Source of strength

As I was climbing the stairs to bed, my mind twisted its way to worry… “O Lord, how long will I have to care for a disabled child? Her whole life? My whole life? Will there ever be a day when I can trust her to be alone – will the impulsivity ever improve… and her feet? What about her feet?” I stopped myself. And looked for comfort in truth… From Streams in the Desert (June 27):

“The Lord is my strength” (Ex 15:2) to go on. He gives me the power to walk the long, straight, and level path, even when the monotonous way has no turns or curves offering pleasant surprises and when my spirit is depressed with the terrible drudgery.

“The Lord is my strength” to sit still. And what a difficult accomplishment this is! …I feel like the mother who stands by her sick child but is powerless to heal. What a severe test! Yet to do nothing except to sit still and wait requires tremendous strength.

How many times do I turn to God and He speaks directly to my circumstance? So many times. He will supply what I need for today (period). He alone is my strength.

Goodnight.

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“God does miracles”

I was picking my kids up from VBS yesterday, and the song leader was up front reviewing the bible story the kids learned that day. It was from Luke 5 – the story of Jesus healing the Paralyzed man. And then the music started… and all the kids were standing, singing and doing hand motions to “God does Miracles… oh yeah, My God does Miracles!!!” And I became cynical.

Now let me stop and interject something. I have no right to be cynical. I have seen miracles. God saved Anne from the clutches of death, and now one year later, she’s learning bible verses at VBS. That’s a double dose of miracles. Hear me, I’m grateful. Oh so grateful…

But, the kids’ song raises a valid question. Why doesn’t God heal the way He healed when He walked the earth? Continue reading

Unknown…

I feel like that word describes most of my life right now.

Will Anne ever walk again? Unknown
Will Anne ever NOT need diapers? Unknown
Will Anne ever progress past Kindergarten material? Unknown
Where will Canon and Kate go to school next year? Unknown
Will Anne grow out of her temper-tantrum phase? Unknown
How will God provide for all of our needs? Unknown

I could go on and on and on. I’ve never felt so out of control in my whole life.

From a wide angle perspective, that’s a good place to be… broken and dependent on God’s perfect provision. But from a narrow, nitty-gritty perspective – well, lots of colorful adjectives come to mind, but I’ll just say… it’s hard.

Bottomline… I’m struggling with trust. Sweet Canon was weeping over Anne the other day, and I go into my speech about how we are in a dark tunnel, and it’s a hard place to be, but the tunnel WILL END, and God is with us in the tunnel. And Canon just cried, “But I don’t feel Him in the tunnel. Where is He?” And I just held him tight and said nothing, because I’ve been feeling the same way.

Truth vs. feelings… Do we trust in the staff of God’s word? I will never leave you or forsake you… I am with you always. I delight over you. Have I not commanded you…be strong and courageous, for the Lord your God will be with you wherever you go. Where can I go from Your Spirit? Where can I flee from Your presence? I lift my eyes up to the hills. Where does my help come from? My help comes from You, maker of heaven and earth.

Thank you to everyone I see that tells me that you follow us on Caring Bridge. It’s a reminder to me that we are not alone on this journey, but we have myriads of God’s people praying for us.

Would you please pray for the following:

  1. That there would be an end to diapers. That Anne would learn to use the potty again.
  2. That Anne would gain endurance and not get SO tired and difficult in the evenings.
  3. That Anne’s attention and impulsivity would continue to improve.
  4. That Anne’s desire to break the rules would wane, and her desire to obey and do what is best would improve.
  5. That Anne would sense God’s presence and know His love for her
  6. That God would give us wisdom for Canon & Kate’s schooling.

Finally, Anne has been talking alot about what she wants to be when she grows up. Amazingly, her list of professions is the same as it was before the accident. She either wants to be a “cooker” or a “teacher.” Cooking and playing school were her favorite activities this time last year. In fact, the morning of the accident, Anne had taken over the entire kitchen creating one of her crazy concoctions. It was almost time to pick up Kate from pre-school, and I said, “Anne, we have to leave soon. Please clean up EVERYTHING…now.” And she obeyed immediately, with no complaints. Sweet, precious Anne. I’ve been praying lately, that she would grow up to be a teacher. I would love it, if others prayed that for Anne too :-)

Thank you! -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

Feeling weighed down…

I’ve put off updating the CaringBridge site because I don’t feel like there’s anything exciting to report… I guess that’s the nature of Anne’s injury… recovery is slow. I’ve been struggling with impatience lately :-)

I still feel weighed down by the fact that my sweet girl has such a serious injury. Today she looked at a picture of a black dog, and she called it a sheep, and then a horse, but couldn’t find the word “dog.” She has to concentrate so hard to answer such simple questions.

She’s working just as hard physically. Today her PT asked her to bend her left leg. Anne was laying down flat on a mat. You could see her jaw clench in concentration as she raised her left leg straight up, and then after a few seconds she bent her knee in a jerky motion. She repeated this for the therapist a few more times – each time having to concentrate like crazy just to bend her knee.

As I watch her, I feel this strange mix of joy and sadness – I’m so proud of her, but grieved to see her struggle so…

God does give me glimpses of joy. Yesterday evening, a bunch of family came to the hospital to eat dinner together. There was cheerful banter as everyone ate burgers and fries in Anne’s room. Anne just sat gazing at everyone with a content smile. The only reason we were together was because of Anne. That’s a gift that’s come out of this tragedy.

And then today… I took Anne for a walk. Anne can reach up and touch all the buttons for the elevators. I thought back to Anne’s first day in rehab. Her therapist asked her to push a HUGE yellow button. We all cheered as the therapist had to place her hand on the button and she was BARELY able to press it down. She’s come a long way to be able to so easily find and press the elevator buttons! That was a sweet reminder from God.

Perseverance – emotional and physical. That’s our need right now :-)

Please pray:

  1. That Anne would gain endurance and not tire so easily. When she tires, she gets extra emotional, so also pray that she would be able to regulate her emotions.
  2. That Anne would make great strides both cognitively and physically in the next 10 days before her discharge date – specifically that she would be able to sit unassisted and communicate consistently what she wants and needs.

Thank you! -kathryn

Quiet day

Because Anne was up most of last night (poor Eric…) she rested most of today. Her therapists let her rest, so it was a quiet day.

The neurosurgeon said today, “There is an excellent chance that the drain will come out tomorrow.” So we’re hopeful! If the drain truly does come out tomorrow, she could be in rehab as early as Friday – but we’ll wait and see.

I have one funny story to share. Tonight, Eric’s cousin Susan visited. Anne had just had a HUGE bowel movement (yeah!) so the conversation moved to poop. Now – the kids are not allowed to say “bathroom talk” outside the bathroom. They can talk about poopy and tee-tee all they want inside the bathroom – but not outside… So, when I realized that Susan and I were using bathroom talk – I said to Anne (with a mischievious look), “Anne, do you hear us using bathroom talk outside the bathroom? Do you want to do it too?” Then I started singing, “Poopy, poopy, poopy!!!!”

And she smiled – the biggest smile yet. Susan’s husband, Alan, came in and we were all talking about “poopy” and Anne smiled a few more times.

Anne clearly enjoyed breaking the rules tonight :-)

Please pray:

  1. The drain would be removed tomorrow so that we can move to rehab.
  2. Since Canon will be with me at the hospital all day tomorrow, please pray that God encourages him in a special way, and that he will be an encouragement to Anne as well.
  3. That Anne will respond well to rehab (when she gets there).

Gratefully, kathryn

Not a good night…

Wow, not a good night for Anne. She was very uncomfortable and agitated with lots of tremors and crys most of the night. i would get her comfortable, then 15 minutes later she would be crying out for help. i was so worried about her “going backwards”. This started last night around 11pm and lasted until around 6am. Then God put an idea in my head around 6am – Take the blood pressure cuff off of her arm – As soon as i did this – she immediately became calm!! She has now been sleeping for 3 hrs. Anne has always been so sensitive and apparently that arm cuff was REALLY bothering her.

Reading Isa 40:28-31 this AM – such rich words. An insight from the ESV about “waiting on the Lord” – means having faith in God’s promises until the time of their fulfillment – such a good definition to what God is helping us do day by day with MUCH help from all of you supporting us !

Pray

  1. that Anne’s tremors would disappear
  2. that we would be able to remove her ventricular drain tomorrow 
  3. that she would be able to move to the rehab unit this weekend

-eric

Waiting…

Today was an eventful day. Anne had three goals to meet before being moved to rehab:

  1. Good breathing
  2. Good eating (via the feeding tube)
  3. Removal of EVD

As of this morning, she met the first two goals. So the plan for today was to work toward removing her EVD. The EVD is what the neurosurgeon inserted into her head to drain spinal fluid out of her brain. In the beginning, this helped reduce the pressure in her brain.

Over the last few days, the goal has been to raise the drain higher and higher so it drains less and less – and then finally to clamp the drain. After they clamp the drain, they moniter her for 24 hours, do a CT scan, and if everything looks good – they remove the drain.

Removal of the drain equals ticket to rehab :-)

So they clamped her drain this morning, but as the day progressed, I didn’t see her making the tiny steps forward like she had been doing the previous days. Her eyes didn’t impove. Her tremors increased and she just seemed more agitated. The neurosurgeon decided to unclamp the drain and wait a few more days and try again…

So we wait… AGAIN!

But, I think they plan to move her to a room on the neurology floor either tomorrow or Saturday. She doesn’t need to be in ICU anymore, so they will hold her in neurology until her drain can be removed – and THEN she can be admitted to rehab.

God’s ways are much slower than I prefer, but given the choice, I choose the creator of the universe and His plan for Anne over anything I might come up with. He is our good Father, and we will trust Him. He has preserved her life. He has a plan to prosper her, to give her a future and a hope. So we wait and trust.

Thank you for traveling this road with us. We are humbled by the outpouring of love we have been shown. Please pray for anne’s healing and for strength for all of us to persevere as we wait and trust.