We are beginning to understand a bit more of Lydia's journey from her perspective, now that some communication is possible.  It is as if she was asleep for most of the three months. She shakes her head "no" when asked if she remembers her cousins visiting her at the hospital.  She is so joyful - happily sitting in her wheelchair while her cousins climb and play in the tree, just off the deck.  Her smile seldom leaves her face.  Even when we are doing very painful heel cord stretches, she is still positive.
We have invited a few of Lydia's friends to come to visit her, and she has responded with joy.  One friend's dad emailed us to share his daughters thoughts on the visit:

Her 5-minute explanation (with no commas, periods or breaths) clearly told me how Joyful it was to see Lydia!!!   She said she would replace any Christmas morning with her visit with Lydia today!   Also, she was singing a camp song called " And I ... LOVE Jesus" and Lydia did an action (pointing up to God) that goes with the song!   Wow!  We are joyfully praising God for his many blessings today.

God knows the plans He has for her...

We are praising God for so much, and leaning on Him for so much more!

And so are we!  I noticed  again today, the scripture verse that James had put on a sticky note, on our computer screen:
Psalm 27:13  I am still confident of this: I will see the goodness of the Lord in the land of the living. 
Yes,all our hope and confidence is in Him.  He is abundantly able to do much more than we ask; and exceeding faithful in all of His ways.

Isaiah 43:18, 19
Forget the former things;
do not dwell on the past.
See, I am doing a new thing!
Now it springs up, do you not perceive it?
I am making a way in the wilderness,
and streams in the wasteland.

These verses have been meaningful to us in this journey.  We have tried to surrender the "old Lydia", and not dwell on who she was, or what she was able to do.  We have held with open hands, her most recent school photo: the one on the blog spot with her dazzling smile and sparkling eyes, not wanting to cling tightly to that which captured the essence and vitality of the "old Lydia".  

This past week, wow!  Has God ever given us a new Lydia - and many parts of the old Lydie are present.  How could we not perceive this new thing that He is doing?  He is answering prayers and healing Lydia.  He is making a vibrant green stream in the wasteland.  She is remarkably changed.  Her eyes sparkle and her smile is bright and big, and her levels of comprehension are increasing daily.  We stand in awe of this magnificent work of God.   

Today, Lydia continued to interact with us, letting us know with head nods, or pointing, what she wanted.  She worked hard at putting in order some numbered cards, sorting colour, and building with blocks.   She has been working on standing up, and standing tall.  When she is upright, we regularly take those opportunities to hug our girl, and to feel her give a hug (however small) in return.  This evening she surprised us, when we had her standing up, by taking a few steps forward.  We were on either side of her, and could support her the entire way, but she wanted to walk!

Her brothers love their new responsive sister.  They have delighted in teaching her all kinds of hand signs and gestures.  Sam even queried whether he could teach her to scratch his back!  Lydia laughed at Ben's jokes at supper , as she ate the same dinner we did - only hers was pureed.  What a blessing it is to be together.

Home

"Home" - what a beautiful word; and a special place to welcome our girl to today.  Lydia had her therapy sessions scheduled to be completed by noon, so that we could be on the road in good time.  Lydia travels buckled into her wheelchair, and her wheel chair buckled into a transportation van, with a driver.  The passenger travelling home with Lydia sits next to her in a car seat, and can care for her needs.  
Today in Occupational Therapy, Lydia had her name spelled out with magnetic letters.  Then the letters were rearranged, and she was asked to put them in order.  She did so - with great concentration, and some physical difficulty, as it requires finer motor skill to manipulate the letters than she regularly uses.  But she knew the letters, and how to spell her name!  The therapist then gave her the four letters needed to spell the word home, and with some help, she could do it!  She was also able to sort coloured shapes by colour and shape. In addition she is starting to nod for yes and shake her head for no.
At home, her brothers were amazed to see her so bright - they kept asking for props, high 5's, low 5's and hand shakes!
Lydia is joyful.  She smiles, and smiles some more.  At bed time, she would drift off to sleep, then stir, see her dad sitting beside her, smile, and then close her eyes again.  We are so thankful for this gift of joy.
We also thank God for the healing He is doing in her.  It seems like the last few days, Lydia has not inched along, but leapt forward each day.  She enjoyed learning hurdles this spring for track and field, so maybe she is just finding her stride, and learning to clear the obstacles in her path.  May it be so.

Lydia has had another remarkable and full day.  She was visited by friends, her doctor, and The Record was here with a photographer and journalist, to interview us - so be watching your Friday edition for a story on Lydia's recovery!
Lydia has continued to communicate with us, choosing her clothes, her dessert, her free time activities.  It is wonderful that communication is no longer one way (other than smiles, gazes, and facial expression.)  While we long to hear her verbalize, we are thankful for this progress in communication.   Today Lydia walked in phsyio therapy, in a pacer - an assistive walking device.  She did very well, but became tired quickly.  In speech language, she pointed at cards and identified what her therapist asked her to.  She ate all of her purees, and did some tasting of a thick, honey type consistency juice.  She was also dry all day.
Tonight, after tucking her into bed, we noticed that she was pointing up, towards the sky. It was as if she knew the bed time routine, and she was ready to pray.   She folded her hands and we prayed:
Thank you, God for today, for visitors, for friends, and for how hard Lydia is working to get better.  Thank you for your healing, little by little.  Thank you that you are making Lydia new.
And then we closed with our favourite blessing:
May the Lord bless you and keep you,
May the Lord make his face to shine upon you,
May the Lord be gracious to you, and give you his peace.
Amen.

My soul glorifies the Lord
and my spirit rejoices in God, my Saviour, ....
for the Mighty One has done great things for me -
Holy is his name.
Luke 1:47, 49

Holy, Holy, Holy,
is the Lord God Almighty,
Who was, and is, and is to come.
Revelations 4:8

This is our worship this evening, as we marvel at all that Lydia has shown us today.  The Mighty One has done great things in her.  We worship the One who is making all things new.  Truly, He is making her new!

Lydia has been fully present most of the day, answering yes and no questions, by pointing to the yes or no cards taped to her wheel chair tray.  She has been choosing between two options offered her - eg. do you want to wear your purple pj pants or your red?  Without hesitation, she pointed to the purple ones!  In speech therapy, she correctly answered 8/9 vegetable quiz cards, by pointing to the one the therapist asked.  (It's a good thing she knows her veggies!  Grandpa Herrle will be so proud.)  Tonight she gave props to dad, high 5's, thumbs up, and pointed to his nose, or his ear, when asked to.   When we said, "let's fold our hands and pray together before bed", she clasped her fingers together.   WOW!
We are delighted and amazed.
And it doesn't stop there with the improvements in cognitive awareness!  Today the dietician informed us that since Lydia is gaining weight, and eating so well orally, she no longer has to have any formula through her G tube.  She will only get water, and her medications through her G tube.
Today, Lydia walked in the light gait walker 20 m, and she did very well with foot placement.  The therapist did not have to be placing her feet as regularly as she had to last week.  Lydia was pidking up
her feet and moving them forward.
Her nurse tonight said that it is as if Lydia has fully emerged.  It is as if the haze has gone.  It may come back and go again in periods as she heals, but we have seen brightness and intelligence that we have not seen consistently before.  She has been responsive!  Our little girl has broken out of her cocoon, and she is spreading her wings.  We hold the progress of this day in wonder, and count it as pure joy.
Thank you Jesus, for this beautiful work today.

Psalm 34:8  Taste and see that the Lord is good;
Yes, He is good.  Indeed!  Lydia is tasting and seeing that He is good, and that food is good.  She has eaten all of her purees today, and she did very well in a chewing simulation with her therapists!  You have got to love this: to test her ability to feel something hard in her mouth, and to know to chew it before swallowing, she was given cheesies today.  She crunched them up with no difficulties!  Hooray for Lydia!  The boys wonder when they can have some chewing therapy!!  I am not a fan of cheesies, but if you like them, go ahead and celebrate Lydia's eating success with some!  (If you can't chew them, don't worry, they'll dissolve with saliva!)
Our hearts are full, with the wonderful progress our girl is making.  Her wheel chair is being modified, as her needs have changed since she was fitted with this chair a month ago.  Since she now has greater head and core strength, Holland Bloorview's seating specialist is discussing a chair with out lateral supports, and possibly without a recline/tilt mechanism.  Lydia sits upright most of the time when she is in her chair.  We would love for all of her recovery to marked by steady progress, faster progress!  As much as we want all of her back right away, there is peace in the waiting, trusting, and hoping.
A dear woman from our church emailed to encourage us today that she is "praying for our precious Lydia, and her now inching recovery".  How apt that description of her recovery is.  She has such a long way to go, but she is inching forward.  We will celebrate each inch.  It reminds me of a slogan our pastor used to say: "Inch by inch, life is a cinch.  Yard by yard, life is hard."  We stay in each day, live it to the full, and give thanks for all that we are given.
Taste and see that the Lord is good;
blessed is the man who takes refuge in Him. 
I like the second half of Psalm 34:8.  We are blessed as we abide in Him. 
Psalm 46  God is our refuge and strength, an ever present help in trouble.
Therefore we will not fear though the earth give way, and the mountains fall into the sea...

Last week, I learned from a woman whom I was talking with, that each of her children is praying for something specific for Lydia.  Her son is praying specifically that Lydia will be able to eat Christmas dinner.  A man from our church, is specifically praying that Lydia will recover her sense of taste and smell so that she can savour and enjoy food and aromas again.  I am happy to report that we believe these prayers are being answered!
Lydia has made great gains in her eating in the past two weeks.  Her feed (Peptamen formula) schedule has been changed so that she is no longer fed formula through her G tube every 4 hours.  She now gets her feed just four times a day.  Today, we returned to Holland Bloorview to hear that a plate of pureed food would be available for her for breakfast, lunch and supper.  At lunch, she was given pureed rice, vegetarian chili, and squash.  She ate almost half of the plate!  So she only needed half of her formula at noon.  Supper was a plate of pureed beef, carrots, potatoes, and gravy.  She ate almost the entire portion!  What amazing progress today!  She seemed to really enjoy the tastes, and she didn't tire too much while eating.  Thank you for these specific prayers!
Our team meeting went well today.  Lydia's therapy team was pleased with the progress she is making, and said she is very dynamic right now - always changing and learning more.
Thank you for praying for Lydia, and cheering her on in her recovery.  She is very healthy (when one considers that she has a traumatic brain injury) and she is medically very stable.  We continue to pray that she will regain full cognitive function.
Now to Him who is able to do, immeasurably more, than all we ask or imagine, according to His power, that is at work within us.  To Him be the glory in Christ.

Psalm 28:7
The Lord is my strength and my shield;
    my heart trusts in him, and he helps me.
My heart leaps for joy, 
    and with my song I praise him.

Our hearts leap for joy, and as we all sat together on the deck this morning, we sang and praised him.  God is good.  He is our strength.  We are thankful to  find strength in Him.
Lydia has had a good day.  She has continued to work on sitting criss cross apple sauce, and using the commode.  We saw one particularly purposeful movement that impressed us this evening.  Lydia had been lying on the floor, then sat up, and when she laid down again, she missed the pillow.  She reached behind her head, grabbed the pillow, and put it under her head!  Way to go Lydia! Keep going. We love you!  
Tomorrow morning we will return to Holland Bloorview, to more therapy, and to a family team meeting where we will hear the therapists goals for the next month for Lydia.

It is well with our souls.

When peace like a river attendeth my way,

When sorrows like sea billows roll.

Whatever my lot,

Thou hast taught me to say,

It is well, it is well with my soul.

We have had a wonderful day with Lydia at home.  She had great smiles and giggles for friends, and she worked very hard in therapy this afternoon.
This evening, friends from Lydia's soccer team, the Wilmot Avatars, brought her a silver medal that their team had won in their soccer tournament today.  The team has been so supportive of Lydia, even though she was only at a few practices before May 17.  Her team has played with their hearts for her all season long.  They all wear lime green shoelaces in their soccer shoes, and they entwine green into their blue hair bands.  For the tournament today, they face painted L H on each cheek, and a green ribbon on their foreheads.  Thank you Wilmot Avatars, for your spirit and love!  This soccer team typifies the support we receive from our community.  Thank you for celebrating with us as we enjoy our weekend at home with Lydia.

This morning I awaken with my heart full.  Thank you God, for this new day, for your presence with us, for your mercies, your faithfulness, and your love.  I am thankful for the quiet of the house, with all the children slumbering; puddles of water on the lane; birds song; my daughter's laundry mixed in with all of ours; gathering around the table together.  Thank you Lord, for this new beauty of family, with younger brothers caring for older sister, for laughter and smiles, and for hope.  You are doing a new thing, and we perceive it.  We thank You, and we worship You.

Isaiah 43:19 See, I am doing a new thing!

Now it springs up; do you not perceive it?

I am making a way in the wilderness

and streams in the wasteland.

Psalm 16:11  You make known to us the path of life;

In your presence is fullness of joy.

Home!

When the wheel chair van door opened, and Lydia heard James voice saying "Welcome home, Lydia", the smile on her face said it all!  Then she saw Ellie, our dog, and the smile widened.  It is so good to have Lydia at home with us!  We are grateful, grateful, grateful!
Sam sure can bring laughs to Lydia, and she smiles adoringly at Ben.  The boys love her wheel chair, and at home they feel free to take it for a spin!
Lydia enjoyed visits from family and a few close friends.  She laughed at their stories, which again encouraged us that she is cognizant.
She used the commode, and was dry all day!
When I think back to the days in Sick Kids when she couldn't hold her head up, when she was in her wheel chair, and was incapable of adjusting her position, the progress is remarkable.  She sits up very well in her wheel chair, and spends hours a day there.  There is still a long ways to go, but she has come a long ways too.  For this we are thankful.
Good night! I am going to go and peek at Lydia while she sleeps, just cause I can!  It is good to be the Herrle5 together again at home.  God is good.  We celebrate His goodness and grace to us.

JOY!

James 1: 2-4
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.

This verse comes to mind when I think of Lydia, and her joy.  She faces overwhelming trials - physically and mentally, and yet she has a big grin on her face and a vitality that is divinely given.  Maybe God is sparing her from understanding how much she has lost, and how great her current limitations are, or maybe He has prepared her for this and is leading her through, and giving her joy in the journey.  Either way, we thank and praise Him for Lydia's joy, and her willing attitude towards therapy. 

One of the hardest parts of this journey for us, is letting go of who Lydia was, and waiting patiently to see who she will become.  We love the vibrant girl who got on her school bus 12 weeks ago.  We love the bright eyed girl we share with now.  And we will love the Lydia that it is to come.  Between now and then, we wait.  God keeps whispering to us to trust Him.  So we trust Him with the new Lydia that He is knitting together. 

Joy is ours this weekend, as well.  We invite you to celebrate with us (in your own way - NOT at our house!) that we can share the wonderful news that Lydia is coming home for the weekend!  She is strong enough, and we are overjoyed to have her home with us - to be the Herrle5 together at home.  PLEASE do not drop in to visit.  There will be therapy support workers and nurses here to assist with care.  Lydia is not in a position where she can handle the stimulation of many visitors! 

Romans 12:12 Be joyful in hope, patient in affliction,faithful in prayer.
We invite you again into this verse.  Let's all share in Lydia's joy, and be joyful in the great hope that we have; let's be patient through the long recovery process; and let's continue on in prayer.

This morning, when I told Lydia that our close family friends were coming to see her, her eyes got brighter and then a wide grin came.  Later this morning, the friend who was driving me home came to see Lydia, and as he went to show Lydia a picture on his phone, he accidentally hit the camera button and inadvertently took a picture of Lydia's shoe.  Lydia heard the click and responded with a smile and then a wide grin when she saw the photo on his phone was of her shoe, not the one he had intended to show her.  Moments like these, with quick and appropriate responses,  encourage us that our girl is 'in there'.  There are many non responsive moments in a day that are hard to see, and hard on our hearts.   We choose to not dwell on those ones, and cherish the moments of hope.
Jeremiah 3:27 Behold I am the Lord, the God of all flesh, is anything too difficult for me?
I was sent this verse today, and it resonated with my heart.  No, nothing is too difficult for you, Lord.  Nothing is impossible for you.  So with faith, and hope, we pray to the God of the impossible.  Bring your healing and your fullness of life.

Today in Physio therapy, Lydia worked to sit cross legged - criss cross apple sauce!  She, or her body, rather, prefer extensor tone, so it is hard to have her bend her legs when she is sitting on the floor.  She prefers to be stretched out.  She was not comfortable sitting cross legged, or legs bent to either side.  She responded with furrowed brow, facial contortions and silent, dry tears.  She is gaining strength, so it is hard for her therapists to hold her in this position when she pushes back.  They need to try to help her body to break her extensor tone, so they hold her to these positions.
We had some more commode success today, so that was encouraging!
As well, eating small amounts of pureed foods continues to go well, so the dietician has permitted a decrease in her formula, to allow for more oral intake.  We are grateful for this progress.  She may yet get to taste Dad's sweet corn this fall!  (Pureed, that is!)
If we were to talk coma, in the way that I understood coma, I would say that Lydia is emerging.  She often has a bright sparkle in her eyes, and a knowing grin.  We see glimpses of the Lydia we know and love, and long to have her back.  She is often responsive to familiar faces: her brothers and cousins can almost always make her smile, or laugh.  Sometimes she can look at your with such depth, that you feel she really sees you and knows you.  For these moments, we give thanks.  We are learning that a lot can be communicated with eyes.  Words aren't always necessary.
Lydia still has many periods of vacancy, or less conscious awareness.  As she recovers more cognitive function, these periods will become fewer and briefer.
Psalm 16:11 You will show me the path of life.  In Your presence is fullness of joy.
Lydia is often joyful, and we count this demeanor a gift.  Perhaps she is joyful, because she is in the full presence of God.  She is not with us on a cognitive level, so we wonder if she is with God, and therefore has a fullness of His joy.  May it be so. 

We began using a commode for Lydia this past week, to see if we could help her to use a toilet, instead of diapers.  We had varying success with it through the week, and then on the weekend, we had a couple of amazing days.  Saturday's success rate was 75%, and Sunday was 100%.  We thought, wow, that was easy!!!  Today we had 0%!  Not once did we get her there on time, or have her use it when she was on it.  It reminds us of toilet training all over again.  Lots of laundry and accidents!
Oh well, tomorrow is another day.  This day has been tiring, and bed is beckoning.  We entrust Lydia to the one who neither slumbers nor sleeps.  Psalm 121.  He will watch over us all while we slumber.  Good night.

I just today noticed that the double o's in Bloorview are made with the sign of infinity, perhaps signifying the infinite possibilities at Holland Bloorview.  It is unfortunate I did not notice it in time for yesterdays post!

Lydia has had a quiet, peaceful day.  She continues to love stretching out on the therapy mats, squiggling all over, grabbing her feet or legs, and of course, sitting up and lying down!  She also enjoyed a book on Ladybugs today.  We have been working to have her make a selection between two choices by either looking at the one she wants, or pointing to it.  She chose the Ladybug book by looking at it.  Perhaps she remembers that she is our Lydiebug!

At home, we have been working to convert our study into a main floor bedroom for Lydia.  The piano and some bookcases and chairs have been moved out, and the window shades, and a door are on order.  A quilted wall hanging with butterflies and flowers, made by a woman from our church and her sister, accents one wall.  Lydia's dresser and night table have had a fun and stylish update, from close family friends.   The words faith, hope, love and believe, now emblazon her furniture.  The grade seven classes at Lydia's school all made butterflies, and they hang along another wall. The room is being transformed into a wonderful bedroom.  With a bit more work, it should be completed this week.

We have another great song to share with you, Never Once, by Matt Redman.  When we look back and see how far Lydia has come, we are grateful - not just for her progress, but for the comfort and assurance of God's presence with us.  With joy our hearts can say, never once did we ever walk alone.
http://www.youtube.com/watch?v=n1bXG4WIesA

Never Once by Matt Redman

Standing on this mountaintop

Looking just how far we’ve come

Knowing that for every step

You were with us

Kneeling on this battle ground

Seeing just how much You’ve done
Knowing every victory
Was Your power in us

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone

Never once did You leave us on our own
You are faithful, God, You are faithful

Kneeling on this battle ground

Seeing just how much You’ve done
Knowing every victory
Was Your power in us

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone

Never once did You leave us on our own
You are faithful, God, You are faithful

You are faithful, God, You are faithful

Scars and struggles on the way

But with joy our hearts can say
Never once did we ever walk alone

Carried by Your constant grace

Held within Your perfect peace
Never once, no, we never walk alone

Never once did we ever walk alone

Never once did You leave us on our own

You are faithful, God, You are faithful

Every step we are breathing in Your grace

Evermore we’ll be breathing out Your praise
You are faithful, God, You are faithful

You are faithful, God, You are faithful

You are faithful, God, You are faithful
You are faithful, God, You are faithful

Infinite

We have shared before how there are certain words that carry deep meaning for us in this journey.  Infinite is one of those words.  Infinite.  Never ending. Limitless.
Our God is infinitely merciful, infinitely loving, infinitely faithful, and infinitely powerful. 
We pray for many people and events: Lydia is not the extent of our requests to God.  We pray for families that are grieving, families that are suffering, couples that are struggling, individuals who are dealing with a difficult diagnosis, a devastating loss, or discerning a new direction.  We pray, and He can handle every one of our requests.  Many people around the world pray.  He hears us all.  We pray to a limitless God with an infinite capacity to hear and respond. 
We have been encouraged by Lydia's progress.  Prayers are being answered, as she recovers.  She has a much longer attention span, and she now seldom sleeps during the day.  She has some periods of less or no responsiveness, but many times, she is alert and responsive.  And she is often happy.  We are so thankful for her smiles and laughter.  (There is still very infrequent little sounds when she laughs, but we believe sounds will come.  Just like we pray and believe that speech will come.)
Now to Him who is able to do, immeasurably more, than all we ask or imagine, according to His power, that is at work within us.  To Him be the glory!  Amen.

Lydia is really progressing!  Thank you for your prayers.  Thank you, God, for your healing and your power.  Thank you for hope.  Thank you for progress that we can see and celebrate!
Lydia can now sit up on her own and hold herself in a sitting position all on her own.  Today in therapy she was in a contraption that allowed her to practice her gait.  It is like a walker, only it has an additional overhead component that attaches to a waist harness to support her weight when needed.  Lydia needs to relearn how to move her legs in order to take a step. In the gait machine, she holds on to the walker handles, and slowly tries to pick up her feet in succession in order to learn to walk.  She worked hard to walk about 8 m, and then turn around and walk back.  Lydia also ate some pureed sweet potatoes today.
These verses have inspired us to hold the faith - trusting and believing in God:
Hebrews 11:1 Now faith is being sure of what we hope for and certain of what we do not see.
James 5:15 And the prayer offered in faith will make them well; the Lord will raise them up.
Thank you for joining us in this faith journey

11 weeks into the journey

Lydia has taken to doing sit ups - not in athletic style, but in her own style, of lying down, sitting up, then lying down again.  She performs this sequence repeatedly!  Her core muscles are strengthening, and she is able to sit up on her own - a bit of tottering, but not too much.
Today the Occupational Therapist gave us the go ahead to begin feeding Lydia small amounts by mouth.  Previous to this, all tastings were very small amounts, and given by therapists who monitored Lydia closely to be sure that she swallowed properly.  Tonight I gave her some sweet potato puree, and she held the spoon in her right hand and put it to her mouth, cleaned the spoon off with her lips, then tucked her chin and swallowed!  What progress she has made with this in the last week!  Now that we have permission to feed her small amounts, (5 teaspoons), we will try to do this just before every daytime G tube feed.  We have heard that once the muscles strengthen, with practice, eating becomes easier and easier.  Just like a baby, after purees, Lydia will graduate to mashed food, to more texture, to chewing and eating well independently.  Hooray!  Maybe Lydia will be able to have turkey dinner with us at Christmas!
Lydia gave me a great smile, and looked directly at the camera tonight, when I told her I wanted to take a picture for Daddy.  What a beautiful moment!  She is increasingly more alert and responsive.
It is hard to believe that 11 weeks ago today, our lives changed.  I looked back in my journal today, and read a page entitled: Blessings in this Journey: moments of beauty.  Here's the list from June 30.

1. singing and worshiping
2. seeking and finding refuge in God
3. smiles we have received from Lydia
4. the kindness and generosity of friends and strangers
5. hearing from the Word of God - it is living and active

An updated list would include:

1. Lydia's smiles, laughter and playful nature.
2. Increased understanding and ability to follow simple commands.  
3. Progress in physical movement - holding a toothbrush, feeding herself, sitting up, rolling over, standing with assistance.
4. Broad smiles when she enters the therapy pool, and floats with assistance.
5. Moments of great clarity where she looks at you deeply, and you feel seen.
6. Smiles and delight when she sees her brothers, cousins, and family members.
7. Increased alertness for longer periods of time.
8. Moments of vibrancy.

At the end of this day, Lord, we thank you for the progress that Lydia is making.  We look to you to provide all that she needs to continue to recover.  Be her healer.  Be near.  Return her to us in fullness  of life.

About a month ago, we thought that Lydia might have started to find her voice, as she was making sounds as she exhaled - I thought it sounded like humming. The speech pathologist at Sick Kids corrected me and said that sighing or moaning are not considered vocalizing. Even if it was sighing, it was sound that she was making. She has been fairly silent since that one episode, until this week. We heard small sounds when she was laughing on Monday. This has continued, and today, as Grandpa was teasing Lydia, she smiled broadly and then started to laugh with some audible sounds. As Grandpa continued, so did Lydia's response. In her therapy sessions, she is sometimes playful. We are grateful that her communications with us are often smiles and delight.

While we would never have chosen this road, we have accepted the journey we are on, and we are finding the peace that passes all understanding. There are moments of beauty, hope and love along the way.

A friend shared the following analogy with us, and while it is not a perfect fit for us, it has many meaningful connections. It is like we have a newborn again, and we need to relearn how to care for our daughter. I recently spent time at Holland Bloorview learning how to give Lydia all of her meds, injections and feeds. And yes, I am quite adept at diaper changing again! Many of our dreams and plans for family have changed. Our fast paced life of activity has slowed, and we are finding beauty and serenity on the road we are travelling . Life goes on and we have learned to see beauty in ways and in places that we would not have been able to see with our pre-accident eyes. Life is precious.

WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

by, Emily Perl Kingsley, c1987 by Emily Perl Kingsley. All rights reserved

Thank you, God, for Italy, and for Holland, and that you dwell in both places.