Anne

Inner disability

Disability… I never thought I would spend so much time thinking about this word.  Our modern world of tolerance likes to color-coat disability and say… “there’s nothing wrong with them… they are just different.” Hmphf. I totally disagree. There is something very wrong with Anne – and there is something very wrong with all the other children that we know that struggle with disability. Their bodies are broken. How can you look at a disabled CHILD and not think… “This is wrong!!! It’s not supposed to be this way!!!!!”

Well, it’s not supposed to be this way. Disability is just one symptom of our fallen world. Hunger, disease, poverty, apathy – they are all symptoms of the brokenness in our world… and in our hearts.

Anne just wears her brokenness on the outside… The rest of us can hide it deep-down on the inside. There is something wrong with Anne. And with me.

Bottomline… we are all spiritually disabled. Remember the story of Jesus healing the paralytic (from Matthew 9 and Mark 2)? He heals the man’s inner and outer disability. First, He forgives the man’s sins – and then He heals him physically. I’m thankful that Jesus does both!

“So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day” 2 Corinthians 4:16.

Anne is still healing

I’ve been encouraged lately by little bits of progress that Anne is making. All of Anne’s little gains add up to one conclusion… Anne is still healing. I’m so thankful for God continuing to knit neurons together in Anne’s brain!!

Here’s a sampling of Anne’s “small” gains :-)

  • Her smile is starting to include both sides of her mouth – not all the time, but we are seeing that left side of her smile more and more.
  • She is tracking words from left to right more consistently in school.
  • She can stand up out of her car seat all by herself – and scoot herself back into her car seat with verbal cues.
  • She is learning how to stand from a sitting position by first pulling herself from sitting, to kneeling to standing. She uses her right hand to hold on to something for support and balance, and she’s real close to doing this by herself with only verbal cues.
  • She is becoming just a little bit shy… (she was painfully shy before).
  • She is also better behaved in school and is really trying to keep her name on “green” instead of on “yellow” or “red.”
  • She has mastered her 50 sight words and is beginning to learn more.
  • She is counting objects now. This might seem small, but she wasn’t even close to being able to do this last May. I’m very excited!
  • She is ticklish. She hasn’t been in a long time. It’s fun to see her laugh :-)
  • She can lift her left hand from her lap and place it on the table all by herself – without her right hand helping at all.
  • She’s walking farther… 300 feet at school with a walker before she starts to tire.
  • She can sit and listen to a whole picture book being read. She used to close the book after just a few pages.

Anne still has a long way to go, but we are so thankful for her continued progress! If you want to know how to pray more specifically for Anne, I update the top post on my blog on the 1st of every month with new prayer requests for Anne. And if you want to be notified by email each time I update the blog, just look on the right side for the “follow” button.

Thank you so much for your support of our family. We are so grateful!

Pray for Anne…

December 2011’s prayer requests:

  1. For the left side of Anne’s body to regain function… especially her left hand and foot,
  2. For Anne’s conversation skills to improve, specifically to be able to stay on topic for at least one minute :-)
  3. For Anne to gain more emotional toughness… in order to persevere and strive to get better,
  4. And lastly, for Anne to continue to wrestle with God’s goodness and love for her – and ultimately for her to grow to be a faithful woman of God!

Thank you!

Dragon’s skin

I’ve been struggling with the amount of time and energy it takes me to care for Anne. It’s just so demanding and exhausting. But I think what I’ve really been struggling with is that caring for Anne reveals the sinfulness in my heart. It’s hard to care for Anne because I’m selfish and don’t want to sacrifice my time and energy to do for Anne what she can no longer do for herself. I struggle with self-pity, self-absorption and a lust for freedom to do what I WANT TO DO. But. If I can surrender – if I can dive deep into the life God has called me – a life of sacrifice and service – then my life will be full. I know this in my head…

“Whoever finds his life will lose it, and whoever loses his life for my sake will find it” Matthew 10:39.

Do you know how many times these words of Jesus are quoted in the gospels?? Six times. Twice in Matthew and Luke – and once in Mark and John. That’s a lot. Jesus expended much energy in teaching the disciples the lesson of self sacrifice. He knew it was the key to eternal fulfillment. He knows the end of the story… when this world will be turned up-side down and the first shall be last and the last shall be first. He knows. He knows.

I’m reminded of a scene from a novel written by Randy Alcorn. Randy has spent years studying eternal perspective, and back in the ’90’s he published, Deadline, a novel that weaved together much of his research and study. It is the story of three good friends who share different beliefs… an atheist, an agnostic and a believer -and they are in a serious automobile accident at the beginning of the story. The agnostic is the only survivor – but the novel continues to track all three men. As we follow the believer into heaven, the images are breathtaking. One scene in particular deeply impacted me…  The believer who died left behind a son with Down Syndrome. And as we see the dad in heaven, he notices the most amazing music – coming from the largest and most beautiful orchestra and choir he had ever seen. It was HUGE – with countless numbers of people making music for Jesus – and he looked to the podium and saw the choir director – and he was surprised to see – a man – with Down Syndrome.

The last shall be first and the first shall be last. I consider it my greatest calling and honor on this earth to serve Jesus by serving my disabled daughter …But I struggle with self-sacrifice. I feel like Eustace in The Voyage of the Dawn Treader – as Aslan tears deep into his flesh to pull away the dragon’s skin. Just as Eustace was unable to peel the skin off himself, so Jesus has to help scrape away all of my selfishness… He does it because he loves me… and He knows the end of the story… and it’s good.

Still… Relentless

For Thanksgiving, I wanted to bring back a post I wrote a year ago…  about the relentlessness of disability. Out of all I’ve written in these last 19+ months… this is one of my favorites. Thankfully, Anne has improved in the last year, but the heart of this post – both my own desperate heart and God’s ever-faithful heart – are still the same. Thank you for praying for us so faithfully! And Happy Thanksgiving!!!!

November 23, 2010
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!

The cost is high…

I’m so thankful that I spent the first 5 1/2 years of Anne’s life in blissful ignorance. She was a precious child. She still is… just different.

I’ve learned so much in the months following the accident. We must lose our life to gain it… in other words, self-sacrifice is the key to living life to its full. Because of God’s great love for us, he removes the idols of our hearts and gives us great suffering to force our gaze to Him alone. And in return, we find Him all that is good and satisfying… but at Great. Cost.

I look forward to heaven when all the loss and sacrifice will be turned upside down and there will only be fullness and joy. Yes, I look forward to that day!

The Crippled Lamb

I pulled a book off the shelf the other day to read to Kate and Anne. We hadn’t read it in a while…

The Crippled Lamb is a story about a lamb named, Joshua. He was born with a crippled leg, so when the shepherds prepare the herd to travel to the next field, he is left behind as he is unable to make the long journey. The shepherds leave Joshua with his only friend, Abigail the cow. Abigail is old – and wise – and as they make their way to the barn, she gently reminds Joshua, “God has a special place for those who feel left out.”

And then Anne started crying. My sweet Anne, my crippled Anne, identified with Joshua, the lamb.

The story continues as Joshua and Abigail are in the barn asleep and are awakened by a baby’s cry in the night. The baby is cold, and there is no blanket. Joshua offers to lie close to the baby to keep him warm… and then the shepherds appear, excited and proclaiming that this is the Savior, the new born King. And Joshua looks at the baby snuggled against his wool and realizes that this was his special purpose. If he hadn’t been born crippled, he would have missed the Savior.

And Anne cried. and cried. and cried. And I held her close and prayed… thanking God that He has a special place… for Anne.

 

ANNE DID IT!!!!

I’m so excited I could just burst!!!!

At the beginning of the school year, Anne’s Kindergarten teacher sent home information about the “sight-word” challenge. On November 15th, each kid (that wanted to participate) would be tested on 50 sight words, and if the student could read 45/50 words, he/she could participate in a special after-school celebration.

Anne and I have been working diligently since August. It’s taken Anne months of hard work to master the list… And SHE DID IT!!!! She got 48/50 words and gets to participate in the after school celebration today! Isn’t that AMAZING and WONDERFUL! I’m so proud of her! WOO-HOO!!!!!

Thinking of how far she has come… Well it’s miraculous. May all the glory go to God “…who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen (Ephesians 3:20).

What then will this child be?

Yesterday, I wrote about Zechariah and how God brought good from his unbelief when his new son, John, was baptized.

Because of all the miracles surrounding John’s birth and baptism, the people wandered about John. “What then will this child be?” John the Baptist lived in the desert until he appeared publicly to Israel. His dress and diet were typical of a poor desert dweller. His fiery words wouldn’t score him any popularity points. John was not rich in the things of this earth, but he was “strong in SPIRIT” (Luke 1:80).

John the Baptist was no earthly good, yet God used John… MIGHTILY to prepare the people for repentance and faith in Jesus.

This is so typical of God’s Kingdom. The economy is different. Money, power and fame don’t get you very far in God’s Kingdom. His currency is humility, compassion and obedience. Whenever I think about the “upside-down-ness” of God’s Kingdom, I think about Anne…

Anne’s brain injury has stripped her of all earthly good.  But she is STRONG… in Spirit! I take great comfort in this truth. It makes me wonder, “What then will this child be?”  I don’t expect her to be the next John the Baptist!  But I do hope that God has big plans for my simple little girl :-)

Pray for Anne…

November 2011’s prayer requests:

  1. Anne has made many improvements since the beginning of school, but she is still lacking a desire or ability to put forth EFFORT. Please pray that Anne would learn to persevere during difficult activities during both school and therapy.
  2. Anne’s seizures seem to be waning. Please pray they would completely go away without medical intervention.
  3. Anne has been asking TONS of questions about Jesus dying on the cross. She thinks about this all the time and all of its implications… forgiveness, justification, God’s love and sacrifice. Please pray that God would use these questions and wrestlings to deepen and strengthen her faith in Him.
  4. For Anne to continue to do well in school; and for her to gain more control of her impulsiveness which can be a distraction in the classroom (talking out of turn, mouthing inappropriate objects, reaching for and touching others when she should keep her hands to herself, etc.)
  5. For Anne’s left ankle… for it to loosen and strengthen so she can support her weight on her left foot without her braces.

Thank you!