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.

2014

2015

https://www.youtube.com/watch?v=Awz5PH-yXiQ

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 :)

December 2014 Update

December has bustled by in a blur. Three out of our five family members have extracurricular commitments making a crazy December even crazier. I’m not used to this pace!

Even with our frenzied pace, Anne has done some amazing stuff this month.

Anne is completing her third month of hand therapy. Anne has regained a slight pincer grasp (a grasp using the thumb and index finger). In order to do it, she has to have intense concentration. I’m always amazed at both the extent of Anne’s brain damage AND the ability to overcome it! If we persevere with hand therapy, she might (after 3-4 years) regain enough functionality in her left hand to use it in her daily living tasks. It will be grueling work for Anne, but long-term, I believe it is important to encourage her independence.

Anne took THREE INDEPENDENT STEPS in Physical Therapy. I don’t have a video of the three independent steps, but you can see how well she is doing in this video:

Anne had LOTS of routine doctor’s appointments… including a trip to the neurologist to discuss medication for ADHD. Anne is doing great in school, but her short attention span limits her academic potential. We’ll begin medication in 2015. We need prayer for discernment as we introduce another medication into Anne’s system.

Anne continues to improve both physically and cognitively so many years after the accident. Her therapists and teachers continue to marvel at her progress. We are grateful this Christmas season for the faithful prayer support we still enjoy from so many of you. God’s goodness shines through Anne. For this, we celebrate and glorify our Savior.

Much love and Merry Christmas from our family to yours!

Reformation Day & A Note from the Teacher

Today is Halloween, but it is also Reformation Day. Reformation Day is the day that Martin Luther nailed his 95 theses to the church door in Wittenberg, Germany. The debate which followed prompted the start of the Protestant Reformation. I love Reformation Day as it reminds me of God’s sovereign care to preserve the truth of His Word throughout history.

On a much smaller scale, I have been reminded of God’s sovereign care as He continues to work in Anne’s recovery. Recently, Anne started therapy for her left hand . After 4.5 years of NEVER being able to move her left hand, she used her thumb and index finger to pinch a goldfish and bring it to her mouth. If I hadn’t seen it personally, I would never have believed it possible. This is AMAZING.

Also, Anne’s special education teacher recently posted in the comments section, and it was such a glowing report, I wanted to highlight it :)

If I may add to your post. As some of your friends and church members may not realize how far Anne has really come. We had another annual meeting at school for Anne. It’s been almost 4 years since Anne returned to school since the accident. I will NEVER forget when she came into my classroom( along with Mrs. Jackson, Canon and Kate) and Anne asked, “Are you my mother( from the Dr. Seuss book)?” She’s come so far from not throwing things in the classroom to being able to function fairly well as a 3rd grader. She can do quite a bit of academic work, she’s starting to read, can type sentences and paragraphs with assistance and is even learning addition with regrouping, and multiplication as been introduced. She even started using the regular computer with a track ball. We are even discussing more assistive technology as she approaches middle school. Unthinkable 2 years ago when she would just turn the off and on switch on the computer. Also, she uses her walker throughout the school day. Quite an accomplishment from where she was…I firmly believe that Anne would not have come as far as she has without the support of her family and friends.

We are so proud of Anne. Her life is a testimony to God’s goodness and sovereignty!!

Anne and her big brother, Canon

Anne standing with her little sister, Kate

Kate and I dressed up for our school’s celebration of Reformation Day

Happy Reformation Day :)

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 :)

Double Digit Milestone

Today is Anne’s 10th birthday! It’s hard to believe…

At the beginning of the summer, I made a goal to have Anne 100% potty trained by her 10th birthday. Well…she did it! She’s totally potty trained. She consistently communicates when she has to go to the bathroom. She’s totally dry at night, and I can’t remember the last time she had an accident. She’s even wearing underwear at school and hasn’t had an accident there in a month! Yay!! No more pull-ups. We are so PROUD of Anne!

Another milestone is that Anne is walking semi-independently with her walker around the house. She still needs help transitioning in and out of a chair and avoiding obstacles, but overall, she’s doing great!!

Happy Birthday Anne!!

Anne at the beach

Just like the rest of the social media world, I’m sharing my Labor Day adventures. And like many parents of small children, sometimes I feel like it is more work than it’s worth to take kiddos to the beach. Let’s be frank. Parents still have all the normal responsibilities PLUS the added bonus of hauling beach paraphernalia, applying multiple layers of sunscreen and washing sand off of EVERYTHING. But my kids are 8, (almost) 10, and 12. It shouldn’t be too hard anymore…except that my (almost) 10-year-old can’t walk.

Wow. Talk about an added layer of difficulty. Eric and I leaned heavily on our able-bodied children to do their own hauling, applying and washing because we were consumed with Anne. Getting her down to the beach was the easy part – it was washing all the sand off that was difficult! But I think it was worth it. Anne LOVED the beach.

Now I need a vacation from my vacation :) Happy Labor Day!

Camp TBI Update

Anne has done GREAT at overnight camp! She’s participated in swimming, archery, canoeing, crafts, music, games and even singing and dancing on stage!!

We are picking her up tomorrow morning, and she starts school on Monday. We have officially survived the summer! Anne has done so well, and we look forward to what God has in store for Anne this school year. Thank you for your prayers and support and love for Anne and the rest of us Jacksons :)

Overnight Camp for Anne

We dropped Anne off at Camp TBI this afternoon. I can’t believe I actually left my precious Anne at camp. One part of me is desperately sad, and the other part of me is beyond excited.

She’s in a cabin with four other girls and their counselors. She’ll get to do activities like horseback riding, swimming, biking, arts & crafts, music – just normal camp stuff – but all made accessible to kids with disabilities. It’s a fantastic facility. I think Anne will have a great week!!

Please pray for Anne to have FUN and to not miss us too much. I don’t want her to be sad. I just want her to make new friends, feel loved and have fun. Thank you!

Bye Anne! We’ll see you on Friday!!!

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 ;)

A peek inside the secret life

I have a special needs child. There. I said it.

Before our accident, I didn’t know any other family with a special needs child. I was blissfully ignorant of this hidden world in which I now find myself.

The first secret is that there are a ton of special needs children! Just visit any reputable pediatric therapy center, and it will be PACKED. There are so many families struggling in this secret world. It makes me realize how miraculous a healthy child is!

The second secret is that even though our government goes to extremes to make our country accessible to the disabled (and I’m grateful), accessibility is still a huge challenge for our family. For example, a simple trip to the pool is difficult for us. In my limited experience, pools are sometimes not wheelchair friendly, so I have to carry Anne into the pool area. Doing regular life is difficult – especially running errands. Lifting Anne and her wheelchair in and out of the van is part of my normal life routine. But I’ve found that I only have the energy for one outing a day with Anne. So grocery shopping, back to school shopping and general “running around” has to be spaced out.

The third secret is that even though there are tons of special needs families, it is still incredibly isolating to have a special needs child. The world goes by at lightning speed and leaves us in the dust. In many ways, this is painful – and if I’m not careful, I can lean a little towards self-pity. Seeing pictures of families enjoying vacations to the beach or amusement parks twinges a little. Watching families bustle about without the physical limitations of a disabled child makes me long for an easier life. It’s times like this that I cling to the fourth secret of having a special needs child…

The fourth secret is the best. I am still surprised at how much joy Anne brings our family and others. The time I get to spend with Anne is beautifully rewarding. She’s a treasure, and everyone who spends time with her comes away better for it.

Recently, someone asked Eric to describe his relationship with his children. He said, “My oldest thrives academically so I share my love of technology with him. My youngest is gifted athletically, so I share my love of running with her. My middle daughter (Anne) struggles with most everything, yet she teaches me the most about life.” Anne is our glue. I can’t imagine life with her any other way.

Crayons In My Water

An Unpredictable Special Needs Blog

Kathryn’s Blog