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
“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.