November 26, 2010

This is forever.

So this may not shock you.
We are sad. 
So very sad that this is not going away.

Mason is who Mason was.
Mason is who God intended him to be.
Is this hard for us, for me?
I don't know when this won't be hard for me.
But the realization of it all has begun to sink in.

My son has Special needs and they are not going away.

Mason has Smith-Magenis Syndrome and Autism.

There is much to be done.
There are so many decisions to be made.
Are we ready?
Well we have to be.

This week I called our government office...
the office in charge of paying for all medical supplies.
I left several messages that they were to call me by the end of the day.
"Waiting eight weeks just to get an appointment that would be another eight to twelve weeks away, and then a six to eight week waiting period for the decision was unacceptable".
I received a message at the end of the day from them, they were leaving for the day.
So I left a message stating that if I had to give my son over to social services in the next six months, it would be on her".
We would sell every last item we had before giving Mason over.
Just so you know.

I received a call the very next morning from the nurse.
Our appointment in on Monday, November 29th, 2010
That's right this Monday.

Squeaky wheel gets the oil.
And I got the oil.

The nurse will come assess and talk with us.
She said she will have a pretty good idea whether or not he will get on the program.
If she says no...

I have yet to receive all the papers we need to apply for the Autism funding.
I know that the coming weeks are going to be an emotional time for us.
When the pieces of paper that say my son has Smith-Magenis Syndrome and Austism arrive...
it's starts.
It's official.

Can I ask for extra prayer this Monday?
This Nurse needs to see that Mason needs to be on this program.
That he has the right to be on the program.

The final decision will be made on December 16, 2010 by a board of government people.
People who have never met my son or my family.
Pray for their hearts to be open.

Pray we get funding.
Funding would change everything.

The past is the past.
The debt is just debt.

But we can't keep up with the way everything has been going.
There is no more money to be begged, borrowed and never stolen.

Pray.Just.Pray.

I need to thank you, the support has been so needed.
Both Nick & I have felt very alone for a very long time.
You have touched us, your comments & emails have kept us going these past two weeks.
Thank you.



The Sears Fam

13 comments:

  1. I will keep you, your family, and those who will be part of your medical team, in my prayers. All my life, I've hated conflict. I can't stand the thought of hurting another person's feelings...and being "rude" is not acceptable behavior. It wasn't until we were struggling to get a diagnosis from a pediatric GI doc that I learned about becoming a squeaky wheel for the sake of my child. You've been through much more than I have, but I remember that feeling. "For you, this is just another appointment, just another typical day in the office. For me (and my husband), this is all we can think about. It is the center of our universe right now." That's a feeling no parent should have to go through, but I marvel at your strength. Thank you.

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  2. You are in my prayers everyday, but I'll def send a extra one for you MON... I REALLY HOPE IT GOES WELL, AND YOU GUYS GET THE FUNDING!!!!! You need it, you deserve it, you are a family who wants to keep and care for special, beautiful, wonderful son... if the govt won't help you, but they'll hand out to so many other ungrateful open hands... I will be sick. Love to you and yours!
    ~Amanda
    Oh, and I hope you guys were able to enjoy your Thanksgiving. You have 3 beautiful blessings! :)

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  3. 1st, that is an awesome photo. I absolutely love the joy and love in it. Hold onto that joy. You are so right when you say this is how God intened things to be. Even thought it is beyond hard. Prayers, prayers and more prayers coming your way.

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  4. Praying that the "powers that be" are child centered and have open hearts and minds. Praying for continued strength for you all.

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  5. sending you and your family lots of love! Thinking of you ♥

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  6. Oh, mama. My heart breaks for you. Praying and hoping with you that the right and best decisions are made for Mason.

    much love
    <3

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  7. stay strong through this storm. You are an amazing mom (it is reflected in your words and your attitude) and can conquer the world! We will pray extra prayers on Monday for your family, the government officials, and the nurse.

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  8. Dana, praying doesn't seem to say enough, but what else is there to say. We are still sitting without the umbrella diagnosis that will make people believe me that something is wrong, terribly wrong. So I know the fight for the diagnosis is a bitter one, we fight so hard for a label that when it (the label) arrives, we are devistated to hear the words and to breathe the breaths and to see the unchangeable changed. Our sweet babies are ours and we love them with and without their labels, but the label comes with a finality that hits with a sucker punch!! I felt breathless when the doctor uttered "there is something wrong with your baby's heart". I was left stunned and reeling from the blow that "oh that, that was a seizure, oh she has those all the time, I am sorry ma'am your daughter has a seizure disorder, that will likely never go away" brought with it. I sit tense and anxious now, waiting for the rest of the blows to hit. I want so badly to find the diagnosis that will help us help her, but I pray, I beg God to let the doctors find nothing so that we can breathe and she can be a sweet snuggly perfect normal 10 month old.

    I am praying for you, Nick, and Mason. I pray your strength is never depleted, your fear is never overcoming, and that never, never do you feel alone again!!! Love and support from us to you my friend!!!

    Jess

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  9. You don't know me, but I'm praying - hard. Sending you lots of love!

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  10. Praying - so hard. What an awful thing to have to hope for, and my heart aches for you. To want him to be free of all this, but to want so much for him to have it so that he gets the help he needs.

    ((hugs))

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