4. At Home

Life has been very good lately…

We had a wonderful visit with family yesterday. Eric’s family from France are in the States for a few days. As we gathered with everyone, Anne seemed more lucid. Her eyes were bright, and she seemed less impulsive than usual. It was a good time.

This morning, Anne’s PT visited. It is so clear that she is God’s provision for Anne right now. She spent extended time with Anne, and Anne seemed to perform well for her. The PT is genuinely excited to work with Anne which is so encouraging to me. She’s so knowledgeable and experienced. I’ve learned so much from her already!

One interesting observation she made was that Anne’s muscles have good strength and seem to work well. Her brain just needs to be rewired to move them correctly. This requires that we are consistent with her exercises. She seems to learn quickly – but she doesn’t carry over new skills from day to day. Repetition and consistency are very important for Anne – two things that I do not excel in.

So please pray that I might be disciplined to do Anne’s exercises and also creative to see ways I can incorporate ‘therapy’ into our daily activities.

One last thought. I’ve had more peace about Anne than ever before. I think it stems from two things… First, acknowledging that Anne is forever different is a step toward acceptance – which is one of the stages in grief. In other words, I don’t feel as weighed down by grief as much as before (that could change, but for now, it’s nice :-). Second, I feel like I’m resting more in God’s hand and plan for Anne. It’s easy to place my trust in good things – like therapy, nutrition or Anne’s progress – but ultimately, God has the final say about Anne’s life. It’s refreshing to find rest in God alone.

Thankfully, kathryn

A different Anne

This evening Canon and Kate built a little train in the driveway made of a bicycle and two tricycles. They connected all three with bungie cords. Kate and Canon rode on the first two with the third empty. Canon then stated enthusiastically: “when Anne is well, she can ride with us!” Kate and Canon had so much fun with great laughter as they rode in big wide circles while the funky train weaved back and forth with only moderate control. I so wanted little Anne to be a part of the joy that kids experience in this kind of play. . . . .maybe one day God will bring Canon’s wish to our minds as we see Anne playing with her brother and sister. . . . .

Since Anne has been home all day these past couple of weeks, Anne’s deficits are more apparent. Canon has been more sad and moody. Noticing the change, Kathryn asked Canon why he was feeling down. Canon said: “Anne just seems so different. I can’t play with her like I used to, and when I try to talk to her, she starts talking about something else.” …meaning that Anne has a difficult time staying on topic.

We’re all very sad that Anne is so different. She’s not only different because of her physical and attention deficits, but her personality has shifted as well. Simply put, all the intricate connections in her brain were changed by the injury.

On the flip side, we get to watch God build Anne into what He wants her to be. He cares for her more than we can imagine. He has already called an OT, PT and Speech Therapist to work with Anne while she is home. These women individually felt God calling them to use their skills to help Anne – and stepping out in faith, God is using them to richly bless our family!!

-kathryn and eric

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

Smart Girl!

We have a little game of riddles that we play as a family. I read the following riddle and ANNE guessed the answer before Canon or Kate had any idea. See the bottom of the post for the answer: “After a shower you may see someone who is wet holding me. Like wind in your hair you feel me, but much more controlled you will be.”

Canon and Kate were trying to remember the verse 2 Peter 1:21. While they were struggling, Anne spoke up and said it perfectly! We all just looked at each other and all hugged Anne!!

We have noticed that little Anne seems to have all of her smarts and intellectual ability, but her capacity for appropriate responses can at times be hidden behind her inattention and impulsivity.

Our little Anne now has the distinguished crown as the LOUDEST person in our family! It is really quite amazing considering that for so long Anne was so flat, monotone, and quiet. Now, she is so the opposite. So much joy and emotion. She really loves to yell and scream for joy with laughter and smile. She really gets excited when we play music!

We are praying for:

  1. Anne’s oral fixation, impulsivity, and inattention to decrease
  2. Standing and walking
  3. Anne’s heart to be filled with God

answer: hair dryer

eric

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

Graduation time!

Tomorrow is Anne’s last day of Day Rehab. They’ll even hold a graduation ceremony for Anne at the end of the day!

The Day Rehab program has been excellent for Anne, but Eric and I both feel good about Anne moving to the next phase of her therapy. She’ll transition to more traditional out-patient therapy. She’ll also go to Kindergarten in the public school system – where they are more equipped to serve Anne.

I don’t know what our new normal will look like. It seems like we will be juggling lots of therapy appointments with school and rest. Poor Anne still gets so tired.

We’re praying that God will bring just the right people into Anne’s life that He can use to push her forward in her recovery. She needs firm, kind therapists and teachers. She needs an especially good speech therapist that will help her reach her potential as she continues to struggle with low attention and increased impulsivity.

There are so many unknowns. I have felt very overwhelmed this week. God has met me through the kindness of friends who drop everything to come help me do laundry, or watch the kids or bring me lunch.

Even though I feel anxious about all the unknowns, Eric is so good about reminding me of what is true. God KNOWS – and He is doing good for our family.

Thank you for praying with us… for just the right people to help Anne – and for the grace to believe in God’s good plan for Anne and our family. Thank you – kathryn

Good Scans & Good Plans

CAT Scan today – the doc said Anne is fine – doesn’t want to see her again in 6 months!! Praise God. The fluid on her brain seems stable, no extra pressure.

i continue to be humbled and amazed at the wonderful outpouring of love for little Anne and our family. So many of you reach out to us even though you have your own difficulties to endure. This continues to impact me and change me.

The current rehab program is not seeing Anne make enough progress to want to extend her – they suugest she just needs time, and a different type of therapy where she can have more dedicated one-on-one sessions. We feel a real peace about this; that little Anne needs a change.

In so many ways Little Anne’s progress has slowed. She continues her oral fixation, and regressed in her eating, and doesn’t seem to be improving in her focus/attention. This is new ground for us. We have given some lip service to the possibility that Anne’s journey may plateau, but had not faced it until now. We cling to God’s promises and seek to stay in present rejoicing in His goodness.

. . . . . then He let’s us see glimers of great hope and reminds us that we are on His timetable, not ours . . . . Anne’s emotions have really begun to change – higher highs and lower lows, gone are the distant, flat expressions – given way to squeals of delight or sobs of sadness or passionate yells at her sister. Sweet Anne also stood (with braces) at the bedside with only her right hand helping to balance her for almost 10 seconds!!

So maybe the changes are still occuring, on the inside, maybe a foundation of neurons are being laid for upcoming new growth. Regardless of whether there is advancement or retreat in little Anne, i was reminded this week of Ecc 12:13 – i may not know or understand His ways, but He is good and He asks me to revere Him in all i do.

keep praying!

-eric

Grief & Joy

Anne continues to make very slow progress. And I continue to experience a very paradoxical life…

I experience both grief and joy daily. Not just a little grief and a little joy – no, the kind of grief that feels suffocating – and the kind of joy that fills you with awe.

The only way I manage to stay sane is to stay in the present. I feel like God is teaching me to wait and trust. Every morning, I ask God for strength to do both. He is faithful to sustain our family. He gives strength for the day with the joy of His presence sprinkled on top.

We have so much to be grateful for as Anne slowly emerges and shows more emotion…

On Sunday night, she was crying – the hardest I’ve seen her cry. She explained that she was thinking of a little boy in her Sunday School class that had been crying because he missed his mommy …so sweet.

Her joy is infectious, especially when she’s playing with Canon and Kate. They love her so much – showering her with kisses, tickles and hugs. She’s witty and has the cutest laugh. She loves to tell Knock-Knock jokes.

She’s refreshingly straightforward. The other evening, I was challenging her to walk a certain distance. In the middle of me ‘encouraging’ her to take a step, she said, “You’re commanding me. Why are you commanding me?”

She gets frustrated with Kate when Kate gets a little rambunctious. Yesterday Anne hollered, “Feet to yourself, Kate!”

We do love Anne so, but work each day to remain open handed before God. She is His – to do with as He pleases.

So we wait, and we trust. -kathryn

FYI: Her CAT scan is scheduled for 9/28…

CT Scan & fluid

Anne had a CT Scan and an appointment with her neurosurgeon yesterday. (By the way… Her neurosurgeon is AWESOME!) Anne’s got a little fluid on the left side of her brain. This is common with TBI patients, and her doctors have been monitoring it closely.

Her scan from yesterday showed that the fluid had increased slightly. If it continues to increase, she will need surgery to remove the fluid. Her neurosurgeon wants to monitor her brain closely, so she’ll have another scan in a few weeks.

Can you guess what our prayer request is? Yes, please pray that the fluid will decrease, so Anne does not have to endure another surgery.

Thank you :-) -kathryn

5 month update…

It’s been five months since the accident. Anne has made rapid improvement in so many areas – and we are now beginning to see what areas of her brain are the most affected by her injury.

Anne struggles most with attention. This affects everything she does, thinks and says. It’s difficult for her to hold a thought for very long and for her to focus on a task without getting distracted. Her lack of attention has a negative impact on all areas of her rehab – she can’t focus to walk, or put a puzzle together, or wait her turn. She actually has so many strengths. Her memory is in tact; she has excellent reasoning skills; she remembers how to read simple words, but her lack of attention prevents her from doing what she knows how to do – or from learning how to do new tasks.

Another area in which Anne struggles is impulsivity. Lack of attention and impulsivity go hand in hand. Whatever Anne thinks, she does. She doesn’t have the focus to inhibit her impulses.

Actually, her impulsivity has improved dramatically over the last few months, but it’s still an issue for Anne. Thankfully, Anne doesn’t think too much about inappropriate things. She cares about people, and that is demonstrated in her impulsivity. Let me give you an example:

Last night we were at the ballfield waiting for Canon to finish practice. She asked everyone who walked by, “What’s your name?” If someone stopped to answer, she would engage them in conversation and then as the person started to walk away, Anne would say, “Will you give me a hug?” Anne got lots of hugs last night :-)

These are impulsive behaviours from a very sweet six year old. We are so thankful for Anne’s innocent spirit and her ability to endear herself to others!

Please pray that:

  1. Anne’s attention would increase so that she could work hard to get better,
  2. Anne’s impulsivity would decrease so that she could communicate more effectively to her peers and others, and
  3. For Anne to KNOW God’s love and care for her.