Tuesday, March 10, 2015

Sweet 16

Sweet 16.  That milestone birthday marker, has been bittersweet.  While we are so thankful to have Lydia with us, to celebrate her, who she is, and her part in our family, we have also had to swallow many lumps, and fight back tears, at the many difficulties she continues to face each day, and the normal teenage experiences that are out of her grasp.

One week before that tragic day in 2012 that changed the trajectory of Lydia's life, I had picked her up after school from track practice, and we had driven home and stopped into our Farm Market at the front of our farm.  When it was time to head home, I asked Lydia if she wanted to drive the car down the lane.  With bright eyes and a huge smile, she got into the driver's seat.  She very cautiously followed instructions and drove the car home.  I have revisited that memory countless times in recent weeks.  I'm so glad I gave her that short moment of "grown up" responsibility and greatness.  And sadly, I wonder if she will ever be able to drive.  Will she have the mental capacity and awareness to safely operate a motorized vehicle?  We hope and pray that her brain injury will continue to heal.

Lydia has made some inching progress in the past few months.  She still struggles greatly with mood regulation and bipolar symptoms, racing thoughts, anxiety, sleep disorders, and concentration.  2014 was a very challenging year  - admittedly a harder one than 2012.  Lydia suffered many set backs last year.  As we turned the calendar to 2015, we began to see glimmers of hope.  More recently, she has been able to attend school, with a teacher or support worker.  We are so grateful that her school community accepts and encourages Lydia in her journey of recovery.  For much of first semester, she was absent from school - working with teachers or therapists from home, as she was able.  Now, in second semester, she is taking Art, in addition to continuing her choral music course. This is a small step, but still one to celebrate!  She so wants to be a part of school life, and spend time with her peers!  She also wants to join every sports team, and every club!  This is the old Lydia asserting herself, and the new Lydia has trouble accepting her limitations, and living in the reality of them. 

She is learning to dribble a basket ball, and like we did when she was little, we cheer her on when she progresses from being able to dribble 5 times without fumbling, to 15 times, and so on!  She tries very hard, and it is heart breaking, as parents, to see it be harder to master these skills this second time, than it was the first time.

We try to encourage Lydia to embrace who she is being recreated to be, to accept that she is different than before, and to trust God with the plans that He has for her.  We commend her when she uses the abilities that she has to make a difference.  She has a big heart (and smile), and in her slow, articulate manner, she often goes out of her way to encourage others, and to bring them cheer.  She inspires people with out even knowing why.  These are hidden gifts in this difficult journey that we need to discover, and treasure.

In uncertain times, we stand on the certain truth that God is faithful; that He will never leave us or forsake us; that He is for us; that He loves us; and that He who began a good work will carry it on to completion.  We rest in Him.

We invite your renewed or continued prayers for Lydia.  Thank you.

For decades, we have loved the hymn, It Is Well With My Soul, by Horatio G. Spafford.  We have sung it in worship services and funerals,  at home with guitar, or piano, or in the car, reminding ourselves of the peace that is ours when we trust in Jesus.  The first verse begins:
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.

Bethel Music has a beautiful song based on this old hymn.  May it have you singing too.  And may it be well with you.

It Is Well - Kristene DiMarco & Bethel Music - You Make Me Brave


Grander earth has quaked before
Moved by the sound of His voice
Seas that are shaken and stirred
Can be calmed and broken for my regard
Through it all, through it all
My eyes are on You
Through it all, through it all
It is well
Through it all, through it all
My eyes are on You
It is well with me
Far be it from me to not believe
Even when my eyes can’t see
And this mountain that’s in front of me
Will be thrown into the midst of the sea
So let go my soul and trust in Him
The waves and wind still know His name
It is well with my soul
It is well with my soul
It is well with my soul
It is well, it is well with my soul

Written by Kristene DiMarco © 2013 Bethel Music Publishing (ASCAP). All Rights Reserved. Used by Permission.

Tuesday, July 29, 2014

There is a steady refrain that has been on our lips and in our hearts for the past several months since we last updated the blog.  It is an unexpected song for this stage in the journey, but one we have come to realize may be a part of our lives forever.  It is from Les Miserables:
There's a grief that can't be spoken
There's a pain goes on and on ...

Grief. Loss. Pain.  These have been the dominant forces moving through our lives.  Lydia has become acutely aware of her many losses, and she is overwhelmed in dealing with them.  At this point in her recovery, she cannot comprehend, even sometimes, remember emotions or behaviours that she has exhibited.  She can be angry at times, intensely so.  Other times, she feels great sadness, and despair, facing the future and feeling like she doesn't have the strength for all of the hard work her recovery asks of her; seeing her peers and knowing she can't keep pace with them; longing for the ease with which her younger brothers can learn and master new things.  Add to all of this, the normal hormones of teenage life, and the fragility of her recovering brain, and you get a sustained, turbulent condition.

One medical doctor from Holland Bloorview Children's Rehabilitation Hospital explained to us that a normal teenager's emotions will swing, like a pendulum, from 4:00 to 8:00 (if you picture an analog clock).  With a brain injured teen, the pendulum swings from 1:00 to 11:00, and back again, sometimes with extreme speed.  Rational thoughts, and emotional regulation are difficult for Lydia at these times.

Due to the fragility of her recovering brain, when one part of her brain struggles, almost every other part of her brain is compromised.  Consequently, her speech is slower, her stability and balance have suffered, (she falls a lot more, and can require support when walking), her cognition is impaired, and her processing speeds and attention span are significantly reduced.  She has regressed in all areas of her recovery as a result of the emotional turmoil in her brain. 

We knew that setbacks would be a part of her recovery, but to experience them so profoundly, and so daily, even hourly, has been devastating. 

Lydia was not able to complete her school year at Rockway Mennonite Collegiate, but has worked with her teacher and therapists at home, since April.  She has almost finished all of her required elements, and, understandably, she has lamented the need to do work in the summer when others don't have to.   She is taking a break from school and therapy in August.

Lydia loves to sing. Loudly. She is also currently enjoying lots of different arts and crafts projects.  Her enthusiasm is boundless when it comes to music.  Ours is not a quiet household!

What will September bring?  We don't know.  We wait and see.  And always, we hope and pray.

The word of God comforts us.  Notably, the imagery of Isaiah 35, with the Lord making a way in the wilderness, and streams in the desert, encourages us. 
Another favourite is Psalm 27:13, 14  Yet I am confident of this, I will see the goodness of the Lord in the land of the living.  Wait for the Lord.  Be strong and take heart, and wait for the Lord. 

We invite you to pray for healing.  Please join us in asking God to bring full recovery to Lydia's brain, to take her through this stage of recovery, and to keep us all in His care.

We were told at the start, that this would be a long journey of recovery.  We truly had no idea how long.  We are understanding more, each day. 
In March, we watched a video of a local woman's courageous recovery from her catastrophic brain injury 13 years ago.  Our eyes were opened, and our hearts softened as we dug in for a longer journey than we had anticipated.    You can view Connie's recovery :

Friday, March 14, 2014

Happy birthday, Lydia!

“So how is Lydia doing?” we are often asked.  We are humbled by the support and care that we continue to receive.  Thank you.  She is doing well, considering how extensive her injuries were, and how much recovery is needed.  She still has a great, heart  warming smile, and a readiness to share it with others.  She is continuing her studies in grade 9, with her support teacher, at Rockway Mennonite Collegiate, and doing well there.  In the past several months, her recovery has been more focused on the recovery and healing of many emotions.  She has hard days, and good days, and we are learning to stay in each day, and not jump ahead to the future.  “This too, shall pass” is an axiom that James and I have often shared with one another, in the various difficult stages of parenting that we have encountered over the years.  This expression reminds us of the temporal nature of things that seem long and hard.    Lately, I have been challenged to remind myself that it is not merely a matter of biding time in a hard situation, and waiting for it to pass, but rather, to acknowledge that God is the Alpha and Omega, the beginning and the end, and He knows and holds each stage.  He knows the beginning, the middle and the end.  He will hold us and keep us in every stage.

We celebrated Lydia’s 15th birthday with a family trip to Ottawa.  We attended question period in Parliament, and afterwards enjoyed a wonderful visit with our MP for Kitchener Conestoga, Harold Albrecht.  In the House, he spoke of Lydia’s miraculous recovery, and reminded us how far she has come.  He reflected back on Lydia’s “when I am 14” list of things she hoped to be able to do by herself by the time she turned 14 year old – like eating soup!  He then wished her a happy birthday, and said  “we can only imagine the things you will be able to do when you are 15!” 
If you have a moment, enjoy this minute long update from our genuine and caring Member of Parliament. Harold works for and cheerleads many causes in our nation.  We are touched by his ongoing support and prayers for Lydia.  

Lydia, our determined warrior butterfly, has already begun her “ when I am 16 list” of goals she hopes to reach.  Her list sounds a lot like many other teenagers, “ I hope to drive….”.  We have cautioned her that it may be awhile before she is able to do that.  But who knows what a year will hold?  We can always hope.  

Wednesday, December 25, 2013

Merry Christmas

Merry Christmas to you all.  May the light of Jesus shine upon you.

We hope that as 2013 draws to a close, that you are able to find yourself in a spot of gratitude and peace.  We have learned much of these two invaluable traits in the past year.  We live by moments, days, weeks, and now years, of trusting that God has plans for us that extend beyond our capacity to understand, and by resting in His care for us. 

This past year has been hard.  It has had highs, and many lows.  Living with someone with a brain injury is very challenging.  We have been adjusting to our new normal as a family.  Often, we are stretched to care for Lydia's many physical, and emotional needs.  She is currently at a spot in her recovery where she is grieving her losses.  Anger is a part of grief, and she struggles with how hard her life is.  And it is hard.  We wish it wasn't, but it truly is.   It is the testing ground of our faith:  Do we trust that God is taking care of us, even when we can't see his work, or understand his plans?   We call out to him regularly.  We seek his grace for each stage of Lydia's recovery.  We ask the Holy Spirit to counsel us, and to comfort us in our sorrowing. 
Thankfully, some days, there is an ease and peace at home that we are all thankful for.
Lydia can laugh at herself, and her smile is genuine and warm.   Good humour can abound!  Lighter days, allow us to catch our breath, and regain our perspective - always on the One who cares for us, and never leaves us. 
We are often asked, “How is Lydia doing?”  “She is doing well for someone who is recovering from a traumatic brain injury” is our standard response.  Or “She has come a long way, and we are so thankful, but she has a very long way to go, too.”  Both of these answers speak to the truth that is ever present in our lives:  we are on a very long journey of recovery with Lydia.  We are thankful for the progress she has made, and we face the future with hope for continued improvements.  We pray daily for more recovery, strength, and rest.  But this weary mother must confess that the journey is long and the path is not well marked.
We do not know what 2014 will hold.  Lydia will continue to work on her therapies and school.   She will keep trying to learn to run, and this winter will see her on the slopes at Chicopee, learning to ski again in Chicopee's assisted skiing program. She is a determined learner; our parental hearts cheer her on when we see the sheer effort she gives towards her recovery. She will keep working on her singing voice, and we will try to sing the journey together, one moment, or hour or day at a time.  May you do the same, whatever your journey may be.
May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.  (Romans 15:13)