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.”



Conflicting Emotions

There is a poem on the Holy Hen House blog today that I would love for you to head on over and read:

http://www.holyhenhouse.com/the-motherhood-mission-a-poem/

 

I love this writer. She always seems to speak my heart. One verse of this poem especially touched me as I believe that it is the biggest emotional conflict of my life.

 “And as much as I’m tired and dream of the day
  That they’ll be older and wiser and won’t need me this way,
  The truth is that thought brings a tear to my eye.
  And just writing this verse almost makes my heart cry.”

My Liam will always need me this way. (Unless he goes to be with Jesus before I do.) He will always need me to keep him clean, to intuit the needs and wants that he has no words to communicate, to feed him, to soothe him to sleep, even to move his body from one place to another. He will be older, bigger, his medical needs very likely more complex, but his time on earth will never be without the very great need for me that really only small infants usually have for their mothers.

It surprises me then, that on days like today – the 9th birthday of my Sophia, my heart twinges a tiny sad twinge at the thought that she is so very old. Her independence and bright thoughts make me swell with pride and thankfulness to the God who has lent me this darling girl, but it also brings a twinge of sadness at her lack of need for me.

The same is true for my Miriam. She daily learns new things. When she puts on her own coat and shoes and serves herself a snack, I marvel at her teeny tiny little self being so very able. She puts things away. She fends for herself playing with all of the big neighborhood kids. She expresses likes and dislikes and can politely ask for what she needs. I feel that twinge of sadness that she is no longer a baby…Yet, I am so very thankful that these daughters of mine are learning and growing and becoming independent. My heart longs so so badly for my son to have this same typical development, but on this side of heaven he never will.

How can the same mommy who has spent countless hours shedding tears over the fact that her son will never become independent, who begs God to somehow change this earthly plight for her son, feel twinges of sadness at seeing that very independence in her daughters?

 

My heart hurts and my eyes smart just thinking about it…

Shiny Shoes

I can’t stop thinking about a little, shiny pair of dress shoes and a fancy, springy shirt and tie.  It was the perfect little boy outfit for an Easter celebration.  I wondered if maybe his mom had bought them planning to have him wear them next month for Easter.  I wondered if his brother had matching ones.  Maybe his sisters’ dresses coordinated too?  However, the clothes I can’t stop thinking about weren’t worn on Easter. The shoes that I keep thinking of were on my son’s little, 6 year old classmate as he lay in his casket surrounded by mourning family and friends. 

Ben* was one of my son, Liam’s, very first friends.  They met at school in Room 4, the early childhood special needs room.  They were there together for 2 years and “graduated” from Room 4 together last spring. 

As I stood looking at little Ben in his casket, I thought about so many things.  Each thought that I had turned to my Liam and our future with him.

First, I prayed that God would comfort Ben’s parents.  Then I wondered how a parent who buries his son can ever be comforted?  In the next moment I remembered that my God knows this very pain and so surely He is a God who can soothe a parent’s ache.  Although I expect that a parent’s heart will ache for the rest of his earthly life, we have a God who knows such heartache and who promises us a future free of all aches in heaven.  That is the God we can lean on while we walk through the earthly valleys of shadows. 

As little Ben’s older sister wept so hard that she was shaking, I wondered how can a parent walk her child through such a grief?  How does she process the emergent moments when the ambulance was called and the paramedics arrived?  What does her young mind make of those scary moments?  When the big sister comes home after the funeral to a house without her brother and has to live new day after new day without all the care that he required?  She gets to live without risk of him taking her toys or tearing her books, but now it is a sad thing- how does the mother help her to adjust?  How does a mother help her navigate this loss?  How does a mother help her daughter to move on into a spring without her beloved brother, a summer without him, and a new school year without him?  And as I watched his older sister and heard her weeping, I thought of my dear Sophia and what such a loss would mean to her. 

I watched Ben’s baby sister, age 3, just sitting there.  She wasn’t overwhelmingly sad or even confused looking as she just sat and took things in.  She watched as her grown-ups cried and her big sister wept.  She watched her brother as he lay and didn’t move.  I wondered what she thought.  What will she remember?  What won’t she remember?  How much does a mother try to help her tiny daughter to remember?  How much does she just let her forget?  What does the tiny daughter think when she is at home and her playmate is gone?  The brother she took care of, cooked pretend meals for, supplied with lots of toys so he wouldn’t have to get them himself, and gave kisses to isn’t there anymore.  She wonders why? As I thought of this I was thinking of my dear 2 year old Miriam.  I wondered how such a loss would be for her.

Then I wondered how this grief changes as our children age.  How do we help them process this at different ages.  I wondered if it happens when they are grown up – then will it be them helping us to grieve?

I watched Ben’s parents.  I saw his mom crying and his dad with trails of tears on his face and his arms around his family.  I wondered how after all these years of the family’s life revolving around the care of this little boy, they can go on.  What do they do?  How do they do it?  So many minutes of every day are spent caring for a child with special needs, advocating, visiting doctors, therapists, etc.  Now what?  Now WHAT??  How does one move on?  Do you get rid of the medical equipment in your house?  The adaptive van?  The wheelchair?  Does the family just become a regular family and not a special needs family?  And how do hurting parents lead their family through such a loss?  This must bring them to their knees!  Does knowing that your child is with the Lord and pain free calm the burning, aching, gutting pain?   How do you live without his giggles and smiles?  How do you function without his sweet noises, the feel of his soft skin, the twinkle in his sneaky eyes?  Being there and imagining that this will be our future has been almost physically painful to me!  Can we ever be prepared for such a thing?  Again, the only confidence that I can have is that my God knows such pain and he promises to carry me!

And then I looked around and a realization hit me! BAM!  They don’t just lose little Ben.  They lose all of his team too.  The nurses, the teachers and aides, the therapists, the carers of every sort -these people have become a part of their family.  They are always present with a special needs family.  They are an important integral part of special needs life.  There were so very many of them at little Ben’s funeral.  In fact, I’d say about 1/3 of the people there might’ve been his staff.  Yet this family doesn’t need them anymore.  What then?  I thought of our house and the people we have loved who care for our Liam and teach us so much.  What a different place it would be without the traffic of all these special friends.  I thought of the amazing school staff that Liam has had and how hugely they have affected our lives and I wondered if any of them have an idea of how HUGELY they have affected our family’s life.  My heart ached for little Ben’s staff who loved him and cheered him on and taught him so many things.  My heart ached for myself as I thought of all the holes that such a little boy can leave on this earth. 

All week I keep thinking of the little shiny shoes.  I am haunted by them.  They are on my trail this week.  I am crying inside whenever I have time to think because shiny shoes pop into my head.   I have decided, though, that I was reminded of something bigger because of those shoes.  I was reminded that our kids with special needs are God’s instrument – kind of like the shiny shoes.  I feel like I won’t ever see a pair of shiny boy’s dress shoes again without thinking of little Ben.  BUT every time I see those dress shoes I will think of all those people who came to little Ben’s memorial service.  I will think of all the lives he touched.  He wasn’t eloquent.  He wasn’t an awesome student.  He walked with an odd gait.  His language was difficult to understand.  Despite all those difficulties and differences- actually BECAUSE of them – little Ben touched so many lives.  And in our Liam’s case, I always pray that the gospel is proclaimed to every life that touches his.  I will continue to pray that for every day that we have with our darling boy.  I thank my God that he is a God who uses the broken to proclaim his majesty.  I thank my God that he calms the hurting heart.  And I thank my God that he is a God of love who can soothe every tear.

*Ben is not the student's real name

What NOT to Say

 

What NOT to Say

“10 Things Not to Say to a Woman Expecting Twins”, “7 Comments Not to Say to an Alzheimer  Caregiver”, “10 Things Not to Say to Someone in a Wheelchair”….  The list goes on and on and on. If you are ever on fb or if you google “not to say” you can read hundreds of these guides on what not to say to people in different circumstances.  A friend and I were recently saying that if we compiled all of these the sum would be that we ought not say ANYTHING to ANYONE, ever! 

I read these lists.  I’ve shared them.  Sometimes I roll my eyes and marvel that anyone would say such obviously inappropriate things.  Sometimes I cringe because I have been the speaker of the very words I am reading.  Sometimes I identify with the list because the words written are words that have pained me. 


I’ve spent a lot of time thinking about these lists.  I have wondered if we are too sensitive to words. I have wondered if we are sensitive enough about the words that come out of our own mouths. Why are the words of another person so powerful in our lives?  Why do we fixate and hurt over and thrill at their words yet often the words of our Most High God, given to us in Scripture, are fleeting in our minds?   I think about this especially because I am a talker.  I talk.  And talk.  And talk.  I also love to hear the thoughts of others and I pray all the time that God will help me to keep my own mouth quiet long enough to hear their thoughts.  I often find myself - hours after a conversation - remembering what someone else said and maveling at her wisdom and thoughfulness.  After reading and pondering so many of these lists I felt compelled to share my own list of three. 
                                   

                                    Three Thoughts on Lists of "What Not to Say"


 1) These lists give us good insight into how to be as loving and sensitive as possible when we are speaking to others.
 

2) We need to be actively trying to hear people in the most loving and sensitive way possible.  

3)The only words that really matter are those of our God.
 

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These lists give us good insight into how to be as loving and sensitive as possible when we are speaking to others. 

When we read these lists we become aware of how others are thinking and feeling.  We become aware of the challenges they face and the words that they feel sensitive about.  We can use this to change the way that we talk and to try to really empathize with others.  We will never know and understand all the challenges and sensitivities of those we are speaking with.  We can bet that every single person we meet in this sin-hurting world has been touched by difficulty and sorrow.  We also know that each person is the dearly beloved of our Savior.  Knowing this and keeping this in our minds will help us to treat each person with sensitivity and kindness.  Sometimes we will make mistakes.  Mistakes made with humility and a gentle, loving attitude are more easily forgiven than mistakes made without.  If you are aware that you have been insensitive, then apologize.  A sincere apology and a loving attitude cover so many things. 

We need to actively try to hear people in the most loving and sensitive way possible.  This means that we try to take their words in the kindest way possible.  This is NOT EASY.  

Whenever I think about this I think of my Liam’s diagnosis time.  When Liam was diagnosed all of his paperwork and his doctors talked about symptoms of his syndrome and one of these was described as “severe to profound mental retardation”.  Our papers said this.   The doctors said this.  So I did too.  Then I talked with other special needs families and our therapy staff.  They did NOT say this.  They all said “cognitive disability”.  Over the years, our medical staff has changed their terminology and so have I.  Now we all say “cognitive disability”.  I actually get a twisted stomach when I read or hear the words “mental retardation”.   When I hear the the word “retard” used by itself…  OH MAN!!!  These are times that I pray that God guides my words and controls my hurt and anger! 

Interestingly, many intelligent, kind, and educated people are unaware of this word sensitivity that I (and many in the world of special needs) have.   I have been in professional situations with adults who have referred to themselves as “a computer retard” or a “gardening retard” and I find that I instantly lose some respect for them.  Yet I also question myself.  Why is a word so important that an excellent and respectable professional would now lose some of my respect because of a wrong choice of words?  I believe that this is a problem with my thinking. 

I do think that we should strive to use correct words when referring to things.  As professionals we ought to be up to date as well on how these words uses change.  However, as listeners we bear the responsibility of CHOOSING what we allow to offend us. 

If I am really seeking to understand the circumstances of those I am interacting with, doesn’t that include understanding those of the person talking – perhaps especially when s/he says words that I don’t like?  I can consider how the speaker meant it and what her/his attitude and intent was.  If I am looking to be sensitive and offended, I will certainly find things to be bothered about.  We always choose our reactions and I believe that we train our feelings.  At the beginning I had no bad reaction to “mental retardation” (other than that it felt devastating) but now, after years of believing that it is negative and inappropriate I feel just awful when I have to look at this terminology or hear it.  That has been a shift in my thinking.  I have trained myself to find this offensive and I will tell you that I spend plenty of time feeling sad and hurt over this silly word - and plenty of time trying to talk myself out of being sad and upset over it too!

The only words that really matter are those of our God.

The Bible clearly tells us how we should approach our interactions with others.

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James 1: 19  My dear brothers and sisters, take note of this: Everyone should be quick to listen, slow to speak and slow to become angry...

It tells us what our priorities for our whole life - including what we talk about, listen to and think - ought to be. 

Matthew 6: 33  But seek first his kingdom and his righteousness, and all these things will be given to you as well.

Proverbs 22: 17-18  Pay attention and turn your ear to the sayings of the wise;  apply your heart to what I teach...

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Although I wrote should, we don't approach our lives and interactions like this out of a law motivation.  That would mean that we do this just because we are supposed to.  End of story. 

Thankfully for us something incredible happens when we have faith in our Savior.  When we learn of Jesus' suffering death and hell for us and the Holy Spirit takes residence in our hearts, we are able to love others with love that God gives us.  He lives in us and his love overflows from us.  We are able to love even those who we find offensive and unlovable because we know that EVEN while we were offensive and unlovable God loved us enough to sacrifice his own Son.  The perfect God of the universe who HATES sin, loved us so very much.  With that knowledge and faith in Jesus' death and resurrection and because of the Holy Spirit working in our hearts, we can overlook and love those who offend.  We can focus on the words that matter - those of our God.  We can focus on God's Words and God's actions that are recorded in our Bibles.  We can spend our time thinking and rethinking who our God is and what he has done.  Through God's Word, we are changed and he makes us able to be less affected by the words of fellow men.  Today we pray that each of us is focused more on God's Words than on the words of our fellow men.