Remembering….

Three years ago today Jana came home from the hospital, after spending 3 1/2 months there. Here she is walking in from the car.

When I think back to those days and remember the excitement of having Jana home, the uncertainty of how in the world are we going to manage everything, the pain of missing Jennie, The questions of “what will life be like for us now?” and a million other thoughts and questions that go through your mind when a catastrophic event happens in your life…

Jana did some figuring…

We drove her 230 times in the 94 weeks she was in therapy,

She put in 500+ hours of physical, occupational and speech therapies.

It makes one pause and ponder and wonder…How did we get through that?? And quite frankly I’m not sure. I know we couldn’t have done it without family and friends helping us and most of all God giving us strength, grace and courage to continue putting one foot in front of the other. I remember days thinking, wondering, ‘will we survive?’ ‘Will we make it through?’ And we did. Jana is mostly done with therapy, she is till doing vision therapy. She is loving her two days a week at the care center and her monthly Club 625 activities. We are thanking and praising God for His love and care for us through this difficult time. We have been so blessed by many different people, in many different ways.

Here is Jana 3 yrs later waiting for her ride to the care center.

This is one of our favorite songs. It says… “How many times can one heart break?
It was never supposed to be this way.
Look in the mirror, but you find someone you never thought you’d be.
Oh, but I can still recognize
the one I love in your tear stained eyes.
I know you might not see it now, so, lift your eyes to Me.

When you see “broken beyond repair”,
I see “healing beyond belief.”
When you see “too far gone”,
I see “one step away from home.”

Thank you Jesus for Your healing, for Your mending! We are here only because of You.

Grieving helps me Dance

All of us suffer loss in different ways and degrees. And each loss has its own unique pain and grief which becomes part of our story. Loss brings a sudden stop to the life we knew. It freezes life into a snapshot; (we only have pictures and memories of Jennie now, we no longer have her with us). Loss brings a disruption to our plan. It forever changes life as we knew it. It makes us ask the deeper questions – – Who am I really? What do I believe about God, about me, about life? Loss messes with our identity; it changes us and at times, I’m not sure who I am or who I’m becoming. Loss can also happen as a result of wrong doing against us and can cause us to want justice, revenge for the one who wronged us to make up or pay for the loss they caused. Sometimes loss can’t be seen with our eyes or touched with our hands; sometimes they are only be felt by the heart.

Whether it’s the death of someone we love, the death of a dream, the loss of a job or a house or the innocence of our childhood. Loss never leaves us the same- it will either transform us or destroy us. I would rather be transformed than destroyed but that means I have to face each loss head on. I need to identify want I lost, put words to what was taken away, which makes those heart losses, I have found, seem to be the hardest to process, to work through because sometimes the heart has no words for what it experiences.
Facing my losses requires me to take an inventory of my life: What is my number one priority? What is most important? Where is my main focus? In his book, The Journey of Desire John Eldridge writes there are two spiritual disciplines we as Christians should practice daily: worship- adoring God deliberately, regularly and grieving- allowing sorrow to do its work in our hearts. Which is similar to what a friend had told me; there are two altars in which to worship God: the altar of praise or the altar of lament. And I’m beginning to realize the more I’m at the altar of lament, allowing sorrow to do its work, the deeper the adoration I feel for God at the altar of praise.

I need to grieve each and every loss I experience if I want to be transformed rather than destroyed. God values authenticity, wanting us to be real, to be honest with ourselves, our hearts. Grieving is entering into and embracing the darkness that comes with each loss, and the bigger the loss or maybe the more aware I am of what I’ve lost, the deeper the darkness. I need to allow my heart to feel the pain of each loss, even though it hurts and sometimes the pain is excruciating. Grieving is good for us, it is cleansing. Mourning is the only way my heart can remain alive and free in this world of loss. Sorrowing is what allows our hearts to forgive the one who has sinned against us, allowing God to take care of the revenging. Lamenting is hanging on to God when your world is in total chaos but sometimes it’s allowing God to hold you when you have no strength to hold on to Him. Grieving also helps us understand, to realize that the life we had, is gone forever; and no matter how much or how well we grieve, it will not bring life, the way it was, back to us. It releases the life we had and opens our hearts to the good that is still in our present life. To accept the life I now have I must grieve the life I lost. It seems like such a paradox: loss, pain, grief, sorrow, lament, seemingly negative words; giving birth to worship, praise, adoration, alive, free, positive words. So as I face each loss and grieve it well, I am better able to love, to dance freely, openly with God my Papa.

And in other news, we are now the owners of a city house. We actually had settlement. I admit I was a bit fearful, even till the morning of our appointment, what if we get there and they back out…but they didn’t and we signed all the many papers and it became ours. Thank you for your prayers.

We’ve moved…

…and we also have another settlement date!! And I’m pretty sure it will happen this time  because I received a call the other day saying, “The loan has been approved. We just need some updated bank statements.” Which I of course sent their way and now we wait till settlement day. I think we’re adjusting well to living in the city, although it is hard to remember where I put stuff and I open 2 or 3 cupboard doors to find what I need. We’ve enjoyed several walks around the city. I found the library and have decided it’s easier to walk than to try to figure out where to park our van. It’s only a 20 minute walk. Also with JoAnn working again and a new house, I need to come up with a new routine to get the chores done. It’s been a bit challenging; I didn’t know how much I depended on JoAnn to keep everything together for me. I’m beginning to depend an awful lot on my phone and its alerts to me. Living with an invisible brain injury is very frustrating some times.

Here’s the front of our house. We have big plans for the front porch: flower pots, lights, wicker furniture and I’m toying with the idea of a painted porch rug.

Here’s our front window with our elegant “recliner chairs”. Our recliner chair was falling apart so we plan to get lovely matching ones but it’s not a very high priority yet.

Here’s the living room, we do have some comfortable seats.

One wall in the dining room

A friend spent most of a day and helped move Jennie’s memorial garden. We transplanted the bulbs and set it up. Now we want to plant annuals for the summer and add a few more pretties: solar lights, flower pots, a flag and maybe a hummingbird feeder.

The rest of our backyard, it only takes ten minutes to mow with the reel mower. We’ve planted some carrots, radishes, lettuce and tomatoes. And we also have dreams and plans for this little spot as well. Yes, we have a lot less space than we used to but it feels so much more manageable for me and a lot less stressful, too. We’re learning  how to work with and accept my brain injury and the limitations it has put on me.

We were given this yummy fruit pizza by one of our new neighbors and another neighbor gave us a bleeding-heart plant. And we’ve been told quite often this is the best part of the city. We do like the park across the street as well as the close by coffee shops. So if you think about say a prayer for us as we adjust to city life and continue healing emotionally as well as physically. God has done some amazing things for us in this journey and even in the hard, painful pieces He is still God and He is GOOD.

A Bend in the Road

In my last post, I had written we are planning to buy a house and had a settlement date; well, we didn’t have settlement- -four days before the settlement date the bank called and said, “We won’t approve the loan”!?! My head heard their reason, their explanation but my heart did not – still does not understand. We knew that our bankruptcy and foreclosure were going to be hard on our credit rating and also that banks don’t look too kindly on you for several years. And we told the loan officer all of that, we hid nothing. So how did she get a pre-approval for a mortgage to go through? We have no idea but she did. And Joe and I had agreed we won’t seriously look for a house till we know from the bank for sure that we can buy. So after we had our pre-approval letter, we contacted our realtor and he sent us a list of houses. We checked them out and made calls about some of them, went and saw a couple as well but nothing seemed right. Then we found this one and it had everything on our ‘need’ list and all but one thing on our ‘want’ list. It felt like a perfect fit for our needs. So we moved ahead with all the paperwork and now there’s a bend in the road. We’re not sure how the financing will come together but we still feel very strongly God wants us to buy this house that God is asking us to open our hearts and be willing to take the next steps in faith, to be willing to risk. Thankfully the seller is willing to work with us and at this point we are renting the house from her. We are still planning to buy it; we are looking into what options we have. We have done some painting and cleaning and are slowly moving some things in. And the more I go to the house, the more I like it and the more it feels like home.

I wonder, What is God teaching me, our family in this journey? What does God want me to learn about Him through this? What is my view of God in this piece of my story? There are parts of my heart being prodded and poked as this situation unfolds and I am aware of some unsettled feelings and emotions in my heart in connection with our bankruptcy and foreclosure.  I wonder, Is there something more God wants me to process and heal from that I didn’t know about before or maybe even ignored or pushed away? My hope and prayer is that my heart is open, sensitive and quiet enough to hear God’s still small voice; for it’s in the quietness God speaks and too often I am not quiet. I’m so busy trying to manage, to control, and to make life work that I miss the open doors, the opportunities to rest, to trust Him.

And the other bend in the road is the new diagnosis JoAnn got from the specialist Joe took her to this week in Hershey. They diagnosed her as having Neurofibromatosis (NF) which is an inherited disorder in which nerve tissue tumors form in the bottom layer of skin or in the nerves from the brain and spinal cord. NF causes tissue along nerves to grow uncontrollably and can put pressure on the nerves causing pain, seizures, even blindness depending where the tumors grow. There is no known cure for this disease, just options to control symptoms she may have. And the tumor in her brain is again slowly filling with fluid. She has another appointment after she comes home from Bible School, for follow-up care and to give us time to process and think through our options for a care plan. Could you pray that we would be able to think clearly as we search the options given us? That we would be honest with our hearts and process and work through the feelings and emotions we experience as we walk this journey especially JoAnn. She will need to control the symptoms and deal with possible complications the rest of her life.

I don’t know what’s around these bends in our road but I do know God my Father is with me and I will be okay, if I allow myself to be still and allow myself to be held.

An Update

It’s been a couple of months since my last update and it seems like lots has happened in that time.

Jana got her new shoes and brace. She was quite thrilled with both of them. She liked the better support her new brace gives her and then on Sunday she sheared off one of the bolts! So it’s back to her old brace till we get it fixed which hopefully won’t take too long.

Jana has been going to a care center for disabled people of any age one day a week. They receive one on one care and while there do a variety of activities: singing, crafting, school work and exercise time. The other week her group and another group went to sing for one of the caregiver’s grandma. Jana had made a card for her in craft time to give her. Each week Jana eagerly looks forward to her day at the care center.

JoAnn had another MRI done and the doctor says nothing has changed, yet he did set up another appointment with another specialist..So need-less to say we are a bit worried – –  wondering, “What does our/her future hold?” JoAnn is also going back into the working world. She is a caregiver for elderly people. Right now she is on an “on call” part-time basis but after we get moved and settled in she is planning to go full-time with regular clients.

And yes, that’s the other big news and change in our future. We are buying a house! We are scheduled to have settlement the end of January. We found a smaller house in Lancaster City. So we’ve been going through and getting rid of some things, trying to simplify. When I think of myself not too make years ago, the city is one place I thought I’d never move to. It’s amazing how time and circumstances can change your plans and ideas. We are hoping to move in May after JoAnn and Justin both get home from SMBI in March. There is a little bit of work we would like to do to the house, mostly painting and putting in carpet, before we move in. I am trying to carefully plan how much I do as I still struggle with fatigue and pain a lot of the time. I also don’t do well with a lot of stress, so I try to keep reminding myself to plan and also to listen to my body and not overdo it. It once again brings the evidence so clearly to mind how much our lives have changed the last 3 years. And I keep finding bits and pieces of Jennie as I go through things; her name in her just learning-to-write cursive on a scrap of paper, her story books, etc. And I feel that familiar stab of pain, of missing her, of longing to see her smiling face and hear her giggle. I wonder what she’d say about living in the city. Yet through the pain I feel the Father’s love and care as I imagine her in His arms, in complete contentment, joy and peace as she waits for us to join her.

Merry Christmas, Jennie

It’s your 3rd Christmas in heaven. And as Mark Schultz sings, “It’s a different kind of Christmas this year.” I think every Christmas will be different from now on. There will always be the questions, the wanderings, in our hearts even if we don’t say them. I struggle to put words to all that’s swirling in my heart. But I want to do as Toby Mac sings, “Let’s open up our hearts to embrace this moment, for Christmas this year.” An open heart will allow me to experience, not only the joy, peace and excitement of the season, but also the pain and sadness of missing your smiling face and life as it used to be.

We’ve done most of our normal Christmas traditions. True some were seriously modified, like we only baked two kinds of cookies instead of the usual eight to ten we used to do. And one of our new traditions the past three years was to wrap 24 Christmas story books and starting December 1 we unwrap one book each day and read the story. The story the other day really touched my heart and I cried as I read the story. It was titled Josie’s Gift by Kathleen Long Bostrom. It was the story of a young girl’s first Christmas after the death of her father. She was remembering the different things her father said and did. One of his saying over Christmas was, “Christmas is not about what we want; it’s about what we have.” But she was wanting more than she had; she wanted her father to be back, for life to be like it used to be. Christmas wasn’t about what she had; it was all about what was missing this year. And I can so well identify with her feelings.

 But I’ve been really pondering her dad’s saying: Christmas is not about what we want but about what we have. What do I have this Christmas?

~ Pain and tiredness true but then we enjoyed baking those cookies together;

We stayed home and painted pictures,

Made a gingerbread nativity.

~ We miss Jennie but we talked about her and Christmas in heaven and “Does it snow in heaven?” and many other questions about heaven. There was laughter and tears.

~ Peace – a deep down in my heart peace that I will be okay in this storm because my Father loves me passionately and is for me not against me and I can trust Him.

~ Hope – My Father has promised me heaven and I think since there’s a piece of me in heaven that’s what makes me long for heaven so badly some days. I never realized you could miss something you never had but I do.

And yet the more I ponder that saying; I think it’s actually wrong. Christmas is all about what we want, although not in the childish way her dad was thinking. But most of us are still very child-like in thinking if only I can get what I want: that money raise, that new car, a bigger house or well you fill in the blank, and then I can make life work, then life will be better. Most of don’t want to open our hearts and look deeply enough into them to really understand what it is we really want. The truth is I do want more than I have this Christmas. I want heaven. We all do. And what we all want is only possible because of Christmas. Because that is when God became one of us to make it possible for us to live with Him in a perfect world, forever. The following song is one of my favorites this Christmas season sung by Stars Go Dim. The phrase “Our God knows our deepest need, And comes to bring us back to him” speaks to me of how deeply and passionately God loves me and Christmas shows far He was willing to go to bring me back to Him.

Summer Fun

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.

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It tasted quite yummy and they didn’t get any salt in the ice cream.

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  Jodi baked a lots of goodies for us and we made “mud and worms pudding”, too. 🙂

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DSCN2153Our 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.

IMG_2968We did one of our yearly traditions and found caterpillars to grow and hatch.

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DSCN2165A 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.

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DSCN2240Joe took the girls for pony rides. They were quite delighted.

IMG_0946IMG_0952We 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.

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Family Vacation

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.

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We enjoyed the hot tub.

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We played games.

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They went fishing.

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I read quite a bit.

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We had craft time.

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We colored bow tie noodles with chalk paint and made butterflies and flowers out of them.

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We enjoyed a camp fire and tried a new for us campfire food.

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Ice cream cones stuffed with peanut butter, chocolate chips, nuts & marshmallows.

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They were very yummy.

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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.

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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.