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6/30/15
11/24/13
Saying Yes
(a little note... there are two, yes two, videos in this post... both very short, but both ohhhh so worth watching!)
Why is saying yes so hard sometimes?
*Mom, can I have dessert?*
No.
*Can I have a friend over?*
No.
*Can I jump in the mud puddles?*
No.
Granted, we have our reasons for saying no, right?! I mean, mud muddles?! ohhh the mess that follows!
Sometimes we need to be the one asking the question though... "Can I say yes?" "Why am I saying no?"
I said yes today and will never regret it. Although the bathtub is still needing some attention but I wanted to write this instead of ending my day scrubbing it. (saying yes to this and no to that... balance I tell ya! lol!)
I'd been running errands all morning and knew I had to get groceries unloaded, bake a batch of gluten free bread for Stacey, make dinner, spray some creepy blue stuff on the chickens so they will stop picking at each other and who knows what else was on my mental list.
Anyway... am I the only one who tries to carry every. single. bag in from the car all. at. once?
Well no sooner did I deposit my load on the kitchen floor did Stacey accidentally drop my half full Dr Pepper on the floor. (booo!) While I picked up the cup, she grabbed the mop. I reached out for it and she said "Meee?"
And I said it.
"Yes." "Yes, you can mop for me"
And I watched her basically spread soda and ice all over the kitchen floor.
0_0
She suddenly took off outside with my soda coated mop and started pushing the leaves around the porch! OH good grief! Eww wet leaves are stickyyyyy!
She then drops the mop and promptly lays down in the leaves and made a "Leaf angel"
This was a much harder "yes" because the leaves would soon be everywhere requiring a bath which is not an easy adventure with her...
See her angel wings brushed on the cement?! I wish I'd caught her doing it on video!
I was right.... leaves everywherrrrrreeeee!!!
And that yes, turned into this...
I'm so glad I said *yes* to the mopping... which led to yes about the leaves, so I could hear this!!! And you know what, I lived through the bath, the cleaning the tub, the leaves in my own shirt, and the to-do list that got pushed to the next day. That moment is now over. I'm so glad I didn't miss it because I had *things to do*.
What did you say *Yes* to today? And think about this.... how has God said "yes" to you? :)
Why is saying yes so hard sometimes?
*Mom, can I have dessert?*
No.
*Can I have a friend over?*
No.
*Can I jump in the mud puddles?*
No.
Granted, we have our reasons for saying no, right?! I mean, mud muddles?! ohhh the mess that follows!
Sometimes we need to be the one asking the question though... "Can I say yes?" "Why am I saying no?"
I said yes today and will never regret it. Although the bathtub is still needing some attention but I wanted to write this instead of ending my day scrubbing it. (saying yes to this and no to that... balance I tell ya! lol!)
I'd been running errands all morning and knew I had to get groceries unloaded, bake a batch of gluten free bread for Stacey, make dinner, spray some creepy blue stuff on the chickens so they will stop picking at each other and who knows what else was on my mental list.
Anyway... am I the only one who tries to carry every. single. bag in from the car all. at. once?
Well no sooner did I deposit my load on the kitchen floor did Stacey accidentally drop my half full Dr Pepper on the floor. (booo!) While I picked up the cup, she grabbed the mop. I reached out for it and she said "Meee?"
And I said it.
"Yes." "Yes, you can mop for me"
And I watched her basically spread soda and ice all over the kitchen floor.
0_0
She suddenly took off outside with my soda coated mop and started pushing the leaves around the porch! OH good grief! Eww wet leaves are stickyyyyy!
She then drops the mop and promptly lays down in the leaves and made a "Leaf angel"
This was a much harder "yes" because the leaves would soon be everywhere requiring a bath which is not an easy adventure with her...
I was right.... leaves everywherrrrrreeeee!!!
And the best part... was hearing her say this:
What did you say *Yes* to today? And think about this.... how has God said "yes" to you? :)
11/3/13
#13 The Elevator
The elevator. It's my refuge. I'd ride it to the top, to the bottom, and back again. I'd go down to the other wing and step in that one. No one on that end knew me. It didn't matter to me if it was full or empty. I couldn't hear any beeping machines or the hiss of oxygen. I couldn't hear children crying or parents weeping. Sometimes if I was by myself I'd have me a little out-loud chat with Jesus. It usually went like this: "I know you can heal her. Just do it already!" The end.
Leaving the elevator was emotionally exhausting... every time I'd return to the floor, it was a reminder of what our reality had become. The morning after they found the pneumonia, I returned to find my baby girl wasn't in her bed in the Critical Care Unit. I literally felt my heart stop beating. I couldn't breathe. The sounds of the room swirled around my head.
A hand on my shoulder.
"Are you looking for Stacey?" I could only nod because my throat was in a vice grip of panic.
Because her pneumonia was so bad and they didn't know the source, they had to put her in isolation. She'd been moved. Tears of relief!
We were now in our own room, but the door had to stay closed and anyone who entered or left, had to scrub, gown up and use gloves and a mask. We also had to scrub up right outside her door before we left. It made
even going to the bathroom a project! It was
quiet, but it was lonely.
I requested a rocking chair and decided to make the best of our 7 day stay, knowing we would then go home and resume life as we knew it....
Or so we thought.
Because her pneumonia was so bad and they didn't know the source, they had to put her in isolation. She'd been moved. Tears of relief!
We were now in our own room, but the door had to stay closed and anyone who entered or left, had to scrub, gown up and use gloves and a mask. We also had to scrub up right outside her door before we left. It made
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| My Auntie and a favorite nurse |
I requested a rocking chair and decided to make the best of our 7 day stay, knowing we would then go home and resume life as we knew it....
Or so we thought.
10/24/13
Is 4 minutes too much for you?
Watch this. The red wagon, the IV poles, the face masks, the play room, the sad faces and the laughter. It's all familiar. We've been there.
Some people say "Oh, I cant watch that, it makes me too sad." To that I say this: it made me sad too. To be there. To live it. It makes my heart break for those who spend months and years there, some never to go home. So please, watch this. It's a few minutes of your day and you get to scoot right back to your busy life. Pause for these families. Pause and be made aware, if only for a moment at what their life might be like. I think you'll see, that by being forced to make the best of it, we have a lot of fun. :)
Some people say "Oh, I cant watch that, it makes me too sad." To that I say this: it made me sad too. To be there. To live it. It makes my heart break for those who spend months and years there, some never to go home. So please, watch this. It's a few minutes of your day and you get to scoot right back to your busy life. Pause for these families. Pause and be made aware, if only for a moment at what their life might be like. I think you'll see, that by being forced to make the best of it, we have a lot of fun. :)
9/24/13
Love is the how
I change the batteries in countless noisy toys.
I wonder why on earth I keep doing that.
I watch her eat and tell her to take smaller bites.
I gross out at the backwash in her drinks.
I snuggle her.
When she wants me to carry her 70 pound self like a toddler,
I sit down and snuggle her again.
I hide meds in food.
I wonder what she'd be like drug free.
I laugh (sometimes too hard) when she tries to copy her siblings.
Sometimes we copy her. She laughs way too hard.
I change her diaper, dress her and
fight her to fix her hair and brush her teeth.
I consider shaving her head.
I get annoyed by hearing her incesently say mom.
I remember waiting eleven years for her to say it at all.
I sit next to her on the potty trying to will her to do more than sit on it.
I worry about puberty.
I go to therapy, do therapy and research therapy.
Sometimes I think I need therapy.
When she wakes up in the middle of the night for reasons I can't identify,
I snuggle next to her.
I pray for her.
I read to her,
color with her
and walk with her.
I remind her to watch her step,
to stop picking at her shirt,
to use a quiet voice.
I watch her navigate the wii.
I decide she's a closet genius when she finds the exact scene she's looking for on netflix.
I use a chipper voice and ask her to "be my helper" so she'll pick up her toys.
I use the same chipper voice with the family and get laughed at.
I conjure up ways to keep her pajamas on at night.
I wonder why she can figure my tricks out but not write her name.
I wash her bedding every morning because her diaper leaks every night.
I day dream of a self cleaning bed and automatic sheet changer.
I worry about her future.
I pray for those who will someday care for her.
I try to find a place for her, to help her fit in.
I sometimes wonder where I fit in.
I admire her lack of concern of social standing.
I get teary when I see her siblings love on her.
I get angry when someone is unkind to her.
I see the stares, hear the whispers.
I'm thankful for the knowing smiles, the kind words.
I love her.
And then I love her some more.
You see, when it comes down to it, it's just like any other mom and child. Love is not the feeling, love is the how. It's how we keep waking up and doing it all over again.
I Corinthians 13:7 Love...
"It always protects, always trusts, always hopes, always perseveres."
9/23/13
Why do you ask?
Why do you ask?
Really, I'd like to know. Help me out here.
If I say yes, are you going to think I'm some sort of hero?
If I say no will you feel sorry that I didn't have a choice?
I mean really, when you ask, I have a few assumptions as to why, but that's not fair to you. So here's your chance to help me.
So tell me, why do you ask "Did you know before she was born?"
Sometimes the response you give when I say "No, we found out at 3 months old" makes me want to throat punch you. For reals.
If I hear one more time these whoppers that yes, I've heard multiple times... "oh that's too bad", or "what a disappointment", or "Sometimes mother nature really messes up" or "thank goodness you have 4 normal kids to help out".... you best be putting a throat guard up.
Here's the deal...
I wouldn't be a hero for loving, and keeping, my baby, my daughter, if I'd found out before she was born. I'd be her mom willing to give her the same chance at life I gave my others, and my own birth mother gave me, and your mother gave you. Nothing heroic about loving our kids.
I haven't earned any need for pity for being surprised after she was born. The way I look at it is this: It could be any of my kids! Any one of them could, at any age in life, suffer a head injury that leaves them with physical and cognitive challenges. And so could yours. Would you change anything? Regret that they were born? That's silly! Of course not! You'd grieve, adjust, adapt, and move forward. It might be messy and painful, but it would still be a mom loving her child.
Well those who know me; know I'd rather use those moments to educate; and not on what happens when your esophagus gets flattened... so be prepared for a download of what a life changing experience Stacey has been, and how you really really should be jealous. Jealous that I get front row seats to daily miracles, 4 other kids with compassion up the wazoo, unconditional love and acceptance, daily lessons in humility and grace, a network of friends and connections I'd otherwise never have and the ability to see Joy in the little things that others aren't privy to. Not to mention, I get to experience God's mercies be new every morning, and His peace that passes understanding.
So, it's okay to ask, but please, save us both from the assumptions and say "when did you find out" instead. Then I know you're curious and I won't have to throat punch you. :)
Psalms 139: 13-16
For you created my inmost being;
you knit me together in my mother’s womb.
For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made,
your works are wonderful, I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
your works are wonderful, I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
9/21/13
Hands and Feet go both ways.
I was trying to convey some of my background and had a hard time doing so. I thought this letter format would help. A letter "to me", from "Reflections of my past"....
Dear Stacey's mom,
I've watched you for a while now. Since you were in elementary school actually. Remember your neighbor Suzanne down the street that had special needs? You never did learn what her story was, but you knew she was different. You played with her in a big box from a new fridge. She thought she was a lion. She would even answer you in roars. You invited her over to swim and her mom was so excited because she'd never been invited anywhere before. She peed in the pool and then told you. You just told her to let you know next time and you'd help her use the bathroom instead. You were totally grossed out but you just suggested hopscotch as the next activity.
I saw you love her unconditionally, even though you didn't understand her behavior.
Remember Lisa in Jr. High? She walked with a very difficult gait. She was slow moving and was often left behind. She was very smart but her body just didn't work right. You thought she'd enjoy a movie and had your mom take you both to see Annie. You learned Lisa could really sing and had a passion for it.
You showed her acceptance at a very difficult stage in life.
You've always loved Disneyland and I saw you take a group of disabled adults when you were in high school. Your small hundred pound frame pushed a grown man with cerebral palsy around in his wheelchair all day. You wiped his drool when he got so excited. You didn't flinch when he insisted on a huge cheeseburger that you had to feed him one bite at a time. I saw you quietly eat your cold burger when he was finally done with his.
You gave him so much joy!
I saw you skip lunch with friends so you could check out Joni Eareckson Tada's new van. I watched you skip youth group to work in the class for adults with special needs at church.
I saw you feel at home there.
When you moved to the Antelope Valley and looked for work, you were drawn to Desert Haven. They were very concerned with your (lack of) education in the field. In the interview you told the head of your department that you had hands-on education and felt nothing like that could be gained from a textbook. She gave you a chance and you became one of their best job coaches. You were a natural with the consumers there and loved the atmosphere.
Looking back over your life, I can see how God was preparing you to be Stacey's mom. Even the day you received the news and your world as a mom was up-heaved, and you were afraid; you didn't doubt your ability to be her mom. You knew God would bring people into your life to walk the road with you, just as He had placed you in the lives of others.
I know it hasn't been easy, and I know you have seasons of ups and downs, but I know you see the blessings and I know you feel blessed to be her Mom.
Sincerely,
Reflections from your past
****This song is a favorite of mine. It is exactly how I feel when others step up to help with Stacey and love on her. Even those who don't share my faith can be used by Him and I'm honored to receive the gift He gives through the hands and feet, and time and love, of those He puts in my path.
Dear Stacey's mom,
I've watched you for a while now. Since you were in elementary school actually. Remember your neighbor Suzanne down the street that had special needs? You never did learn what her story was, but you knew she was different. You played with her in a big box from a new fridge. She thought she was a lion. She would even answer you in roars. You invited her over to swim and her mom was so excited because she'd never been invited anywhere before. She peed in the pool and then told you. You just told her to let you know next time and you'd help her use the bathroom instead. You were totally grossed out but you just suggested hopscotch as the next activity.
I saw you love her unconditionally, even though you didn't understand her behavior.
Remember Lisa in Jr. High? She walked with a very difficult gait. She was slow moving and was often left behind. She was very smart but her body just didn't work right. You thought she'd enjoy a movie and had your mom take you both to see Annie. You learned Lisa could really sing and had a passion for it.
You showed her acceptance at a very difficult stage in life.
You've always loved Disneyland and I saw you take a group of disabled adults when you were in high school. Your small hundred pound frame pushed a grown man with cerebral palsy around in his wheelchair all day. You wiped his drool when he got so excited. You didn't flinch when he insisted on a huge cheeseburger that you had to feed him one bite at a time. I saw you quietly eat your cold burger when he was finally done with his.
You gave him so much joy!
I saw you skip lunch with friends so you could check out Joni Eareckson Tada's new van. I watched you skip youth group to work in the class for adults with special needs at church.
I saw you feel at home there.
When you moved to the Antelope Valley and looked for work, you were drawn to Desert Haven. They were very concerned with your (lack of) education in the field. In the interview you told the head of your department that you had hands-on education and felt nothing like that could be gained from a textbook. She gave you a chance and you became one of their best job coaches. You were a natural with the consumers there and loved the atmosphere.
Looking back over your life, I can see how God was preparing you to be Stacey's mom. Even the day you received the news and your world as a mom was up-heaved, and you were afraid; you didn't doubt your ability to be her mom. You knew God would bring people into your life to walk the road with you, just as He had placed you in the lives of others.
I know it hasn't been easy, and I know you have seasons of ups and downs, but I know you see the blessings and I know you feel blessed to be her Mom.
Sincerely,
Reflections from your past
****This song is a favorite of mine. It is exactly how I feel when others step up to help with Stacey and love on her. Even those who don't share my faith can be used by Him and I'm honored to receive the gift He gives through the hands and feet, and time and love, of those He puts in my path.
Is there something in your life that you can now see God had prepared you for?
9/15/13
Happy tears and Fun Life!
We all know the number one question of homeschoolers.... all together now..... "What about socialization?!?!" I think we've got it covered, between church activities and sports. However, we do know when we need more, and this is a perfect example of God answering a prayer before I even knew to pray it.
Before I had even decided for sure about home schooling Stacey, a client (now friend) of mine mentioned a group called Fun Life. It's a branch of the non-denominational organization called Young Life just for high-schoolers with special needs.
We took her Friday night and let me tell you... I was near tears the whole time! I could tell she knew she fit in there. Sure, she's welcome at our church and our friends love her, but never before has she gone to an event and left with an invitation to a small group girls Bible study! Never has anyone asked for my cell number so they can invite her to parties and outings. Not a family thing that she's "welcome to attend too", but an invitation extended to her specifically. *happy tears*
Fun
Life meets every other Friday night. They have Pizza, sing and dance,
skits, a Bible lesson and this week Stacey was in the ice cream eating
contest! They gave her noise buffering headphones since it was so loud and she was covering one ear. She sat with a leader and never looked back! I was so proud of
her! She has been looking at the pictures on my phone every day and
asking to go back!
I'm so excited for the independence this group will help her achieve. Next time we plan to drop her off and let her do her thing without being her paparazzi! haha!
One
of the things I noticed that showed me she knew she belonged was her
voice. Even in settings with people she knows well, she will whisper or
look away and not answer when they talk to her. At Fun Life, several
times I heard her say "Hi" and "Yes" to greetings and offers of pizza or
drink. She spoke loud and confident. I have never seen her do that to
people she has just met. Never. Until now. In her comfort zone. Again
with the happy tears. :)
Another
amazing change that night, was her behavior afterwards. We went to
Starbucks and sat on the patio. A young man said hello to her and she
actually said Hi nice and loud. He asked: "How are you?" and she said
"Good." Then he asked "Is that your juice box?" She smiled and said
"yes" nice and loud and showed it to him. I was dying!! She just had a conversation with a stranger!! (we'll work on stranger danger another time. lol)
Oh, and don't think for a minute that the humor of her chillaxin at Starbucks with a juice-box was missed in all that! Oh my sweet girl! :)
Looking forward to seeing her grow and be involved in a life that she calls her own, not just tagging along with us. Ohhh how I wish she could commmunicate her thoughts about all this, but very thankful her behavior is speaking so clearly!
Before I had even decided for sure about home schooling Stacey, a client (now friend) of mine mentioned a group called Fun Life. It's a branch of the non-denominational organization called Young Life just for high-schoolers with special needs.
We took her Friday night and let me tell you... I was near tears the whole time! I could tell she knew she fit in there. Sure, she's welcome at our church and our friends love her, but never before has she gone to an event and left with an invitation to a small group girls Bible study! Never has anyone asked for my cell number so they can invite her to parties and outings. Not a family thing that she's "welcome to attend too", but an invitation extended to her specifically. *happy tears*
I'm so excited for the independence this group will help her achieve. Next time we plan to drop her off and let her do her thing without being her paparazzi! haha!
One
of the things I noticed that showed me she knew she belonged was her
voice. Even in settings with people she knows well, she will whisper or
look away and not answer when they talk to her. At Fun Life, several
times I heard her say "Hi" and "Yes" to greetings and offers of pizza or
drink. She spoke loud and confident. I have never seen her do that to
people she has just met. Never. Until now. In her comfort zone. Again
with the happy tears. :) Oh, and don't think for a minute that the humor of her chillaxin at Starbucks with a juice-box was missed in all that! Oh my sweet girl! :)
Looking forward to seeing her grow and be involved in a life that she calls her own, not just tagging along with us. Ohhh how I wish she could commmunicate her thoughts about all this, but very thankful her behavior is speaking so clearly!
9/14/13
The high-school dilemma
This is either the most sane, or the most insane decision we've ever made!
We decided to home-school Stacey for 9th grade!
I can't possibly tell you the entire process of this decision. It took us over a year to commit to it!
A few of the deal makers (or breakers depending on where you sit) were things like the classroom layout. Some were so crowded, some were boring and clinical, others were smelly and depressing.
Since she is still in diapers the set-up for that was super important. Seriously, do YOU want to be changed or sit on that toilet? Do you see that grime??? That was AFTER I mentioned it and returned a month later to see the "improved" area. UHM.... The counter was slimy, the toilet... ew. No paper for the changing table... the lady said she "thinks they have a disinfectant spray". Uhm. ok, you let me spray a toxin for you to lay your naked butt in... yaaa. NO.
Oh, and did I mention there is no window, and it takes a key to get in and they don't run the AC or heater in there?! So what happens if she has an emergency in there? And, where is the accountability to the person who takes her in that private room. She's non-verbal. Get it?
OK breathe Shannon. Breeeeaaathhhh. oi.
Aside from that, I spoke to other parents and few are happy. Then I spoke to regular ed students and several mentioned things about the special ed program that concerned me. One student told me that they pick up trash on the quad after the regular ed lunch break. Holy smokes my girl isn't going to pick up after them in the name of "work experience"! I also heard from many kids that there isn't a special ed class on their campus... sooo are they integrating or being hid? Some campus' have the special ed class in theeee farthest corner, away from it all. hm... no thank you.
The clincher for me was when I spoke to the CEO of a company in our community that places adults with special needs in jobs and work crews around the community. She explained to me how the young adults coming from the high school program are greatly lacking in the necessary skills and behaviors to do the work.
Well there ya have it. She needs to be prepared for the future. If the school isn't doing it for others, I feel it would be foolish to expect that they would for her.
I'm not new to home schooling. I've graduated two already and have two more still home. I've been at it for 16 years. I've technically been teaching Stacey her whole life and feel confident I know her best.
Am I scared? YEP! But I'd worry if I wasn't! The fear of failing her weighs heavy. It's a great motivator!
The biggest hurdle for this is financial. Buying materials, paying for the neuro-development program, funding field trips, special supplies and tools, and hired help so I don't go completely crazy adds up. Breathe.... God is able.
"God doesn't call the able, he enables the called."
Joni Eareckson Tada
We decided to home-school Stacey for 9th grade!
I can't possibly tell you the entire process of this decision. It took us over a year to commit to it!
A few of the deal makers (or breakers depending on where you sit) were things like the classroom layout. Some were so crowded, some were boring and clinical, others were smelly and depressing.
Since she is still in diapers the set-up for that was super important. Seriously, do YOU want to be changed or sit on that toilet? Do you see that grime??? That was AFTER I mentioned it and returned a month later to see the "improved" area. UHM.... The counter was slimy, the toilet... ew. No paper for the changing table... the lady said she "thinks they have a disinfectant spray". Uhm. ok, you let me spray a toxin for you to lay your naked butt in... yaaa. NO.
Oh, and did I mention there is no window, and it takes a key to get in and they don't run the AC or heater in there?! So what happens if she has an emergency in there? And, where is the accountability to the person who takes her in that private room. She's non-verbal. Get it?
OK breathe Shannon. Breeeeaaathhhh. oi.
Aside from that, I spoke to other parents and few are happy. Then I spoke to regular ed students and several mentioned things about the special ed program that concerned me. One student told me that they pick up trash on the quad after the regular ed lunch break. Holy smokes my girl isn't going to pick up after them in the name of "work experience"! I also heard from many kids that there isn't a special ed class on their campus... sooo are they integrating or being hid? Some campus' have the special ed class in theeee farthest corner, away from it all. hm... no thank you.
 | |
| Learning at home! Don't mind the wild hair! That's the result of her grumpy gills attitude! She thinks taking her hair bows out will scare her teacher away! haha!! |
Well there ya have it. She needs to be prepared for the future. If the school isn't doing it for others, I feel it would be foolish to expect that they would for her.
I'm not new to home schooling. I've graduated two already and have two more still home. I've been at it for 16 years. I've technically been teaching Stacey her whole life and feel confident I know her best.
Am I scared? YEP! But I'd worry if I wasn't! The fear of failing her weighs heavy. It's a great motivator!
The biggest hurdle for this is financial. Buying materials, paying for the neuro-development program, funding field trips, special supplies and tools, and hired help so I don't go completely crazy adds up. Breathe.... God is able.
"God doesn't call the able, he enables the called."
Joni Eareckson Tada
9/12/13
gimme some lead!
 |
| Looky what I got!! |
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| She fell asleep with them so I put them in a cup by her bed. In the morning I found her like this! |
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| Pure joy! |
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