Time is Different with Disability

This morning was Anne’s first day of summer. She woke at 7:30. I gave her a bath. She loves baths! After dressing, taking her medicine, and eating breakfast, it was almost 9:00 am. Time. It slips away like water. Everything takes longer with disability.

After breakfast, Anne watched the Wiggles while I finished report cards (summer break for teachers is a myth). Then we read a book together.

For the last seven years, my prayers for Anne have been for her to walk and read. God answers prayer. Sometimes he answers quickly and dramatically. Other times, his answer is a slow work – shifting subtlety over time – molding character through patience and perseverance. It is true that Anne can walk and read better than she could seven years ago. This is something to be celebrated. She read the whole Little Bear story, all eleven pages. She read three lines completely independently. I’ve never seen her do that before. She was highly distractable but she had a great attitude as I redirected her attention back to the story. She read with comprehension – often re-reading lines with more emotion to emphasize the meaning.

It took approximately 45 minutes to read the entire story. We were interrupted by a telemarketing call. After I hung up, Anne said, “That was awkward.” We laughed so hard together. The left side of her mouth used to droop when she smiled. Now her smile is almost even – and it’s perfect when she laughs. I love her laugh.

Anne’s almost-even smile

 

We finished the story at 10:30 am. Time. It slips like water. But it’s summer, and there is time to give. Anne is my treasure – a gift to be savored!

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Reminding Myself…God is in Control

The other night I dreamed that Anne could walk. I woke up that morning overwhelmed with joy which was quickly replaced with disappointment, but in the end, I decided to land on “hopeful.” In my half-awake state, I heard Anne calling from her bedroom, “Mommmm! I need to go to the bathroom!!!” Bleary eyed, I walked to Anne’s room, only to find her – not in her bed – but in the hall, right outside the bathroom. She can scoot to the bathroom, but she has never done it in such a purposeful way before.

I’m a firm believer in the sovereignty of God. If I look at the seemingly random events of my life through the lens of God’s sovereignty, sometimes I see patterns. That morning, Anne’s purposeful scooting to the bathroom immediately after my dreaming of her walking – seemed like a pattern. I would never go so far as to think it was a promise that Anne would walk! (The Bible doesn’t promise that!!) But…I do think it was a loving reminder that God sees the longing of my heart and cares. I was encouraged as I reflected on God’s sovereignty and could feel myself relax as I thought…God is in control.

I’ve also been encouraged by Anne’s progress in therapy. Her walking has dramatically improved. She is standing much straighter and crouching much less. Her endurance has also improved. The first day, she was able to stand for only 2-3 minutes. Today, she stood for 15 minutes. She also walked for 20 minutes (with support) on the treadmill. Her step size has increased as well as the speed of her walking. Also, she is propelling and steering her new walker independently. We typically see these kinds of dramatic improvements a few months after therapy. To see so much drastic improvement during therapy is very encouraging! See…God is in control!

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Anne with her new walker

Anne’s last day of intensive therapy is Friday. This session has flown by and seemed much easier to manage than in years past. That’s due in part to good friends who have offered to drive Anne for me a few times each week. I have been lifted and sustained by the body of Christ. Another reminder that God is in control!!

Looking forward, Anne will start three months of therapy in CHOA’s multi-million dollar robotics lab in February. She responded very well to their Physical Therapy program 1 1/2 years ago. So, I’m excited to see Anne continue to gain strength and stability this spring. I’m thankful that I can trust God to provide all that Anne will need exactly when she will need it. Afterall, He is in control ;)

Shared Suffering

“What doesn’t tear you apart will make you stronger.” I think I’ve read something like that once…

There’s nothing quite so sublime as to share suffering with another. Eric is the only person this side of heaven who understands the pain of the last 5+years. It is a shared suffering.

There was a time that the pain of Anne’s brain injury was so intense that it could not be shared but only endured. But now, as time and experience have numbed the sharp pain of loss, we have regained the capacity to carry one another’s burdens. This sharing of burdens is a door into deeper “oneness.” For Eric is the only one who knows the depth of loss and indescribable joy.

If shared suffering is our glue, then God is our rock. We stand on his sovereignty. We trust that all that led us to this present – the accident, the suffering, Anne’s recovery, and her new life – are all part of God’s perfect plan, not just for Anne, but for our whole family.

Somehow, we believe the accident saved us from ourselves – that God is using Anne’s brain injury and recovery to change the course of our lives for the better – even Anne’s life! For as hard as it is for her to live with a brain injury, for all the ridicule that she receives from her peers or the frustration she endures at not being able to control her own body, we trust that she is closer to Jesus because of it. And so are we – Eric, me, Canon and Kate – we are closer to Jesus. And we are grateful.

Years from now when Canon and Kate are gone, Eric and I will still have Anne. Sweet Anne. She is our glue. But we stand on our rock. Thank you Jesus.

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Summer fun and Summer challenges

This morning marks the first time ever (for our “new Anne”) that she has gotten out of her bed all by herself! She was bored and impatient waiting for me to come up to get her – so she got out of bed, scooted herself over to her bookshelf and started to play. This is what I found when I came upstairs this morning!

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I was THRILLED! This mess represents desire, determination, motor planning, independent thinking, and courage with a bit of mischievousness. These are new qualities that we are seeing in Anne this summer. She seems to be restless – like her brain is craving new challenges and stimuli. This is a good sign of growth and progress – but it is also challenging for the whole family! We feel like we’re cleaning up after Anne ALL. THE. TIME.

Fifteen minutes later, Anne’s room looked like this:

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I’m happy to clean up after Anne if it means she’s making progress… But she does keep us busy!

Next week, Anne begins three weeks of intensive TheraSuit therapy. This could not come at a better time as she is ready to be challenged! If you think of us, please pray for energy for both me and Anne as we tackle the taxing schedule of intensive therapy. Thank you for your support and prayers and for sharing in the joy of Anne’s long-term recovery!

Therapy Milestones

Right now, I am sitting in the waiting room of a therapy center located an hour away from my home. I’ve been here every day for the last three weeks. Anne is finishing up another round of TheraSuit Intensive Therapy. I’ve been juggling my job, Anne’s therapy and normal mom duties. I’m done.

Each day in this waiting room is full of adventure. I’m here for hours every day. Kids with walkers, canes and scooters move past me, and typically they are crying. The same therapists deal with screaming kids every day – patiently pushing them past their comfort zones. There’s something refreshing about being around special needs kids. There is no pretense. What you see is what you get…

They are kind and compassionate. They have grit and determination. When they’re mad, they yell. When they’re happy, they squeal. It’s so simple – and real.

Anne is doing fantastic during therapy. Her strength, energy and balance have all improved since the last session. She cries, yells and squeals just like every other kid in therapy. She’s a mess. But she’s a good mess :)

Therapy will end in another hour or so, and Anne and I will start the hour-plus commute home. Tomorrow is the last day, and I can’t wait!

Sometimes I wonder if all the therapy is worth it. I wonder how much to push – how much time to sacrifice. But then I look at the progress…

Look at the difference between these two videos. The first is of Anne last year. Look at how wobbly and weak Anne’s legs are. The therapist is giving maximum assistance, holding Anne with one hand and moving Anne’s cane with the other. The second video was taken today. Anne is with the same therapist, but she is so much stronger!! Anne is able to manage the cane independently and the therapist is holding her lightly for balance/safety. The difference is amazing.

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I guess we’ll keep taking one day at a time – resting in God’s strength to get through today and trusting in His faithfulness to provide the strength for tomorrow :)

Very Full

I realize that I neglected to post Anne’s monthly prayer request update for October. Bottom line: our life is full!

I absolutely love my new job. It is energizing to be challenged academically, to interact with students and godly staff, and to teach again. In everything I do, I am always a teacher, so being an official ‘teacher’ makes it easy to be who God made me to be :)

I’m thankful that I am only a part-time teacher. Being part-time allows me to be home when Anne gets off the bus. It also allows me to take her to all of her doctor’s appointments!

Anne’s appointments are about to get very overwhelming…

  • This week, she starts acute hand therapy. We are finally at a place in her recovery to address her left hand. Her thumb joint is unstable and her left wrist and fingers are severely contracted. We will go to a highly respected hand therapist twice a week through December.
  • In January, she will start her 4th session of Intensive TheraSuit Therapy. This involves driving an hour to and from a therapy clinic every weekday for three weeks.
  • We are also working with a neuro-psychologist and neurologist to begin a medication regimen to improve Anne’s attention.

I also have two other children with hectic schedules of their own! So yes, we are very full.

When I begin to feel overwhelmed, I breathe. And then I ask for God’s help! I need to give myself grace to let the laundry pile up and to eat a few take-out meals for dinner. In the end, it’s only the unseen that has value…

Laundry is seen, but perseverance is unseen. Anne’s disability is seen, but the love of Christ in her is unseen. So we press on – trusting in the unseen person of Jesus, and finding rest in him in the midst of our overwhelming schedules :)

A special-needs summer

One month ago, I spent an evening with a few close friends from church. It was a refreshing time of food, laughter and good conversation. We ended the evening in prayer for one another and it hit me in that moment that I was very-much-anxious about the summer. I confessed my anxiety in prayer and my sweet friends comforted me with their presence while I had a good cry!

Why does summer create such anxiety in me? One very wise woman commented on my blog recently,

People who don’t have a special needs child have no idea what “summers” look like. It’s not sleeping in late, lounging around eating meals whenever, etc.but it is constant stress of always making every opportunity a learning experience. Yikes this is hard and some days almost impossible to accomplish.

She nailed it. So what I’ve tried to do is walk the fine line between spending every moment working with Anne and letting Anne watch videos all day! I think the key to this balance is to give the burden to Jesus – let him carry my stress and let him give me the endurance to teach Anne.

It’s a daily battle, but I think it’s going well so far. Each week has presented a little different schedule and/or challenge providing us with the variety I need to endure. I’ve also lifted the burden by having a few people come to work/play with Anne each week.

Another highlight of our summer is that I’ve scheduled two camps for Anne which provide respite for me! Her first camp is this week, and her second camp is at the end of the summer. I’m so thankful for organizations like FOCUS and the Walton Foundation for providing accessible camps for kids like my Anne!

But I think the best thing about this summer is that Anne is thriving! Her seizures and irritability have diminished resulting in her being delightful and fun. I love my time with Anne! We are working on potty training and reading. She is doing well on both goals – staying dry and reading longer sentences.

This past week, I met the same friends who comforted me in my anxiety a month ago. Their first question was, “How’s the summer going?” It was such a relief that I was able to say, “Great!” God has supplied our every need. He always does. I don’t know why I ever worry ;)

My end-of-the-school-year Rant

Instead of joining everyone in ranting about how crazy the end of school is, I’ve decided to just go MIA. I watch the emails pile up in my inbox about this end-of-the-year party and that end-of-the-year party and I can’t keep track of them. I didn’t show for my oldest’s party, and I didn’t help with my youngest’s party. I didn’t even contribute food to Anne’s end-of-the-year breakfast. I am the worst end-of-the-year mom ever.

But what I have been doing is trying to prepare myself for the even harder months of June and July – those months when Anne (+ the other two kiddos) are home all day. Anne requires tons of attention and time to keep her from regressing over the summer. I have to keep her mind engaged and provide new challenges. It’s work,  joyful work, but work none-the-less.

The one end-of-the-year event I did purpose to attend was Anne’s award’s ceremony. In fact, the whole family came! This year, her special education teacher chose Anne as the “Academic Student of the Year.” Anne was given a medal in front of 400 students. Afterward she said, “I was so embarrassed!” That statement, alone, is proof of her progress as it reveals a new level of self-awareness that we haven’t seen before!

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This is what Anne’s teacher said as she presented her award:

The year’s Academic Student of the Year in Ms. Adrienne’s Class is someone who has not only improved academically in all areas, but has improved in being able to work independently and in having appropriate social interactions with her classmates and teachers. In addition, this student has mastered many of her gross and fine motor skills and is starting to walk around the school building regularly with hand held adult assistance or her walker. This student’s success is attributed to not only the student working hard, but also the support she has received from a variety of teachers and therapists. Most of all, the support this student receives from her family and her church is what has helped her to achieve her goals. We are pleased to announce Anne Jackson as Academic Student of the Year. Way to Go!! We are very proud of you!!

We are so proud of Anne. Thank you for your prayers and support of Anne and our family. Your support, prayers and encouragement have been multiplied through Anne so that an entire school has taken notice. May God receive all the glory!

Living a Life of Endurance

A few months ago, I wrote a post about how my brief break from writing turned into a month of self-gratification. A concluded at the end of that post that I needed to learn how to live a life of Endurance.

My friend, Josh Irby, challenged me to figure something out and write about it – and if I did, he promised to give me a guest-post spot on his blog. Well, it took me a few months of wrestling over the idea, but I think I’ve learned a little something about endurance :)

I would love it if you read my post on Josh’s site and let me know what you think. I feel I’ve only scratched the surface…

A Life of Freedom and Endurance by Kathryn Jackson via joshirby.com

Anne’s Four Year Milestone

Today marks 4 years since the accident. On April 13, 2010, Anne woke up as a healthy, able-bodied, 5-year-old child. At noon, she was almost killed in an automobile accident.

Every day since then is a gift for which we are profoundly thankful.

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Lately I’ve been tweeting some of Anne’s more pithy sayings. Here are a few of my favorite tweets:

Anne finished up her second week of Intensive TheraSuit therapy on Friday. The end of the second week is definitely the most difficult. Here is a video of her walking with a cane late in the day on Friday. Her legs look like noodles. She is SO tired!

We are so thankful for our precious Anne and we can’t wait to see what incredible things God does with her life!!!!!