Saturday Extracurriculars

Most of my friends spend Saturdays with their families…soccer games in the fall, baseball games in the spring. Some swim all year long or attend gymnastics meets every weekend.

My typical daughter, Kate, would love to play soccer in the fall and spring, go to dance-lessons 3 nights a week AND be a competitive gymnast. Her energy and drive amaze me. But our family isn’t able to live at the same pace as typical families.

We are able to participate in one extra-curricular activity per season. Kate was in gymnastics in the fall. Canon played basketball in the winter. And Anne is in robotics therapy this spring. This is how I spend my Saturday mornings – watching Anne in CHOA’s multi-million dollar robotics lab!

This is not the typical “extra-curricular activity,” but it is for our family! Even though I know this is what is best for Anne, I still struggle with guilt. I worry that I’m cheating Kate out of opportunities that would develop her natural athletic ability.

All families struggle – our struggles are just different than the typical family. But the joys far outweigh the struggles. I just hope Kate feels the same way.

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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 ;)

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

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!

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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!

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!!!!!

 

God’s Amazing Answer to Prayer!!!

Well friends… those of you who have prayed so faithfully and those of you who have prayed once or those of you who just think of Anne occasionally… today is the today to rejoice and thank God for his amazing and wonderful gifts!!

I’m so excited. Can you tell I’m excited??!!!

Anne is now walking with a walker, independently. She can propel and steer the walker independently. She has never been able to propel any assistive walking device by herself before last week. I can’t emphasize how amazing this is… Just watch :)

(Note: Anne’s Physical Therapist is holding Anne’s gait belt which is around her waist for safety only. She is not assisting Anne. Anne is walking, balancing, propelling and steering all on her own!)

In this 2nd video, Anne’s walking improves as she walks past a group of her peers… just watch how proud she looks :)

Here’s a cool twist to this amazing answer to prayer. Three years ago, when Anne was discharged from CHOA’s Day Rehab program, I asked the PT if Anne was ready to try walking with a walker. Her truthful answer of “No,” was very discouraging at the time. Wouldn’t you know that this very same PT accepted a position within the school system last year. And on her first day of work, she walked into Anne’s class and Anne recognized her. Anne, her former patient from Day Rehab, was her first patient in the school system. And it was this same PT (who told me, “No,” to a walker three years ago) who worked to find the perfect walker for Anne. This is Lavonda, Anne’s PT, walking with her today. I am so grateful for her expertise!!

Continued healing!

Anne is doing something amazing! She is starting to crawl.

I sound like a first-time mom talking about her 7 month old :-)

Seriously, last summer, when Anne was in Therasuit therapy, one of the exercises they did with Anne was to get her on all fours on the treadmill and physically move her hands and knees in a crawling position. Not only could she TOTALLY NOT do that movement on her own, but she screamed the entire time, seriously, she screamed.

Now, she can transition from side sit up to all fours (or I should say three’s – because her left arm cannot straighten all the way to the floor) and she can move her knees… right, left and then she falls. But she’s doing it!

I’m continually amazed at the complexity of the brain and how just how much damage Anne sustained. A healthy brain controls the muscles necessary for crawling without the person even “thinking” about it. It’s taken Anne over two years of healing to regain the (limited) use of some of those muscles. But the healing is still happening. And it’s exciting :-)

Lost December

I’m just tired of being sad. This December, I sorta went into an apathetic shell. Thinking back, I think I was just protecting myself from the grief that comes around the holidays. But that shell just got sandblasted. I just need to learn that it is okay to be sad during December.

In 30 short minutes, a new year will be here, and I feel a bit sad. But I’ll say that sadness is a notch better than apathetic, because at least I’m feeling something :-)

But don’t worry. God is here. He always is.

May Anne continue to make progress in 2013! And here is my list of “gratefuls” for 2012.

Key Lime Pie
Good neighbors
Anne’s crooked smile
Eric’s job
Canon’s enthusiasm
Special time with Kate
Therasuit Therapy
Erin and Stacy at church
French Horns… (I love the melancholy tone of a french horn)
Late night movie watching with Eric
My Wednesday bible study group
Mrs. Bush (Anne’s para-pro)
my new iPhone

and finally… the story of Joseph (from the Bible).

God is good. Happy New Year.

Day 15 of Therasuit therapy

We are finished!!

I am very impressed with this program. Anne made significant progress in the three weeks. It really is amazing. She is VERY proud of herself.

Here are a few videos…

This is one of her walking with a cane. The therapist is moving the cane for Anne and lightly touching her left side. Anne is supporting all of  her weight – the therapist is only giving her cues to help her balance.

This second video is a sample of some of the exercises she performed. Her left foot is attached to a pully with weight on the end. She started this exercise on day one with .5lbs of weight. Her left leg was extremely weak, but it has gotten stronger… she is pulling 4lbs in this video! It’s the last day, so we celebrated by letting her eat potato chips… her favorite food :-)

What I’ve learned during Therasuit therapy…

Five things…

1. Anne CAN put forth effort. I’ve seen her grit her teeth and wrinkle her forehead as she strains to move her left arm. Seeing that effort has to be one of the most encouraging aspects of these last three weeks.

2. Anne has a fierce temper. Anne is soooo stubborn and gets angry when she feels unstable – which is most of the time. Today, while she was doing squats, she got especially mad and started to yell something ugly (which she knows she is not allowed to say). The therapist asked her to do 10 squats. Each time she would say the “forbidden” phrase, we would have to start back at 1. She got to 5 – and then she yelled it: “I’ll bite your butt!” So we started over. She got to 2 – and yelled again: “I’ll bite your bu-!” She thought if she left off the ending “t,” it wouldn’t count. But we started over. We got to 3 and Anne started to yell, and then thought better and said, “I’m MAD!” Victory. Anne exhibited reason and self control. Amen and Amen.

3. Anne has many obstacles to overcome. The greatest of which is fear. Anne has the physical ability to walk with the least amount of assistance. But she can’t overcome her feelings of  fear each time she feels the slightest bit off-balance. If Anne walks independently one day, it will come after years of “persevering -never-giving-up-hard-work.”

Which leads me to the fourth thing I’ve learned…

4. I can’t believe I’m writing this, but… I wouldn’t trade Anne’s broken body for her former healthy self – simply because of the character she will develop in overcoming her disabilities. Special needs children have amazingly strong spirits because of the amazingly large obstacles they have to overcome. Anne has put forth an inspiring effort over the last three weeks!

I confess that I’ve spent way too much time focusing on my “seen” circumstances instead of the “unseen” promises in God’s word. I’ve been overwhelmed thinking of how much work it will be for Anne and our family to continue her recovery. But just as I take pleasure in seeing Anne’s effort and perseverance so does God take pleasure in me – even in my weakest efforts. The key is leaning on Him for strength for the moment – and not worrying about where the strength for tomorrow will come from.

So the fifth thing I’ve learned…

5. Living in my own strength leads to exhaustion and burn-out. God has given me circumstances that force me to lean on Him. Even though I hate it, and get so angry… and stubborn…  and I feel like yelling, “I’ll bite your butt!” – I’m thankful that God would care enough for me to give me such an honorable task as to care for a special needs child. And for this, I am grateful :-)