Showing posts with label getting support. Show all posts
Showing posts with label getting support. Show all posts

Tuesday, September 25, 2018

A Fable about a Table

**Friends, this post is longer than my average post.  Please give yourself a few extra minutes to read.  To help you, I've put in more than the average number of photos.  Thanks for engaging with my life and my thoughts!  


My husband tells me that his parents bought this table as a part of a big home redecorating project in the 70's.  That would explain how ugly the table was.  The legs to this table always made me think of furniture that might be in King Arthur's court; heavy, ornate and . . . medieval.  But it was also sturdy and free so we've had it in our dining room ever since Alex's dad passed away.  It is the only dining table that my kids had ever known.


Despite all of the effort that we put into rearranging so that they could have desks in their rooms, my girls do their homework almost exclusively on the dining table.  As soon as I come into the house I plop my computer bag and my purse onto a chair at the table.  Groceries are sorted at this table.  Almost all of our meals have been eaten at this table.  Many guests have been hosted.  Conflicts have been resolved.  Serious conversations have been had.  Many prayers have been prayed at this table.  Our dining table is, in many ways, the heart or the hearth of our family home.

Alex has always taken care of this table as a precious artifact from his family history.  When we have to move the table, it must be done with two people so that it can be lifted not dragged.  Expanding the table by adding additional leaves to it must be done with great care and attention lest it be jostled too much and things get out of joint.  I never knew if this was because the table was so important to him or because he's just a really meticulous dude.  It might be both.

For a long time we had these custom made cushiony cover thingies on the table at all times.  I don't know why.  They came with the table so we kept them on.  And because they were ugly, we always had a table cloth on the table.  And because we had kids, the table cloth was always getting disgustingly gross so we washed the tablecloths almost every day.

Two years ago I asked myself why we were putting so much effort into protecting a table that was almost 50 years old and far from my ideal table.  I made a big change to our lifestyle and decided that we would let our table be naked, come what may.

Well, what came was that one day, while his mom was watering plants in the backyard, Josh took a ball point pen and carved a significant number of shower heads, hairdryers and fans into the table top where he sat to have an after school snack.   Here are some pictures of his "designs".



My first thought was that my husband was going to have a cow.  My second thought was that the table top was already pretty old and worn.  I posted some of these pictures on Facebook and a friend suggested that I simply refinish it.  Another friend even suggested a specific place nearby who might do a great job.  But given the busyness of my life and my tremendous hostility to taking on household projects, I knew that this would never happen.  I just internally prepared myself to live the rest of my life with a dining table with some artwork on it.  Maybe it would just be a conversation piece.  Or we just never let any non-family member sit where Josh usually sits.  I contemplated returning to table cloths.

Alex did have a cow, but just a little one.  He had a calf.  He was upset but quickly submitted to the chaotic power of Josh.  We have an autistic child.  Whaddya gonna do?  Fight to have a semblance of order in our lives?  I think not.

I'm not sure how it happened but somehow my husband and a good friend of his were chatting about what happened to the table.  The friend happened to be a designer and inventor who knew how to work with wood.  And he happened to have a power sander.  I kept coming home from work to see them working on the table with great gusto.  I think they were actually having fun.  Alex was really enjoying learning a new skill, something that he always wanted to know how to do but never had the time or bandwidth.

This is a picture of them and the table before the final varnish.  It was an amazing transformation and resurrection.  I couldn't believe it.  It was a gorgeous color of reddish brown; shiny, gleaming, almost radiating a loving warmth to our home.


Here is a pic of the final work.  Beautiful, isn't it?


How I wish the story ended there but, alas, it does not because two nights ago, the girls had left a permanent marker on the other end of the table from where Josh sits.  As I was preparing his pills, in a split second Josh took the black permanent marker and did this.


I turned around to see him holding the marker in his hand.

"Josh, what are you doing?!!!"  I yelled.

"Josh, what are you doing?"  he replied, calmly, eating a tomato.  If he sensed my emotion, he gave no indication.  It occurred to me that even our dog knows when he is in trouble.  Luther knows when to avert his eyes and get out of the way when I find that he's ripped up a stuffed animal or has peed on the carpet.  But my son acted like it was no big deal, like he was the one who knew some peaceful, deep wisdom that I could not yet fathom.  I just stood in the kitchen with my mouth open, silent, fuming and flummoxed.  Our beautiful, refinished table, was ruined once again.  After a few minutes of silence Josh said to me, "Want more toast".  Sigh.

Years ago, a wise mentor once taught us that we have to remember that the many things that we work to build in our lives are like sandcastles.  We work hard to build something and we want them to be beautiful, excellent, impactful, and lasting.  But in the end, like sand castles, the things we build are ultimately washed away.  Organizations, churches, ministries, institutions, programs, careers, wonderful as they may be, they all have their ends, often sooner than we expect.  Even expensive dining tables don't last forever.  None of the things in my house will last forever.  Even my house will not last forever.  From a Christian perspective, the only things that lasts forever are people and God (and maybe animals, I'm not sure about that one yet).

A few weeks ago while we were on vacation at the beach, we ran into a pair of brothers who were hard at work on a super-duper sand castle.  They had roped off a section of the beach and were building a replica of an actual European castle that they had researched.  Both were engineers who grew up at the beach making sand creations in their childhood. They spent quality  time together once a year by spending a whole day making something beautiful out of sand.  This project took them over 13 hours.  They arrived with their many tools and buckets before dawn and we helped them pack everything up using our flashlights on our phones.  As we chatted at the end of the day, I asked them why they did this and wasn't it a bummer that their creation would be washed away by the next morning?  Exhausted but happy, they said that it's all part of the process.  They did not expect it to last forever.  That was not the point.  Their wives let them take a whole Saturday away from their families not to build the sandcastle but to invest in their relationship as brothers.

I've been thinking about this sandcastle ever since that day.  The beautiful, valuable things in our lives are but a reflection of that which is ultimately lasting beauty.  We will enjoy our lives, our relationships and even our things better if we accept that and just give ourselves to the process of life in this temporal world.











Monday, December 8, 2014

The Blessing of a Meal Delivered


Sometimes I like to pick organic food from my winter front yard garden like onions, chard, kale, spinach, lettuce and herbs and prepare a healthy meal together with my three children.  The girls are much more likely to eat vegetables that they have helped to prepare. Even Josh gets into the kitchen activity by helping out with the washing and cutting.  I like how everything feels very warm and "hearthy" as we cook our dinner together.  We often end up singing together and I tell them stories of how my sister and I used to enjoy learning about the pleasure of cooking from my mom.

I'm just kidding.  The above paragraph is me falling into a fantasy of idyllic, unrealistic mommyhood.

Yes, there are days when I pick vegetables from my garden and whip up a salad.   Yes, sometimes I have a vision for dinner early in the morning, prep it all and pop it into the crock pot by ten in the morning.  Yes, the girls do sometimes help with dinner prep and they always set the table but it's rarely the happy, zappy picture that I imagine that it could/ should be.

But there are days, my friends, there are days when I feel like would rather stick knitting needles in my eyes than make dinner.

Do you ever approach 5pm and find yourself realizing that it would take every single ounce of motivation and energy that you have in your profoundly tired and spent body to cook dinner for your family?  Are you ever tempted to spend large amounts of money on cardboardy, unnutritous food YET AGAIN because you cannot bear the thought of pulling out that skillet to create something that comes from your own refrigerator?  Does the thought of doing dinner dishes fill your heart with heavy, gummy, sticky dread?

It was on a day such as this a few weeks ago that I experienced "The Blessing of a Meal Delivered." My husband had had a minor surgery on his knee and, therefore, had to ask for my help every time he needed a glass of water.  The girls were taking turns being sick.  Sleep was not good for anyone that week.  Joshua's home autism therapy was hitting some walls and needing much more of my attention.  It wasn't like my life was on fire but I was WORN DOWN.

A few friends from church rallied to deliver us a few meals.  Each meal was stupendously delicious because someone else made it and they infused it with love.  The picture at the top of this post captures one such beautiful meal.  Ironically, it was a vegan meal delivered by a family that is vegan.  I don't know if my kids even know what veganism is and they certainly have never had a whole vegan meal but we all devoured this dinner with deep appreciation.  German vinegary potato salad, super wholesome, nutty, chunky bread, well-spiced and tasty veggie burgers, it was all fantastic.  And it had been delivered by a smiling, empathetic person who cared about us. Truly, it was the grace of God made manifest in a real way to my somewhat mildly overwhelmed life.

If you know someone who is having a hard time, consider offering to bring them a meal.  Prepare something yummy and somewhat homemade.  My suggestion is that you bring it to them in either disposable or pretty serving dishes which they can return with no hurry.  Include something healthy and something chocolate.   And never, ever underestimate the blessing and power of a meal delivered.

Tuesday, March 18, 2014

What to Do When You are Anxious about Your Child


Recently, I went to a seminar on the topic of "The Future of Housing for Autistic Adults".  It was free and being held about five minutes from my house so I thought, why not?  This could be helpful information just to keep in mind as I think about my eleven year old son's long term future and I've got the mental bandwidth today.  Oh, how wrong I was.

As soon as I walked into the auditorium, I realized that I had made a mistake in coming with so little emotional preparation. The anxiety covered the room like a thick layer of peanut butter.  Parents of adult individuals with disabilities had that familiar look of exhaustion and desperation.  The few people that I tried to interact with at the refreshments table seemed to be carrying a thousand pound burden with them.  As the panel began to discuss, things went from bad to worse as the panel members (governmental leaders and activists) ping ponged in their presentation from defensiveness to bitter anger about the current housing situation for adults with developmental disabilities.

I tried to concentrate on the information that I was gleaning from the handouts about the history of housing for the developmentally disabled in our state and understanding the complex system of power and bureaucratic authority in this realm.  However, I couldn't block out the disturbing and disrespectful ways that the people on the stage were interacting with one another.  I found myself upset and, more than anything, anxious.  What does this mean about Josh's future when I can no longer take care of him?  Am I going to have to deal with a broken and dysfunctional governmental system that won't help me to meet his needs?  Am I going to be able to have any service providers that I can trust?  The anxious thoughts swirled around in my head until I finally decided that I needed to get the heck out of there, spilling coffee on my neighbor as I scurried out of my row.

In my almost 12 years of being a mom, I have observed that it is very natural to struggle with anxiety now and then about things having to do with our children.  After all, we have responsibility for these creatures and, whether your child has a disability or not, they all have complex needs and challenges.  The road ahead is fraught with danger and threats.  Our children have weaknesses in their bodies, minds and character.  We worry about what this might mean for them in their future.  To some degree, anxiety causes us to engage, to think ahead and to fuel us to solve problems.  Some might say that anxiety is a blessing.

Yet there are times when we see anxiety for what it is, a way that we say to ourselves, "This dark scenario that I have for the future is too scary,  too big, too bad for anyone to handle, including God."  At the root of anxiety is a belief that God's love for us will not be powerful enough to give us a good future and that we need to be in control.  Ultimately, unchecked anxiety will not be a useful tool but it will rule over us, crushing our peace, joy, and trust for God and other people.  Anxiety feeds on itself and on our anxious behaviors.  It will make  our minds unable to rest, our souls unable to worship freely and our bodies unable to function properly.

Therefore, as a veteran in the battle against anxiety, I would like to share with you some wisdom about how to not let anxiety rule your life.  When you realize that you are gripped by a dark scenario about your (or your child's) future that does not include the hope of God, I suggest the following:

1.     Talk to someone.  Tell someone exactly what is making you anxious.   Don't rehearse it over and over.  Don't chew on it like cud.  Just get it out of the warm, moist environment of your own head and let the antiseptic power of fresh air and sunlight start to do it's job on your anxiety.  If you don't have someone to talk to, journal it out.  Just get it out.

2.     Pray.  It doesn't have to be complicated.  I like Anne Lamott's suggested prayer, "Help!"  If you are too anxious to pray, ask someone else to pray for you.  At the root of prayer is the declaration that we need help and that we are not in control.  This is an excellent place to start.

3.     Give it over to God.  When I am feeling anxious, I often pray with my hands open as a sign that I am giving to God the heavy things that I am holding.  I also find it helpful to name the thing that is burdening me and praying out loud, "God, I give you my fear of ____" or "I want to trust you with ____".  It's helpful to renounce our perceived control over the uncontrollable things of life and to hand it over to God in a specific way.  Another word for this process is "repentance".  This word does not have to do with "burning in hell" as much as "letting go".

4.     Repeat.  Any significant spiritual and emotional process is usually not "one and done" but rather a process of continually relinquishing.  If the anxiety comes back, repeat steps 1-3.

5.    Remember, your child belongs to God.  Go.  Look at your child or a picture of your child.  This gorgeous person was made by God and is, right now, being parented by God.  His love for your child eclipses your own. Your job is to do your best to nurture and provide for this child but you will have limitations . . . big, fat limitations.  Your task is to do the best job that you can do while being a human being.  God gets this.

6.    Commit to living a non-anxious life as much as you can.  Take time to rest.  Take time out of the swirl of life to make simple plans for moving forward.  Feed the your soul with messages of God's love for you.  Today, I did this by cutting some roses from my garden and putting it on my desk just for me.

7.     Locate areas of avoidance and seek out help and accountability.  I find that avoidance and anxiety are dance partners.  For example, I have an ugly, mean ol' stack of papers on my desk right now that I am avoiding (out of the anxiety that I have about them) yet it's presence daily fuels my anxiety.  I have shared about this stack of papers with two friends who are praying for me and supporting me as I try to clean out patterns of avoidance in my life.  I'm taking one step at a time and it's working.

8.   If anxiety is having a long term, immobilizing grip on your life you may need to get help from a professional like your doctor, a therapist or a pastor/ leader of your spiritual community.  If you find that anxiety is affecting your sleep, eating, relationships over time please do not be afraid to address deeper needs of your life with more significant resources.

By the way, I am highly aware that battling anxiety about our children, our lives, our future, anything is not a simple eight step process. It is truly a battle.  But it's a worthy fight.  Don't give in to anxiety. It's a rabbit hole of darkness and you don't want to live there.  We were not meant created to walk in anxiety but in dependent trust in God.  He cares about you and He cares about your children. He has a good future for your life if you can trust in Him with it.

Finally, I would like to remind you that anxiety is not love.  One mom shared with me that after her child got very ill, she stopped sleeping for days embracing vigilance as a sign of her love for her child to the point where she sacrificed her own health.  God spoke to her that she does not need to prove her love for her child or to prove that she's a great mom by giving herself to hyper-vigilant worry.   I've known and prayed for many children who have been very adversely affected by the leakage of their parents' burdensome anxiety.  We don't love our children by being anxious. We love them by trying to walk in spiritual health and freedom.

How are you doing as you battle anxiety in your life?  What are you finding to be helpful?

Wednesday, October 2, 2013

Feeling Secure


A few weeks ago the kids and I happened to visit a park in town that we hadn't been to in a while.  To our surprise, the city had replaced one of their regular swings with an adaptive swing, one intended to give more support to a child, likely one with some sort of special needs.  Josh found his way into it and immediately started smiling and laughing.

His sister pushed him for a while and when she stopped, Josh said, "Want more push."  Between his two sisters and I, we must have pushed him on that swing for at least 30 minutes.  Each time we stopped, Josh asked, "Want more.  Want more." He requested with such a sweet cackle/ giggle that we couldn't say no.  We were pushing him higher than he's ever swung before and he was just loving it, laughing loudly like a lunatic the whole time.  

When we finally stopped to rest, I realized that, while Josh loved swinging when he was younger, he hasn't been a fan of playing on swings for quite a long time.  We have a park near our house that only has regular swings and he never wants to be on it, preferring to sit in the sand and watching the sand pour through his fingers instead.  It's been years since I've pushed this kid on a swing.

Why, then. did Josh want to swing on this swing so much?  And why was it making him so darned happy?  Why was he willing to take a risk to let us swing him so high?  It dawned on me that, due to the shape and design of this adaptive swing, Josh felt secure in it.  He is quite sensory seeking so he loved the proprioceptive input that he got from a swing. However, because of his low tone and poor core muscles, I think that he feels insecure about being swung and having to hang on for himself.  But with the extra support of this adaptive equipment, he could relax and just give himself to the experience of swinging.

This observation made me think about how there might be other ways that Josh might be willing to take new risks if he had more support, specifically, a better sense of feeling secure.  Might Josh be willing to roller skate some day if we figured out a situation that worked for him?  The very thought of it makes me laugh out loud!

I also found myself thinking about some of the ways that I might be willing to take new risks or enjoy a certain activity if I had more support in some way that I feel insecure.  For example, might I do more writing if I had the equivalent of an "adaptive swing" in my life?  Could I fly higher in some way, laughing as I went, asking God or my community or a mentor that I "want more push"?

How about you?  Is there some way that you have been avoiding something wonderful because you feel insecure?  How might you seek out an "adaptive swing" experience?


Tuesday, April 23, 2013

I Don't Know How She Does It



I'm a busy girl.  This is a photo of one month on my dayplanner.  Scary, isn't it?  My husband calls it "scheduling in tongues" because it looks completely incomprehensible without supernatural interpretation.  We do use online scheduling tools and calendars as well but I still can't part with my trusty paper dayplanner to be the central management center for all of my miscellaneous appointments, to dos, and events.  And there are many.  Many.  Many.

For instance, in the month of March, Josh had 5 doctors appointments, 8 autism therapy appointments, 5 adaptive swim lessons, 2 med adjustments, 3 blood draws, 3 special consultations and 24 hours of respite care divided up into 5 sessions.  Many of these appointments were scheduled then rescheduled several times.  This doesn't include appointments and activities for my two other children.  But I did it because it had to be done.

Recently, several people who know how complicated my life is, especially because of Josh, have commented "I don't know how you do it!"

This reminded me of an excellent novel I read a few years ago about the complexity of motherhood by Allison Pearson called I Don't Know How She Does It.  It made me laugh and cry. I really related to the central character who lives an incredibly busy life juggling marriage, kids and job (getting very little sleep) and squeezing a million demanding things into 24 hours (and she doesn't even have a child with special needs!)

I've been thinking about the question, "How do I do it?"  How do I manage all of the really complicated demands, details and dramas of my life?  There are probably many answers to that question but, today, one thing comes to mind.  A crucial part of how I can handle my crazy, "mom of a multi-disabled child" life is that I have to have a a few places in my life where I allow myself to be totally weak and needy.

For example, every once in a while, I make my husband listen to me vent about how frustrated I am with dealing with dysfunctional organizations and systems that are involved in getting proper services for my son.  This conversation usually involves me expressing anger, critical thoughts and despair.  I cry.  My husband listens empathetically without trying to problem solve.  This usually helps me a lot.

I experienced another example of being weak this past Sunday at church.  At our church, we have something called, "prayer ministry".  This means that at the end of every service the pastor invites anyone who has a need for prayer to come up and stand at the front of the church.  You stand there facing the front, with your eyes closed and with your hands held out open in front of you and you wait for a person who is trained in prayer ministry to stand with you.  When the pastor closes the service, you sit down with that person who will listen to you for a few minutes then pray for you.

This week had been particularly difficult so I just knew in my heart that I really needed to get prayer.  I even arranged ahead of time for someone else to go pick up my kids from their Sunday school class so I could have a few good minutes to get prayed for.  I was ready.  But, wouldn't you know it?  This time, when the pastor invited people who wanted to get prayer to come forward, no one went up.  The whole congregation sat in the "one and half minutes that feels like an hour" time of waiting to see what would happen.  No one likes to be the first or only person who goes up front to get prayer-- all eyes being on you.  It feels like you might as well wear a sign on your back that says, "I'm the neediest person in this whole room!"  Plus, I happen to be the wife of the pastor of our church who happened to be leading this prayer ministry time so there's the extra feeling of a spotlight on me.

But you know what?  I just might have been the neediest person in the whole room.  I don't know what's going on in anyone else's life but I do know that there are burdens in my life that I just can't carry alone.  I decided to embrace the reality of my weakness.   I walked up to the front of the room and stood there declaring my need to God, to myself, and to anyone who might have been watching.  Thankfully, many other people followed.  Even more thankfully, I felt that God met me in a deeply comforting way as another woman from our church prayed for me.

I have realized that I have to spend a lot of my day being competent, organized, and strong.  Sometimes I can be in that mode for days on end.  Sometimes I can fool myself into thinking that I have to be like that all the time for the sake of my kids.  However, I am finding that the best way to be a strong person is to find the right, safe places to be a weak person.

When do you allow yourself to be weak?  Do you have places where you can take a risk to declare your need to yourself, to others and to God?