Special Needs has me surrounded

From Bob Goff’s book, Love Does.

“Oh, my. You have your hands full.” I’ve heard it. It’s been said to me too many times to count. Go on, hands up. I know it has been said to you, too. How many of you have had heard this, not just once, but so many well-meaning times? There is no doubt in my mind, people, special needs has me surrounded. But, it’s not what you’re thinking.

My open mouth/insert foot thing to say to these people is not always sweet and full of God’s goodness and bless your heart love. Shocker, I know. Sometimes, I am so dumbfounded (by the grace of God) I have no words at all. I just stare. As a parent of a child with special needs I have heard this since the time of his birth. Later, when we decided to become a foster family you would have thought I grew two heads when we left the house with a typical teenager, special needs teenager and a baby. Now, as we have this new life with an all new medical diagnosis, people cannot help but shake their heads in, you know that head-shaking look … “She needs all the prayer she can get.”

Yeah, there are days that get me down. But we have a choice in this special needs life to whine or worship during those days. And, I can’t find many bible verses leading me to whining.

“In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.” (1 Peter 1:6 NIV)

I’m pretty sure Moses had his hands full. One could say he not only had full hands, but a full life. Esther took bravery to the next level. I’m also thinking Mary and Joseph had their hands full. I mean, my kid is not Jesus.

I don’t think my kindof average midwestern life is anywhere near biblical. But, what I am starting to think is God doesn’t use empty hands. Heck, aren’t idle hands for the devil’s use, anyway? God doesn’t always answer in the immediate. Sometimes we wait. And wait. With full hands. But his word leads us to him every time:

“I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear the Lord and put their trust in Him.” (Psalm 40:1-3 NIV)

We wait. Patiently. He hears. He lifts. Gives us a song. Many will see. Many will trust in Him.

God has given me a song recently. I am surrounded. I am surrounded every day by the things of this world. There are things that will weigh me down and hold me in the slimy pit of whining and tears and woe is me. But today, I am going to remember I am also surrounded by something bigger. Someone. I am surrounded by God. Thank you, Michael W. Smith, for giving me a fight song to take on the battles of the day.

What is your new song when special needs has you surrounded? Do you have one? Or do you have go-to Bible verse that lifts your head every time? Let’s hear it!

“and provide for those who grieve in Zion — to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of the spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of His splendor.” (Isaiah 61:3 NIV)
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What I’m Reading …

I’ve gotten into a few books again. Sometimes life gets in the way of hobbies that require sitting still and holding one’s attention for long periods of time. Children can be that way. These past weeks we’ve had a little normality in our house again. Here’s what I’m reading …

Wonder by R.J. Palacio: Everyone and their brother and their brother’s kids loved this book. And so did I. For a book aimed at young adults it is longer than I expected. While it is broken up into easy chapters, it is a lengthy read. Palacio admits in her bio the book is based on a passing encounter with a young person who has a physical disability. I was loving every part of the book up until this mere acquaintance and not a real-life knowledge of someone who has developmental disabilities became obvious in her choice of words. Her use of the R-word tainted the remainder of the book for me. However, the book was a good representation of how special needs parents fight to have their children belong and there will always be others who just do not understand this. But in the end our hope is a community of people stand up and do the right thing for the good of everyone.

A Man Called Ove by Fredrik Backman: This book has been sitting on my shelf for a long time. I bought it back when everyone was raving about it’s worth. I could not get into a book about a grumpy old man. I would start it, read a page, put it back. Start again, read one more page, put it back again. Finally, I pushed through those beginning pages and it had me hooked. It’s slow start became a real life story that pulled me into a life that I could honestly understand. And by the end it had me in tears. This man called Ove was the thing, the grumpy old man, who held his community together. Just like it’s cover says, first impressions are unreliable sometimes.

Mental Health and the Church by Stephen Grcevich, MD: Dr. G is so stinkin’ smart this book is taking me more time to work my way through it. I want to give it all of my attention. He has packed many years of his experience and knowledge into a handbook for us and our churches. I’ll let you know when I finish and give you my thoughts. So far, it has not disappointed.

Last year so many of my books revolved around illness and the reliance on God during these difficult times. This year, it seems by books are leaning towards community. Funny, since we are so isolated these days. Must be something I long for underneath it all? My introvert self would be in its happy place spending days alone with books on books. But, I think God is calling us to show others in our community His glory in bigger ways than my nose in a book.

Up next on my reading list, besides the rest of Dr. G’s Mental Health book, is: The Way of Abundance by Ann Voskamp. I’ve already started it and LOVE it. And I saw an interview with Brad Meltzer that prompted me to buy his book, The Escape Artist. It sounded like interesting history within a suspense novel. Love those!

Are you reading anything good?

Easter is for You, too

I don’t know where you are with God right now. But, I want you to know Easter is for you, too. Jesus died for us while we were still sinners. He died for us while we were still hurting for our child’s unknown future. He hung on a cross for us knowing we would need a Savior to cry out to in the middle of long nights. He rose again three days later to give us hope in more than this crazy special needs life we live. If you hear nothing else from me, I hope you hear the Easter message is for you. Jesus came for you.

” Darkness fell, His friends scattered, hope seemed lost – But Heaven just started counting to three.” ~ Bob Goff

Giving God That Control

Special needs, illness, I don’t completely know why God allows them. He wouldn’t be much of a God if I knew all of his ways, would he? (Isaiah 55:8 For my ways are not your ways.) But what I do know is he is using this time for good. And I’m learning to be okay with this.

http://www.patheos.com/blogs/notalonespecialneedsparenting/2018/03/putting-kids-gods-hands/

The Weight of Love

photo property: Stephanie McKeever

This Weight. It’s heavy. The weight of special needs was something we’ve gotten used to along the way. It was gradual, never too life threatening. But this. It’s daunting. We long to be at home, away from the hospital, but there is no doubt being home, alone, is its own kind of hard. When I was young I remember thinking how difficult it is to keep a baby alive. Oh, young, naive Stephanie. Silly girl. This actually keeping someone alive is a new level of heavy. What if I mess up the dose? What if I sleep through the alarm beep because I am so tired of being woken up four or more times night after night for months now? What if I don’t clean the tubes properly? What if I snag the tubes and pull everything out?! What if, what if, what if? This weight of love, loving someone with great need, loving so much my heart breaks, it’s heavy.

We learn from a young age, Christian or not, do unto others as you would have them do unto you. Love as you want to be loved. That Golden Rule thing, it’s easy to say, harder to do. (Matthew 7:12)

I learned the rule when I was a child. Share your toys, don’t hit others, these were the law-abiding highlights. The teen years came and gossip and cliques and all that teen angst (the good ole days) found its way in to my heart. Easy when we look back, right?

But now? No one told me what I was signing up for when it came to this golden rule thing. Getting up all night, cleaning nasties, sticking my child with needles over and over? Whattt? This love thing is way harder than I ever knew. But we do it, right? We do it without thinking. We would do it over and over until our heart breaks a million ways. Love.

Love means drawing close during midnight meltdowns night after night. Love means I choose to change the various painful medical devices while my child winces, even when he pushes away. Love means watching toxic, neon medicines travel through tubes into my child that are meant to cure.

Love.

It’s patient and kind. It’s not easily angered. Love hopes. Love always perseveres. (1 Corinthians 13:4-7)

After I learned how to access a port and took it on regularly a nurse friend said, “Congratulations. You can now do more than what most nurses can do.” Even nurses go home after their shift. Even after overtime, someone eventually makes them rest. At home there is no overtime. Love is tiring.

One of my go-to Bible verses is Matthew 11:28. “Come to me, all who are weary and heavy-laden, and I will give you rest.”

He could have only said, “Come to me and I will give you rest.” Or, “come who are weary and I will give you rest.” But, it’s as if Jesus knew I would not be just needing rest, not just weary and needing rest, I would be wearyandheavy and laden andneeding rest. All of them. So overwhelmed by this love. So weighed down by love.

This love isn’t a Pinterest kind of love. It isn’t the kind of love which gets hearts and likes on social media. But, this love runs deep.  It shows up in the middle of the night. It draws close in the pain. And holds tight in the rooms filled with fear. The what ifs, the needs, the sleepless nights, they can drive us to where Jesus is waiting with open arms for rest when the weight of this love gets too heavy.

Favorite Song Today: O’Lord by Lauren Daigle