Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Open Hands

on November 13, 2013

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This week, I attended a two-day cognitive rehabilitation training sponsored by the American Congress of Rehabilitation Medicine. I’d been looking forward to the training for months, which was designed to train rehabilitation professionals such as speech pathologists, occupational therapists, nurses and physicians how to use evidence-based interventions for impairments of executive functions, memory, attention, hemispatial neglect, and social communication. (All of which are common after hemispherectomy. Evidence-based, by the way, is just a fancy way of saying, “We know this works because we did studies!”) 

Even though I’m not a medical professional, I thought it would be beneficial for me to attend the training since I’m responsible for guiding Joscelyn’s rehabilitation and choosing the therapists who work with her. We couldn’t be more pleased with her current therapists, who are extremely dedicated and highly skilled. Joscelyn’s speech therapist and occupational therapist actually attended the training with me along with a fellow “hemi mom” who is just as committed as I am to doing everything within her power to help her child meet his maximum potential.

Day 1 of the training brought the disappointing news that no pediatric brain injury rehabilitation studies were included in the cognitive rehabilitation manual on which the training was based. All of the case studies presented were adults. Upon hearing of my disappointment, one of the presenters graciously agreed to share a few pediatric case studies with which she was familiar. (If you’re interested in reading those, please leave a comment with your e-mail address and I will happily forward them to you.)

Finding out that the training was geared toward adults was difficult news for me to digest; not just because I have a large, great, ok, consuming need to help my daughter right NOW but also because lately I’ve been feeling a lot of anxiety about her future. “Will she ever be able to live independently? Who will care for her when I’m gone? Who will keep her safe? Who will remind her to complete important daily tasks?” 

It may seem silly to you that I often stay awake at night worrying about things like that when she’s only two years old and we probably have quite a few years before we need to be concerned about such things but considering how things have unfolded in my life over the last couple of years, you can hardly blame me for wrestling with some pretty dark “what-if” scenarios.

 The thought of my daughter, vulnerable and alone at any age, with me unable to care for her, is something that haunts me daily. We are working to provide for her legally and financially but that doesn’t take away my fear that she might someday feel abandoned by me or that whoever is responsible for her will fail to love her or take care of her like I would. 

But back to the training…

Imagine if you will, a room full of clinicians watching a video of an adult patient recovering from a brain injury, working with a therapist on an exercise designed to improve his memory.

This particular patient had been having trouble remembering his actions from the day before, so the therapist had asked him to write his activities down on a Post-it throughout the day and keep the Post-its in his “Memory Notebook”. (More on this in my next post) In the video, the therapist asks, “What did you do over the weekend?”, which prompted the patient then turned to a page in his memory notebook and begin reading from the notes he took.

“At 1pm on Saturday, I went to the grocery store. At 4pm, I did laundry.”

All around me, the clinicians in the room were all focused on the practices and techniques of the therapist in the video but when I looked at the screen, all I could see was Joscelyn twenty years from now. 

And I started to cry.

(My hilarious sister, upon hearing this, assured me that this was probably a welcome sight for the physician who presented the video. “Finally, someone gets my work!”, he must have thought to himself.) :)

I was sitting there, feeling despondent and overwhelmed and woefully inadequate to address the myriad neurological deficits which my daughter now faces after having half of her brain surgically removed, when the presenter remarked on something I hadn’t noticed before.

“What was the patient’s reaction to using this technique?”, he asked the audience.

“Very positive!”, remarked one attendee. “He was happy!”, commented another.

Wait…What?…He was happy?

I looked up at the screen again and replayed the video in my mind.

He was! He was happy! The therapist asked him what he had done over the weekend and instead of feeling frustrated or angry because he couldn’t remember, he used the tools that had been given him and happily answered the therapist’s questions.

I often tell people that all I want for my children, all of my children, is just for them to be happy.

Nothing upsets me more than the thought that Joscelyn might never, because of her condition, despite ALL of my best efforts and ALL of the best interventions known to modern science, be happy; that she will always on some level, feel frustrated, inferior, lost, isolated and alone. 

That fear torments me. It’s what drives me with such intense passion to try to “fix” the damage to her brain.

But there it was, evidence to the contrary; proof that even with profound memory deficits, a person could still be happy; could simply enjoy chatting, just like anyone else would, about what he did over the weekend with a friend.  

Amazing.

Later in the day, we learned about another memory aid, this one electronic, called “QCard“. According to its developers, QCard is a life changing app for those living with Brain Injuries, Concussions, Alzheimer’s, Dementia, ADHD, Amnesia or anyone with memory impairments. QCard’s founder was involved in a serious motor vehicle accident, which resulted in an acquired brain injury that changed his life. His struggles and frustrations lead him to develop Qcard as a tool for himself.

We watched a video a young man who had gained independence after learning how to use the QCard app. Prior to its use, he had been reluctant to admit to anyone that he was having a problem remembering to do things like take his medicine or complete household chores. After successfully using the application for a time and gaining independence, he readily admitted his need for it.  The presenter explained that the ego often can’t admit impairment until it has found a way through it. Once the way through has been found, the patient feels empowered and no longer fears nor feels threatened by their limitations-

But the choice to embrace and use the tool was up to the patient. One has to be willing to open one’s hand and let go of something in order to receive.

We must let go of the life we have planned, so as to accept the one that is waiting for us.”, said Joseph Campbell.

The training this week didn’t give me the instruction I was looking for in how to help my child recover from severe brain injury but it did teach me that I’m not done letting go.

I’m still clutching the full responsibility for Joscelyn’s future health and happiness as though it belongs solely to me, when in reality, that’s an impossible burden for one person to assume. 

I need help.

Fortunately, there are more tools available than I ever imagined.

All over the world, people with brain injury are leading full, happy lives. Technology is advancing all the time and brain research is now a high priority.

 I gained a great deal of insight into how the brain works over the last two days and I learned a variety of rehabilitation techniques and strategies which I promise to share with you in a follow-up post. (And which may or may not still be in practice by the time Joss is an adult) But more importantly, I strengthened the one key element that makes any rehabilitation strategy work: 

Hope.

Right now, I drive Joscelyn back and forth to her various therapies because I have hope that her therapists will be able to help her. I have to open my hand to let go of my fear of an uncertain future for her in order to embrace a newly imagined future in which she finds healing and happiness.

As Joscelyn grows, she could very well reach a point developmentally in which she needs to take more responsibility for her own rehabilitation and recovery. At that time, she’ll have to open her hand to let go of her own ego in order to admit that she needs help and to embrace the tools and techniques offered to her in the hopes that they will make her life easier and more enjoyable.

Her wonderful therapists: past, present and future, open their hands every day to let go of strategies that are outdated or simply don’t work in order to embrace new, more effective tools and techniques for their patients.

This training reminded me that I’ve been keeping my hands clutched in fear instead of open to receive.

Lord, help me to grasp only what YOU want me to hold onto and help me let go of everything else that keeps me from fully embracing the life that is waiting for me.

 

thanksgiving

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15 responses to “Open Hands

  1. Jenni says:

    Jennifer you are an amazing woman to share such deep personal fears and your outreach to others with your story is so inspiring! I just want to say that before we had the hemi for Alli her dr told us about all the kids that lead happy normal lives playing sports etc! As we take her older sister to dance and softball we tell Alli we can’t wait to watch her do those things someday and know that it may be delayed but we will do all things in her power to achieve any goals she has! We are full of hope and amazement as I know you are for Joss as well! Thanks again for sharing! :) <3

  2. Crissy says:

    She’s such a beautiful little girl and so lucky to have YOU as her MOM!!!

  3. Bethanne Schrecengost says:

    Jennifer, as always, thank you for sharing so beautifully from your heart. I have been in your panicked shoes and know that it is not a fun place to be. For several years after Jacob’s diagnosis of autism, I spent many, many, nights lying awake worrying about his future. As the years have progressed (we are now 11 years out from his diagnosis), my panic has lessened. I believe this is because of a combination of factors. First, he is progressing beautifully (as is Joss!), second, the Lord very gently and very often reminds me that I really have no control over what the future holds for ANYONE in my life (including Jacob’s neuro-typical sister). When I’m in my panicked state, I am far from Him, and this is not helpful for anyone. Trust is so very hard for me, and yet each day I am reminded to, “Consider the lillies of the field.” This doesn’t mean that we aren’t doing everything we can to help Jacob be all that he can be. It does mean that I have learned to trust more and worry less, because I know who IS in control. I continue to pray for you and yours! – Bethanne

    • Thank you so much for your prayers and encouragement, Bethanne! You are absolutely right that each day has enough troubles of its own and we shouldn’t go “borrowing” trouble from tomorrow. I’m glad to hear that your fears have lessened with time. My prayers and love are with you, Jacob and the rest of your precious family! Happy Thanksgiving!

  4. Michelle says:

    Beautifully said, Jennifer. I think we all have trouble letting go of the life we had planned some times, thanks for the reminder.

  5. Carolyn Alverson says:

    There is NO way I can comprehend the emotions that engulf you in wave upon wave. But my mother heart hears your despair and am reminded to pray for you. I am sure that your writing this blog is theraputic. It is an inspiration to me as I see how God has provided and sustained you throughout this process. I will be praying, especially this week as you face another anniversary. In His love.

  6. Nonnie says:

    Letting go, I find, is one of the hardest things to do, but it mostly leads to something better. How serendipitous that phrase is “letting go” because our ladies’ Bible Study have been reading and dwelling on that in our study recently.
    I still pray for Joscelyn. Would you like me to add you and your family?

  7. Andrea M. says:

    Jennifer, I finally had a chance to read your latest post. Wonderful information – shared in your always humble, always inspirational way. May God continue to give you His strength, His hope as you help Joscelyn through each and every challenge. My heart and prayers are with you and your family, especially at this season of remembrance. Much love to each of you!

  8. kim says:

    Jennifer,
    The silence is deafening. Praying that every second of every day you and yours are finding peace, strength, comfort and hope in Him.
    Kim

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