Merry Christmas!
Anne: What do I have behind my back, Daddy?
Eric (thinking really hard): Is it a bouncy ball?
Anne: It’s not just any bouncy ball. It’s a magic bouncy ball. Whenever you bite it, it turns into an elephant!
We all had a wonderful day, except for Canon who had a 101 degree fever. But he’s starting to feel better now.
Well, Almost. . . . . . Kate(4) has enthusaistically asked me every day this week – “is tomorrow Christmas?” Little Anne, catching wind of these discussions has started asking me – “is today Christmas?” i suppose the theory being, if i keep asking maybe mom and dad will eventually give in and say that today IS Christmas :-)
Little Anne had a really good day yesterday. . . she just seemed a little more lucid and ‘with it’. After a strenuous OT session, she asked Kathryn on the drive home – “i’m tired, i worked so hard today, can we go to Wendy’s?” Her conversation just seemed a bit more normal and the tone in her voice seemed more herself. She seemed to switch topics less frequently and kept on-track.
Over breakfast, as Canon(8) and i were discussing our new family dynamics and how God still has a good plan for Anne and for us amidst the difficulty, Canon reminded me: “Daddy, its like the story of Joseph!” How so, i asked. Canon suggested that just like Joseph’s trip down the dark well of hopelessness, God made it all for blessing and for good – and for His purposes!
Kathryn and i have been a bit more anxious (and even sad) these past 2 weeks as we consider little Anne’s challenges and how she loved Christmas last year. Canon’s Jospeh account that God is writing a story that will glorify Him through the weakness of a child (Anne) is amazing wisdom. What a great thing for me to remember as we focus not on ourselves, but on the Christ-child. . . . . through the weakness of a baby, God chose to save us!
-eric
Here is an update from our neurology appointment this morning… The doctor walked into the examination room and began to ask questions about Anne’s history – and after about 5-10 minutes of his thorough questioning, Anne began to have one of her “episodes.”
The doctor said, “well look at that, she’s having a seizure.” It was one of her longest yet – 3 to 4 minutes – and the doctor took thorough notes through it all. He said it looked like a left-sided partial seizure. He prescribed medication, scheduled an EEG, and now we’ll add neurologist to the long list of doctors that we see regularly :-)
Anne’s seizures have been very inconsistent, so the fact that she had one WHILE THE DOCTOR WAS IN THE ROOM – was a miracle – and a direct answer to many prayers.
The good news is that they appear to involve a small area of Anne’s brain, are relatively mild and were diagnosed early enough to prevent future damage – at least we pray that is the case!
Thank you for your prayers!!! -kathryn
I just got home from our church’s Christmas program rehearsal. Three of us are particpating in it, so it was a busy night!
Tonight’s rehearsal crystalized some thoughts for me – as I’ve been wrestling with why I’m struggling with Christmas this year. I didn’t want to put up the tree, but I did it- for the kids’ sake. I didn’t want to deal with presents or wrapping paper. I don’t like seeing all the lights. It’s all so painful – b/c it’s all tainted with grief.
I think for the first time in my life, I find myself wanting to push past all of this christmas-y stuff – and find Jesus. I have this image in my mind of unwrapping this huge box that is covered with commercial christmas paraphernalia. And the box is really hard to unwrap and open – layers and layers and layers of paper and packing tape and packing material – to finally uncover the tiny Christ child – hiding in the bottom of the box.
Thinking of the Holy Night of Christmas requires discipline to be still – but thankfully, it is where I’ve found comfort this Christmas season…
And I’ve needed comfort… I am taking Anne to the neurologist tomorrow morning b/c we think she might be having seizures. We’ve been calling them “episodes.” She’ll zone out and jerk her body slowly. They last anywhere from 30 seconds to 2 or 3 minutes and they are SO difficult to watch. It’s just a painful reminder that my sweet little girl has a serious brain injury.
Will you pray for us tomorrow morning?
Trying to find Jesus at the bottom of the box… -kathryn
I’ve been greatly encouraged today by all of your guestbook entries and emails to me – THANK YOU! A friend from church even brought us dinner tonight. God continues to shower His favor upon our family through you all…
Anne’s visit to her school went really well today. She was visibly excited this morning, and said multiple times, “I can’t wait to go to school Mama!”
She will be in an orthopedically impaired class that is made up of multi-aged kids. Most of the kids attend a general ed classroom in the morning, so Anne will be in a small group of 2-3 kids for much of her school day.
At school, she was able to talk semi-appropriately with the students in her class. One very sweet 5th grader said, “Wow, she’s smart for a kindergartener.” That was encouraging to hear :-)
Anne’s teacher is already thinking of creative ways to incorporate therapy into her school day. We’re going back on Thursday so Anne can participate in the class’s holiday party.
All in all, it was a wonderful day in the middle of a difficult week – and I’m grateful!
thank you all! -kathryn
Sorry that we haven’t posted in a while… Sometimes we don’t post because there just isn’t much to report – or it could be because we’re insanely busy… But this time it’s because I’ve been unusually sad. I don’t know whether it’s the Christmas season or other circumstances, but I just feel spent and downcast.
I’ve experienced enough dark seasons in my life to know that it won’t always be like this! One day I’ll look back at this Christmas, and be SO thankful that I’ve lived through it and don’t have to go back :-)
But something I read tonight encouraged me a little… It’s from December 13th’s entry of Streams in the Desert:
“Sometimes the darkness in our lives is worse, because we cannot even see the web we are weaving or understand what we are doing. Therefore we are unable to see any beauty or any possible good arising from our experience. Yet if we are faithful to forge ahead and ‘if we do not give up’ (Gal. 6:9), someday we will know that the most exquisite work of our lives was done during the days when it was the darkest.”
Oh I hope it is true!
…I am taking Anne to visit her new teacher tomorrow. Please pray for God to use her and the other students in Anne’s class for good in Anne’s life – and for God to use Anne for good in their lives as well.
Forging ahead :-) – kathryn
12-5-2010
Today was a big day for our family. Canon was baptized, and (along with several other children in our church) made a public confession of faith and was accepted into church membership.
It was the first time Anne has been to a worship service in a while. Since she’s become more emotive and vocal, we’ve only taken Anne to Sunday school. So, this morning, as I was wheeling Anne into worship, she exclaimed, “I’m so excited to be in church, mama!”
As everyone was singing, Anne looked down at the bulletin and pointed to one word in the middle of the page. “Mama, help me read that ‘G’ word. What does it say?” I replied, “G. O. D. God.”. So Anne repeated while everyone was singing, “G. O. D. God. G. O. D. God……” Out of all the words in the bulletin, little Anne points to God. You gotta love that!
When Pastor Pete got up to introduce all the children who were becoming members, Anne called out, “Hey Pastor Pete!” And after Pete introduced all the children, he asked, “Did I forget anybody?”. Little Anne yelled out from the middle of the congregation, “ME!!”. Everyone laughed, and sweet Anne did something new – she felt embarrassed.
Lots of new and wonderful things from Anne today. It was a good Sunday for the Jacksons :-)
-kathryn
I can’t believe how this week has flown by. It’s been another busy week full of appointments and therapy. Anne continues to do well – taking each new place and person in stride.
Eric and I have been reminded this week of the ways God is using Anne’s injury for good…
First of all, we see good for Anne. Before, Anne was very shy and reserved. She saved her affections for a select few. She was paralyzed in a way by her concern over what others thought of her. it was our constant prayer that God would remove her self-absorption. Anne’s injury has helped to remove her self protective filters, so she is free to express what she feels. What we are left with is an extremely loving little girl.
Secondly, we see good for Kate. Anne was very controlling of Kate before the accident. Without Anne’s constant directing, Kate has blossomed into more of herself – which is a highly energetic, fun-loving, spirited little girl.
Lastly we see good in how God is shaping our character. He is molding Canon into a more compassionate little boy and rooting out the selfishness in Eric and me. It is painful, but good!
I’ll end with a brief bit of news. After a marathon meeting with the school system- at which we outlined all of her goals and requirements, Anne is set to start school in January! Everyone from the school system has been wonderful and has really strived to provide the very best services for Anne. I could not be more pleased :-)
Thank you for your continued prayers. We are grateful beyond words for the constant encouragement we receive from your comments and prayers for our family. Humbly, kathryn
Little Anne’s conversation seems, ever so slightly, more appropriate…
Every night little Anne and I pray together. We pray for lots of things including her relationship with God, her healing mentally, and her progress physically. She always asks me in the middle of my prayer: “Dada, can I pray?” After an immediate ‘Yes’, she always prays the same thing: “Thank you for Dada, Amen”. I never really thought much about her prayer, until a few nights ago – and I realized, on so many levels, what a wonderful blessing that tiny prayer is to me. Tonight, something wonderful happened, Little Anne made her expected request, then prayed: “I pray that I would be able to run, and dance and sing, even though I already know how to sing. And thank you for the trees, Amen”. Wow, something new and different from her prayer!
Kate (our 4 yr old) normally complains about going to her weekly speech therapy appointment. Last week Kate announced how excited she was about going to speech. Upon hearing Kate’s change of heart, Anne said: “but Kate, I thought you didn’t like going to speech therapy”.
When Kathryn was reading books to Anne while sitting on the floor, Anne blurted out: “Mommy I am having so much fun!”
Individually, these items seem tiny at the point of each event, but they add up to tell a significant story of God’s healing. Only a couple of months ago, little Anne would not have been capable of such suitable and fitting comments, but God continues to do His good work in Anne!
We are thankful for:
We would cherish your prayers with us for:
-eric
I’ve been a bit discouraged lately about something (that will probably sound strange) …Anne’s feet. I’ve always taken feet for granted. I find myself watching people’s feet now – how without even thinking about it, people can place their feet flat on the floor – without their ankles rolling or without going up on their tiptoes. I watch Kate jump – and I’m just amazed at the complexity of the brain – working the muscles and controlling the balance just so – to actually jump and land – solidly on flat feet.
Anne’s feet are always pointed in and down. She can’t stand without braces to hold her feet at a 90 degree angle and to keep her ankles from rolling. It takes a minimum of 10 minutes for me to stretch her feet to fit in her braces. I can’t just get Anne out of bed and stand her up – no, I have to carry her everywhere until I have the space in my day to stretch her feet out.
Why do I mention this? Well… Anne’s feet represent to me the relentlessness* of disability. It never ends. It’s constant and always with you.
As I was complaining about Anne’s feet to her (awesome) PT this morning, she gently reminded me to be thankful for Anne’s feet… “They’ve improved, Kathryn.” She’s right. I should be thankful :-)
But here’s what I’m really thankful for. I’m thankful that I have to care for a child with a disability. I’m thankful for the relentlessness of it – because it is a physical manifestation* of who I am and who I have always been – completely dependent on God.
Before the accident, I could deceive myself and live as though I didn’t need God – live as if I were not broken and completely dependent on God. We are ALL broken and in need of a saviour, but it’s so easy to live independently of God.
Grieving and caring for Anne is so challenging that rarely am I not aware of my need for Him. And you know what is amazing? Yes, Anne’s needs are relentless – they are always there, but God is more relentless. He pursues me. He comforts me. He comforts Anne. He gives us strength, joy and perseverance. He helps us stay in the moment and not be overwhelmed by the future. HE IS OUR EVERPRESENT HELP IN THIS TIME OF TROUBLE. He is near. He is my God. That is what I am thankful for!
Happy Thanksgiving :-) -kathryn
*A few thoughts from this post came from Stephanie Hubach’s book on disability called, Same Lake, Different Boat . I borrowed the word ‘relentless’ from Stephanie’s book. I really resonated with that word… Also the idea of disability being an outward representation of our inner brokenness came from Same Lake, Different Boat . Thanks Stephanie!
Crayons In My Water 