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.
Wednesday, December 25, 2013
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)
Tuesday, October 1, 2013
September, that back to school month, has flown by for us, as we have three children back to school, each in a different school. Lydia is at Rockway Mennonite Collegiate, and loving it! Her specialized educational needs are met in partnership with the school and her private rehabilitation team. This means that she continues to receive Speech Language Therapy, Occupational Therapy, and Physical Therapy, in addition to being enrolled in courses at Rockway. Her daily attendance at Rockway is supported by a private Rehabilitative Certified Teacher or a Rehabilitation Support Worker. This partnership has worked very well, with strong communication between the Rockway and Therapy teams. We are so delighted for the progress that "back to school" means for Lydia.
Lydia has been very tired, with all of the cognitive strain that school puts on her. She needs rest, and once again, night time rest is interrupted; her mind processes and won't shut down to allow her to rest. She has two different capacities, and personalities: one that is positive, joyful and lively, when she is rested, and the other that is overwhelmed, despairing and challenged to do even small simple things, when she is tired. Please pray for restorative rest each night.
Her recovery and healing continued over the summer, but she still has difficulty with coordination and balance; her gait is unsteady, and learning to run has proven to be very challenging. Remarkable improvement is noticeable in her fine motor skills. She is able to print and the tremor in her hand is considerably less. Progress is being made, just at a slower pace than previously.
When someone dies, there are grieving rituals, and time given to mourn. When someone suffers a significant loss, or disability, there is no time allotted to grieve. Life continues.
More than ever, Christ is the solid rock on which we stand. All other ground is sinking sand. We give to Him the weighty cares of this journey. We ask Him to provide for us, and take care of us, day by day.
James and I are feeling the strains of caregiving: the physical fatigue, and the emotional weightiness of this present journey. And yet, we are grateful, that we can hold one another, and acknowledge the pain together. We grieve and pray together. We thank God that he has knit our hearts closely together.
We hold to the promises of scripture, that He who began a good work will be faithful to complete it (Phil 1:6) and that He will strengthen us and help us and uphold us with His righteous right hand (Is 41:10).
Sometimes we recite Isaiah 43, inserting our names, and holding to the hope that scripture brings.
1 But now, this is what the Lord says—
he who created you, (Lydia),
he who formed you, (Lydia):
“Do not fear, for I have redeemed you;
I have summoned you by name; you are mine.
2 When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned; the flames will not set you ablaze.
3 For I am the Lord your God,
the Holy One of Israel, your Savior;
Your continued prayers and support are appreciated as we walk, upheld, in faith.