Your Life’s Purpose

Difficult experiences in life often challenge us to reflect and examine our lives more deeply than usual.  Yes, there is grief, anger, regret, and frustration.  But there is also courage, hope, compassion, and purpose.  If you are struggling with purpose, and an emptiness inside, then it might be possible that God is challenging you right now, through this struggle, about your life’s calling.

God calls us.

We experience that call as an inkling in our heart that maybe there really is a God… Maybe I should find out about Him…  You may be on this page because you have felt that need, that calling.  If you are here, God wants you.  He is reaching out to you.

Perhaps all the struggles I have faced simply had their purpose in leading YOU here – to my story.  Perhaps God allowed all these things to happen in my life so that YOU might be offered this chance to know Him.  If so, one soul saved for eternity is worth all the sacrifice, pain, and challenge I have experienced.  YOU are worth it.

The purpose of this life is knowing God.

God made humanity for his pleasure, and it was always supposed to be a mutual relationship.  We messed it up, on our end.  So now the whole point of our lives is finding God – and being reconciled to him in relationship.  If we miss this, we miss the entire point of our existence.  Nothing else we accomplish matters if we don’t get this right.

If you do not know Him personally, then right now, God is calling you.  He has chosen you for this time, and for this purpose. 

Your soul is never going to die. While your body lives, you have the free will to choose your eternal destiny. God is offering you salvation by His grace, through faith in Jesus Christ. The price has already been paid; the gift has been purchased. God is offering it to you – will you take it?

You have done things that have broken God’s laws – “For all have sinned and fall short of the glory of God” (Romans 3:23).

Even one wrong thing carries the death penalty in God’s eyes – “For the wages of sin is death” (Romans 6:23).

Seeing yourself as lost and wanting to do something about it, is called “repenting”.

The only way to do anything about it is through Jesus Christ – Jesus says “I am the way, and the truth, and the life; no one comes to the Father but through me.” (John 14:6)

The Bible makes it clear that every sin has to be punished by death and paid by the penalty of innocent blood. Jesus lived a perfect life on Earth – though He lived as a man under God’s Law, He never broke the Law. This qualified Him to take our sins upon Himself to become a perfect sacrifice. Jesus died on the cross to take our punishment for us. His blood paid the price required by God for our sins.

“But God demonstrates His love for us in that while we were still sinners, Christ died for us.” (Romans 5:8)

It doesn’t end there, though. On the third day, Jesus was raised to life, to a new eternal body. When we join God’s spiritual family, we, too, will get a new eternal body someday.

“the gift of God is eternal life through Jesus Christ, our Lord” (Romans 3:23)

We chose to sin and Jesus chose to be a “sin-bearer” and take God’s wrath for us. God offers an all-inclusive “forgiveness slip” to every human on earth. If we believe what God has said about us (we are totally lost and have no hope of saving ourselves), and what He has done to fix it (Jesus is the only way as a Savior), we can obtain this “forgiveness slip”. We can ask God for Jesus’ payment to be applied to our account. This allows us to be declared innocent and sin-free in God’s Eyes – the debt we owed for our crimes is paid. Salvation is a change in legal standing before God – from “guilty” to “not guilty”. Jesus didn’t just pay PART of our debt, or even MOST of it, leaving some on the tab for us. He paid our ENTIRE debt.

“If you confess with your mouth, “Jesus is Lord”, and believe in your heart that God raised Him from the dead, you will be saved. For with the heart one believes and is justified, and with the mouth one confesses and is saved.” (Romans 10:9-10)

When you say Jesus is Lord, this means you believe He is God and as your Creator, He deserves to be Lord of your life. When you believe in your heart that God raised Him from the dead, you accept that what the Bible teaches about Jesus is true and that His death paid the price for your wrongdoings.

“For by grace you are saved through faith, and this is not from yourselves, it is the gift of God; it is not from works, so that no one can boast.” (Ephesians 2:8-9)

Say something like this to God (called prayer):

“Heavenly Father, I have broken your rules and I’m so sorry. It is against You that I have sinned. Please forgive me through the blood of Jesus Christ and wash away my sins. Come into my heart and seal me with Your Holy Spirit. Change me and make me alive in Christ. Help me now to walk with You until my very last breath. Amen”

“There is therefore now no condemnation for those who are in Christ Jesus.” (Romans 8:1 ESV)

If you asked God to forgive you, and have chosen to follow Him, you are now part of His family. Your adoption has been finalized and you are “born again”! God has given you a clean slate. It’s now time to learn more about Him, grow your relationship with Him, and choose to obey Him. It’s like any relationship – it takes time and dedication!

For whosoever shall call upon the name of the Lord shall be saved. – Romans 10:13 ESV

Detailed Salvation Plan

For I delivered to you as of first importance what I also received: that Christ died for our sins in accordance with the Scriptures,  that he was buried, that he was raised on the third day in accordance with the Scriptures…  (1 Corinthians 15:3-4 ESV)

1. Know How God Sees You

God loves you, and has known you from before the creation of the world.  He knew there would be a “you”.  You were created specifically to be in His family, in relationship with Him. So, what’s wrong?  Why does it feel like God doesn’t care – that He is absent?
The answer is sin.  Sin separates us from God.  Sin is anything we think, say, or do that goes against God’s laws.  This world is broken because people are trapped in sin.  Our sinful choices affect ourselves, each other, and even entire generations and societies.  God has given us free will to choose to do as we please, and many times, people choose sin.
What is the Law of God? In the Bible, God has given many instructions for living right before Him. These include the 10 Commandments among others. But apart from the Bible, God has written His commands on human hearts, which we refer to as “conscience”.  Our conscience is what tells us that murder is wrong.  It is what makes us angry at injustices, abuses, and crime.  We know we violate our consciences.  The telltale signs are lying about it, hiding it (doing it in secret), or covering it up.  This is how God can hold us as being without excuse.
Above all, God tells us to love Him with all our soul, heart, and strength, and to love our neighbor as ourselves.  If you love anything in your life more than you love God (or a fellow human being), you have broken this command.  Whenever you do anything you know you shouldn’t (lying, gossiping, pornography, stealing, cheating, sleeping around, saying “Oh my God”, disobeying your parents, etc), it is “sin”.  We hold ourselves up to God’s standards and see that we fall hopelessly short.  We’ve blown it, many times, and we know it.
“For all have sinned and fall short of the glory of God” (Romans 3:23 ESV)
You may ask – What if people choose to be good?  Our human condition can be compared to a drop of poison in a glass of water.  Whether there is one drop or many drops, the water is still poisoned.   There are many non-religious and religious people who are good and kind.  But no matter how “good” we are, we aren’t perfect.  God’s law requires us to be perfect. Here is a wonderful article discussing how Jesus explains our inability to save ourselves.
God’s laws are a mirror, to reflect back to us where we have failed.  Ask God to show you how lost you are.

  2.  Know Where You’re Headed

 You know you’ve sinned, you’ve broken God’s laws.  So what does that mean?
Our physical bodies die someday.  However, God created humans to be eternal.  That means the part of you that’s “you” – your spirit/soul – is going to live on forever.  God says that He has “placed eternity in the hearts of men” – deep down, we know that physical death is not the end.  When you die, you will stand before God and give an account of EVERYTHING you have done while alive.  Everything done in the darkness and secret will be brought to light before Him (and perhaps before the angels and the rest of humanity as well).  Everything you do is recorded in a book.

According to God, breaking even one of His laws, once, results in the death penalty.

“For the wages of sin is death” (Romans 6:23 ESV)
Death?? Isn’t that extreme?  God, as a supreme holy and righteous being, cannot tolerate any sin (breaking of the law) in His presence. God sees one sin as the same as being guilty of all sins.  That’s how high His standard is.  Unless we repair our relationship with God we will “die” for eternity.  Eternal “death” is actually eternal separation from God and others, in the “lake of fire” – a place of torment and suffering.
While your physical body is alive, you can determine the eternal destiny of your spirit.  Once your physical body dies, there are no second chances.
Yes, there are indications that there are different levels of suffering in hell, and that those who do worse things may suffer more.  However, everyone will suffer there, and God doesn’t want you to have to suffer AT ALL.

3.  Want to Change

We pursue, pursue, pursue, and when we accomplish it is exciting but also empty – now what?    The rich never have enough money, the mighty never have enough power, the beautiful always have some flaw.  We move from one thing to the next, never satisfied.  Why?
There *is* something missing.
God.
We are like lost sheep – wandering around aimlessly.  Sure there are some “good things” and distractions in this world.  But when it really counts, if we lost it all, if we face a car crash or a terminal illness – what is this life about?  We were meant to live in harmony with God, our Father.  His Spirit is meant to comfort us, to guide us, to bring us love, joy, peace, and hope.  Apart from Him, everything is meaningless.
We are born into this world as spiritual orphans.  We remain that way unless we listen to God’s call and find our way home.

Once God shows you how lost you are, and what that means, you now have a choice.  You can choose to ignore Him, or you can choose to do something about it.  God wants to restore the relationship.  But you have to want to restore the relationship too.  Relationships go both ways.

A change of heart, seeing ourselves as utterly lost and wanting to do something about it, is called repentance.  Just recognizing that we do bad things (as defined by God), but not having a desire to stop, is not true repentance.  We must truly want to be changed, to be restored to right relationship with God.

 4. There’s Only One Way Out

There is nothing *we* can do to fix our “wrongness” – no good work, no sacrament, no penance.  But because God our Father loves us, He has given us a way to restore the relationship.

Jesus says “I am the way, and the truth, and the life; no one comes to the Father but through me.” (John 14:6 ESV)

God does not want you to be separated from Him for eternity.  He created hell and the eternal Lake of Fire for satan and the fallen angels, NOT for humans.  But you will go there if you reject God’s rescue plan. He wants you to come back to His family.  So He sent a part of Himself, Jesus Christ, to die for you. The Bible makes it clear that every sin has to be punished by death and paid by the penalty of innocent blood.  Jesus lived a perfect life on Earth – though He lived as a man under God’s Law, He never broke the Law.  This qualified Him to take our sins upon Himself to become a perfect sacrifice.  Jesus died on the cross to take our punishment for us.  His blood paid the price required by God for our sins.

“But God demonstrates His love for us in that while we were still sinners, Christ died for us.” (Romans 5:8 ESV)

For the word of the cross is folly to those who are perishing, but to us who are being saved it is the power of God. (1 Corinthians 1:18 ESV)

It doesn’t end there, though.  On the third day, Jesus was raised to life, to a new eternal body.  When we join God’s spiritual family, we, too, will get a new eternal body someday.

“the gift of God is eternal life through Jesus Christ, our Lord” (Romans 3:23 ESV)

5.  Turn From Yourself Towards God and Believe

We chose to sin and Jesus chose to be a “sin-bearer” and take God’s wrath for us.  God offers an all-inclusive “forgiveness slip” to every human on earth.  If we believe what God has said about us (we are totally lost and have no hope of saving ourselves), and what He has done to fix it (Jesus is the only way as a Savior), we can obtain this “forgiveness slip”.  We can ask God for Jesus’ payment to be applied to our account.  This allows us to be declared innocent and sin-free in God’s Eyes – the debt we owed for our crimes is paid.  Salvation is a change in legal standing before God – from “guilty” to “not guilty”.  Jesus didn’t just pay PART of our debt, or even MOST of it, leaving some on the tab for us.  He paid our ENTIRE debt.

If you confess with your mouth, “Jesus is Lord”, and believe in your heart that God raised Him from the dead, you will be saved.  For with the heart one believes and is justified, and with the mouth one confesses and is saved. Romans 10:9-10  ESV

When you say Jesus is Lord, this means you believe He is God and He deserves to be Lord of your life.  When you believe in your heart that God raised Him from the dead, you accept that what the Bible teaches about Jesus is true and that His death paid the price for your wrongdoings.

For many years I didn’t “get” the simplicity of salvation and tried to “earn” it or “prove it to myself” (by repeating the sinner’s prayer many times, trying to live morally, etc).  However, salvation is not about anything we DO, but about what Jesus has already DONE.

We can’t earn it or maintain it in any way – we are not and will not ever be worthy of salvation.  The critical element is faith.  Faith in Jesus’ provision.  Faith in His completed work for us on the cross.  That’s the beauty of God’s grace.  “It is finished”.

For by grace you are saved through faith, and this is not from yourselves, it is the gift of God;  it is not from works, so that no one can boast.  Ephesians 2:8-9 ESV

Asking for Jesus’ sacrifice in our stead results in immediate salvation and sealing of the Holy Spirit.  That’s what being “Born Again” means.  We are forgiven.  We can’t accidentally lose our salvation, and God will never remove it from us.  We cannot be kicked out of the sheep fold.

[I don’t wish to be dogmatic about it, but there is some Biblical evidence that suggests we may retain free will to reject our salvation and leave the faith by our own choice.  It’s entirely possible that those who appear to do so were never TRULY in the faith.  However, some most certainly believed and acted like they were “Christians” at one point.  It is possible that they were deceived by their hearts and lulled into a false assurance of faith.  Regardless, it is very important to examine your own heart to see if YOU are in the faith.  It doesn’t matter about the past – what about today?  Are you trusting Jesus for salvation today?]

Say something like this to God (called prayer):

“Heavenly Father, I have broken your rules and I’m so sorry. It is against You that I have sinned. Please forgive me through the blood of Jesus Christ and wash away my sins. Come into my heart and seal me with Your Holy Spirit. Change me and make me alive in Christ. Help me now to walk with You until my very last breath.  Amen”

6.  What Next?

“There is therefore now no condemnation for those who are in Christ Jesus.” (Romans 8:1 ESV)
If you asked God to forgive you, and have chosen to follow Him, you are now part of His family.   He has forgiven you, and you have a clean slate.  It’s time to learn more about Him, grow your relationship with Him, and choose to obey Him.   It’s like any relationship – it takes time and dedication!
First, talk to God.  This can seem awkward at first, but talk to Him as you would to a best friend.  Nothing fancy, no complicated words or phrases, just talk to Him.  Tell Him how you feel, what you’re doing, what questions you have, what you need.  God’s not a magic genie – he doesn’t give us things for our selfish purposes.  He wants you to see yourself in His bigger picture.  He wants you to grow in holiness, to become more like Him.  If you ask God to help you know Him better, to help you understand His word and how He wants you to live, he always answers those prayers!
Second, read the Bible.  The Bible is more precious than food or gold – find one and keep it very safe. Read it every day.  Start in the book of John, then Romans, and then read the rest of the New Testament.  Each time, ask God to help you understand what you read.
Third, try to obey God.  Ask Him to help you.  As you read the Bible, He will teach you what He wants you to do. Deliberately choose to stop doing things He doesn’t like and commands against.  Deliberately choose to allow Him to help you be more like Him – patient, kind, forgiving, joyful, serving, gentle, self-controlled, honest.  You will still struggle with doing what you don’t want to do, and not doing what you want to do.  When you sin, ask God to forgive you.
Fourth, be baptized in the name of the Father, of the Son, and of the Holy Spirit.  This can be done in any body of water and can be performed by any true believer in Jesus Christ.  It should be done by full immersion (under the water) if possible.  Baptism isn’t necessary for salvation, but it is important to God as an act of obedience.  Through baptism, you symbolize your spiritual death and resurrection.  If you have an opportunity to do so, you should take it.
Fifth, try to find other Christians to spend your time with.  Our friends can influence where we are headed.  There are many Christian facebook groups where online friends can be found.  Trying to find a local church is also a good idea.  (There are so many and it’s difficult to know where to start.  Not all churches have true beliefs about the Bible and salvation.  I would recommend trying Baptist, Alliance, Gospel Churches, or Mennonite).

Sixth, teach others what you know.  As a follower of Christ, you now know the key to eternal life.  Tell others of the spiritual battle that is currently going on and help deliver them from the deception.  In this way you will literally pull them out of the flames of eternal fire!  Encourage others in the faith!  All we can do is plant seeds of the gospel and water sprouts of growth in other believers – God gives all the increase.  Never stop planting, watering, and praying!

Seventh, pray for miracles.   God’s Spirit works where the gospel of Jesus is being preached and where people are desperately seeking Him.  He WANTS to help you.  Pray for divine healing, protection, and deliverance.  That said, trials of faith are our destination.  Trust God in both the little things and the big things in life.  Put your faith in Him.

Eighth, read up!  Apart from the Bible, there are books and articles and sermons online you can learn from.  Books about growing in Christ I highly recommend are Jerry Bridges’ Pursuit of Holiness and Practice of Godliness.  This church has such wonderful articles.

7.  What if I still struggle with sin?

Even the godliest people struggle with sin – doing what we don’t want to do, or not doing what we want to do.   However, our hearts and minds are freed from being enslaved to it – if we call for help – God will provide a way out so we don’t HAVE to sin.  The trick is identifying temptation early, and halting it before we are sucked into full blown sin.

You will still sin, but you will have a desire to get back on track and restore your relationship with God (although individual sins won’t take away your salvation, it will put you out of relationship with God).  Sinning “grieves” and “quenches” the Holy Spirit who lives in your heart.  Thus, He will start to convict you of sins.  It is your job to listen to Him and follow His lead, to progress in holiness (sanctification).

8.  What if I Don’t “Feel” Saved?

If you do not feel secure in your salvation, IT IS RIGHT TO EXAMINE YOURSELF, to see if you are in the faith.

If you can continue in habitual sin without feeling remorse and guilt (even common sins like sex outside of marriage, homosexuality, gossip, lying, cheating…) then you should question whether you are saved.  The Holy Spirit will convict you of sin.

The “heart” is comprised of our mind/intellect, our emotions/feelings, and our will/actions.  We have feelings about God, we think through the facts about Jesus and the Bible, and our actions will demonstrate what we believe.  In each of these areas, we must rely on GOD to provide the faith.  We can’t make ourselves believe – we can’t force feelings, we can’t understand if our spiritual eyes are closed, and actions done on our own effort will consistently fizzle over time.  Examine if all 3 aspects of your heart are in alignment.  If not, confess that to God and pray for HIM to provide you with saving faith.  God rewards those who earnestly seek Him.

 

You will seek Me and find Me when you search for Me with all your heart.  Jeremiah 29:13 ESV

Do not give up!  Do not despair!  Cling to God with all your might, no matter how things look, no matter what others are believing, no matter how you feel.  Hold on firmly in the faith until death.  Refuse to allow doubt or thoughts of giving up to creep into your mind.

 

Please, God is calling you.  He LOVES you.  He CARES what you choose.

 

Read God’s Word, the Bible.  Suggested order:

  • The Gospel of John

    The Gospel of Mark

    I John

    II John

    III John

    Genesis

    Ephesians

    Galatians

    The Gospel of Luke

    The Gospel of Matthew

    I Corinthians

    II Corinthians

    Romans

    Psalms

    Proverbs

Only God’s word is infallible. Please read it for yourself to find Truth!

This isn’t a wait-and-see thing. TODAY is the day of salvation. We never know if we will be given another chance tomorrow.  Jesus is coming SOON, and will suddenly take all true believers to be with Him.  Those left on earth will face devastation and horrors never before seen by humanity.  Choose to follow Jesus TODAY.

Main Menu – Climbing My Mountain

 

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

I have been meaning to write about my feelings surrounding E’s diagnosis for a while 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 referred us to the local Children’s Center for assessment.  While waiting for our appointment, 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 of cerebral palsy made it worse.  I had almost daily nightmares.  I 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.  My doctor referred me to a psychiatrist.  We did not connect well.  In addition, 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.  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 strange time of hope and dread intertwined.

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 the leading causes of cerebral palsy.

And so began our “official” journey with hemiplegic cerebral palsy.

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 our 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.

Submitting the letter, with suggested action items for change, brought some measure of acceptance to me.  The anger began to fade.  It was enough that I could then launch headfirst into researching the best and newest therapies for E.  I downloaded scientific papers and journal articles.  We jumped on 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* to handle.  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 classified only as “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 was devastated.

I’m embarrassed to write this, but that 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 had always been quite timid and reserved, but how much of her lack of confidence was because of a focus on what was hard for her?

I decided to let go of functional goals, and just let her do “normal kid stuff”.  E was now “free” to develop at her own pace.

I see the benefit of what we did when E was younger carrying through in functionality even now, but I also regret pushing so hard.  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.

It’s so hard to find a balance between therapy and “normal life”!!!

Over the last several years we have been doing typical kid-activities and very little formal therapy.  We use taekwon-do and swimming lessons for gross motor skills.  We have continued with orthoses to help with alignment and range of motion.

Notably, E’s self-confidence started to grow by leaps and bounds since I stopped focusing on therapies.

When reflecting on my own path of mothering a child with a disability, I realize that I walked through the typical steps of grieving:

Image result for grief cycle kubler ross

I was in shock and denial for the first few months; this led to anger, blame, frustration for a period of about a year.  I vascillated between being overwhelmed and trying to control and fix the situation for another few years.  When E was 4 years old, I started sharing our story with others.  What helped me reach a measure of acceptance was releasing the guilt, regret, and control, sharing my story, and trying to find meaning or purpose to what had occurred.

I explored reasons why God might have 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 – even babies – in a fallen world.  While God allowed E to experience a stroke, He did spare her life.

That is one of the harsh realities of 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 undesirable.  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.  The collective decisions of every individual affects each one of us – and people do not always choose kindness.  God doesn’t promise to spare us, but He does promise to carry us through.  Not only that, but God willingly took on these harsh realities and came and lived among us, as one of us – He truly understands.  We can have hope for today, and hope for tomorrow, through Him.

I would be lying if I didn’t say it has been a struggle to find the good in this.  However, God has used this experience to draw me closer to His heart.  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.

I hold in my heart that perhaps God has orchestrated our whole pediatric stroke journey to bring glory to His Name.  I’m not sure when, or how, but I pray that the works of God might be displayed in E.

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

Difficult experiences in life often challenge us to reflect on and examine our lives more deeply than we otherwise would.  Yes, there is grief, and anger, and regret, and frustration.  But there is also courage, and hope, and compassion, and purpose.  If you are struggling with purpose, and an emptiness inside, then it might be possible that God is challenging you right now, through this struggle, about your life’s calling.  Perhaps all the struggles I have faced simply had their purpose in leading YOU here – to my story.  Perhaps God allowed all these things to happen in my life so that YOU might be offered this chance to know Him.  If so, YOU are worth all the sacrifice, pain, and challenge.

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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Main Menu – Climbing My Mountain

Massage Therapy and Chiropractic Adjustments for Hemiplegic Cerebral Palsy

Now that E is older, we have again broached massage therapy and chiropractic as treatment options for her chronic spasticity.

E had several chiropractic adjustments when she was an infant after her traumatic birth.  It’s hard to tell if these were effective or not, so we didn’t continue beyond this.  We tried myofascial release massage therapy when E was around 3 years old but she HATED it.  So although both chiropractic and massage therapy show benefit in cerebral palsy treatment, we hadn’t done either for a number of years.

Around the age of 6, E started to become very resistant to wearing her TLSO trunk support vest – she was embarrassed by it and complained that it was too hot and sweaty.  So, this year, I gave her the option of trying massage therapy and chiropractic instead of wearing the TLSO vest.  The massage therapist targets her tight muscles and tries to release built up tension. The chiropractor checks her spinal alignment, arm and leg length discrepancies, and muscle tone.  We have found these both to be very helpful modalities in her overall spasticity/tone maintenance.  Note that the benefit is in controlling muscle pain and tension, which in turn can promote normal growth (preventing bone growth complications, particularly scoliosis).  We have no anticipation that these treatments will assist with functional ability.

Massage Therapy:

E tends to have tightness all along her right (affected) side.  It is in her shoulder girdle, arm, wrist, fingers.  It is along her trunk, causing her spine to form a slight “c” shape when she sits.  It is to a lesser extent in her hamstrings, gluteus, calves, and other ankle/lower leg muscles.  Massage is able to loosen this tension quite significantly.  Unfortunately, the effects only last several days.  Ideally, I would think E should have massage therapy 3+ times a week – but this isn’t in our financial capabilities.  We tried attending appointments every 3 weeks for about 6 months (1/2 hour session, which was as long as E would tolerate – she watched movies on an iPad during her sessions).

The studies I had read on massage therapy for cerebral palsy had all talked specifically about “myofascial release”.  So initially I had sought out a massage therapist who was trained in “myofascial release massage therapy” (which some advertise).  Our chiropractor has explained to me that the term is kind of a gimmick – ALL massage therapy affects the myofascia and intends to release the tension in it.  So, basically, all therapeutic massage therapy (as opposed to relaxation massage) should work similarly, based on the experience and skill of your practitioner.

Here’s one study, showing benefit in reduced spasticity, but no associated functional improvement:

The effect of deep cross friction massage on spasticity of children with cerebral palsy: A double-blind randomised controlled trial.

RESULTS:  Of the 60 patients, there were 30(50%) in each group. The control group consisted of 14(46.7%) males and 16(53.3%) females compared to 16(53.3%) males and 14(46.7%) females in the experimental group (p=0.72). The overall mean age was 6.03±1.73 years. All patients (100%) were followed up for a period of 6 weeks and there was not a significant (p=0.26) improvement in experimental group compared to control group evident on Modified Ashworth Scale. The experimental group, however, had significant improvement after 6 weeks compared to the baseline values (p<0.001). However, functional level did not improve (p=0.55) by the end of study.

Massage therapy can assist with:

  • promoting relaxation
  • releasing muscle tension
  • decreasing tone in spastic muscles / increasing tone in flaccid muscles
  • encouraging muscle growth
  • improving circulation
  • body awareness (proprioception) in the affected side

You can ask your practitioner to show you some massage strokes to do at home, going from proximal to distal (truck to tips direction).  It would be most beneficial to your child if you could do this at home on a daily basis, if possible.

It is also helpful to incorporate gentle stretches into your child’s daily routine.  You can consult with a PT, OT, RMT, and Chiropractor for appropriate stretches.  When done consistently, these can make a big difference in your child’s range of motion.

Chiropractic Adjustment:

I found the following information on Chiropractic treatment helpful:

Chiropractic care is technically considered a manipulative and body-based therapeutic method that affects the body systems and structures – bones, joints, soft tissues, and neuromuscular system – that are manipulated beyond their passive range of motion and with appropriate use of force. It is a therapy that uses the manipulation of the spine and joints to relieve pain. The spinal manipulations are made using the chiropractor’s hands, and are referred to as “adjustments.”

Simply explained, the brain communicates with the body through nerves. Chiropractic care is based in improving the way brain control and muscles work together. The neuromuscular system sends messages from the brain, down the spine and into the nerves. If there is interference, the body is not able to function as effectively.

Chiropractic intervention aims to improve the structural aspects of the body to clear the pathway for the brain to communicate with the nerves. This can result in improved strength, balance, flexibility and coordination skills, especially in the limbs. One intervention doesn’t fix all, rather the intervention chosen and the location of treatment are relative to the symptom being addressed. Since Cerebral Palsy affects people differently, differing chiropractic modalities are used to address specific issues.

There is evidence that the chiropractic care can be helpful to children with Cerebral Palsy. A handful of studies indicates that children that underwent spinal manipulation could sit and stand with more ease. Also, the studies indicated that some children became more active, digested food more efficiently, slept more peacefully, and enjoyed improved coordination after undergoing chiropractic care.

  • Adjustment of the atlanto-occipital subluxations helped with children who had difficulty with sleeping,personality disturbances, and hypertonic musculature.
  • Myofascial release may be used to assist in decreasing the severity of spinal distortion and aid in stabilizing gait patterns in children with spastic Cerebral Palsy who have muscle contractures in the paraspinals, lateral thigh muscles, lower extremity abductors, Achilles tendons, and wrist extensors.

From www.cerebralpalsy.org

In reviewing the literature, there are not many formal studies on the benefits of chiropractic care for hemiplegic cerebral palsy.  However, it is suggested that chiropractic care can assist with:

  • gait patterns
  • hypertonic muscles (spasticity)
  • joint pain or stiffness
  • muscle contractures
  • neck pain and tension
  • scoliosis (curvature of the spine) prevention or treatment
  • sleep difficulties

E started regular chiropractic adjustments about 9 months ago.  At first she was going every 4-6 weeks, but in the last few months we have been taking her every 2-3 weeks.  We have actually stopped massage therapy (appointment overload!) and are just doing the chiropractic for now, and are finding similar benefit.  The best combination would be daily at-home massage therapy, occasional therapeutic massage therapy (unsure ideal timing for E), plus regular chiropractic (every 2 weeks for E is what we have found).  I just haven’t gotten into a routine of trying massage at home yet…

It took several tries to find a good match for a chiropractor.  The one we have found is very proactive and researches things that may help E in between our appointments.  At each appointment, he:

  • Assesses E’s spine for straightness
  • Assesses her muscle tone (spasticity)
  • Provides myofascial release to high tone muscles
  • Applies vibrational treatment using a vibrocussor (sp?) to spastic muscles
  • Works on loosening her hip flexors and shoulder girdle
  • Sometimes provides adjustments to her ribs or T spine or L/S spine
  • Assigns exercises and stretches he wants her to do at home

We have found that going regularly to the chiropractor has decreased E’s tone in her arm and leg and improves her apparent arm and leg length discrepancies.  Going from 2 to 3 weeks in between appointments we notice a definite increase in tone.  It is also reassuring to me that her spinal alignment is being closely monitored.  Before writing this post, I was not aware that chiropractic can improve sleep – but E’s sleep has improved since having regular adjustments (from never sleeping through the night to sleeping through the night 1-2x a week).

Main Menu – Climbing My Mountain


Difficult experiences in life often challenge us to reflect on and examine our lives more deeply than we otherwise would.  Yes, there is grief, and anger, and regret, and frustration.  But there is also courage, and hope, and compassion, and purpose.  If you are struggling with purpose, and an emptiness inside, then it might be possible that God is challenging you right now, through this struggle, about your life’s calling.  Perhaps all the struggles I have faced simply had their purpose in leading YOU here – to my story.  Perhaps God allowed all these things to happen in my life so that YOU might be offered this chance to know Him.  If so, one heart won, and one soul saved for eternity is worth all the sacrifice, pain, and challenge.  YOU are worth it.

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.  Maybe all your life has been leading to this one moment: The Bridge to God.

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Childhood Obesity – Our Experience

Our daughter E was born at the 50th centiles for both weight and height.  Around 12-18 months old, she started rapidly falling down both curves, and eventually around age 2-3 she was diagnosed with food allergies (dairy, egg, and soy proteins).  She actually turned out to have FPIES (food protein induced enterocolitis syndrome).  The only treatment for this is strict avoidance of the offending foods.  Even minute quantities of these cause her to have horrible abdominal cramping, nausea, vomiting, and sometimes diarrhea. She became a very picky eater because food often made her feel sick.

Finding foods E likes and doesn’t react to has been challenging.  She was able to hold her own, though, and started tracking along the growth curves around 0-1% for height and 5-10% for weight for about 3 years.  She is followed by an endocrinologist for her growth and has been diagnosed with idopathic short stature (initially it was felt she had constitutional growth delay).  [I personally suspect her stunted growth has to do with the several years it took to diagnose her allergies, when she wasn’t digesting much of the protein in her diet.]

Anyways, about two years ago now, E started to increase in weight proportionately more than height.  This could be because she started enjoying foods more (getting less picky; she had recently outgrown the egg allergy so more foods were now an option as well), so we didn’t worry about it at first. We were actually encouraged that she was eating better.  We thought maybe she was getting ready to have a growth spurt…

Then suddenly we realized that she had gained a lot of weight and never did have a corresponding growth spurt.  She had rolls of extra skin, double chins, and no longer fit any of her clothes (and not because they were too short).  I also noticed that exercise became more difficult for her – she would become winded more frequently and was more resistant to running and active play.  Gross motor skills have always been challenging for her with her hemiplegia and she has always preferred to be sedentary, but this was a noticeable change.  She had also started complaining about her knees hurting.

Since E is followed quite frequently by various health care professionals (including pediatrician, endocrinologist, and others), I was surprised that no one had expressed any concern about this to us.  I did a BMI calculator for children (BMI is calculated differently for kids than adults) online and E was in the 98th centile.  (CDC BMI Percentile Calculator for Child and Teen)

Less than the 5th percentile is considered underweight; between 5-85% is a healthy weight; 85-95% is considered overweight; 95% and higher is obese.

I already was aware that being overweight/obese as a child can have significant health consequences.  These include cardiovascular disease (including increased stroke risk), continued obesity (over 80% likelihood), type 2 diabetes, asthma, sleep apnea, increased cancer risks, and psychological stress.

If you can relate to this experience, it is important to discuss this issue with your child’s health care providers.  Regular monitoring is necessary and nutritional consultation is appropriate.  Testing for contributing factors is often indicated.  Several health issues can cause rapid or unexplained weight gain, including (but not limited to) thyroid disease.  Because I have a thyroid condition, we had E’s thyroid levels checked (free T4 and TSH).  She also had a CBC and blood glucose screen.  These all came back normal.

Dieting in children can have very negative effects on growth and development.  The goal with overweight/obese children is to try to slow or stop the weight gain while height catches up.  (This of course varies with the age and developmental stage of the child).

Instead of “dieting”, we made some long term dietary changes.  We decided to control E’s portions for pasta and grains (which she loves) and allow her unlimited fruits and vegetables (which she doesn’t love).  She doesn’t tend to overeat meat/protein or dairy (almond/coconut) so we kept that the same.  We implemented these changes immediately.  The first few weeks were difficult as E struggled with feeling hungry.  Somehow she seemed to have lost that ability to sense when she was full, even though she had been very good at that when younger.  (We had done Baby Led Weaning, which I highly recommend).

We explained to her the importance of eating healthy so that she feels good and so that her body can develop properly.

After several months, E became quite good at stopping eating when she was full, and wouldn’t feel compelled to clear her plate even of things she loves.  I also have to remind myself not to give her so much food – it is better to give too little and have her request seconds, than to give her too much and have her overeat.  So this is a job on my part, to not let my eyes be too big for her stomach!  I do require her to finish her fruit sometimes, as she struggles with constipation.  If she is still hungry after her fruit, I let her have seconds.  But more often than not, she decides she is truly full.

We also deliberately increased her physical activity.  We enrolled her in swimming lessons, Taekwon-do, and dance.  We also started more deliberately walking around the neighborhood and to parks.  I try to incorporate some form of physical activity into every day.

It has been a full year now and although E hasn’t lost any weight, she hasn’t gained any either.  Because she grew, she has gone down from 98% to 95% in her BMI.  Our goal is to get her BMI down under that 85% into the healthy range.

Here are some resources on childhood obesity from the American Heart Association:

  • Understanding Childhood Obesity is an American Heart Association sourcebook on child nutrition and physical activity. Both the full and condensed downloadable PDF versions are an update of the 2005 version.
  • AHA Recommendation – Overweight Children – Obese children are more likely to be obese adults. Successfully preventing or treating overweight in childhood may help reduce the risk of heart disease, adult obesity and other complications.
  • AHA Scientific Position – Physical Activity and Children – Physical inactivity is a major risk factor for developing heart disease, stroke, high blood pressure, overweight/obesity, and diabetes. The American Heart Association recommends that children and adolescents participate in at least 60 minutes of moderate to vigorous physical activity every day.
  • AHA Scientific Position – Dietary Recommendations for Healthy Children – The American Heart Association has specific healthy dietary guideline recommendations for all adults and children over the age of 2 years.

UPDATE:  E has decreased another 3% on the BMI scale, to 92%, over the last 6 months.  This seems to be a safe and manageable rate of fat loss for her.

Main Menu – Climbing My Mountain


Difficult experiences in life often challenge us to reflect on and examine our lives more deeply than we otherwise would.  Yes, there is grief, and anger, and regret, and frustration.  But there is also courage, and hope, and compassion, and purpose.  If you are struggling with purpose, and an emptiness inside, then it might be possible that God is challenging you right now, through this struggle, about your life’s calling.  Perhaps all the struggles I have faced simply had their purpose in leading YOU here – to my story.  Perhaps God allowed all these things to happen in my life so that YOU might be offered this chance to know Him.  If so, one heart won, and one soul saved for eternity is worth all the sacrifice, pain, and challenge.  YOU are worth it.

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.  Maybe all your life has been leading to this one moment: The Bridge to God.

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Taming the Temper – Social and Emotional Struggles in Pediatric Stroke / Hemiplegic Cerebral Palsy

I was deeply moved by reading stories posted by moms on the Hemi-Kids support group about their children having social issues at school.  Unfortunately, it seems, from hearing stories upon stories of pre-teen/teen hemi-kids, that schools can be difficult to navigate physically, emotionally, and socially for some of these more sensitive kids.  Kids with extra challenges can feel overwhelmed, anxious, and embarrassed about their differences.  They often have to work harder to achieve similar results, or maybe can’t achieve them at all.  Studies have found that hemiplegia is unique in that disability isn’t necessarily obvious, and so peers can actually be much harder on these kids than if challenges were more apparent.

Emotional and Behavioral struggles are more common in kids with brain injuries (stroke, cerebral palsy, etc) than in the neurotypical population.  Whether this is due to the actual area of damage or to altered pathways because of the damage will vary for each child.  These are the unseen challenges our families face, and can sometimes be more difficult than the visible (physical) hurdles.

There is an increased prevalence of emotional and behavioural difficulties compared with the general population and the determinants of such difficulties are similar. I wondered why are emotional and behavioural difficulties more common in children with CP than in the general population? A common view is that the brain damage may have disrupted pathways or networks which regulate emotions and the learning of behaviour and render the brain less adaptive. The present finding that the difficulties are more common in the children with an IQ of less than 70 would support this. But it would also support the view that there may be unrecognized subtle learning difficulties which render many situations more difficult to cope with, leading to the reactive behaviour problems displayed by most children in such circumstances. Another possible cause is that the child may feel self-conscious and embarrassed in aspiring to be like other children and as a result experience emotional symptoms and feelings of isolation. This might explain why children with hemiplegia are more likely to have emotional and behavioural difficulties than children with more severe motor problems. Because the difference between them and the general population is smaller, their peers, parents and teachers, and they themselves may have unrealistic expectations that ‘normality’ can be achieved; peers in particular may be more likely to tease and discriminate. However the current finding of these difficulties being already present in preschool children argues against such an explanation as self-consciousness and discriminatory attitudes from peers are unlikely to be present so soon.

Parent-child interactional styles may also contribute to the higher prevalence. Parents of children with CP experience more stress than parents of children in the general population; and parental stress is known to be associated with emotional and behavioural difficulties in all children. But maybe even more important is whether parents of a disabled child manage and set boundaries differently for a disabled child. I highly recommend the article by Woolfson which reviews the literature on how societal views and parent preconceptions may mix with feelings of guilt and sadness to alter fundamentally how parents deal with a child with CP. Certainly the finding that emotional and behavioural difficulties are already present in the preschool years when parent-child interactional styles are set is consistent with the hypothesis that a disabled child may be managed differently.

(From: Why are Children with Cerebral Palsy More Likely to Have Emotional and Behavioral Difficulties, by Allan Colver)

E struggles with emotional regulation.  She gets upset easily and stores up emotions until they burst out.  She still requires a lot of emotional guidance, which I find much more challenging than the physical assistance now that she is older.  However, I have found that the answer lies in patient empathy.  This is generally well described in the mindsets of “attachment” or “gentle” parenting.  Punishment is not effective, and further isolates E from feelings she cannot control or contain.  E frequently feels overwhelmed, insecure, and overstimulated.  “Typical” things take more work for her to process, practice, and learn.  She is embarrassed by her splints and braces.  I believe her tension and feelings just build up without her knowing.  I am trying to get better at connecting with her to help her release these pent-up frustrations BEFORE they boil over.

Some resources I have found helpful:


Difficult experiences in life often challenge us to reflect on and examine our lives more deeply than we otherwise would.  Yes, there is grief, and anger, and regret, and frustration.  But there is also courage, and hope, and compassion, and purpose.  If you are struggling with purpose, and an emptiness inside, then it might be possible that God is challenging you right now, through this struggle, about your life’s calling.  Perhaps all the struggles I have faced simply had their purpose in leading YOU here – to my story.  Perhaps God allowed all these things to happen in my life so that YOU might be offered this chance to know Him.  If so, one heart won, and one soul saved for eternity is worth all the sacrifice, pain, and challenge.  YOU are worth it.

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.  Maybe all your life has been leading to this one moment: The Bridge to God.

download

Main Menu – Climbing My Mountain

Our Orthoses and Therapies Age 4-5 – SPIO, McKie, Bamboo, Ottobock

As E gets older, her orthotic and therapy needs change.  This is very individual, but I will update with what is working (or what hasn’t worked) for us!

I have found that at times, when I focused on therapy and outcomes, I began to view E’s physical challenges as obstacles to overcome.  Since I am a problem solver, these obstacles became “problems”, to which I needed to find “solutions” – such as CIMT, ABM, MNRI.  This played out most clearly in our last trip to California for ABM/MNRI, where I pushed to follow the therapy plan with (as I see it now, in hindsight) disregard for E as a person.  She was sick, she was a toddler, and it was way too much for her.  Desiring to please me, she mostly cooperated – but did end up shutting down emotionally.  As a result, we didn’t see much improvement from that therapy trip.  Therapy only works if your child is engaged and reasonably happy – an upset brain doesn’t lend itself to learning.

Since then, I have learned to SLOW DOWN.  Yes, therapy is important.  But not at the sacrifice of personhood.  E is so much more than a “tricky” arm and leg.  I would love to maximize her abilities and prevent future complications, but what is even more important to me is her heart.  Wise advice from those further down the road than us – Recovery is a marathon, not a sprint.  You don’t have to do it all today. 🙂

Slowdown

Upper Limb:

Thumb Splint – E still typically keeps her thumb postured in her palm unless consciously opening it.  We have found two options useful to us – one is the SPIO wrist/thumb sleeve.  It probably works better than the McKie for keeping the thumb joint out and stable, but it is kind of tight on E’s arm and didn’t fit very long (she has chubby arms); we didn’t find it helped with the wrist.  Cost is around $31 and it can be ordered online – (http://www.spioworks.com/category/31/wrist-and-hand).  Our mainstay for the thumb has been the McKie thumb splint.  Measuring is easy and we have had no issues ordering online – cost is around $25. (http://www.mckiesplints.com/features.htm).  The palmar surface is nice and open with this splint.

Wrist Splint – E’s wrist tends to bend downwards quite often throughout the day.  She is able to elevate it with effort since our Alabama CIMT camp.  To maintain range of motion, we find the Ottobock cock-up wrist splint very effective.  It also doesn’t cover the whole palm (a good thing to preserve sensory experience) and is less bulky than a Benik.  There is an adjustable metal stay in the wrist area.  We often layer the Ottobock over the McKie.

Elbow Brace – We continue to like the Bamboo Brace for elbow posturing.  It comes with 5 or 6 different strengths of stays that you can use interchangeably.  The Bamboo has been helpful for keeping the elbow straight when learning to hold handlebars (tricycle, bicycle).  We also use it when E is eating as that is another time her elbow postures.  It is also a pretty cheap investment at around $50 online. (http://www.amazon.com/The-Bamboo-Brace-Infant-Toddler/dp/B0051747D8)

CIMT Constraint – We have had an orthotist fashion a constraint cast out of thermoplastic material for E’s left arm when we practice CIMT.  This has been much less bulky, cooler, and cheaper than a typical fiberglass cast.

We haven’t found a need to night brace, as E is typically loose and relaxed when asleep.

Lower Limb:

AFO/UCBL –  We ended up going to see Dr. Paul Jordan in New York for specialized orthotics.  He felt that E did not need SPML surgery as her range of motion videos we sent were within acceptable bracing limits.  He did an assessment and impressions of her lower legs and feet on a Tuesday, they fashioned the orthotics on Wednesday, and we went in for our fitting on Thursday.  E got a modified AFO for her affected side and a modified UCBL for her unaffected side, which was doing some abnormal compensating.  You may be wondering – how were they different from standard AFO’s and UCBL’s?  Dr. Jordan demonstrated to us how applying “arch support” did not actually accomplish an ideal foot position, but just moved the fat/skin.  This is going to be difficult to explain properly, but there was a point on the bottom of E’s feet where, when pressed, her ankle would give way and roll.  By placing the support under that point (instead of the “arch”), he was able to correct her foot position.  I may have said that completely wrong, but whatever he did, it corrected her gait quite substantially.  Perfect, no.  (but much better than the conventional offerings).  Note: Dr. Jordan has adjusted the orthotics via mail based on videos we have sent and markings we make on them.

Trunk Support:

SPIO – We currently have the shorts and the TLSO vest.   The shorts don’t seem to make any difference to E’s posture or gait, so we didn’t re-order them.  The vest does improve E’s seated posture, and I would recommend it for that as a cheaper alternative than the DMO and it is definitely easier to apply than Theratogs.  It is hot in summer, though, so we mostly just wear it in the fall, winter, and spring.  Each of these fit about a year or so before we have to size up.  The TLSO is quite adjustable and forgiving if you get it a bit on the larger side.  We also order these directly online. (http://www.spioworks.com/product/26/classic-tlso)

Therapies:

Although we have been using orthoses somewhat regularly as above, we haven’t been doing much targeted therapy for the last year+.  I feel like we did a huge push her first 3-4 years with therapies, and while we made some wonderful gains, she definitely started to plateau in her abilities.  What started to become more important was “regular kid stuff”, so this has become our new “therapy”:

  • playground confidence – going to various playgrounds and gaining increased skill and confidence on the structures
  • scooters – practicing on 3-wheeled scooters
  • tricycle – practicing pedaling and steering
  • balance/strider bicycle – practice steering and balance
  • swimming – gaining water confidence (in parent-assisted classes)
  • gymnastics – with parental assistance, basic level
  • obstacle courses

This has also helped our lives to feel more “normal”!

I won’t lie, E’s activities have been limited by her stroke.  Although she is musical, she hasn’t been able to pursue music lessons past the introductory levels because of fine motor challenges.  She is hesitant and needs assistance on playground equipment and at her gymnastics classes.  She is still working at getting steering and pedaling coordinated on a tricycle and never did get the hang of gliding on a balance (strider) bike.  E has noticeable gait issues in both walking and running.  She has difficulty with dressing and undressing.  She uses her affected hand mostly as an assist, and the arm often moves as one unit to stabilize objects more than to functionally participate.  I say this all matter-of-factly, because although it is part of who she is, it doesn’t define her.  We all have different strengths and challenges.  Part of life is learning to embrace all the bumpy bits in ourselves and others, for we are none of us without flaw.

Difficult experiences in life often challenge us to reflect on and examine our lives more deeply than we otherwise would.  Yes, there is grief, and anger, and regret, and frustration.  But there is also courage, and hope, and compassion, and purpose.  If you are struggling with purpose, and an emptiness inside, then it might be possible that God is challenging you right now, through this struggle, about your life’s calling.  Perhaps all the struggles I have faced simply had their purpose in leading YOU here – to my story.  Perhaps God allowed all these things to happen in my life so that YOU might be offered this chance to know Him.  If so, one heart won, and one soul saved for eternity is worth all the sacrifice, pain, and challenge.  YOU are worth it.

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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Main Menu – Climbing My Mountain

 

Homeschooling Our Stroke Survivor – Academic Challenges K-Gr2

We didn’t set out planning to homeschool.  It just kind of evolved from the situations we found ourselves in.  We had been advised to hold E back for a year before starting Kindergarten as she also has constitutional growth delay in addition to her gross motor delays (balance, coordination, physical skills).  She didn’t qualify for an aide (being “too functional” to qualify for access to the limited pot of funding), but was unable to independently potty or dress and has difficulty navigating in crowded situations.  So instead, I homeschooled her so that she wouldn’t fall behind.  The further we get into this adventure, the more I appreciate it!  We have subsequently started homeschooling our younger child as well.

The process here is that we join a school board and notify them of our intent to homeschool (starting in Grade 1; Kindergarten is optional).  We then choose Aligned (teacher directed), Traditional (parent directed), or some combination of the two.  Last year we did Aligned, this year we did Traditional.  Either way, E has a teacher who comes to our house several times a year to view her portfolio and progress.  We just save up all her crafts, workbooks, writing samples, and pictures of projects and field trips.  I have an IEP in place for E just like in public school, which allows her to dictate answers to me to reduce some of the fine motor burden of writing.  We also have other fine and gross motor goals for her specified.

We have completed 3 years of homeschooling now, and have discovered that E does seem to have some learning challenges.  While common among stroke survivors, I wasn’t really anticipating much of an issue since her stroke was sub-cortical (in the white “connection” material -axons- instead of the grey matter -neurons).

Having given much thought to this, I am unsure if the challenges are related to the stroke injury itself, or more as a side-effect.  In particular, I am wondering if the challenges are because her brain has had to do so much alternate wiring?  Perhaps her neurological connections may not be very streamlined, or maybe her brain has to work so much harder at typical tasks that it doesn’t have as much energy for academics?  Whatever the reason, the challenges have slowly guided me into a much more relaxed approach to learning.

I started out very excited in Preschool / Kindergarten and set out with charts and workbooks and learning resources.  E struggled with all the workbooks, hated school, and resisted all formal learning.  Since the early years are supposed to be FUN, I had to re-evaluate what our goals were.  Learning is vitally important to me – I am a lifelong learner who has a passion for study.  However, for E, I have cut everything back to the basics of reading, writing, and math for now.  We watch The Magic School Bus and Dr. Binocs for science, and do experiments.  We talk about abilities, disabilities, social issues, and health as situations present.  Everything else is about life – practical, everyday things.

Here are some wonderful resources for this approach:

The Hurried Child – I really love this book and it has given me much-needed perspective.  Here’s an Article on The Hurried Child.

Better Late Than Early  / School Can Wait – I haven’t read these but they came recommended to me from some other homeschooling moms of children with disabilities.

Homeschooling approaches that work best with learning challenges:

Charlotte Mason / Unit Studies

Unschooling

Learning Disabilities Online

E’s academic struggles (early elementary):

Writing:  She finds the fine motor skill of writing difficult, and it takes her a long time and a lot of concentration to form letters. Not surprisingly, she doesn’t enjoy it at all.  I try not to pressure her too much, so we try to do just a little bit of writing a day (Handwriting Without Tears workbooks/copywork).  Since her stroke has forced her to be left-handed, I feel it’s probably kind of like all those left-handed kids that were forced in school to be right-handed back in the day.  It doesn’t come naturally, it’s strained, and sloppier than if she would have been able to be right-handed.

Reading: E has been read to extensively since birth, and has always enjoyed stories.  We do notice that expressive language is challenging for her (she struggles to put things into words).  Reading also has been coming slowly for E.  She is making wonderful progress, but it hasn’t come quickly or easily.  We have been reinforcing the basics with a variety of phonics programs (www.readingeggs.com; Hooked on Phonics; BOB books; various phonics books).

Math:  E struggles with the relationships between numbers.  Again, we have been trying to lay a solid foundation on the basics of adding and subtracting.  She *really* dislikes workbooks and worksheets so I am trying not to panic but we are taking things slowly.  We started out with Math-U-See, which has manipulatives and DVD teacher presentations.  She disliked the workbook portion so we are using http://www.mathseeds.com (preschool to end of grade 3).

Homeschooling Benefits:

  • Is an excellent way to bond with your children
  • Instead of losing them to “peer orientation”, you are able to pass down your values and worldview.
  • Homeschoolers generally perform better in all aspects of academia and social skills than their public schooled counterparts [see this Fraser Institute Paper on Canadian Homeschooling]
  • The child-to-teacher ratio is very low, individual attention is high
  • Children get MUCH more time to play and explore their interests
  • Busywork can be eliminated, focusing on what you and the child deem important to learn instead
  • Nothing “falls through the cracks” – you know exactly what your child’s strengths and weakness are and can tailor learning and help appropriately
  • You get to learn along with your child
  • You have lots more time for therapy, appointments, and can properly apply and monitor orthoses

I encourage you to consider this option for your child, if you think you might be able to make it work!  There are many resources and supports for homeschooling these days – try finding a facebook homeschooling group in your area!

Here might be some places to start:

Our Family’s Educational Philosophy

Each child is a unique person, with different interests, strengths, and challenges.  Each child is capable of becoming a responsible citizen, developing good character, and making wise choices.  Progression will be at each child’s own pace; encouraging areas of strength and allowing extra assistance in areas of weakness.

Throughout our child’s education we will endeavor to develop:

  • The desire and skill for life-long learning
  • Excellence in reading, and oral and written communication
  • Excellence in mathematical ability and spacial/abstract thinking
  • Critical thinking, problem solving, and decision making skills
  • Curiosity and imagination
  • Exploration and understanding of the world using the scientific method
  • Resilience and instill confidence in own abilities, strengths, and uniqueness
  • An evaluation of the past and present of humanity, utilizing biographies and “living books”
  • An understanding of social issues, and a discussion of root causes
  • An understanding of and respect for political, cultural, and religious diversity around the world
  • Introspection and reflection for self-evaluation
  • A healthy, active lifestyle
  • Well-informed choices and habits that contribute to the well-being of self and others
  • An appreciation for excellence in literature, art, and music
  • A foundation of good citizenship – rights and responsibilities, service to others
  • A priority for relationships and empathic thinking
  • Practical life skills, including: budgeting & work, cleanliness, communication, community, food & nutrition, hygiene & personal habits, survival skills
  • Strength of character – raising moral, responsible, authentic people of integrity, including: courage (bravery, persistence, integrity, vitality, personal initiative, truthfulness, fortitude), decency and propriety (cleanliness, neatness, order, regularity, diligence, self-discipline, hard work, obedience, self-control, self-regulation, even temper), humanity (love, kindness, peace, patience, goodness, gentleness, courtesy, forgiveness, good manners, generosity, faithfulness, usefulness, mercy), justice (citizenship, responsibility, loyalty, teamwork, fairness, leadership), temperance (humility, modesty, prudence, self-restraint), transcendence (appreciation of beauty and excellence, gratitude, hope, joyfulness, humor, meditation, reverence, outdoor appreciation, thanksgiving, spirituality), wisdom and knowledge (creativity, curiosity, open-mindedness, love of learning, perspective, attention, imagining, observation, remembering, thinking)
  • Social IQ – the ability to negotiate a variety of social situations with grace and skill
  • Emotional IQ – the ability to manage the range of human emotions with dignity
  • Biblical discernment and worldview, including an understanding of place and purpose

We will endeavor to provide a practical, living education that maximizes each child’s potential.  Our approach is eclectic – a blend of Charlotte Mason’s unit studies and “living books”, Classical Education’s guidance through the three stages of learning: Knowledge, Understanding, and Wisdom, and Unschooling’s holistic child-directed learning and lack of rote memorization of isolated facts.

 

Main Menu – Climbing My Mountain


Difficult experiences in life often challenge us to reflect on and examine our lives more deeply than we otherwise would.  Yes, there is grief, and anger, and regret, and frustration.  But there is also courage, and hope, and compassion, and purpose.  If you are struggling with purpose, and an emptiness inside, then it might be possible that God is challenging you right now, through this struggle, about your life’s calling.  Perhaps all the struggles I have faced simply had their purpose in leading YOU here – to my story.  Perhaps God allowed all these things to happen in my life so that YOU might be offered this chance to know Him.  If so, one heart won, and one soul saved for eternity is worth all the sacrifice, pain, and challenge.  YOU are worth it.

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.  Maybe all your life has been leading to this one moment: The Bridge to God.

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