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Thursday, May 5, 2016

So, April Was Autism Awareness Month....



...and I didn't post about it.  Not that I didn't think about it, though.
I guess I felt like having a pity party instead of celebrating this year. 
And as my Instagram feed was inundated with messages to spread
autism awareness every day, I got to thinking that really the messages
were to encourage those of us that deal with autism on such a personal 
level.  Lots of messages like "Autism moms are super heroes" and
"Autism parents.  They don't want your pity.  They want a nap."  

Usually, I'm right there with those sentiments....the ever positive girl,
 looking on the bright side.  But once in a while this whole life begins
to feel so big and...well, hard!  There are so many things to hate about
 autism.  I hate that my boys' bright minds are trapped in an injured
body that makes it so hard for them to communicate and socialize.
I hate how autism handicaps an entire family, making doing most 
things other families take for granted very difficult or impossible.
I hate how alone it makes you feel.

I hate the sense of loss of all the things that won't happen...
sending them off as adults to find their way in the world...college,
marriage, jobs, children of their own.  I hate how autism consumes
every part of a day from what we do to where we go.  I hate how
unhelpful and insensitive people can be.  My, have we experienced
some terrible things in our journey, mainly from highly educated
people in the field of education or in ministry.

But lately, I mostly hate the fear I have for the future.  I always joke
that I have to live forever.  I mean, seriously...nobody, not even The  
Mister, can read our boys like I can.  And nobody will sacrifice or care
for them that doesn't have that mother's love, which really is the only
thing that can drive such a vehicle through this difficult journey.  My
 heart almost stops when I think of having to give up guardianship of
 them as I become elderly and cannot care for them here in our home.
Not only do I hate eventually giving up my role there, but I hate
to ask someone else to take on something like that.

As I've been thinking on these things in recent days, and having a
full blown pity party this morning, something amazing happened.
 A line from a song we sing in church came to mind.
  I hadn't heard it in years.  It had to be straight from God.
A little miracle just for me to keep things in perspective.  It was...

"...because I know he holds the future"
by David Crowder

and then this one a few minutes later....

 "...God will make a way where there seems to be no way.
He works in ways we cannot see.  He will make a way for me"  
by Don Moen.  

No promises of an easy life.  No promises of a painless journey.
But this mama bird caring for a nest full of adult babies isn't
alone.  She doesn't need to be worrying about things that
won't happen for 20 years.  She doesn't need to be worrying
that the journey is taking turns she didn't want or expect.
So...a deep breath, a prayer to God and a pep talk to myself to get
back to taking one day at a time.  I'm not to be worrying about things
that won't happen for years, especially when I'm not the one in
charge and not the one that knows the future.
God dropped a clear reminder right in my lap today when
I needed it most.  And I'm so thankful for that.

81 comments:

  1. That was very profound Betsy, it stuck a chord in me. I've NEVER told anyone this, but I had a brother a year younger than myself who was autistic, but he never made it past 7 yrs. He had other complications which made everything much worse. My mother never really came to terms with his death. I really feel for you and wish I could do something to help, but I'm 3,000 miles away sadly.

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    1. Sorry, it's actually 3,821 miles from your mansion to my little hovel!

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    2. Aw, your poor mom...and you. That must have been very hard!

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  2. When there are no answers truly God is the only answer.
    We are going through something similar but definitely not on the huge scale you are.
    Our son's adopted son has Aspberger's and is manic depressive. At 20 years old his future of living on his own and doing many of the things you noted doesn't seem like it will ever happen. Without the Lord and the promises of his Word and the songs, I would feel so helpless. It's easy to say but difficult at times to really believe. (((hugs)))

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    1. Exactly....my heart knows it but my head has to be reminded over and over. haha...

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  3. I was so moved by this, Betsy, I had tears in my eyes as I feebly attempted to fully understand all the implications, all the fears and all the anxieties so cruelly dealt to you and your family. I have always admired you and your husband for the way you are coping with this huge burden and how cheerful you are in life, and kind, and warm even with all these problems. You never have a bad word to say about anyone . . .

    I shared your feelings as I read your first part, pouring out your heart as I have never seen before . . . and I too shared the hope you definitely received from God in that verse reminding you that you have a very long time here with the boys and not to worry, and Betsy, God will definitely give you strength . . . You mean so much to me and I want you to be happy . . . and I will pray very hard that the burden, or part of it, can in some way be transferred to The Lord. Bless you, Betsy, we all love you . . . Perhaps this is why you look so young and lovely . . . :)

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    1. Wish I could give you a hug . . . :)

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    2. how long are your arms? lol....

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    3. The'd have to be 3,821 miles long plus a bit of wrap round . . . haha!

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    4. Your arms wouldn't have to be quite that long, Anita. haha...

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  4. I respond to this with so many feelings but I suppose the main one is gratitude. Gratitude that you shared this with us... and gratitude that your boys have such strong parents.
    Ever since I met you I could not, and cannot, imagine what your daily life is like. You have let us in, on occasion, to experience that with you and so we have a tiny inkling of what that might be. But there is no way we can know the entirety of what you face.
    I have several friends who deal with autism in their family, but not on the scale that you do. Frankly, I don't know how you pry yourself out of bed some mornings. It must be beyond overwhelming. And yes, I think a day-to-day attitude is the only way to cope. But one can't help wondering about the future so it's not surprising that there are times when it is overwhelming.
    I am so glad that you found comfort in the lines you quoted to us and that it helped steady you. What a gift.
    Betsy, you often jest about being Wonder Woman. I think you truly are. You are talented, creative, juggle so many balls, care deeply for four-legged souls and provide an amazing, supportive, loving environment in which your sons can thrive and reach their full potential. If that's not Wonder Woman, then I don't know what is.
    I love you, my friend. Thank you for including us in this. xox

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    1. This was very sweet...thanks, Suz. :)

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    2. I wanted to comment but again my computer won't let me so I hope Suza will not mind me tacking my thoughts on to hers. It's hard to reply to such honesty. I know a very little about it because the Chef's son worked at a school for autistic children. And right next to my office is a Resources for Autism building. But I can't know anything about how hard it must be for you and the mister all day every day.
      Anyhow, I wanted to send you this random link because you might find it entertaining.
      https://www.youtube.com/watch?v=TbgVTC0_Ztg
      I can't make it into a proper link but give it a try. It always makes me laugh.

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  5. This means so much to me....yes, awareness and going there are different. You all were prayed for. I am thankful God is here today, will love me forever and has secured our future....love to you.....

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    1. Right back at you, Anita...the prayer and the love. I know you understand. :)

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  6. Oh wow. I was deeply touched by your words, and emotions. Like everyone else on here, I don't know how you do it every day, but you do. You truly are Wonder Woman! I hope you're feeling the love and caring from those of us that follow your life through this blog. We all do love you. And God's love is the greatest of all, and He will get you through. He will get the boys through too. Just don't worry about that part, and trust in His promises.

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    1. .... BUT, of course you'll worry.... you're MOM!

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    2. yeah...but I don't usually let it turn me into panic. I know better...it will all work out!

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  7. We all have our own burdens to bear. Thanks for sharing a bit of yours.

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  8. I'm speechless, Betsy. Thank you for sharing this. You handle so many different things and the words you've written here speak volumes to each of us. My mom has always told me she should've named me Martha because I, too, worry about everything instead of leaving it all in God's hands. Many times she has reminded me to "Let go, and let God" and to remember that He is in control of my life. Yes, He definitely holds the future ... and as Jeremiah 29:11 says, "For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future." You are loved and prayed for, my friend.

    Marla

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    1. I love that verse....read it a lot just after the boys were diagnosed. :)
      It's the control part that's hard...if I have a plan in place I feel better and in control...lol...
      but when life changes something and I realize I'm not in control, I have to readjust and
      recommit ...and know who really is in control! ugh....I do better than this usually.

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  9. This was very brave of you Betsy...
    We all have our crosses to bear...some bigger than others...
    I too wish I could give you a big hug...
    Love
    Linda♥️

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  10. Oh Betsy, I totally agree that there are so many things to hate about autism and so much to worry about regarding the future. Though my son is much higher functioning than your boys, that in itself brings many challenges. In fact, I sometimes find myself wishing that he was lower functioning, as crazy as that sounds. He wants so badly to have a normal life and be like everyone else. He lives somewhat independently, with a lot of support (much of it from me), but so many things regularly fall through the cracks and I feel like I spend most of my time trying to put things back together. I too worry about what will happen to him when my husband and I are gone and we really don't want our other son to be burdened with that task. I'm trying very hard to take one day at a time and trust that God has a plan...I know he does, I just have to keep reminding myself of that. You're a wonderful mom, Betsy, and I pray that God brings you serenity and worry-free days ahead. Your boys are very lucky to have you!

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    1. I can understand how you could feel that way. At least I don't have to worry about my boys being out, getting into something that would hurt them or make bad choices, etc. My guys are blissfully unaware at what they are missing out on, I do believe. And we feel the same about our other son. He's more than willing to take over when we are too old, but we absolutely hate that we even have to put him in that position. Praying for you, too....ah, serenity...I like that part. :) I cried myself into a migraine last night that hasn't gone away. Goodness...worry is seriously just painfully unproductive....lol....

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  11. Thanks for this very honest post. I know how I worry about my 3 kids, but especially my daughter with Type 1 diabetes. It's a whole different thing than autism, and only one, not 3. I love the way God sent you such a clear message, twice! He is in control, and he's got them, and you, in his hands!
    ((hugs))

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    1. Yes, a whole different thing...she can be independent, tie her own shoes, marry, drive, and even talk. But mom's worries are real no matter what, I understand that. And yeah, I loved the clear messages...they usually aren't that clear! I love them when they drop smack in your lap like that.

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  12. I have a bunch I would like to say but mostly I just want to give you a big hug across the miles.
    Taria

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  13. I've always believed that God is there when you need him, Betsy. I'm so happy that you have such a strong faith. I think we all wish we were closer just to lend a hand. Sending a hug, Deb

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  14. Oh dear Betsy ... This is not easy for you and I think we all understand that. Yet unless someone has been in the same situation, no one is able to fully know what it really is and how it feels. My aunt had a celebral palsy due to a difficult birth. I know that my grandma was having the same worries like you do - what is going to be with her, my aunt, (she was totally dependant on others) when she (grandmom) is not going to be the anymore. It is not easy to live with this thought and it is perfectly normal that sometimes, even though you trust in Him, you have these worries. It is perfectly natural Betsy to have your own downs and it is ok. And as you said, in your heart you know that everything will be all right because God has a plan for all of us. To cry your worries out is a good thing. You don't want it to stay accumulated in your body. Let it all out. God has chosen you and your family with this burden because you all are able to deal with it. And oh boy, you can be so proud of yourself!!! You do an amazing job! Sending you lots of lots of big hugs my dear friend!!!! And if you ever would need to get your worries out of your system just email me. I will always be here to listen and hopefully by doing so to help you a bit to get things out ... ❤️

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    1. Aw...you're so sweet. Thank you. Yes, it does feel good to let it out and not healthy to
      keep it bottled up. Today is a fresh day.

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  15. Thank you for sharing this today. You touched my momma's heart.

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  16. Betsy, as a single mother I can understand your feelings and your fears. Of course my "problems" are different from yours but we are all mothers and I think there's a thread that holds all of us.
    Thanks for this post and for the optimism you keep on sharing.
    xox

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    1. Yes I do agree about that thread...we are all connected that way!

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  17. Hi Betsy - thank goodness you have that practical side that can break down your 'anxiety' barriers ... and I often think of people and what will happen when their parents, or guardian move to another world: you and others can only do your best for the boys now and trust that - you both and friends and family will help and that God will provide - certainly with your help and prescient with what will be needed ... He will guide all on a safe journey ...

    With thoughts and hugs - Hilary

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    1. Yes, that is so true! Thanks, Hilary. :)

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  18. We all have pity parties, especially the strongest of us which includes you. It's a tough and scary road that I'm not even going to pretend that I know an inkling about. God reached out to you because you needed a quick mental reboot. Wishing the best for you, your boys, and your entire family. Xo

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    1. A mental reboot...oh, I love that....that is so true.

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  19. oh my gosh,, this touched to close to home for me ,
    my heart feels for you,, my husbands sisters 15 yearold daughter has Autism and will never live independently and she has the same worries ,I cannot imagine that times three, our Gracie should be able to live independently but the message that came to you today is one we should all take notice of,, life can be so hard,, I wish I could give you hug,

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    1. Oh, that Gracie makes me smile every time you post about her. :)

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  20. Bless you ! God is with you.

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  21. Betsy, I spent yesterday caring for Baylor and Elliott while Ben and Katy went to Baylor's IEP meeting at school. I was praying for them because I know it can be a hard thing, being an advocate for your child. They came home with smiles on their faces as Baylor is going to receive all the services they want for him. But as I read your post this morning, I could identify with each thing you said. My granddaughter, Kendall, asked me one day, "nana will they invent a pill that can fix Baylor's brain?" I told her that we do not know what the future holds but wouldn't that be wonderful? I will be praying for you Betsy....so glad the Lord encouraged you when you were feeling down. I hear those voices in my head regarding Baylor. Thank you for encouraging me this morning with your Mother's Heart.

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    1. Oh the IEP meetings. Ugh. haha. Ours went triple time, of course. I'm glad your family's meeting went well.

      Inventing a pill would be nice! I'm all for that. :)

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  22. This brought tears to my eyes. I felt your loss and then rejoiced in your moment with God. The comment about God not putting more on us than we can bear was one that was told to me when my first pregnancy ended in miscarriage and my second ended with my oldest being born with a major birth defect resulting in major surgery at just two days old. At first, I resented that people would say that to me, but then I realized they were just trying to help the only way they could. I believe this for you, too, Betsy. God chose an amazingly strong, positive, caring mother for three awesome boys. I do believe He has a plan for each of us and I also believe that...you may not live forever, but you will be here caring for your sweet boys until you have complete peace in your heart for their future care. I, also, like to think of the Footprints poem where God says that when you only see one set of footprints in the sand, during difficult times, is because that's when He carried you. I pray for you and your family that you remain strong, that you're comforted when it's tough and that you keep that peace....knowing that He has you and your sweet family in His hands. Thanks for sharing a piece of your heart!

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    1. Aw, thanks Laurie! I remember years ago with that Footprints poem first became popular. It's message is very poignant, isn't it?

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  23. Nothing can be more truer said Betsy. Our grandson is 7 and is Autistic, non verbal. I can relate. I know how my daughters family copes and deals. Never time for rest. They are on watch 24/7. Today my daughter is in Toronto at queens park for a rally. I'm not sure if you keep up with Canadian news but the liberal party is taking away $$$ that kids have been on a waiting list forever to get help with IBI. They feel that after the age of 5 they can no longer benefit from IBI.. That's so not right. We have living proof how our Alex has benefited from IBI .IBI Intense Behavourial Intervention.

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    1. I do agree those interventions and therapies benefit them throughout their lives. Only until 5? That's insane! How frustrating.

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  24. Has to be hard indeed
    As you always have to take stock at your feed
    Can't just go and do
    Many don't have a clue
    And many sure can be rude
    With their holier than thou attitude
    But yep, life sure isn't easy all around
    Much of it can put one in a hole in the ground
    Likes to give us many blows
    But then if it were easy, we'd all crap rainbows

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    1. I'd crap a rainbow if it had a golden pot.
      Wouldn't solve any problems but it'd make me smile a lot. hahaha...

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    2. haha would come with gold
      That can buy things I'm told

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  25. First time that a post by Betsy made me cry. Feeling some very similar feelings.....adoptive parents face some tough realities for the future too. If you are wondering why you wrote this post, I think it might have been for me. Thank you!!!!

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    1. Well, I was wondering! lol....Hope it encouraged you, Rebecca!
      You need to post on your lonely blog. :)

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    2. Ahhhh, I know, I just can't seem to get started again. Although, lately my life could use a little writing therapy so maybe..........

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    3. Yes...and we'll give you therapy comments! :) Let me know if you start again!

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  26. Incredibly well-written. And there's nothing wrong with a little "pity party" once in a while, since you always seem to pull out of it so admirably.

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    1. Well, thank you. I guess it's ok to get knocked down as long as you
      get back up. :)

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  27. Well now....cause i cant see through the tears pooling in my eyes i stub my toe on the foot stool while trying to make my way to the tissue box...which of course makes me laugh...its either laugh or cry at the pain and im already crying so why do that all over again right?? well, ya know when ya laugh and ya cant cross your legs and run to the little girls room at the same time?? yeah...THAT happened.....so pit stop to get a new pair of...well ya know....and both of the cats are looking at me....im sure they looked at each other and rolled their eyes...can cats roll their eyes?? im sure they did...they judged me...how dare...lets see who gets treats tonight!! hmmmppfff
    So, after wiping my eyes and wearing fresh you know whats its....heres a warm hug from me to you (and hopefully a bit of a laugh :-)....and thank you for the wonderful post!
    deb

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    1. Yes, you made me smile....sorry for the tears, panties and stubbed toe, though. haha....

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  28. Dear sweet Betsy, I have always wondered where you find the strength each and everyday to be the superwoman that you are. Always the upbeat lady, nurturer to an entire household of men, and when you have a few moments of down time you are happily running your cottage industries, or caring for feral cats. You are an inspiration to all of us girls who plod through life with little on our plates, compared to you. I have recently experienced autism first-hand, my daughter's new boyfriend is raising an autistic daughter on his own, after her mother abandoned her. Through my daughter's eyes, I now see how everyday life, becomes a series of scheduling, planning, anticipating, and encouraging, all so very different than a life without autism.
    You are both exemplary parents, I am in awe of your patience and nurturing skills everyday.
    Thank you for sharing your world with us.
    Hugs,
    ~Jo

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    1. Thanks so much, Jo. It is a crazy life, that is for sure. I wish your daughter and her new loved ones all the best.

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  29. I have a 67 year old first cousin who was autistic. His home was not the place that made him better but made it worse. He was and probably is so smart, but was placed in the institution at the age of 13, 1962. I cry when I think of what he was thinking when they placed him there. His father visited as often as he could but both parents now are gone. I am glad the times have changed for the better. Responsibility of the parents who stay the course is an admirable and loving act.

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    1. Oh, I do agree that care and understanding is SO much better than it was back then. I can't even imagine. My worst nightmare is having by boys go through something like that. They are actually on a waiting list for a group home but they would only go if something were to happen to the mister, me and taylor. And I pray that they never have to experience that, even if they are better than the institutions of the 60's.

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  30. Oh Betsy..thank you for being transparent enough to share this beautiful heartfelt post about LIFE in your world. So grateful God reminded you of the truth in those songs...we gotta trust Him each step of the way but it's truly understandable how overwhelmed you must feel at times. As we cheer you on we all know you are such an amazing woman who has made a good good life for your boys. We are blessed..your family is blessed...to have you a part of our worlds. May God bless you and give you peace as you consider the future for your family. You are loved much and are an amazing inspiration. ROCK ON SISTER!! XO

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    1. Thanks, Marsha....you're the best. :)

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  31. Prayers for you, Betsy. A good friend of mine has a son with Autism and what a daily struggle it is with just one. I don't know how you do it with three. You truly serve as an inspiration to those who read your blog.

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    1. Thanks, Michelle. We do pretty well with the daily struggles at this point. It's the future that seems to grip me in a scary way! Ack!

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  32. You and your family are amazing and I greatly admire you. I often think of you, Betsy. Each time you come to mind, I say a little prayer for you. I pray that God will send some small, unexpected blessing into your heart. And I pray the little blessing makes you smile and lightens your heart. On busy days, I will delete all blog posts except yours. I always, always read your posts. I am an avid Betsy fan from Georgia!

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    1. Well, aren't you sweet! Thank you so much for the encouragement...and mostly for the prayers! Boy, do I need them! Thank you for reading my posts...that really means a lot! :)

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  33. Your words express all the feelings that I have. I know the fear, the anger, and the sadness. I've never been able to put it in words so clearly. My son had muscular dystrophy and unless you have walked in these shoes others just don't know. Thanks so much, I'm a big fan of yours. Tressa in WV

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    1. Tressa, thank you so much for commenting! It's always great to know who is reading out there! You're right...others really don't know. And even explaining it doesn't give a true picture...you have to live it. Sounds like you know exactly what I'm talking about!

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  34. Worry does not empty tomorrow of its sorrow. It empties today of its strength.
    Corrie Ten Boom

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  35. Worry does not empty tomorrow of its sorrow. It empties today of its strength.
    Corrie Ten Boom

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