Wednesday, January 22, 2014

Advocating

When Tim and I fostered our first child with special needs it was an eye opening experience.  We never knew, never, what a blessing it was to raise these children.  How God loves these kids and moves on their behalf daily.  How much they change your life.  How they bring out the best in us and the other children in our home.  The biggest thing that we learned is that children are children are children and that these children are normal and need as much of a normal type life as possible.  Normal family routine and normal outings and functionings even if it means a lot more effort to get them there.

As we took in child after child we learned the ropes of therapy and IEP's, wheel chairs and braces.  We poured over magazines and websites that carried equipment and assistive devices for children with special needs.  There was a whole world out there that we never knew anything about.  So many wonderful inventions of ways to get a child into prone standing or into a gait trainer so they could practice walking fully-supported.  Time after time we would find just the right thing and then see the price tag.  Time after time we would find the one piece of equipment that we knew would change our child's life in a major way and then find out that there was no way to pay for it or no one willing to write up a script for it...

As we took a new child to a doctor, they would have concerns about this or that and it would send us spiraling to many specialists that would send us to even more specialist because of what they would find.

One of the hardest aspects of fostering, adopting or birthing a child with special needs is having to fight and sometimes fight hard and long for the things they need.  Advocacy.  It is a constant that never seems to stop.  From finding funding for equipment to fighting to get coverage for therapy.  From fighting to get to the best specialist in a field to fighting with a specialist for what you know your child needs.  It can be exhausting.

You guessed it.  I am in one of those long drawn out places of advocating for what I know one of my children needs and not seeing any end to it. 

The last go around happened last year.  It took us a good six months to get settled.  Antonio was turning 18 years old.  At 18 he was going to loose his insurance unless he furthered his education. (college)   If he was furthering his education he could keep his insurance till he was 21.  It was months of making phone calls to find the right person who knew what would be considered furthering ones education in Antonio's situation.  What we could do in order to meet that requirement, in his condition, to still keep his insurance.  It was horrible.  I finally gave it all to God and it all came together and is settled. 

This time it is medical.  Antonio for the last 3 years or so has had a toe that is very hard to keep healed.  He has poor circulation in his legs and feet. It is an ingrown toe nail.  We have it removed and it comes back again, each time they remove it, we have a hard time getting it to heal.  He has spent most of the last several years with an infected toe or a toe that we were having a hard time to get to heal.  We have even went to Wound Clinic for it.  The pediatrician and I have talked about it quite a bit and what can be done.  The solution is to get the nail bed cauterized.  It will stop the vicious cycle with his toe.  The nail will no longer grow down the side causing irritation and infection over and over again, once this is done.  Enter Dr. S.  (the specialist we were sent to, to cauterize the nail bed.)
I could tell from our first meeting he did not like us. Not a good thing.  He said the toe was to infected to do the procedure and does not believe me that we could not get the toe to heal all this time.  So  he just does the procedure to remove the offending part of the nail.  Something that has been done time and time again and not solved anything.  He says he wants to watch and see that it heals for himself this time, like he can do something Wound Clinic could not. He makes me sign a paper saying I will do everything he says to get it to heal.  As if I have not been caring for it well at home.   He makes us drive to his clinic very frequently, 45 minutes away so he can check on the toe.  It does not heal well and is now infected again because over the last many months the nail is growing down the side again.  Now he wants vascular testing done before he makes any more decisions or proceeds.  Sigh.  (Sorry, didn't mean to vent) I feel better.  :)

I just shake my head and pray.

I know in the big over view of things, this is not a huge deal.  We have been thru many very hard things, many life threatening things. But how some of these situations drag on and on, are hard on our family and can be difficult.  I also don't like seeing Antonio or any child with an on going problem.

So, what to do now.  I have been praying but now I hand it off to God. The whole thing.  All of it.  Even my dislike for this doctor.   God is a huge God.  Nothing ever occurs to God.  Nothing ever dawns on God.  He never gets an idea.   He knows all things. 

I so often forget to just let Him have it all from the begining.  If I would, I would save myself a lot of frustration and sometimes anger or anxiety.  Defenately would have saved myself a lot of stress just to let Him handle it all.

When I finally get to this point in times past.  Equipment got donated to us we needed, surgeries got moved up we were waiting for and children were healed.  When I let go of my controlling self and give it to a God that is in control, things happen!  Praise God!

I don't know why I keep having to learn this same lesson over and over again but it sure feels good to not own it anymore and give it to the one that can actually do something about it all.

May we all give to God our whole selves.  Holding nothing back.  May we all give to God all things.  Especially the things in life we have no control over anyways, so He can do what needs doing, in His will, in His time. 

Luke 18:27  And he said, The things which are impossible with men are possible with God.

 

Hebrews 13:5  Let your conversation be without covetousness; and be content with such things as ye have: for he hath said, I will never leave thee, nor forsake thee.

 

Blessings, 

susan

 



4 comments:

  1. Hugs, honey. Some days are harder than others ... and so are some people's heads. (a virtual head smack to that doctor) Now I feel better. :-) Hang in there!

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  2. Thanks Julie, you really made me smile. Virtual head smack to him! Ha ha! I guess thats one way to lay hands on someone! Seriously though, the man needs prayer. :) Thanks for understanding and Blessings to you!

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