Show Me Your Mighty Hand

Show Me Your Mighty Hand: Peace From God's Word for Special Needs Moms
By Wendy Heyn (me!)

Buy your copy here

Reviews and posts about my book:

Jim B. wrote at Goodreads:

"Rarely are we confronted with devotional literature written by Christians whose burdens are heavy and will not go away. Nine mothers of children who are developmentally or intellectually disabled, some very severely, have written their personal stories as meditations on Mary the mother of Jesus. There are no easy answers in this book, no facile pretense that all is well, to cover up sorrow and pain. These are women who love their children and find joy and beauty in them, but they are also women who endure anxiety, rejection and judging, not to mention the physical burden of care.
I recommend this book for parents with the same struggle, but even more so for people who bear other burdens. You will find kindred hearts in the writers of these meditations, and perhaps a perspective on your own problems. And if you are one of those people who have seen a child melt down in public and cast a critical eye on the parent -- I think this book will break your heart with sorrow and compassion. And it points all readers to the promises of our heavenly Father and His abiding love."

https://www.goodreads.com/book/show/32452667-show-me-your-mighty-hand

Richard F. wrote at Amazon:

"This book is so inspiring! As a mom of a special needs young adult I found so much comfort in this book. Throughout the years I kept telling myself that other families have it worse than i do. That was one of my coping mechanisms. The insightful way that Wendy compares special needs moms to Jesus's mother provides encouragement to any special needs parents. After reading the book I realize that it's ok to 'not be perfect' and not to rely on myself but to trust in the Lord's plan."

 

https://www.amazon.com/Show-Your-Mighty-Hand-Special-Needs-ebook/dp/B01LQYQAPM

 

Me over at Church for Every Child:

https://church4everychild.org/tag/show-me-your-mighty-hand/ 

Liam's Voice

Check out Liam and his new speech device!@

http://fox6now.com/2015/04/08/technology-helps-boy-who-cannot-speak-find-his-voice-his-mom-says-its-opened-the-world-to-him/

Worshipping with Liam

Christian parenting is not an easy task.  Proverbs 22 tells us, “Train up a child in the way he should go; even when he is old he will not depart from it.” The past few days, articles keep coming across my fb feed about one aspect of Christian parenting- bringing toddlers and babies to church.   These articles talk about the struggle involved and how families have handled church with their small children.  Often the writers share suggestions and tips about what has and hasn’t worked for their family.

Our family faces a similar struggle.  My daughters haven’t been particularly challenging to train to be quiet sitters. This really hasn’t been because of anything that we have done or not done, they just have personalities that do well with following directions and being quiet when necessary.  While we continue to work with them on being active participants in worship, the struggle that dominates our family’s worship is really with our son.   Our Liam is 7 years old and is completely non-verbal and relies on his wheelchair and us to move him around.  You might imagine that a person who is non-verbal is very quiet, but that is absolutely not true in Liam’s case.  Liam is incredibly vocal.  He knows the things that he wants and does not want and he is eager to let those around him know.  If he likes something he might yell his noisy and long-lasting yells over and over again while twisting his hands around in the air or flapping his arms.  If he is upset he will cry.  Liam often just enjoys making noise.  At these times, he doesn’t do it as communication.  He doesn’t even seem to care if people pay attention or not.  He just likes to make noise.  (Maybe he is like many of us verbal folks who love the sound of our own voices?)  Liam especially seems to like to make noise when his surroundings are quiet. 

In addition to Liam’s vocal habits, he is very sensitive to noises around him.  He doesn’t do well in unfamiliar settings.  There are many sensory things that bother Liam:  lights that are too bright or buzz, loud noises that overwhelm him, too many people, ceilings that are too high or too low, room temperatures that are too warm or too cold, perfumes that are strong, and many others.  Any of these things can cause him to be anxious or upset.  He might show that he is upset by being quiet and still.  He also might show it by crying easily and becoming very upset. 

Worshipping with Liam can be a challenge.  In addition to his noise level and his sensitivities, the logistics of bringing a wheelchair into a church can be challenging as well. The biggest part of this challenge is knowing that Liam won’t outgrow it and become independent.  This isn’t a temporary challenge like a baby or a toddler.  “This too shall pass…” does not apply.  Trying to find a way for our family to worship with Liam will be a long-term and on-going part of our lives.  Almost every special needs family faces a similar challenge. I am sharing this in hopes that it will encourage others or give those of you who face similar challenges some ideas.   

There was a very short time when our family was not worshipping together.  It had become too difficult.  We were members at a church with a beautiful, but old church building.  The aisles were too narrow for a wheelchair to remain during the service and the 4 cut out spots for wheelchairs were near large structural posts that made it impossible for Liam to see anything.  Liam had become heavy enough that carrying him into church was becoming too much for Juerg and was impossible for me.  The church had dim lighting and a very low balcony which bothered Liam and further limited where our family could sit.  A very old heating system meant that early service would be a bit chilly (until the boiler got cranking) and late service would be very warm (because it was cranking well!).  We began taking a similar approach to worship that we do to many family outings.  We were tag teaming.  Juerg stayed home with Liam while I took the girls on Sunday mornings  This allowed me to teach Sunday School as well.  Juerg worshipped alone on Saturday nights.  This sure wasn’t ideal, but at the time, we didn’t feel we had another option. 

When we moved to a new home and were deciding what church to attend and what school to send Sophia to, the new and modern church building at St. John’s appealed to us because we knew that it might mean that we could worship as a family.  And that is JUST what we have been doing for more than a year now.  It is such a blessing! 

So here are things that have made a difference for Liam (and all of us!)

The modern building

-      We can sit anywhere because the aisles are huge and his chair can fit at the end of any aisle.  This means-

o   Liam can’t kick the pew in front of him b/c there isn’t one.  YAY!

o   Liam can’t pull the hair of the person in front of him.  Again, there isn’t one.

o   We can be late (time is a big challenge for our family J)

-      Liam can see the pastors and the downstairs choir/worship leaders.  He can also see the people in the balcony and many of the people around him.  He actually seems to participate in worship (in his own way).  Often if he seems agitated or noisy Juerg will whisper and explain what is happening and he calms.

-      The temperature and lighting are even.

-      Liam has become so comfortable in our church that he has attended worship with a full orchestra once and with a band several times (rather than organ, piano, and traditional style) and has done okay with them (not well…but okay)

-      There is a large narthex and a cry room that have very large windows and a speaker so that if we DO need to leave the service (for the next 40 years :))we can still worship.  

-Because the building is newer, Liam's wheelchair has easy access to every part of the building.  There are several good options of places to change him if necessary (although no actual special changing area).

The staff/congregation/attitude

-      The staff are very encouraging with us and treat Liam with dignity.  Our pastors are kind and friendly with him.  The other worshippers have been very patient with noise and book throwing (Liam’s usual J)

-      Liam has been welcomed into Sunday School.  I go with him.  It isn’t something that I ever really considered for Liam, but it has worked incredibly well.  Honestly!  He loves it and so do we!

-      Everyone at church sees Liam often and this helps. They have an idea of what to expect from him and they are learning to interact with him.

What we do

-      We always try to sit in the same area of church.  The view is similar then.  The sounds bounce similarly.  Often even the people around us are similar.  Familiarity helps Liam to know what is expected. 

-      We take Liam to church every chance that we have.  We would do this anyway to worship ourselves and teach our children the habit of regular worship, but it is especially important so that Liam becomes familiar and comfortable with worship.

-      We bring the same bag every Sunday with Liam’s books and we allow a certain amount of noise from book bending, kicking feet, and some “talking” on Liam’s part. Our expectations for Liam’s behavior are very different than our expectations of our typical children. Other worshippers have often told us that they are not bothered and, in fact, enjoy sitting near Liam. 

-      We do leave when Liam just becomes too disruptive, but this is not very often.  It is usually only necessary for to leave for a short time and then he calms and we can return. 

-      We know that Liam does MUCH better if we can make it to 8 am worship.  He is so much calmer.  If we attend later in the morning, he will be more active and noisy.  We try to avoid evening church whenever possible or get Liam’s carer to come and stay home with him.  Evening service almost never goes well for Liam- even the Children’s Christmas Service is a gamble for our guy.  He’s a morning person J!

-      We pray.  A LOT.  We know that Liam understands so much more than he can tell/show us.  We pray that through the Word and worship, Liam’s faith is growing.  We pray that we are being strengthened even though many times we are so distracted with Liam that we miss a lot of what is being said.

-      I very rarely try to do this on my own.  It is hard work with 2 of us, but when I have done it alone it is so much harder.  If your spouse cannot worship with you, maybe your church can suggest a church buddy/helper for your family? 

Psalm 29:2 Ascribe to the LORD the glory due his name; worship the LORD in the splendor of holiness.

Psalm 95:6 Oh come, let us worship and bow down; let us kneel before the LORD, our Maker!

Vacation?

Vacation is always a bit of a reality check for me.  I guess it probably is for every parent of young children.  You go away from home, hoping to enjoy each other and get away from daily stresses.  When you get there, though, you have to take care of your family, but do it without all of the familiarity of home (and in our case without the adaptive equipment and the hired helpers).  It is truly exhausting. 

The difference for our situation in comparison with that of other parents of young children is that with other families, the young children will grow into older children.  Their needs will change and while the parenting and responsibility will remain (for a time) the minute to minute needs will cease.  Eventually the children will be independent and the parents will have to redefine their lives without children at home. 

Our 9 year old still needs us.  She needs guidance and direction.  She needs us to set an example every day of looking to the Lord for strength and endurance.  She needs to know that we are here to listen and she needs us to be ultimately responsible for her time and activities.  Truly though, our role in her life is already shrinking.  Our 9 year old chooses many of her daily activities.  She feeds herself.  She drinks when she is thirsty.  She reads to herself.  She walks and runs where she wants to go.   She has relationships with other people (completely separate of us, her parents).  She talks and interacts with many other people during her day.  She has friends.  At times she chooses who she prefers to spend time with and where.  She shares her thoughts and opinions very eloquently in written English and verbal English and she shares those same opinions functionally in German.    During the school year she is responsible for her own schoolwork.

Our 2 year old is gaining some of her sister’s same independence.  She shares her opinions very vocally in English. She can run and walk where she likes.  She grows and changes and demands her independence in new ways daily.  (I pray every day for God’s guiding wisdom in how to teach obedience to this wee person with such great will).

When I walk into a room and Liam sees me, his eyes and his entire face light up.  I am his favorite person. He sees me and he is filled with happiness.  For 40 weeks I carried him.  Then for 32 months I nursed him (10-12 times in every 24 hour period for the whole time).  I have held and sung and loved him through illness after illness- sometimes all night, for days and days.  I have put him to bed by holding him or rubbing his back nearly every night for 7 years.  If he wakes in the night, he cannot self-soothe.   I am the person who soothes him.  I have fed him 4-6 drinks a day, every day for the 4 years since weaning.  I have fed him the majority of his meals for the past 7 years.  Every bite.  I have given him baths.   I have changed about 5 diapers a day for 7 years.    If Liam wants to go somewhere that he cannot crawl, I have to carry him.  If he wants to get something he cannot reach, I get it for him.  All of this he does not ask me to do with words.  I have to know what he wants because he tells me with his eyes.  (And thankfully Juerg has done quite a lot of it too.  I sure couldn't have done it without him!)   Liam depends on me and needs me with an intensity that my girls do not.  I don’t say this because I want applause or for someone to say I am a hero.  Every loving mother would do the same for her child if he needed it.  I say this to explain why vacation is so sobering. 

Even on vacation, Liam must have every single daily need met by Juerg or me (or someone else).  We have to be thinking ahead about his needs and how to satisfy them every minute that we are not actually administering drinks, food, etc.  Taking Liam with us requires special packing.  Liam needs his special toys and books (which are bulky!).  He cannot just color or play with the toys that are available.  We have to pack with possible illnesses in mind.  He needs diapers that cannot be purchased just anywhere.

As we are vacationing with all of our relatives (each a “typical” family with neurotypical children) I begin to think.  I watch Juerg's parents and all of the "freedom" that they live with as two parents whose kids have all grown up and gotten married.  They come and go as they please.  They work.  They vacation.  They garden.  They go to social things.   They only need to worry about each other and themselves.  As I give Liam drink after drink…  As I worry about heat, cold, bugs, etc…  As I try to find foods that will be easily swallowed…  As I try to be sure he is happy, exercising, occupied, included… As we are out and about and I try to find appropriate place to diaper such a big boy who cannot stand… I think of how much easier my 2 year old is and how incredibly independent my 9 year old is…  And how if Liam were a typical almost 7…  We might actually RELAX on vacation.  I wonder if we will ever relax again?  And then I think that even when all the children are grown, we will be feeding, diapering, and guessing Liam’s needs.  We will be managing his equipment.  Liam will be bigger, stronger, very likely more medically involved.  I feel overwhelmed.   Once again, I feel that God has given me too much.  And again, I consider Job and how much I would prefer to have a good run.  Away.  I love Liam.  His smile and his tender, sweet ways are a light in my days.  I don't want to live without him.  It is just that when I look ahead at the years, the future feels very scary.   (Oh don’t I sound like a fun vacationer?)

As I think,  I stop feeling sorry for myself about the scary future full of work and lacking relaxation and instead wonder about Liam’s future- someday when we are no longer here,  can we honestly ask anyone to commit to care for him?  It is a completely different question than who would care for our girls.  Our girls could just fit into someone else’s life.  They feed themselves.  They drink on their own.  They are continent.  They don’t require the kind of medical and educational advocacy that Liam does.  They will grow up and become self-sufficient.   Caring for Liam will be a life-long commitment.  It requires that someone is thinking about him and planning for him every minute of every day.  How much he will drink and when?  What he will eat?  How?  Where? When and where will he be diapered?  What does he want to do? What doesn’t he want to do? What should he do?  On and on.

These are the thoughts that I obsessed and worried about for several days of this trip and I prayed that God would help me to live in the moment.  Being the amazing God that he is, his answer was far different than helping me to live in the moment.  His answer came in the way that I saw the Heyn family rally to care for Juerg’s Oma. 

Oma is this incredible lady who lived through 2 world wars in her very own backyard.  She raised 6 kids.  She rode her bicycle until she was in her 80s.  Her outlook on life is inspiring and amazing.   

Oma is in her 90s now, she needs lots of help.  Her memory is failing and so is her body.  Juerg’s dad and his siblings/spouses all take care of her and do so with love.  Oma is at every family event.  She is made comfortable.  She is well taken care of.  And it is obvious that she is so very loved that it isn’t an imposition to anyone.  They want to care for her.  Watching the family easily accommodate her rest time and her physical needs was such a touching example to me of the Lord’s love.  They never stopped at doing just what she needed though.  When the day was hot, she had a cool bucket of water to put her feet in and a beer to drink (her favorite).  When she asked the same question 15 minutes after she had asked it, the reply was always loving and complete.  Oma is confused about things and yet she is never left on the sidelines.  At family dinner for 25, her seat was right in the middle.  When the kids are swimming, she gets a poolside seat so she can enjoy her great grandkids.  The family just naturally goes above and beyond in caring for her because they love her. 

Watching this loving care for Oma made me realize that I truly need not worry about Liam ‘s future.  Even if I am not here to manage Liam’s healthcare, love him through every illness, organize his days and be his mommy, I have a Lord who loves his sweet child, Liam more than I do.  That Lord loves Liam more than all the Heyns love Oma.  That Lord was gracious enough to give me a picture of the earthly love that flows from a heart filled with Jesus.  I know that Liam is loved by so many would be well loved even in my absence.  Of course I will make plans and try to be responsible, but my heart will rest in the Lord.  What a blessing we have in our great God!

 

  Psalm 91NIV

¹ Whoever dwells in the shelter of the Most High
    will rest in the shadow of the Almighty.^[a]
2 I will say of the Lord, “He is my refuge and my fortress,
    my God, in whom I trust.”

³ Surely he will save you
    from the fowler’s snare
    and from the deadly pestilence.
⁴ He will cover you with his feathers,
    and under his wings you will find refuge;
    his faithfulness will be your shield and rampart.
⁵ You will not fear the terror of night,
    nor the arrow that flies by day,
⁶ nor the pestilence that stalks in the darkness,
    nor the plague that destroys at midday.
⁷ A thousand may fall at your side,
    ten thousand at your right hand,
    but it will not come near you.
⁸ You will only observe with your eyes
    and see the punishment of the wicked.

⁹ If you say, “The Lord is my refuge,”
    and you make the Most High your dwelling,
¹⁰ no harm will overtake you,
    no disaster will come near your tent.
¹¹ For he will command his angels concerning you
    to guard you in all your ways;
¹² they will lift you up in their hands,
    so that you will not strike your foot against a stone.
¹³ You will tread on the lion and the cobra;
    you will trample the great lion and the serpent.

¹⁴ “Because he loves me,” says the Lord, “I will rescue him;
    I will protect him, for he acknowledges my name.
¹⁵ He will call on me, and I will answer him;
    I will be with him in trouble,
    I will deliver him and honor him.
¹⁶ With long life I will satisfy him
    and show him my salvation.”