A few days ago, Jonathan and I visited a group
home in the area and talked for some time with the remarkable woman who started
it for her own son who is developmentally disabled. Jon was ready to move
in. He had brought a bagful of personal items from home and found the only
empty bedroom in the house, immediately claiming it by putting his things on
the bed and shutting himself inside.
These homes are costly to operate, about the
price of private college tuition per person, per year. Florida, like most of our United States,
is broke and budgets are frozen for the Agency for Persons with Disabilities.
Jon has had eight cuts to his funding in the last two years and we've heard
another big one is on the way next year. Presently, not one extra dollar of
funding is available unless families are in crisis, which is defined by the
state as parents or caregivers who are too sick or too dead to care for their loved
one anymore.
The question that haunts every parent of a disabled child-what will happen to Jon when we are no longer here? The state will step in and place him, but we of course, won't be here to have a say in where he is put. Not all residential facilities are created equal and some are places you wouldn’t put your dog in, never mind your child. Some families have the means to private pay for long term care but for those of us who don’t; this is a problem that doesn’t go away and one that isn't discussed at presidential debates or anyplace else. This dilemma sticks to the back of our mind like old gum underneath a table, especially as we and our child age.
The question that haunts every parent of a disabled child-what will happen to Jon when we are no longer here? The state will step in and place him, but we of course, won't be here to have a say in where he is put. Not all residential facilities are created equal and some are places you wouldn’t put your dog in, never mind your child. Some families have the means to private pay for long term care but for those of us who don’t; this is a problem that doesn’t go away and one that isn't discussed at presidential debates or anyplace else. This dilemma sticks to the back of our mind like old gum underneath a table, especially as we and our child age.
So what to do? We pray and trust that our
God who created and gave us this person to love and care for will see to Jon’s
every need, while we actively turn over each rock and knock on every hopeful door.
It seems that we have hit one dead end after another and these situations
severely test our faith. If we truly believe that as God's people, our
provision ultimately comes from Him, then we know He is able to fulfill the
purpose and plan He has for Jonathan. God loves him far more than we do and has
not forgotten about him or us, though at times my feelings and what I see with
my earthly eyes try to convince me otherwise.
Christ’s disciples once asked Him, “What
are the works God requires of us?” Jesus told them that the work God
requires is simply this - to believe (John 6:28-29). The practice of walking
by faith rather than by what is seen (2 Corinthians 5:7) in front
of us at the moment isn't easy but it ultimately brings us to a place of peace
and rest that nothing in this world can offer.
In the Gospel of Mark, chapter nine, a
desperate Dad came to Jesus pleading,”Teacher…if You can do anything, have
compassion on us and help us.”
Jesus replied, “If you can believe, all things are
possible to him who believes.”
Then the father of the child cried out and said
with tears, “Lord, I believe; help my unbelief!”
I identify with this guy. I am him. He is me. He is all of
us. But the good news is this; Jesus is greater than my unbelief and He is
greater than my problem! As I wait for
the impossible, my faith continues to grow in this difficult place. I'm learning how to wait, trust and believe.
I know from past experience that my faithful God will come
through for Jon, for us. It may not happen exactly like I imagine or at the
time I think is right but it will happen in His time, in His way and you will hear me shouting from here when it finally does :)
Psalm 37:7 Rest in the Lord, and wait patiently for Him…
Sis, you have such a way with words, you are inspirational to us moms!! Whether our kids are "normal" or "disabled", they all have problems, and you give us hope.......God Bless you!! Keep writing, gal, it is your destiny!! xoxoxo Sher
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