Excerpt of tonight’s dinner conversation…
Kate: I’m full. Can I have dessert?
Eric: Kate, if you’re full, then you don’t have room for dessert.
Canon: Well, I have a part of my tummy for regular food and another part for dessert.
Eric: You know, cows have multiple stomachs, and the last time I looked (and I’ve looked quite closely…) you are not a cow.
Kathryn (to Kate): Do you think Canon looks like a cow?
Kate: No!
Anne (to Canon): You look like a cow, Canon.
As i type this, our little Anne is sitting on the sofa right next to Kate and Canon talking and singing about all sorts of topics. The things she says continue to slowly inprove in their context. She just seems a little more “with it” regarding her ability to understand what is happening around her. She occassionally says very funny things that make us all laugh and laugh, and Anne just loves this. . . . . then she will re-state the funny to ensure she milks all of the laughter she can from us. She gets a huge smile across her whole face during these episodes, and i think seeing her smile just brings such joy to our hearts it gives us the freedom to laugh even more.
We went to the pool today and Anne seemed actually excited about the trip. It appeared she was thinking about the future just a little bit – actually anticipating something beyond the immediate present.
Little Anne still really only has use of one limb – her right arm. Her left arm will occasionally move, and while she can move her legs, the high tone is preventing much progress in the way of any standing or walking.
Please pray for her mind to sharpen, and for her memory to improve. Little Kate prays every night that Anne would “soon be able to walk, and run and dance”. We so look forward to that day!
-eric
…Anne is home. Anne has really done so well adjusting to home – even with the juxtaposition of having many new experiences for Anne mixed into the familiarity of home:
Canon and Kate have been really sweet and are always wanting to assist Anne. Anne pokes their eyes, pulls their hair, and squeezes their noses, but Canon and Kate just love on her. Tonight Kate said to Anne right after Anne pulled Kate’s hair – “I love you, Anne”. Somehow at 4 years old, Kate understands where Anne is in her recovery and is willing to be on the journey with Anne – only God could make that happen.
Pray for Kathryn – it has been hard: While at the hospital, the comparison was the miracle of Anne moving from the stillness and silence of the PICU to Anne’s speech and movement while at inpatient rehab . . . . but at home, we are much more reminded of (and mentally compare her to) Anne’s little person prior to the accident. So we continue to have joy through some tears when remembering the past . . . . but we know God calls us to be in the present with Him . . . . and Anne.
The day rehab program starts on Monday, so our journey continues. . .
Pray that Anne will continue to heal! We have three goals for our stint at day rehab – Reading, Writing, and Walking. Please pray that God heals Anne in these ways.
-eric
It’s interesting how the dynamics between Canon and Kate have changed while Anne has been away… Canon and Kate are both more easy going and fun loving than Anne. Before, Anne was the little “director,” telling Canon and Kate just what characters they would play in that day’s version of pretend. Canon and Kate rarely fought. It was typically passionate Anne that sparked conflict with either Canon or Kate.
Now, Canon and Kate fight constantly. There are obvious reasons for this – as their world has been turned upside down – and all the grief and anxiety plays out in their bickering. But alot of their conflict simply comes from Anne’s personality not being here to direct them. It’s as though they are lost without their director to tell them how to play…
I think it will be equally difficult when Anne comes home…
Physically, Anne is the equivalent to a six-month-old baby (with only one working hand). She sits, but is still wobbly. She explores with her hand – grabbing everything and putting it directly in her mouth. She can feed herself with her fingers, but can’t use a spoon or fork. She requires diapering and has to be carried everywhere.
Cognitively, Anne expresses herself with the simplicity of a two-year old, yet has more advanced people skills than even her old self. She has lost her shyness, has impeccable manners, good conversation skills and a sweet smile :-)
Please pray for our whole family as we make the transition to bring Anne home. I will have to lean on Canon and Kate to help me keep Anne safe. Kate might have difficulty having more of a “big sister” role with Anne – especially dealing with her physical limitations. Please pray for us all to adapt to our new family life.
Despite the challenges that are ahead, we’re still very excited :-) Two days ’til Anne comes home!!!
Expectantly, kathryn
Anne on her outing
Anne did well on the outing. It was emotionally difficult for me – which took me by surprise… We went to “story time” at a book store. Several toddlers were there. Being around ‘normal’ children highlighted the fact that my Anne is very much a ‘special needs’ child.
We’re still in limbo. We don’t know what Anne’s endpoint will look like. She’s still very much “progressing” in her recovery. It makes it hard to grieve, because if I grieve what Anne’s lost, well – she might gain it back a few months later. We just don’t know.
I strive to stay thankful for the present. God is so faithful and so good to our family. Yesterday, Canon said, “Mommy, today has been a blessed day. God is humble enough to do kind things for me.”
Good words from a 7-year-old boy.
-kathryn
I’ve been thinking alot about Anne’s progress… She’s come a long way cognitively, but physically, aside from head control, she hasn’t shown much improvement over the last 3 weeks.
I think she is struggling with fear. She cries whenever we lift her or move her. She cries when they stand her up or work on walking. She even cries when she is sitting – unless her back is fully supported. EVERYTIME I pick her up, she says to me, “Mommy, promise you will never drop me.” I think if she can overcome the uneasy/unsafe feeling she has when she is moved, she will make great strides physically.
Please pray that she will overcome her fears.
On a different note, Canon and Kate have both had stomach viruses over the last few days. I really pray Anne, Eric and I do not get it – especially Anne!
-kathryn
We have a discharge date… two weeks from today: 6/17.
We are both excited and nervous. Eric is mostly excited; I am mostly nervous :-)
I’m overwhelmed by the prospect of bringing Anne home as she is now. I want her to be so much further along, but she does have two full weeks. Alot can happen in two weeks!
I think it will be good for the whole family to have Anne home. Canon and Kate are starting to tire of being away from both home and mommy so much. And I think Anne will benefit from being at home.
Anne’s next step after she is discharged is Children’s Day Rehab program. She’ll be in a rehab facility (just across the street from the hospital) five days a week from 9am-3pm. It is a drop-off program that is like school with much structure and group activities. We still don’t know if or how much our insurance covers, so please pray that God will provide either through insurance or other means.
In the interim, we’re praying for God to give Anne a major “boost” (Canon’s word) in her healing, so that caring for her at home will be more joy than burden for the whole family. Specifically that she would be able to:
These are my hopes for her before she comes home. She’s already come so far – Two weeks ago she hadn’t spoken her first sentence and her eyes had just started to move. I pray God surprises us in these last two weeks!
Thank you for walking this journey with Anne and our family.
-kathryn
Today was exhilarating and heart-wrenching all at the same time…
I had many conversations with Anne – yes, I said CONVERSATIONS!!!!
Me: “Anne, it’s time to get in your chair.”
Anne: “There is no reason for me to get in my chair.”
Me: “Yes there is. You need to go to your physical therapy session. You need to work really hard and do your best. Ok?”
Anne: “Ok, mama.”
Me: “I know it’s frustrating when you can’t stop your hand, Anne. It’s ok.”
Anne: “IT’S NOT OKAY!!!!!!”
Me: “God has a good plan for you, Anne, and He is helping you to get better.”
Anne: “I AM NOT BETTER!!!!”
Anne: “Mama?”
Me: “Yes, Anne?”
Anne: “Do you really love me?”
Me: “Oh yes Anne. Now more than ever.”
It was an amazing day. But my heart breaks for Anne to see her struggle with her mind and body. Please pray against discouragement and frustration. Pray that Jesus will be close to Anne.
Her largest struggles right now involve control. She can initiate an action with her hand, like scratching her nose, but then she can’t stop it. This is extremely frustrating for her. When’s she frustrated, it’s hard for her to control her words, so she still cries alot.
Sweet Anne has come so far – we are just praying she makes it through these next hurdles. Thank you for praying with us.
On the way home tonight, Canon said, “Mommy, this was the best day of my life!” Amen to that :-)
More grateful than words can express…. -kathryn
WOW! This morning while feeding her breakfast, grandmom asked Anne: “why are you leaning to the left in your wheelchair?” Anne responded: “I have no idea”. We all gave her cheers and HOORAYS! She then said it several more times to other questions.
This morning she also said four new words: “Me-Ma”(our name for grandmom), “OK”, “Your name is Canon”, and “Daddy”. Wow, what an amazing answer to prayer!! So many have been praying for her speech!
Then Canon sang the song “5 green and speckled frogs” while laying next to her. Then Anne started saying other words that i couldn’t quite understand.
Her words are still quiet and a little garbled, but they are still WORDS!! Praise God for His healing for Anne!
Keep praying for more speech!!
-eric
I spent the morning in Kate’s class celebrating her last day of 3-year preschool. It was a sweet morning with Kate and Canon.
When I got to the hospital, Anne’s eyes were moving… and tracking… and focusing! Her eyes have improved HUGE amounts, literally, overnight! Her eyes aren’t consistently “normal” but they definitely have spurts of normalcy :-)
I can’t tell you what a huge encouragement this is to me. All along, I’ve wanted her eyes back the most. They represent the complexity of my sweet Anne – and I saw slight glimmers of herself in her eyes today. Thank you Jesus!
Please continue to pray:
-kathryn
Crayons In My Water 