
There’s the other side of this too. If I’m not enough, then neither is my hubby, my children, you- – are not enough for me. They/you don’t have to be enough for me. God is enough. Do I believe that? Maybe a better question is, Do I live like I believe that God is enough? I struggled with writing that letter to my family. At times it’s so easy to hide, to make it look like we’re mostly okay. Looks can be so deceiving. But it was good for me to put words to what we/I live with. Yet it’s humbling, embarrassing to admit, to show my brokenness, my deficits, my issues. But if I keep it all behind the mask, how can you love me? How can you walk with me? How can I know God if I’m not willing to be honest, if I’m not willing to live with an open heart? And when you get to the place and you realize- God is all you have, you do find out and believe “GOD IS ENOUGH”. But in the middle of the battle it is so hard to remember, the war has already been won. It is hard to rest, to just be with God our Father. I want to fight. I want to win the battle. I want to be in control. And so I doubt that God is enough. I doubt that He can work this for my good. I doubt that He can make beauty out of ashes. That He can heal broken shattered dreams. That He can dance in the storm with me. But it was in my brokenness, in the middle of the night when there was no one there, God was there and God was enough. God heard my heart’s cry and He came in that quiet way gently wrapping His arms around me and holding me close. He was okay with me not being enough, with my brokenness because HE was enough.
Here is part of a letter that I sent to our families to put words to some of the things I deal with regularly. I still only have a few and faint memories of that first week after our accident. I used to think, “When I get back to normal, this will change or get better or go away.” I’ve come to the realization and acceptance (I hope) that I will always deal with some after affects from my brain injury. Yes, there has been a lot of healing and I am grateful for all the healing that has taken place. And in coming to an acceptance of my situation, it means I am willing to work with my limitations, my disabilities, and not beat myself up or feel like I am worth less than I was before.
Dear Family,
At the suggestion of our psychologist counselor, I will attempt to put words to what its like for me to live with a traumatic brain injury and what my family puts up with on a daily basis.
I want you to understand I’m not asking for pity or sympathy. The truth is, I’d rather not have your pity or sympathy, but what I would like is your compassion and grace. I don’t think you can even begin to understand, my dear hubby doesn’t and at times I think he must wonder, “Who is my wife? What has happened to her?” Our accident forever changed me and there are times I’m not sure who I have become. I see life very differently than I used to. I think differently than I used to. And as little sense as this may make to you- my head/mind feels differently than before.
So what’s it like to live with a brain injury? Well for starters how about always having your brain ache? Most days it’s just there in the background with everything I do, but there are times I get this sharp, stabbing shooting pain up the back of my head. I almost always hold my head as it feels it might pop open if I don’t. Then there are days when the head ache is so bad my vision gets blurry, I’m nauseous and dizzy. All I can do is lie down and hope everyone whispers and keeps the lights off.
The other thing is a noise in my head all. the. time. And I struggle to find words to explain this noise- – a sort of humming, static noise, like a radio that’s not quite tuned in or sometimes it’s a ringing sound. And during the day I usually don’t think about it as there is plenty of other noise and things and people that need my attention. But come bedtime when everyone else was asleep it used to drive me almost crazy- now I turn the music on and eventually drift off to sleep.
Then there are days when my mind feels like a dense foggy morning looks. And I just want to go back to “normal”. I feel very dull and I need you to repeat what you said as not a thing made sense to me. And on those kind of days or when I have a bad head ache I don’t remember things my husband or children tell me. They’ve taken to writing notes and things down for me.
Another thing that is difficult for me is to be in a group of people and it doesn’t have to be a big crowd. If two of the children are trying to talk to me at the same time, I go a little crazy and can’t hear anything either one said. Sunday mornings is especially bad. I can do okay with the sermon as long as we sit closer to the front so I don’t see as many people and I take notes and focus on the speaker, but Sunday school is more difficult especially if the class is larger and there’s lots of discussion. It takes so much energy to focus on listening what’s being said that by the time church is over I’m done, my brain just aches. And of course that’s when everyone starts talking and my ability to hear, to concentrate totally leaves.
I can no longer multitask very well. I have learned to plan my day and make blocks of time to do certain things and yes its all written out cause I wouldn’t remember what to do next. This is yet another problem for me- my memory. And I have had people tell me, “Its ok, I forget too.” Or “I have a bad memory, too.” Thanks for trying to sympathize but I’m sorry it’s not quite the same. Its more like I think I’m losing my mind or my ability to think to process and there appears to be no rhyme or reason when it will happen. My mind goes totally blank and I don’t remember what I was doing, where I was going or…..Here’s an example that happened recently: We were on our way to church, when all of a sudden sitting there I was thinking- “Where in the world are we going and why?” (Thankfully Joe was driving.) Yes, I was holding my Bible and notebook but that didn’t help. I snuck a look over at Joe and thought “he’s dressed up” and I looked at me again “so am I. Oh duh we are going to church. What is happening to me?” How can I forget we are on our way to church? I have no idea why it happens but it does and rather frequently.
As I said earlier I don’t want your pity. I’d appreciate your compassion and grace and a willingness to work with me. If you could email or write or text me the dates, times etc that I need to know about; it would make it easier for me to remember. And if I forget something you told me please don’t take it personal. It’s not that I have something against you. It’s only because my brain doesn’t work quite like it used too.
Two years ago today I came home from the hospital. When I look back over those two years, they have been the hardest two years of my life so far. I’m beginning to think, to realize when you brush against death’s door but don’t quite go through; it does something to you. It changes you forever. Life and its problems doesn’t look like it used too. I think of heaven A LOT more than I used to. I don’t hang onto stuff as much as I used to, stuff is to be used, people are to be enjoyed. I have a longing for God I didn’t know was possible. I have come to a much different view of God as my Father through all this struggle, pain and difficulty. I also see people differently than I used to; everyone has a battle they’re fighting in. So would I want to re-live those two years? Not in a million years! But in learning to dance in the storm, I have chosen to believe, to trust that God is taking this terrible, ugly, horrible, painful thing and making a beautiful. breath-taking, gorgeous something. And I can’t wait to go to heaven and see it with my family.
We have since 2004 every four years made look-alike dresses for Mother’s day. And this would again be our year for look-alikes, but I wasn’t sure I wanted to. Yes, part of me did, I love to sew and of course, who wouldn’t want a new dress. But there was one young girl who was always so excited about new dresses and taking our pictures and she isn’t here this year. I struggled with it: to do it, does that mean we’re moving on and leaving you behind, forgetting about you. To not do it, does that mean we haven’t accepted your death, our losses. This year it is different. It is again another first for us to live through. We talked about it and we decided to go ahead but we did add a twist to it. Our dresses aren’t exactly the same. Similar but not the same and it seemed to us that doing it this way this year was how we could honor Jennie. And of course I wore your angel pin in memory of you, Jennie dear. I think you’re having a great Mother’s Day in heaven with grandma.
Mother’s Day 2004
Mother’s Day 2008
Mother’s Day 2012
Mother’s Day 2016
And on other news, after a two week break from eye therapy and exercises, the eye doctor is very pleased with how Jana’s brain and eyes kept the info they learned through the therapy and exercises Jana had done. Now for the next several weeks she is to read at least one hour a day and then we go for a four week round of therapy and the doctor is thinking by then her eyes and brain will be working together again. But he does want to keep checking on her eyes every couple months. And her Occupational therapy is over for now too. This week she will learn some exercises to do at home. Her physical therapist is to have a baby in June so we will be taking a break from therapy while she is on maternity leave. The therapists want Jana to do exercises here at home while she is on a break. We are looking forward to a more restful summer. And I have a doctor appointment this week. I have really been struggling with some physical issues that past several months and please pray that the doctor will be willing to work with us on it. I am so ready for some answers. I’ve been doing a lot of researching and reading and have an idea as to what is going on, so I really hope the doc truly listens to what I’m trying to say.
~ Grief is a very lonely path. No one can feel my pain, no one can really understand because only I was Jennie’s mother but God can transcend all and He knows, He understands my pain.
~ Grief lasts longer than I realized. We never get done grieving, really; sometimes it’s quiet like a gentle rippling brook, other times it’s a raging river and we can’t see a thing through the tears streaming down our faces. But God says, “I will never leave you or forsake you.”
~ There are some people who appear to be uncomfortable when I cry. But God collects my tears in a bottle and that tells me, my tears are special to God.
~ Grieving is hard work. There are times I don’t feel like getting out of bed to face a new day of missing Jennie, Jana and even myself. But God says, “My grace is sufficient.”
~ There are some people who seem to be afraid of us, of our pain and I wonder if it’s because they feel helpless, they feel they can’t do anything to make it better, less painful for us. And it’s true, people can’t do anything, but couldn’t they just be there with us?
~ There are very few people (or I haven’t met them yet) who understand what it like to live with a traumatic brain injury. I feel bad for my dear hubby to live with two of us. And we may look like a typical grieving couple/family but quite frankly a brain injury affects all parts of your life and most people have no clue what our family deals with on a daily basis. And we’ve had people say, “At least, (which by the way are 2 words that should never be said to grieving people) Jana didn’t die.” But quite bluntly – It certainly seems much more painful than death would have been. Please don’t misunderstand me, hear what my heart is saying. I am thankful that I can still talk with Jana, see her smile and hear her laugh,etc. And I do believe she is alive for a reason, that God has great plans for her. But do you know how incredibly painful it is to see a beautiful young lady full of life and vigor now struggle and need to learn new ways to take care of daily needs such as dressing, combing hair, etc? Sure, Jana has come a long way and she does a lot on her own but she has worked hard and it’s been a long hard struggle. Have you any idea how it feels to be the “mean mom” and require your child to do her therapy? Especially when it feels like the therapy isn’t doing what you had hoped for and I’m tired of being strong, tired of fighting, tired of pain. Had Jana died, yes, it would be incredibly painful but I know she would be enjoying heaven with her sister and not struggling with living in a broken world. And not much hurts a parent more than when we can’t make it better for our child, whether it’s physical, emotional, mental or spiritual issues. And then I wonder, what kind of pain do I put God my Father through, when I choose my way or when I think I know best…?
~ There is grief and then there’s complicated and ongoing grief. That’s how at least our psychologist counselor explained it to me. When a child dies, its so out of the usual cycle or circle of life; we will, for the rest of our lives, remember and grieve what should have been and isn’t. There will be many “firsts” we have to live through. And then not only do we grieve the death of Jennie; we also grieve the death of the Jana we used to have, as well as the death of what I was. And at times it feels we are caught in the crossfire as we become aware of all the shattered dreams we have and how our world has been broken. But I am choosing to trust God, to believe He sees the whole picture and He is making all things beautiful even though to me is seems the most ugly, painful, messy time of my life.
~ God is so much more than I ever knew Him to be; more beautiful, more loving, more kind, and more gentle. But I wonder – Couldn’t I have come to know God better without going through this intense pain? Couldn’t there have been another way? Yet I want to choose to rest in God’s sovereignty, choose to believe in His redeeming love.
Little did we know that morning
God was going to call your name.
In life we loved you dearly,
in death we do the same.
It broke our hearts to lose you,
but you did not go alone.
For part of us went with you,
the day God called you home.
You left us peaceful memories,
your love is still our guide.
And though we cannot see you,
you are always by our side.
Our family chain is broken
and nothing seems the same.
But as God calls us one by one,
the chain will link again.
The moment that you died
my heart was torn in two,
one side filled with heartache,
the other died with you.
I often lie awake at night,
when the world is fast asleep,
and take a walk down memory lane,
with tears upon my cheeks.
Remembering you is easy,
I do it everyday,
but missing you is heartache
that never goes away.
I hold you tightly within my heart
and there you will remain.
Your presence we miss, Your memory we treasure,
Loving you always, Forgetting you never,
Mom and Dad, JoAnn, Justin, Jana, Jodi & Janessa
(Poems from FransCandles website, Authors not listed)
The month of February I took part in a Girlfriends Bible Study at Victory Church. The class was entitled “Pursuit of the Promised Land” taught by Marie Monville. This was the little blurb I saw on FaceBook that pulled me in: “Do you feel like life brings more problems than you anticipated? (Yes, way more.) Are you waiting for that moment when everything finally works out perfectly? (I’ve given up on that.) Do you wonder what your circumstances say about God and your relationship with Him? (All the time.) Join us as we look at the life of Joshua and his pursuit of the Promised Land. We will study the experiences of the Israelites and the battles they fought. We will see God’s love and faithfulness in the midst of their difficulties and find ourselves written upon each page. (Ummm- I will see me (and God) in their story?) So here are some of my thoughts from that Bible study, with more to come, hopefully. It was time and money well spent.
Marie opened the Bible study saying she “allowed the Lord to marinate in her heart the story of Joshua for about a year.” I loved that word picture- marinate- allowing my heart to sit in God’s Word, to meditate, to allow it to soak in. And what happens to marinated meat? It gets tender and tasty. I want to allow my heart to be tender, soft, sensitive.
The Israelites needed to cross the Jordan River to enter the Promised Land but they could not cross the river alone. It was at flood stage; it was a full raging river. I can see myself in that part of the story. It feels like we’ve been asked to cross a river at flood stage or maybe more accurately we’ve been dropped into a river.
But the priests did have to be brave and have faith. They had to step into the water first then wait on God. And God parted the waters and they walked through on DRY land- not wet, not even damp, the Bible says “dry land”- How amazing is that?! I too, have to take that first step into the water or maybe since I’m in the river, it’s about turning my heart towards my Father; being willing to reach out for Him, then rest in Him. That’s what the priests did, stepped into the river and waited for God and God came through and gave them dry land to walk on. How is God wanting to come through for me and am I willing to allow Him to come through or do I think I need to do this on my own? What might God want to do for me, today? What might it look like for me to walk on dry land? God also calls us to a place of boldness not arrogance. How might God be asking me to be bold, brave? God may allow a huge totally overwhelming situation to come into my life (and He did) but He also has a plan how to help me through it. Yet too often I take my eyes and heart off of Him and see the raging flooded river (the many losses and deep pain) and I feel like I’m drowning. But like Peter all I need to do is to call out to my Father. He is more than willing to carry me through the storm, to be my “peace in the troubled sea”. Isaiah 43: 2 & 3 says, “When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you. For I am the Lord, your God,
the Holy One of Israel, your Savior.” That’s a very comforting thought, God is in the raging river with me. I also need to remember- this is not about me, its about God and Him getting glory and honor; my story is not the focal point, my story is part of God’s bigger story.
On other news, the eye doctor is very pleased with how Jana’s eyes are progressing. We’ve done eye therapy six weeks now and still have another six weeks to go and then he will do another exam and make a care plan off of those findings. We had her to Hershey for more BOTOX shots. It sure helps to keep her right arm and hand more relaxed. And the Saebo Splint therapy for her right arm and hand is reaching its six month trail period and her one therapist is very pleased that her arm and hand is in a more natural position so we will be going back to occupational therapy. And with Jana participating in Club 625 activities on a monthly basis and also working with a psychologist, we’ve decided speech therapy is no longer needed. She is quite delighted about that.
Our neighbors’ whole family went away for an evening and they invited us to use their pool. It felt so good to be in the cool water after a hot day and Janessa was so delighted to be able to go in the deep part and not drown.
We did one of our yearly traditions and found caterpillars to grow and hatch.
A friend brought us a picnic lunch and I made our picnic table summer festive. It was fun and the food tasted so good. I think eating outside makes anything taste better.
Joe took the girls for pony rides. They were quite delighted.
We did some crafts, colored pictures and read a lot of books. I’m almost embarrassed to admit we read one whole Boxcar Children book in one day, but when I remember all the missed reading times over the last two years; I have decided its perfectly okay to do that. We painted sun-catchers, sewed felt kittens and simply enjoyed a relaxing summer. Even so Jennie was never far from my mind and heart. I think (or at least hope) I’m learning how to live with pain intermingling in with everything I do, everywhere I go. Yes, there are times the pain is so overwhelming and it slips down my cheeks as tears, and its also quite a challenge to live well in the tension of feeling pain and joy simultaneously.
