Kate

Relentless

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!

Bobbi Jo Brooks Photography

Our church is blessed with lots of gifted people – one of which is Bobbi Jo Brooks – who graciously photographed our family a few weeks ago.

She’s posted a few pics on her blog. She was able to catch a few great shots of Anne!

courtesy of Bobbi Jo Brooks Photography

You can see the pics here!

Only a week?

Has it really only been a week since we got Anne’s gait trainer?  Seriously, only a week?  Last Thursday seems like a lifetime ago – Anne has changed so much…

Anne's Rifton Pacer

She’s walking SO much better now.  She loves to walk to the piano, and then I turn her around and she walks back to the sofa.  The other night, she wanted to quit, but we encouraged her to walk as fast as she could to the sofa.  When she finished, Eric hugged her and said how proud of her he was.  Then Anne said, “I’m proud of me too.”  YES!  She put forth EFFORT!  AND had the self awareness to feel proud of herself!  We’ve been praying for that :-)

Another thing…  Anne was able to sit in my lap – without moving – just relaxing for almost five minutes.  That might not sound like a big deal – but to me, it’s HUGE.  There is something about Anne’s injury that prevents her from sitting still. While she was in the hospital, she could not relax in my lap – she would constantly want to sit up.  And she’s done the same thing at home – not being able to just sit in my lap – but always wanting to change positions.   This week, that’s changed!  I’ve so enjoyed Anne’s short bouts of stillness!  You don’t think about the gift of a relaxed child in your lap, until – well – your child can’t relax – but Anne is improving :-)

Anne’s also doing really well with her new speech therapist.   Therapists are people – with different personalities and gifts, and some have meshed well with Anne, and others – well, not so much.  This therapist is able to pull the best out of Anne.  We’re very thankful for her!

I’ve learned alot about sensory processing issues from this SLP (speech language pathologist).  Anne struggled with sensory processing before the accident, and it’s only magnified in her now.  I’m excited for Anne to start working with an OT in the area that has extensive experience with Sensory Processing Disorder.  I’ll probably write more about that later…

But for now, it’s obvious that God is working mightily in Anne!  She is emerging more and more.  Getting angry, showing excitement, demanding her way, kissing Canon, correcting Kate, and saying, “I love you Mama.”  :-) 

The joy she brings makes up for all the hard work of caring for her.  We’re very grateful in the Jackson house these days!

-kathryn

A different Anne

This evening Canon and Kate built a little train in the driveway made of a bicycle and two tricycles. They connected all three with bungie cords. Kate and Canon rode on the first two with the third empty. Canon then stated enthusiastically: “when Anne is well, she can ride with us!” Kate and Canon had so much fun with great laughter as they rode in big wide circles while the funky train weaved back and forth with only moderate control. I so wanted little Anne to be a part of the joy that kids experience in this kind of play. . . . .maybe one day God will bring Canon’s wish to our minds as we see Anne playing with her brother and sister. . . . .

Since Anne has been home all day these past couple of weeks, Anne’s deficits are more apparent. Canon has been more sad and moody. Noticing the change, Kathryn asked Canon why he was feeling down. Canon said: “Anne just seems so different. I can’t play with her like I used to, and when I try to talk to her, she starts talking about something else.” …meaning that Anne has a difficult time staying on topic.

We’re all very sad that Anne is so different. She’s not only different because of her physical and attention deficits, but her personality has shifted as well. Simply put, all the intricate connections in her brain were changed by the injury.

On the flip side, we get to watch God build Anne into what He wants her to be. He cares for her more than we can imagine. He has already called an OT, PT and Speech Therapist to work with Anne while she is home. These women individually felt God calling them to use their skills to help Anne – and stepping out in faith, God is using them to richly bless our family!!

-kathryn and eric

Anne’s family

Anne woke up from her nap yesterday and saw Canon, Kate, and Grandmom, but not mommy – her little lip quivered, she made a sad face, and asked “where’s mommy?” The emotions of a 5 year old are returning! How wonderful!

This morning Kate (just turned 4) loudly announced that she was performing “bending therapy” on Anne. The procedure was apparently to take Anne’s arms and bend them back and forth quickly at her elbow! Anne had a look of both concern and joy while Kate was ensuring that Anne’s therapy continues ’round the clock :-)

After swimming, Kate told me that she would only allow Anne to use her Dora kickboard up until Anne was all better. As I was considering directing Kate on being unselfish, Kate seemed to read my thoughts and explained, “Daddy, Anne doesn’t really like Dora” . . . . so our little Kate was looking out for her sister!

We are seeing this more and more – Canon and Kate really watching out for Anne, being protective of her, wanting to help her get better and always wanting to spend time with her. At night, when we pray, we pray for lots and lots of things, but Kate and Canon’s words are primarily prayers for Anne.

Please pray with us:

  1. Anne’ mind would be clear and focused
  2. Anne’s memory would return
  3. Anne’s left arm would begin to function
  4. Anne’s legs would work so she could “walk and run and dance”

-eric

Anne’s at home today…

It’s nice to have her at home!

Right now, she’s sleeping while Canon and Kate are playing. Yes, I said playing and not fighting :-) Anne is not the only one improving in this house… Canon and Kate are adjusting to our new normal. See the train track that they built together?

Canon & Kate's train track!

Anne has come a long way – but still has a long way to go. It’s hard to quantify exactly what has improved… I guess her memory seems better. She seems more aware. She’s just generally ‘better.’

8-6-2010

Anne is having more frequent episodes of sadness – which is a good thing, a sign that she is healing and becoming more self aware. She has also starting missing me (mom) while she is away at rehab- another sign that self-awareness is emerging. We continue to covet your prayers for perseverance and God’s sustaining hand for our family. This is a long road of recovery…

A word of praise… Eric’s company has generously extended the amount of insurance coverage for Anne. We are so grateful as this gives Anne another 5 weeks of rehab! God continues to supply our every need – whether physical, emotional or spiritual – He has been our great provider and everpresent help in this time of trouble.

We remain grateful… -kathryn

Anne makes us laugh …again!

Excerpt of tonight’s dinner conversation…

Kate: I’m full. Can I have dessert?
Eric: Kate, if you’re full, then you don’t have room for dessert.
Canon: Well, I have a part of my tummy for regular food and another part for dessert.
Eric: You know, cows have multiple stomachs, and the last time I looked (and I’ve looked quite closely…) you are not a cow.
Kathryn (to Kate): Do you think Canon looks like a cow?
Kate: No!
Anne (to Canon): You look like a cow, Canon.

Lots of laughter

As i type this, our little Anne is sitting on the sofa right next to Kate and Canon talking and singing about all sorts of topics. The things she says continue to slowly inprove in their context. She just seems a little more “with it” regarding her ability to understand what is happening around her. She occassionally says very funny things that make us all laugh and laugh, and Anne just loves this. . . . . then she will re-state the funny to ensure she milks all of the laughter she can from us. She gets a huge smile across her whole face during these episodes, and i think seeing her smile just brings such joy to our hearts it gives us the freedom to laugh even more.

We went to the pool today and Anne seemed actually excited about the trip. It appeared she was thinking about the future just a little bit – actually anticipating something beyond the immediate present.

Little Anne still really only has use of one limb – her right arm. Her left arm will occasionally move, and while she can move her legs, the high tone is preventing much progress in the way of any standing or walking.

Please pray for her mind to sharpen, and for her memory to improve. Little Kate prays every night that Anne would “soon be able to walk, and run and dance”. We so look forward to that day!

-eric

Stomping and Staring…

So sorry that I haven’t updated the site in a while… Simply put, I just feel sad. I miss Anne when she’s at rehab. I miss the old Anne when she’s at home. The physical demands of caring for Anne coupled with the emotional work of grieving is just exhausting.

I feel like God is prompting me to accept the fact that the old Anne is just that – old. And then to trust Him to make the new Anne better than she was before… But I’m resisting.

I feel like Kate when she gets mad. She stomps her feet and looks at me with a real mean stare. It takes all of my will-power not to laugh at her! Clearly her stomping and staring do nothing to sway my will. I still know best – whether she likes it or not ;-)

I know God knows best, but I don’t like it right now, and I just want to stomp my feet a little longer. But I won’t stomp long – it’s just too painful…

Only God has the power to heal and shape Anne. He loves her and has good plans for her – plans to prosper her, to give her a future and a hope.

God is near – even when I’m stomping and staring.

Praying unceasingly for little Anne – kathryn

Wow,

…Anne is home. Anne has really done so well adjusting to home – even with the juxtaposition of having many new experiences for Anne mixed into the familiarity of home:

  • she has learned to sit on her own for 5 minutes or so before falling over.
  • Anne has continued to eat really well, although she still makes an enormous mess :-)
  • she is sleeping better here than at the hospital
  • she seems happy and is only fussy when hungry or constipated
  • we took her to the pool and she enjoyed a short water therapy session

Canon and Kate have been really sweet and are always wanting to assist Anne. Anne pokes their eyes, pulls their hair, and squeezes their noses, but Canon and Kate just love on her. Tonight Kate said to Anne right after Anne pulled Kate’s hair – “I love you, Anne”. Somehow at 4 years old, Kate understands where Anne is in her recovery and is willing to be on the journey with Anne – only God could make that happen.

Pray for Kathryn – it has been hard: While at the hospital, the comparison was the miracle of Anne moving from the stillness and silence of the PICU to Anne’s speech and movement while at inpatient rehab . . . . but at home, we are much more reminded of (and mentally compare her to) Anne’s little person prior to the accident. So we continue to have joy through some tears when remembering the past . . . . but we know God calls us to be in the present with Him . . . . and Anne.

The day rehab program starts on Monday, so our journey continues. . .

Pray that Anne will continue to heal! We have three goals for our stint at day rehab – Reading, Writing, and Walking. Please pray that God heals Anne in these ways.

-eric