Friday, September 20, 2019

"How Can I Help?"



Quite often I see posts on social media that asks families with special needs children how they can help ease the load. I have not had any offers so far.  Of course, there are many things people can do to help out a struggling family with limited time and energy to adequately meet the demands of a 24 hour care-giving job.  Meals can be prepared, offers to do chores can be made, providing respite to the parents by offering to babysit for a day? Maybe two?  Financial assistance.  So many ways to help out, aren't there?

I once asked my mom how I can help her out since she lives alone and she told me that the best way to help her out is to do good for myself.  To live responsibly.  Be fiscally responsible.  Be happy in my marriage.  Be a loving mother to my boys.  Be a good citizen for my community.  This made me think about how others can best help us, not just temporarily with offers of services, but in a lasting way which really perhaps maybe the reason why my son incarnated with a rare syndrome.  The best way, as similar to my mother's request, is for others to live a good life.  Be responsible.  Be a kind, caring, sensitive and compassionate person.  Don' mock or be judgmental of those that are different or less fortunate or are spiritually/mentally lost. Be mindful with your words.   Love your families.  Love yourselves.  Do good in your communities.  Seek to know God. Strive to make this world a better place - I know that's a broad statement but you get the sentiment.  If everyone on this Earth did this for my family, how enriched our lives would be.

Having said all that though, I won't refuse offers for respite care and household chores.

Friday, September 6, 2019

A Course in Unexpected Blessings



I've joined a study group online for the book Unexpected Blessings,  the Joys and Possibilities in a Special-Needs Family hosted by the author Sandra Peoples ( link to book ).  It is a Bible centered  book that gives a Christian perspective on the topic of disability, and raising special needs children.  A group of special needs parents enrolled in a group on Facebook dissect the book and share experiences on their journeys with their children.  The author has 4 other Christian, special-needs authors as guests, some of whose books I’ve already read.

The first author to be interviewed was Becky Davidson, mom to a teenage boy with autism, president of Rising Above Ministries, co-author of Common Man, Extraordinary Call and a widow.  Becky shared how at one point in her journey she spoke about her mistrust of God after her husband's death.  She was a faithful christian and was a leader of ministries that helped people like herself, living with a disabled child and yet, God took away her husband and left her a widow.  This made me think about what happens when we pray and pray for healing, restoration , good things in our lives and they don't happen?  Where do we stand with God when God doesn't answer our prayers?  Why pray for things at all?

There is a saying, "Hope for the best, expect the worst and you won't be disappointed.”  At some point, I realize our faith has to mature beyond just asking God to give us things that make life easier and better.  It's like children ask for things from their parents because the adults hold the purse strings and are responsible for the care and well being of their children.  But, as children grow, they take responsibility  for their own lives and are able to do things for themselves.  Likewise, our faith starts off by asking God for things to be taken care of but as our faith matures, so must our demands.  We become co-creators with God and have to be willing to accept things that happen in our lives with grace.  Didn't Jesus say, "In life, you will have troubles, but I am with you always".  I don't expect all my problems to go away or be shielded from life's troubles because I found faith.  But, I do expect to have angels, Jesus, God and the heavenly realms to be with me, by my side, in my earthly trials giving me strength, encouragement and support as I walk through the dark valleys. And, there have been many trials in life and having a special needs child is not one of the worst of them.  Just because I found God doesn't mean all my troubles disappear.  There is a Zen Buddhist saying, "Before enlightenment, chop wood, fetch water.  After enlightenment, chop wood, fetch water."

There is a blogger by the name of  Kurt Koontz who shared his experience as a traveler in India and encountered a yogi who said he doesn't worry about the outcome of any situation.He said, "Life is so chaotic and most things are out of our control"  So, through his particular faith he has come to learn to just unconditionally accept what happens as it happens and  to release the ego's desire for wanting things to happen as it wants.    That's a very big thing to achieve mentally and I'm not sure I am a master at that, yet.  But, it's something worth striving for at least for my mental health.

What I have found in faith is a peace from anxiety, a knowing I'm not walking alone but have a spiritual team by my side, both in heaven and on earth, giving me healing, good counsel and encouragement.  That is all I've come to expect from my faith and I am satisfied with it.  I still have worries and fears about the future occasionally but when I do, I know I can go to prayer for comfort and it really does help settle me.  This life is just a short and strange blip in time before we all go to our real home in the afterlife.  Hopefully, it's much nicer and pleasant than this Earth classroom.   Maybe the Soviet communists were right when they said "Religion is the opiate of the masses", and what's wrong with that?  If it helps ease pain, relieve anxiety, gives hope and a sense of belonging and love, I don't see anything wrong with it.

"Invisible Mother"





🔸Invisible Mother ðŸ”¸
It all began to make sense, the blank stares, the lack of response, the way
one of the kids will walk into the room while I'm on the phone and ask to be
taken to the store. Inside I'm thinking, 'Can't you see I'm on the phone?'
Obviously not; no one can see if I'm on the phone, or cooking, or sweeping
the floor, or even standing on my head in the corner, because no one can see
me at all. I'm invisible. The invisible Mom. Some days I am only a pair of
hands, nothing more! Can you fix this? Can you tie this? Can you open this??
Some days I'm not a pair of hands; I'm not even a human being. I'm a clock
to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is
the Disney Channel?' I'm a car to order, 'Right around 5:30, please.'
Some days I'm a crystal ball; 'Where's my other sock?, Where's my phone?,
What's for dinner?'
I was certain that these were the hands that once held books and the eyes
that studied history, music and literature -but now, they had disappeared
into the peanut butter, never to be seen again. She's going, she's
going, she's gone!
One night, a group of us were having dinner, celebrating the return of a
friend from England . She had just gotten back from a fabulous trip, and she
was going on and on about the hotel she stayed in. I was sitting there,
looking around at the others all put together so well. It was hard not to
compare and feel sorry for myself. I was feeling pretty pathetic, when she
turned to me with a beautifully wrapped package, and said, 'I brought you
this.' It was a book on the great cathedrals of Europe . I wasn't exactly
sure why she'd given it to me until I read her inscription: 'With admiration
for the greatness of what you are building when no one sees.'
In the days ahead I would read - no, devour - the book. And I would discover
what would become for me, four life-changing truths, after which I could
pattern my work:
1) No one can say who built the great cathedrals - we have no record
of their names.
2) These builders gave their whole lives for a work they would never
see finished.
3) They made great sacrifices and expected no credit.
4) The passion of their building was fuelled by their faith that the
eyes of God saw everything.
A story of legend in the book told of a rich man who came to visit the
cathedral while it was being built, and he saw a workman carving a tiny bird
on the inside of a beam. He was puzzled and asked the man,
'Why are you spending so much time carving that bird into a beam that
will be covered by
the roof. No one will ever see it'
And the workman replied, 'Because God sees.'
I closed the book, feeling the missing piece fall into place. It was almost
as if I heard God whispering to me, 'I see you. I see the sacrifices you
make every day, even when no one around you does.
No act of kindness you've done, no sequin you've sewn on, no cupcake you've
baked, no Cub Scout meeting, no last minute errand is too small for me to
notice and smile over. You are building a great cathedral, but you can't see
right now what it will become.
I keep the right perspective when I see myself as a great builder. As one of
the people who show up at a job that they will never see finished, to work
on something that their name will never be on. The writer of the book went
so far as to say that no cathedrals could ever be built in our lifetime
because there are so few people willing to sacrifice to that degree.
When I really think about it, I don't want my son to tell the friend he's
bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the
morning and bakes homemade pies, and then she hand bastes a turkey for 3
hours and presses all the linens for the table.' That would mean I'd built a
monument to myself. I just want him to want to come home. And then, if there
is anything more to say to his friend, he'd say, 'You're gonna love it
there...'
As mothers, we are building great cathedrals. We cannot be seen if we're
doing it right. And one day, it is very possible that the world will marvel,
not only at what we have built, but at the beauty that has been added to the
world by the sacrifices of invisible mothers.
💖
Original author: Nicole Johnson