Wednesday, September 28, 2016

To the Parent Blindsided by Your Child's Diagnosis

Photo Credit, David Niblack,
I had heard rumors about You,
but now my eyes have seen You.
Job 42:5, HCSB

I spoke to you today, and I could see the shock on your face and hear the fear and uncertainty in your voice. Of all the things you've dealt with, the things you imagined you might have to handle, you never saw this one coming. You didn't even suspect that your child would receive that diagnosis. Welcome to the club you never wanted to join. 

As the parent of a child with multiple diagnoses, I have been where you are. I have listened to doctors pronounce diagnoses over my child. Some were expected, and some were unexpected, and every one was like a punch to the gut. Life is never the same again.

Except somehow, after the initial shock, anger, disbelief, grief, researching, learning, and adapting, it is. Life continues to move forward in a new normal, one that was unimaginable before that becomes second nature. As this process takes place, you go from thinking almost incessantly about the diagnosis and seeing your child in light of that while you get control of the situation to realizing that your child is the same one you had the day before the diagnosis. It's easy to lose sight of that when new professionals, therapies, medication regimens, surgeries and procedures, and medical equipment enter your lives, but it's true. Your child is who he is. He's the same child you had before, and that won't change. Most likely, he will be much more resilient while processing what this new diagnosis means than you will.

Through all of this, you will find God in the middle of it with you. I have laid it all out before him many times, expressing exactly what I was feeling and knowing He is big enough to handle it, no matter how ugly the emotions I needed to release. And I have found, like Job, that I come through these times knowing Him in ways I never have before. Cling to Him. He won't abandon you or your child, or treat you like you have cooties. He'll be right by your side the whole way.

I'm so sorry you're having to go through this and that your child, who has already been through so much, has to deal with something else. It's not fair, and I hate it for you both. Don't be afraid to seek out a listening ear if you need one. Make it someone you trust, who will look out for what's best for your family as you deal with this. I am praying for you right now.

Pray: Father, I bring this parent before you now. This new diagnosis is a hard thing to deal with. It's hard to process it all and figure out how to handle the changes in the daily routine as well as how to pay for everything. Please bring this parent the resources and people alongside to help during this period of transition - and for as long as it takes afterward. I pray that this family would cling to You and would come out of this storm knowing You better than ever before---not just knowing about You. Give them peace, strength, and rest in You right now. Amen.

Tuesday, September 27, 2016

Before Me and Behind Me

"You hem me in behind and before, You lay Your hand upon me." Psalm 139:5 NIV
"You go before me and follow me. You place Your hand of blessing on my head." Psalm 139:5 NLT
"You have enclosed be behind and before, And laid Your hand upon me." Psalm 139:5 NASB
"Thou hast beset me behind and before, and laid thine hand upon me." Psalm 139:5 KJV
"You have encircled me; You have placed Your hand upon me." Psalm 139:5 HCSB

September is a very reflective month for me, not just the reflections induced by the restarting of school and classes, but the reflection that frequently accompanies birthdays. Three of our five children were born in September. One of those was our son Cooper.

He pushed his way into the world weighing a solid 9lbs. 11oz. and God bless him he has never looked back. Now, at 17, he stands 6 feet tall and weighs, well let's just say he looks the part of being an adult. Our son was diagnosed with Autism when he was 18 months old, and he has been greatly impacted, our family has been greatly impacted also.

Cooper has two older sisters and one week before his birthday in 2005 he was blessed with two younger sisters. He is right in the middle of four girls. I have often joked, that is probably why he doesn't talk much.

Some of the struggles our family has faced over the years are unique, while others are probably very similar to yours. So I think you will understand when I say, as parents of a child with their own different challenges and circumstances we cling tighter to some verses than we do others. I suppose like most we read through the lens of our existence, through our own God-given perspective. 

I have always held closely to my heart verses like:

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalms 139:14 NIV

This is a wonderful affirmation of the incredible gifts we are given in the children God has placed with us.

Then there are the verses leading up to Psalms 139:5...

"Oh Lord, You have searched me and known me. You know my sitting down and my rising up; You understand my thought afar off. You comprehend my path and my lying down, And are acquainted with all my ways. For there is not a word on my tongue, But behold, O Lord, You know it all together." Psalms 139:1-4

I need to know this, not just for myself, but for my children. There is incredible comfort and peace in that knowledge, in knowing whatever happens, God already knows. As we face the challenges of parenting all of our children, we have to stand on the stable ground of knowing this one thing...

God knows.

He knows me.

He knows my children.

But then, there is that 5th verse:

"You hem me in behind and before, You lay your hand upon me."  Psalms 139:5 NIV

You see with that one, I don't just get to know it.

I get to see it.

I have always kind of chuckled at the fact that our one son has, in fact, ended up surrounded by girls. It's an interesting conversation with new people, a cute story, a different way to present our family.

However, one day, I read that verse with new eyes.

"You have enclosed me behind and before, And laid your hand upon me." Psalm 139:5 NASB

Hemmed in, encircled, surrounded.

They go before him and behind him.

I see the living breathing word of God exist in my family.

What an incredible picture. We don't always have that so clearly and beautifully displayed for us.

So I look at my children and I know that they are thoughtfully created, wonderfully made by a God who doesn't just know them...

He is with them.

He is with us.

He is with you.

God, I am thankful for the living breathing display of Your word. Thankful that You care about the smallest of details and thankful that You do not just plan and orchestrate. God, You walk with us. Your hand is laid on us and You go before and behind, Father you encircle and surround. God, I pray for every mother and father and child that looks around searching for Your presence, open their hearts and their eyes and reveal Yourself to them. God fill them with the peace and comfort that can come only from knowing and seeing You. I ask this in Jesus name, Amen.

Monday, September 26, 2016

Longing for Transformation

The following guest post by author, Kimberly Drew, is an excerpt from her new release with co-author, Jocelyn Green
Photo by Gualberto107. Published on 19 May 2013
Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect.
Romans 12:2 (esv)

Getting my daughter dressed every morning includes fitting her legs into orthopedic braces which force her limbs into an uncomfortable position. Those braces fight a daily battle against what the cerebral palsy tells her little body to do. The goal is to stretch and loosen the tightness in the legs, allowing her to walk properly. The constant stretching is supposed to help with the overall tightness by keeping her legs from going back to their natural muscle tone.

But Abbey’s sickness isn’t in her legs—it’s damage done in her brain for which there is no repair apart from God’s miraculous healing. When I put on her braces in the morning, I recognize the symbolism of forcing her body to do something that is only a temporary solution to her problem. It is exactly what is happening in my own life at times: I am trying to “force” myself to do the right things to honor God.

It’s not a bad thing to want to be more like Christ, but doing good out of obligation is only a temporary solution to a depraved mind. What I really need is spiritual transformation, possible only through the miraculous work of the Holy Spirit living in me. Apart from him, there is nothing I can do to treat my sickness that will have any permanent effect.

The tense for the verb “transformed” in Romans 12:2 implies that it is not a onetime thing, but a process of being continually transformed. Its Greek word, metamorphousthe, in English is “metamorphosis.” To be metamorphosed into something completely new, I have to want to be changed. I have to connect to the God who changes me, owns me, and loves me.

The process of peeling myself away from the patterns of this world is often painful and uncomfortable, just like Abbey’s legs being forced to do what feels unnatural to her body. Through the power of the Holy Spirit, I continually renew my mind in Christ. The result: pleasing God, which was once forced, becomes more natural because of the Spirit’s work of transformation in my heart and soul. I read and meditate on his Word, spend time in prayer, and fellowship with other believers. I begin to see life through a biblical, God-centered perspective rather than through my own self-tinted lens. This transformation in my life brings him glory. As others see the Lord working in me and changing me, I can give testimony to Christ in my life.

As we watch and help our children endure pain to improve physically, let it be a reminder that beyond physical healing, true spiritual healing can be claimed in Christ as we are transformed by the renewing of our minds.

Dear Lord, help me to be truly transformed by the renewing of my mind. It’s the only way that I can have lasting change and not conform to the patterns of this world. I thank you that I have your Holy Spirit working in me and that you promise to finish in me what you began by making me more like Christ. In Jesus’s name, amen.

Digging Deeper
       1.   Name one area of your life in which you’d like to experience some transformation.
       2.   In what ways have you been transformed since your special child came into your life?
       3.   In what area of your heart may God be trying to work right now?

Kimberly Drew is a graduate of Taylor University, with a degree in elementary education. She had been married to her college sweetheart, Ryan, since 2000 and live with their four children. They also have a son, who is waiting for them in heaven. She developed a passion for children with special needs and their parents after their firstborn daughter suffered a traumatic birth which resulted in multiple disabilities, including cerebral palsy, a seizure disorder, hearing loss, and microcephaly. From these experiences, and a heart to see and know Christ more, came the desire to help other parents grow in their Christian walk through their own experience raising a child with special needs. In 2016, they adopted their fourth child, a baby girl with special needs. Kimberly has been serving alongside Ryan in full-time youth ministry since they were married.

Friday, September 23, 2016

When your First Grader Gets Suspended

"Hear my son, your father's instruction and do not forsake your mother's teaching." 
~Proverbs 1:8, NASB
It started with good intentions, my son saw the weak being threatened so he intervened. This is what we teach him; to protect the cause of the weak. He intervened in the playground brawl where the little kid was being held down by the big kid. He saw. He cared. He took action. 

Entering into another's suffering. Taking up their cause. These are the things that are Christ-like. They are evidence of growth in grace, evidence that he listens to our teachings that come from the Bible.

However, as he was intervening, this bigger kid started hurting my son. So another kid came in to help my son. Apparently, my son didn't need help so he hit the kid trying to help. In turn, that kid punched my son in the eye.

When my son was taken to the principal's office with the other little boys he told the truth. He lived what he has been taught; always tell the truth. 

Because he hit a kid, his actions required a suspension. 

I asked my son why he hit this kid who was only trying to help him and his reply was, "I didn't need help!" 

He did so many things right, how could this one pop up in the middle of it? It is an entirely different heart issue that needs to be addressed. The issue of pride. 

I am thankful for this experience because if it didn't happen I wouldn't have had the opportunity to identify this self-sufficient pride that is lodged in his heart. This is just another opportunity to teach and instruct in the ways of Christ. Now next time, I hope he will be willing to receive help.

And the boy that he hit and who punched him back? Well, they could be seen playing together on the playground. Forgiveness; that's another thing we are teaching him. I am thankful that as parents we get to see some of these things take root aren't you?

Father, thank you for the privilege of instructing our children in your ways. Help us stay true to the task and sit back and watch you at work in their hearts. 

Thursday, September 22, 2016

Why it's Humanly Impossible to be the Parent of a Child with Special Needs

"See now that I myself am he!
There is no god besides me. 
I put to death and I bring to life, 
I have wounded and I will heal,
and no one can deliver out of my hand."
Deuteronomy 32:39, NIV

I can't do this.
I wish I could run away.
I am FAILING at this.
I give up.

I have thought these thoughts before, and perhaps I may again, and it's only through the grace of God that I can get up each morning and muster the energy to make the coffee, shower, smile and go bravely into a brand new day.

I do this for my daughter, my husband and my God.

I do this because I KNOW for a FACT that I AM A WINNER...and I'm ONLY a winner because Jesus Christ died for me and conquered the grave.

BUT WAIT!  Let's take a step back.
Why is my life so hard that I may have thought the thoughts that I listed above?
Because my daughter has special needs and there is a TREMENDOUS amount of stress placed on the parents of a child with special needs.  Not only is my daughter's disease RARE, which means we have to help educate and advocate throughout the medical community, but, in regards to her education, we have to be exceptional advocates for her as well!
But, Tammie, what kind of pressure is placed on you just because your daughter has special needs?  Isn't it possibly even EASIER because expectations for her future education may be lower?  
I just recently read a blog post (or two or three) about how to best prepare for your child's IEP (Individualized Education Plan).  Here are some of the things the authors suggested one SHOULD DO in order to be successful (all of these are in my paraphrase so are not word for word what the original authors wrote):

  • You have rights, so you "should call the shots" are entitled to this, that, and the other, you should demand that you be charge.
  • Ask Questions~understand the assessment data about your child and asks questions for clarification and perhaps even challenge the results given; ask for additional meetings or more time if necessary.
  • Come to the meeting Prepared~you should do your own research and be the most knowledgable person at the table regarding your child and special education in general.
  • Find an Expert~You should read blogs and articles and research that's all over the internet regarding special education, advocacy, self-determination, etc, etc, etc.
  • Bring someone with You who can act as an Advocate for your Child~(so, you should possibly pay someone to advocate in case you aren't doing a good enough job?)
  • Find Allies~You should figure out WHO on your IEP team agrees with your philosophy and goals for your child's education and rally those troops.
  • Bring it Back to Basics-you should set the highest expectations for your child's education so that your negotiations will get you maybe more than you expected.

THEN, the funniest thing was added into one of the lists:  "FORGIVE YOURSELF"
Forgive yourself and don't feel guilty about how you may not have done a "good enough" job??? 
Forgive yourself because you don't have enough time in each day to read every blog, every research article, every letter to the editor about special education and your child's needs???
Forgive yourself because you have a JOB, and a FAMILY, and a GOD who also deserve your attention???

Truly, when you look at these "suggestions," (and, I myself have learned things and gleaned good information from them every once in a while)...but, REALLY, when you look at all of these things WE are told to do for our CHILDREN...


Merriam-Webster includes as one of the definitions of religion:

I think we are setting ridiculous expectations for parents of children with special needs and we are creating a religion which draws these parents away from the one, true GOD.

Our children are not God.
Our schools are not God.
Our doctors are not God.
Our healthcare is not God.
Our politicians are not God.

Yet we suddenly need to spend every waking minute reading, learning, questioning, searching, and advocating or else we are letting our kids down by NOT building a successful IEP for them?
  • But God has commanded us to have no other gods besides Him!  (Exodus 20:3)
  • And God has said that HE is the one who helps us, and we can't look to others to prepare us. (Isaiah 45:5)
  • And Jesus has told us that He alone can save us...for eternity (John 14:6)
The minute that we lose sight of God's sovereignty over the lives of our children, we begin to believe that WE are in CONTROL and suddenly we are losing sleep (and possibly more) because all we can do is think about, read about, write about, talk about and plan for things for our child.
So, what do we do, Tammie?  How do we still do a good job parenting our child and advocating for her or him while also not losing sight of God?
We look to God and do what He would want us to do.
  • Pray Intentionally:  Only when we take the time to rest, be still, and talk to God are we THEN able to see HIS WILL for our child and determine what is important to HIM.  Pray for your child, the staff at the school, the district, your child's peers and friends, and the families in your community.  Can you imagine what IEPs would be like if they were covered in prayer by ALL FAMILIES for MONTHS leading up to them???
  • Remember the Kingdom:  We have already been told that God's Kingdom does not look like this earth.  So we need to remember that what THIS world tells us is good, or right...that's not ALWAYS the same for our eternal life.  
  • Read God's Word:  How can we say that God isn't speaking to us if we haven't opened up His book for us and read it?  We must be in the Word in order to keep our minds fixed on eternal things rather than the things of this earth which will pass away.
  • Give God the Glory:  Regardless of what comes to be, always remember that every good thing is from God.  We can do none of this apart from Him.
This doesn't mean we DON'T prepare, or we DON'T means that our ADVOCACY is an intentional act of WORSHIP and we can only do this through the strength we get from our faith. 
It is HUMANLY IMPOSSIBLE to succeed at this special needs parenting journey WITHOUT the supernatural power of the Creator.  He has a specific purpose for us, for our children and for the heartache, blood, sweat and tears that go into our lives.  
We can only succeed when we fall to our knees and look to the one who has written these stories long before we were even formed.

Pray:  Heavenly Father, I submit my will to yours.  I ask you to reveal to me YOUR will for my child.  I ask you to strengthen me because the beginning of the school year is DRAINING.  I have tried to do this on my own.  I have tried to be a SUPER PARENT who knows all and achieves all for my kid.  But, only through you can we gain victory.  I will try to keep YOU as the one and only god in my life.  I will not worship the IEP because it will never be perfect and neither will those who implement it be perfect. Father, give me peace.  Set my eyes only on You and the things are right and true and eternal.  Amen.

~Tammie Hefty