Author: kathryn

kathrynhttps://prayforanne.wordpress.comTeacher, servant & child of God
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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

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

Life has been very good lately…

We had a wonderful visit with family yesterday. Eric’s family from France are in the States for a few days. As we gathered with everyone, Anne seemed more lucid. Her eyes were bright, and she seemed less impulsive than usual. It was a good time.

This morning, Anne’s PT visited. It is so clear that she is God’s provision for Anne right now. She spent extended time with Anne, and Anne seemed to perform well for her. The PT is genuinely excited to work with Anne which is so encouraging to me. She’s so knowledgeable and experienced. I’ve learned so much from her already!

One interesting observation she made was that Anne’s muscles have good strength and seem to work well. Her brain just needs to be rewired to move them correctly. This requires that we are consistent with her exercises. She seems to learn quickly – but she doesn’t carry over new skills from day to day. Repetition and consistency are very important for Anne – two things that I do not excel in.

So please pray that I might be disciplined to do Anne’s exercises and also creative to see ways I can incorporate ‘therapy’ into our daily activities.

One last thought. I’ve had more peace about Anne than ever before. I think it stems from two things… First, acknowledging that Anne is forever different is a step toward acceptance – which is one of the stages in grief. In other words, I don’t feel as weighed down by grief as much as before (that could change, but for now, it’s nice :-). Second, I feel like I’m resting more in God’s hand and plan for Anne. It’s easy to place my trust in good things – like therapy, nutrition or Anne’s progress – but ultimately, God has the final say about Anne’s life. It’s refreshing to find rest in God alone.

Thankfully, kathryn

Waiting and Celebrating

It has been a glorious day! It’s been filled with good friends, laughter, encouraging words and even some tears.

Eric and I had the privilege of attending a friend’s wedding. She is in her 50’s and was married for the first time today! Over the last six months, as I’ve shared in her engagement and wedding planning – her story of waiting – has been such an encouragement to me. It was such joy to see all of her waiting culminate in this beautiful wedding day!

Anne’s former Sunday School teacher, Ms. Debbie came over to care for Anne. Anne – with all of her new emotions emerging – screamed as loudly as you can imagine a petite six year old to scream – MS. DEBBIE! MS. DEBBIE! MS. DEBBIE!! Anne had a good day filled with Ms. Debbie’s boundless energy and enthusiasm.

Eric and I were so encouraged to see both current and old friends at the wedding – many of whom follow Anne’s story on Caring Bridge. These friends shared significant, comforting words with us. We left very full.

One friend (whose late husband worked with head injury patients) confirmed what I’ve observed in Anne. Most head injury patients are different than their former selves. God has chosen to leave Anne on this earth – but he has left her as a completely different child than she was before. Grieving the old Anne is very painful, but it is sweet to have hope in the Creator for new Anne’s future. It is exciting to wait and watch how God builds and grows this new Anne.

So what does life look like now that Anne has graduated from Day Rehab? …We are waiting. Due to all the evaluations that have to take place, Anne probably won’t start school until late 2010/early 2011. We are waiting to start outpatient therapy until insurance details are solidified. So Anne is at home for a little while. I think it’s a good time of rest for all of us.

So we wait and rest. Please pray that we might strike the right balance between rest and work – as I try to stretch Anne both physically and cognitively each day. And pray that God would move people to come alongside us during this interim period – to provide exactly what Anne needs for this stretch of her journey.

Thank you! -kathryn

He Knows.

Yesterday I wrote about how I was anxious about the unknown….

This morning I read from the devotional Jesus Calling. (It’s written with Jesus in the first person, as if He were talking to you.)

October 6
Be willing to follow wherever I lead. Follow me wholeheartedly, with glad anticipation quickening your pace. Though you don’t know what lies ahead, I know; and that is enough! Some of my richest blessings are just around the bend: out of sight, but nonetheless very real. To receive these gifts, you must walk by faith – not by sight.

From the beginning of this journey until now…. God has always shown up at my lowest lows – to remind me (in a very personal way) that He knows. He knows me; he knows Anne; he knows what was, what is and what will be. He knows; He is sovereign, and He is good; therefore, we will trust in Him.

Thank you for praying with us – for Anne’s healing and for our family to walk by faith and not by sight.

-kathryn

Graduation time!

Tomorrow is Anne’s last day of Day Rehab. They’ll even hold a graduation ceremony for Anne at the end of the day!

The Day Rehab program has been excellent for Anne, but Eric and I both feel good about Anne moving to the next phase of her therapy. She’ll transition to more traditional out-patient therapy. She’ll also go to Kindergarten in the public school system – where they are more equipped to serve Anne.

I don’t know what our new normal will look like. It seems like we will be juggling lots of therapy appointments with school and rest. Poor Anne still gets so tired.

We’re praying that God will bring just the right people into Anne’s life that He can use to push her forward in her recovery. She needs firm, kind therapists and teachers. She needs an especially good speech therapist that will help her reach her potential as she continues to struggle with low attention and increased impulsivity.

There are so many unknowns. I have felt very overwhelmed this week. God has met me through the kindness of friends who drop everything to come help me do laundry, or watch the kids or bring me lunch.

Even though I feel anxious about all the unknowns, Eric is so good about reminding me of what is true. God KNOWS – and He is doing good for our family.

Thank you for praying with us… for just the right people to help Anne – and for the grace to believe in God’s good plan for Anne and our family. Thank you – kathryn