Grief, Anger, and Despair – Surviving the First Few Years

I have been meaning to write about my feelings surrounding E’s diagnosis for awhile now.  For the first number of years, the pain was still too raw.

As I have detailed previously, E was born full-term after an uneventful pregnancy and a ridiculously long (64 hr) labor.  Although undeniably stressed from delivery, and needing some resuscitation, she seemed to make a complete recovery and didn’t even have to spend time in the NICU.  We were so relieved.

Then at around 3 months old, E started batting at toys with her left hand, while her right hand stayed mostly in a little fist.  We mentioned this to our family physician at her wellness check, and she who referred us to the Children’s Center for assessment.  I spent hours on the internet researching early handedness in infants.  Again and again, hemiplegic cerebral palsy came up.  I had a horrible gnawing feeling in my stomach that these symptoms applied to her, but I couldn’t understand why or how.  I tried to ignore the feeling, but sometimes it made me physically ill with fear and dread.

I was already struggling with post-partum depression from other long-term complications during E’s delivery, and this suspicion I had of cerebral palsy made it worse.  I had almost daily nightmares.  I also had PTSD tendencies, and was hyper-aware of every noise and movement E made.  I was terrified of SIDS and of E getting hurt in any way.  I suppose somehow I felt she was my only reason to live. I was referred to a psychiatrist.  However, being the “free” psychiatrist through the public health care system, she worked with students.  I had people watching our sessions through one-way mirrors and didn’t feel comfortable admitting my true feelings in front of unknown watchers.  I admitted just enough to get a prescription for anti-depressants, but didn’t tell of my stash of prescription narcotics and my deeper, darker feelings.

At this time I had suicidal dreams.  In them, I would take E with me.  While awake, I felt awful enough to consider my own suicide, but was too in love with E to consider any harm coming to her.  As I said, she felt like my only reason to live.

When E was 6 months old, we were seen by the developmental pediatrician at the Children’s Center.  She told us that due to E’s difficult delivery, she had likely suffered a brachial plexus injury and would recover with therapy.  I could hardly bear to ask… “so… it’s not cerebral palsy?”  And the answer was “no, definitely not”.  We were so relieved and started an hour of combined PT and OT weekly.  I was able to ignore the horrible feeling in the pit of my stomach much easier.  Still, down in my heart, I knew that this was not something that was going to just “go away”.  This was a time of hope and dread intertwining strangely.

It was really difficult for me to be with other moms with young children.  When I was just with E, her sweetness and my excitement in her every accomplishment was wonderful.  Because her milestones were hard won, we relished in each small accomplishment!  Being around other young children, however, made her motor delays stand out like a neon sign to me.  I had been a part of a mom’s birth group, and all our babies were born within a few weeks of each other.  I found that playdates or mom’s groups would push me over the edge and I would end up crying in a bathroom somewhere.  And so I slowly withdrew.  I emotionally couldn’t handle being around other children near E’s age.

When E was 9 months old, an MRI confirmed what I had suspected.  E had suffered a stroke sometime around the time of her birth (termed a perinatal stroke).  Her official diagnosis is “presumed perinatal ischemic stroke” (PPIS) as well as “right hemiparetic cerebral palsy”.  Stroke is one of the leading causes of cerebral palsy.

And so began our “official” journey.

I was crushed.

And then I became intensely angry for a long time.  I had a lot of what if’s and should haves…. particularly I wish I would have pushed harder for a c-section, and I agonized over labor & delivery mismanagement.  We will never know if that would have spared E this struggle.  I considered suing for negligence.  In the end I wrote a seething letter, detailing the repercussions to our family from poor peri-natal care.

(But that is one of the harsh realities of this life, isn’t it?  We wish to control – life, death, and everything in between.  “In our day and age”, these things shouldn’t happen.  But “in our day and age”, *many* things DO happen which are unfortunate.  Even though we live in an advanced society, when it comes right down to it, there are many things that are out of our control…  Why?  I believe we know deep down that we were made for something better – for the happy and healthy “utopia” we all yearn for and try to achieve through various means.  God describes this as having put “eternity in [our] hearts”.  Our world is a fallen one, because we have inherited a fallen nature – collectively we have chosen to follow our own ways instead of God’s ways… And in a fallen world, bad things happen to good people and bad people alike.  God does not promise to spare us the harsh realities of life in a fallen world, we look around the globe at countless examples.  Not only that, but God willingly took on these harsh realities and came and lived among us, as one of us – He truly understands.  God promises to carry us through – to give us hope for today, and hope for tomorrow.)

Submitting the letter, with suggested action items for change, brought some measure of healing to me.  The anger began to fade.  It was enough that I could then launch headfirst into researching the best and newest therapies.  I downloaded scientific papers and journal articles.  We jumped on the constraint-induced movement therapy really early on.  Our life began to revolve around therapy.  Action.  I was going to “fix it”.

We did many therapies, as much as I could handle without exhaustion.  Note, as much as *I* could handle.  Sometimes, it was too much for E.  Sometimes I pushed her WAY too hard… seeing her as a challenge that needed to be solved rather than a little person with feelings.  I had a chart which showed that if certain functionality could be reached by age 24 months, then the child would become only “clumsy” but otherwise neurotypical.  “Clumsy” became a goal which I imposed upon E to try to accomplish.

After E passed the 2 year mark, it was clear that she wasn’t going to “outgrow” her physical disabilities.  “Clumsy” was no longer an option.  I’m embarrassed to write this, but this is truly how my mind was working at the time.  Now, I started aiming for neurotypical functional goals.  This started becoming even more relevant when E’s 2 year younger brother started surpassing her on physical and self-care skills.  For a long time I worked even harder with E to help her keep up.

It wasn’t until E was around 4-5 years old that I realized that all this focus on what was “wrong” was hurting what was “right”.  Yes, functionality is important.  It’s nice to be able to get dressed, eat, and go to the bathroom by yourself.  But at what expense?  E has always been quite timid and reserved, but how much of her lack of confidence is because of a focus on what is hard for her?  I let go of goals, and just let her be.  E was now “free” to develop at her own pace.

It’s so hard to balance between therapy and “normal life”.

Over the last several years we have swung almost in the opposite direction, doing typical kid-activities and very little formal therapy.  We have continued with orthoses to help with alignment and range of motion.  (Detailed in other posts)  I see the benefit of what we did when she was younger carrying through in functionality even now, but I also regret pushing so hard.

What did help me reach a measure of acceptance was releasing the guilt, regret, and control… There must be a reason why God allowed E’s stroke to occur.  Perhaps it is to make her, and our whole family, more sensitive to those with disabilities (which it has!  And there certainly are more children who struggle with one thing or another than I would have thought before!).  Perhaps it is to meet people we otherwise never would have (which has certainly happened!).  Perhaps it is just because bad things do happen to good people in a fallen world- including babies.  Some things we will never know on this side of eternity, and must trust in our heavenly Father just as E places her trust in us as her parents.

“And we know that for those who love God all things work together for good, for those who are called according to his purpose.”  Romans 8:28

Sharing our story and talking with others along the same journey, who understand, brings healing.  If someone can be helped through what we have gone through, maybe that makes what we have gone through have purpose and meaning.

There are critical development windows between age 0-3 and then to a lesser extent 3-6.  When we reached that 6 year mark, I feel like I just accepted that we had worked our hardest and that now, what would be would be.

I realize now that I walked through the typical steps of grieving:

Image result for grief cycle kubler ross

I strongly believe that in this life, nothing happens by accident or coincidence – things aren’t determined by fate or luck (good or bad).  I believe there is an overarching story – a beautiful picture of love, loss, and redemption – and that there is Someone who cares and is in control.  You are already a part of this story, whether you know or believe it or not.  While the end of the story has already been written, your own part lays open before you for you to choose your ultimate destiny.  Perhaps our coinciding struggles have been finely orchestrated to lead you to this one moment: The Bridge to God.

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Perhaps E’s stroke occurred for such a time as this, that the works of God might be displayed in her:

As he passed by, he saw a man blind from birth.  And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”  Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.  We must work the works of him who sent me while it is day; night is coming, when no one can work.  As long as I am in the world, I am the light of the world.”  John 9:1-5