Kate

The view from my front porch

Do you see that house across the street? Our good friends live there. They have three children. The second-born is Canon’s close friend, Joel. And the youngest is Natalie, who is only 6 weeks younger than Kate. The blue car in the cul-de-sac belongs to my mother. She lives in the basement of that house, in a two-bedroom apartment that our friends have rented out for years. We have much-needed support directly across the street.

Last week, I saw Canon, Joel and his older brother, Parker, race across the cul-de-sac on their scooters, hop up on the curb, run and then collapse in the green grass. The three of them wrestled a bit and then just relaxed. I can only imagine what they talked about as they lay in the soft grass. I thought of how much those boys have shared together. We stayed with this family after the accident. They let Joel stay home from school to be with Canon when he was released from the hospital. I remember the first time the family got to see Anne. There were strange tubes coming out of Anne’s nose and head. Her hair was a matted mess. But Canon turned to Joel and said, “Isn’t she beautiful?” Joel just nodded. He knew better than to argue.

Every afternoon Canon and Kate get to play – HARD – and live life at their pace with great friends. This allows Anne to stay inside (which she’s always preferred) and live life at her slower pace. And because Canon and Kate have such freedom, they are more inclined to slow down and sit with Anne. It’s a good balance, and a good life for Canon and Kate. And it makes me very thankful!

Standing in the swirling

Life swirls… Hence, the long break between posts ;-) But lately, I’ve experienced something extremely rare… at least for me. I see it – the whirling and swirling – but I’ve been able to stay calm and still. It’s very strange actually – to stand still while life moves fast. I’m trying to savor it :-)

Last week was crazy. C-R-A-Z-Y. But I managed to breath deep and just ‘be.’ Here’s a funny example :-) Anne had an important doctor’s appointment last Wednesday morning. I try to schedule her appointments right after carpool, so that (hopefully) no time is wasted, and everyone’s on time. We arrived (early, no less) to school, and Kate declares, “Uh-oh mommy, I don’t have my shoes.” WHAT? How do you leave the house without shoes? Seriously, HOW DO YOU LEAVE THE HOUSE WITHOUT SHOES? But I decided that a temper tantrum would help no one – so I sent Kate in without her shoes and took Anne to the doctor. They found Kate some shoes in the lost and found, and everyone was just. fine.

Life’s too short to worry over forgotten shoes. Life’s too short to stress over report cards and real estate agents (our house is on the market again).  This past weekend, my best friend and I took a road trip to a country music concert. We were surrounded by kids in plaid drinking beer. I felt very out of place. But we had FUN. And just like deciding not to freak out over Kate’s shoes, I had to make a decision to just relax and have fun. We laughed, danced, sang and laughed some more (especially at the plaid, drunk kids). It was good.

There was a moment during the concert when I experienced that rare sensation of standing still and watching the swirls. There were lights flashing and drums blaring and drunk boys screaming – and I just stood – and was grateful – for a life beyond the noise. Because in the middle of all the craziness… there is abundance of life. You just have to know where to look. Stand still, block out the swirling, and find the cross – rising above it all, singing its love song – and know peace.

“Be still, and know that I am God.
I will be exalted among the nations,
I will be exalted in the earth!”
The Lord of hosts is with us;
the God of Jacob is our fortress (Psalm 46:10-11).

A day in the life (cont.)

Well… after wrestling with Canon & Kate for an hour, getting dinner on the table and sitting with Anne for the last hour – just talking. I’m tired. Which is the way it usually goes in the evenings…

Thankfully, Eric puts the kids to bed around 7pm so I can decompress for a bit before we hit the hay at the ghastly hour of… 9pm.  Seven is almost here… Ahhhhhhhh.

All in all… It has been a really good day!

A day in the life

Canon and Kate started back to school yesterday, but Anne’s school doesn’t start until next week – which leaves just me and Anne together all week. I thought it might be fun to document what a day with Anne is like :-) So here goes…

6:05am – alarm goes off. I hit the snooze button (twice).

6:25am – get up, get ready – pack Canon and Kate’s lunches and make their breakfast. I’m spoiling them this week with fresh pancakes hot off the griddle. They better not get used to it.

7:00am – pry Kate out of bed – argue about tights vs. socks – force her to brush her hair and help Canon change the turtle’s water (we are turtle-sitting for a friend …that’s another story for another day).

7:15am – get Anne up, change her pull-up and carry her downstairs to the van while herding Canon and Kate in that direction…

7:45am – drop Canon and Kate off. Anne tries to talk to the guy helping with carpool… “How are you? You sure are doing a great job…” But he doesn’t notice. sigh.

8:05am – arrive home and make breakfast for Anne. She wants sausage and waffles – with syrup. It’s bath day so I let her have the syrup – but I can’t sit with her while she eats – she makes too big of a mess – so I sit at the computer and eat my oatmeal while checking my email.

8:30am – wipe the syrup off of Anne’s face, hands, clothes & table – And I let her watch Curious George while I decompress for 30 minutes.

9:00am – It’s poopy time. I give Anne one glycerin suppository and carry her to the potty. We sing songs and play pretend games while she works to pass her bowel movement. We sing the “Days of the Week Song” and I’m shocked that she remembers that it’s Wednesday. Every day we go over “yesterday, today and tomorrow” and talk about the unique aspects of each day. She has a hard time with time concepts – that’s typical for frontal lobe brain damage – but today… she remembered! Yeah!

She thinks she needs another suppository to pass more – so I give her one more suppository and sure enough – she had to go more. After 30 minutes… she’s done. That’s actually pretty quick. (Note… glycerin suppositories have zero medication – they simply act as a physical stimulant… Anne still needs a little bit of help to get things started)

9:30am – clean up kitchen from breakfast and put a roast in the crock pot while Anne plays on her ipad.  I had to borrow  ingredients from my mom – who has her own apartment in our basement. She’s still asleep, so I have to be super quiet – I’ll tell her I stole vinegar worchestershire sauce later – when I give her a birthday card. She’s 73 today… she can sleep as long as she likes! By this time, Anne’s already had two seizures. The last one was a bad one – which means she comes out of this trance-like state extremely agitated. Much crying and slapping and biting. Ugh. It’s bath time…

10:00am – Let Anne play in the bathtub while I clean the bathroom and straighten the kids’ rooms. I check on the turtle – who has gone poopy in her fresh water. Typical. Next up… I have to wash Anne’s hair – which is my least favorite thing to do – except for maybe brushing her hair. Her head was hyper-sensitive before the accident – and unbelievably – it’s even more sensitive now. She screams and thrashes the whole time – I try to restrain her so at least something stays dry in the bathroom – but by the end… I’m soaking wet and we’re both upset. And then I have to brush her hair – it’s easier to do when it’s wet – but she still hates it. hates. it. Again, I have to hold her right hand as she tries to pull the brush from me. But she’s left with beautiful, tangle free hair – and I’m left needing a glass of wine – too bad I don’t like wine ;-)

11:00am – This is our special time. I read to her, and then we review her sight words. Then, I make sentences with her sight words and she practices tracking the words left to right. It’s hard for her to see the words on the far left… so we practice as she points to each word as she says it. This is hard for Anne. So I reward her by letting her lie down on her tummy and I rub and stretch out her legs and feet. She gets sleepy, so I lie down with her and we’re both asleep – and bam – we wake up and it’s after 12pm. Anne has an OT appointment at 1pm, so we start scrambling :-)

12:15pm – I change Anne’s pull-up and put on her braces. I don’t have time to fix her lunch, so we head to Wendy’s. She eats better in the car anyway. I don’t know why.

1pm – OT – and 45 minutes of freedom for me. I run to publix to grab a card for my mom + extras of all the ingredients I had to borrow from her this morning. I get back to the OT office to find that Anne has worked a puzzle she has struggled with in the past – but this time she did it easily. Progress. We like it!

2pm – I have 45 minutes until I have to pick up Canon and Kate – so Anne and I run a few errands. Anne talks to everyone she sees. She’s always so sweet to strangers. She forces me out of my introverted shell… and then we head to school. In the carpool line, Canon’s teacher asks to speak to me. Great – this is either really good or really bad – thankfully, it’s really good. In bible, his class is discussing Jesus’ parables, so after talking through the parable of the sower (Matthew 13), Canon’s teacher asks the class –  how would you classify the soil of your own heart? rocky, thorny, good? Canon’s answer: I hope my heart is good soil… but I’m not sure. His innocent humility touched his teacher, and she took the time to share with me. You gotta love that.

3:25pm – We all get home and give Me-Ma her birthday card (along with more Worcestershire sauce and Apple Cider Vinegar) and promise to take her out for a good meal this weekend. Anne always spends an hour with Me-Ma in the afternoons, so I can spend time with Canon and Kate and get dinner started. But today.. I have a meal in the crock-pot, so I’m writing this blog post – which has turned out to be really long!

It’s time for me to play with Kate. I’ll finish out the day with an evening post…

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 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.

 

Random Monday Ramblings

Sorry for the silence. Canon and Kate had fall-break last week (while Anne’s school was still in session) so I tried to make the most of my time with just those two. I think we squeezed a lot in our mornings, and the two munchkins had good attitudes as they went to all of Anne’s therapy sessions in the afternoons.

Time has a way of healing. When I look at Anne – I see more of our ‘new’ Anne and my longings for the ‘old’ Anne aren’t painfully sharp… they’ve become dull. I don’t think the longings will ever go away – especially as I open my fingers to acceptance more and more. But acceptance is coming easier, and the longings seem more like happy memories than sharp reminders of loss. Time heals.

God is sweet to open my eyes to His work in Anne. She has a way of bringing blessing to others – complete strangers are taken with her. We’re often late as she engages anyone (who will listen) in conversation. We were at Canon’s ballgame on Saturday, and a woman I barely recognized walked up and didn’t speak to me – but to Anne. Anne remembered her name (I sure didn’t), and the woman had remembered to bring Anne a gift. Anne beamed as she held her new, pink, little Mermaid workbook.

I think it’s a privilege to be Anne’s mom. I’m awfully grateful ;-)

Happy Birthday Anne!!

Today was Anne’s 7th birthday! I can’t believe my little Anne is 7!

Anne has been telling everyone all week that her birthday was coming up.. “My birthday is September 9th. I am turning seven!” Last year, she wasn’t able to express much emotion, and I remember wondering if she even realized it was her birthday… She’s come a long way over the past year!!!

I’m not very good at planning social events – so my kids’ birthday celebrations have always been more practical than extravagent :-) But I really wanted Anne to feel special today. The birthday festivities started at school. She had a large “Happy Birthday” sign on the back of her chair. I signed up to be the “Mystery Reader” for her class. I was impressed as Anne sat still and attended as I read her two favorite books to her class. I brought a special birthday treat for everyone, and after the kids finished, we all sang “Happy Birthday” to Anne. I wish I could have gotten a picture of her smile. It covered her whole face. She was radiant. When the class finished, she said, “Thank you everyone for singing Happy Birthday to me.” So sweet.

I invited some of her favorite girls to come over for a small dinner. Again, I was impressed when she tried to smile for the camera. Anne hasn’t quite learned how to smile on cue – but she was sure trying in this picture!

Kate had a good time helping Anne open all of her presents.

I think she felt special today. Happy Birthday Anne!!!!

Sisters

I was with a gal a few days ago, and she was talking about her relationship with her sister. “It’s just easy. She can look at me and tell me that my shirt makes me look fat, and I just go change. That relationship is forever.”

I hope so. I pray for Kate and Anne. Their roles in the family are all topsy-turvy since the accident. Kate has more of a big-sister role. She’s so sweet to Anne – helping buckle her in the van, going to get Anne a pull-up, carrying Anne’s bag upstairs. And Anne hates it. It’s just so hard for her to accept help from her little sister, so sometimes Anne is mean to Kate. And Kate just looks at Anne and says, “Oh, it’s alright Anne. I love you.” At least Kate does that most of the time. Other times she cries, and sometimes she’s mean right back!

But then I see moments like today… It was just me and the girls in the van. Kate looked across at Anne and said, “Anne, I miss you. Do you know what I mean? I miss the Anne that doesn’t have a brain injury. You have a brain injury, Anne. You know that, right?” I’m holding my breath… waiting for Anne’s response. Anne reached over to grab Kate’s hand, and said, “We’re sisters Kate.” I breathed out… “Oh Jesus… thank you. And please, let it be forever.”

School update

Well… Sweet Anne is having difficulty inhibiting her talking and frustration level in class – especially when she gets tired. It’s all understandable. I am meeting with several of Anne’s teachers and therapists on Friday to work out a strategy that is best for Anne.

Please pray that God would give everyone a flexible spirit and grant us all wisdom and clarity regarding Anne’s schedule and behavior strategies. I’ve already had a good conversation with Anne’s primary case manager and her para-pro. I’m encouraged that Anne is surrounded by advocates who truly want what is best for her!!!

Canon and Kate are also doing well… But Canon is struggling a little with not having “immediate” friends. I think he expected to be best friends with everyone in his class by the second day. He’s learning a good lesson about how to make friends – and I’m thankful he can learn in a safe environment. The kids in his class are super sweet, and I’m sure Canon will have plenty of friends soon :-)

It’s never boring around here!!! -kathryn