4. At Home

New & Wonderful Things

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

God works all things together for good…

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

Good conversation

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:

  1. Our family who walks with us each step of the way
  2. Our friends and church who truly care and constantly reach out to us
  3. The amazing small group of therapists God has called to work with Anne

We would cherish your prayers with us for:

  1. God to grip Anne’s heart for all of her days, and for Anne to know God in the most profound way
  2. Anne’s attention to improve and her impulsivity to decrease
  3. To make great strides in her walking

-eric

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!

Grammar Police

Wow – it’s been a very busy week. Lots of appointments. The school system is in full evaluation mode – we had 3 evals for the school system, a private OT evaluation, 2 speech sessions, 2 PT sessions, a visit with the rehab doc and finally – a visit from a very energetic homebound school teacher. When you combine Anne’s schedule with Canon & Kate’s – well, I’m very tired :-)

Anne just surprised Eric and me again tonight. As Eric was putting Anne to bed, he said, “You’re just doing so good little Anne.” Anne’s response was, “You mean, so well?”

That was jaw-dropping AWESOME!! My girl knows her grammar :-)

Thank you for continuing to follow and pray for Anne! We are so grateful :-) -kathryn

Effort & Laughter

Little Anne squeezed my index finger with her left hand (affectionately known as lefty) ever so slightly today! i have asked her to do this repeatedly since May and she has never been able to muster even so much as a wiggle. But today, something in Anne’s brain connected. God is slowly bringing back function!

We have noticed that little Anne seems to be learning a new skill – effort! We see now when she really tries hard to move her legs in her walker, she holds her mouth wide open and cocks her head a little sideways. You can see the effort on her face. When she applies herself she really moves forward – literally :-) She exerted this same great effort when i was asking her to squeeze my finger. GO ANNE!

Anne continues to make us laugh. We were putting her to bed, and pretending to make Anne into a pizza. This is a silly family ritual that involves lots of tickling and squeals as we ‘stretch the dough, apply the sauce and toppings, and put the pizza in the oven (couch) to bake.’ When we finished and Anne was exhausted from laughing, it was time to eat the pizza! As we were pretending to gobble her up, she said very sweetly, “But, I’m a person.” We just laughed and laughed!

-eric and kathryn

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

Not quite ready for the big time…

We’ve only had the gait trainer for a few days, and she’s already made great progress. She took a few more steps by herself today than yesterday, and is slowly learning how to balance and move her body in space.  The gait trainer is awesome, because it helps to retrain Anne’s brain to walk.

I believe Anne will be able to walk into church one Sunday …she’s just got to practice a lot more before she’s ready for the big time!!!

-kathryn :-)

Rifton Pacer Miracle

One thing that I’ve wanted for Anne at home has been a walker. Anne’s not quite ready for a simple walker just yet. But, a couple of months ago, when Anne was being fitted for a wheelchair, just for fun, they tried Anne in a gait trainer. A gait trainer is a fancy walker with lots of options for support. You can attach a pelvic support or a trunk support, arm supports, ankle supports – and they can all be used in different combinations to customize the gait trainer for the child.

When Anne was in the Day Rehab program, I asked about getting a gait trainer for Anne at home, but it just didn’t work out…

Enter Anne’s new volunteer PT. She’s actually a professional PT in real life – she just feels called to help Anne. So when a vendor came to her work demonstrating gait trainers – she immediately thought of Anne.

After we talked, and I exclaimed, “That’s what I’ve been wanting!!!!” – she went to work, calling the manufacturer and then the local distributor hoping to find one that we could just TRY for Anne. After the PT finished telling Anne’s story, Charlene (the lady at the local distributor) said, “You tell Anne’s mom that she has a whole team of people working for Anne!” And the next day, Charlene emailed to say that they were DONATING a gait trainer to Anne!!!!

We went to pick it up today. Anne was treated like a rock star! All the employees watched and snapped pictures as she was fitted for the gait trainer. Anne turned to her PT and said, “Is it REAL that I’m going to be able to walk into church by myself?”

Anne has taken a few steps by herself today. We hope she’ll be taking much more in the near future!!

It is such an honor to be in the middle of all of these miracles that God has performed for Anne. He does this through HIS people, like the PT and Charlene and Anne’s speech therapist and through our church family and community. He continues to provide perfectly for sweet, little Anne. It’s all amazing.

PROFOUNDLY grateful! -kathryn

BTW: here’s the link for Anne’s new gait trainer. Rifton Pacer gait trainer