Wednesday, January 28, 2009

Simple Devotion~January 28th Entry


For Today...
Dear Lord,I bring you my shortcomings...my fears and my worries for my family, my children...all the things I want to do more of with them, the things I feel I am failing at..Please help me to trust that when I am weak, You are made strong in my weakness.
I bring you my worship and praise...for the beauty of Your creation. For each individual snowflake that is like no other. For the precious moments with my children...
I bring you my prayer...Lift me up out of this pit and plant my feet upon Your rock. I pray for joy.
You spoke to me...through Your word today...
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Tuesday, January 27, 2009

Blogger friend school Assignment #118 - All You Add Is Love

I found this on another blog and thought it was so cute...

Assignment #118 - All You Add Is Love (Purina Dog Chow)

Memory Verse: Psalms 127:3 (New Living Translation)
Children are a gift from the Lord; they are a reward from him.


Intro: This week we continue with shaking things up a bit. Children are often so pure in what they say. There is no sugar coating it, they just say it as they see it. Their thoughts can make us laugh, touch our hearts and open our eyes.

Assignment: This week are going to do an “Interview With Mom” and post it to your blog. There are a list of questions below to interview your children with. Feel free to add your own questions or remove any question you don’t want to use. You will then ask your children the questions and post the answers that they give you.

WHAT DOES MOM ALWAYS SAY TO YOU?
Ellie age 3~ I love you

WHAT MAKES MOM HAPPY?
Ellie age 3~ when I ask you to color with me

WHAT MAKES MOM SAD?
Ellie age 3~ I don't remember

WHAT MAKES MOM LAUGH?
Ellie age 3~ when I say funny words

HOW OLD IS MOM?
Ellie age 3~ 6

HOW TALL IS MOM?
Ellie age 3~ kind of as tall as up to daddy

WHAT DOES MOM LIKE TO DO?
Ellie age 3~ color

WHAT IS MOM’S JOB?
Ellie age 3~ helping me

WHAT IS MOM’S FAVORITE FOOD?
Ellie age 3~ spaghetti

HOW DO YOU KNOW MOM LOVES YOU?
Ellie age 3~ you always say the love you words

Monday, January 26, 2009

CAR
















Mikah is saying CAR!!! It is official. Dave and I heard him say it several times. Ellie heard him say it. My grandparents heard him say it.

I am so proud! I am so excited! What a good word for a little boy to say!

This is his Superman car that his Great Aunt Faye bought him for Christmas. I think this car is what prompted his use of the word. He LOVES this car even though Dave and I thought for sure it would be too "old" of a toy for him.



Thanks Aunt Faye!!

Mikah's other favorite cars.

The Simple Woman's Daybook



Good Monday morning friends! I am starting something new called the Simple Woman's Daybook...


FOR TODAY January 26, 2009...

Outside my window the snow is peacefully covering the grass and trees...

I am thinking how this week is another chance to start over...

I am thankful for my strong, amazing husband...

From the learning rooms I am exploring different homeschooling styles, looking mostly at Classical and Charlotte Mason right now...

From the kitchen we baked Southern Chocolate Chip cookies this weekend and I was again reminded that I need to find a yummy vegan recipe so Mikah can join in the fun...

I am wearing a comfy maroon and cream sweater ...

I am creating post-its with verses to post around the house to remind me of God's almighty power in my life...

I am going into my children's rooms after this post...

I am reading The Well-Trained Mind: A Guide to Classical Education at Home and A Charlotte Mason Companion: Personal Reflections on the Gentle Art of Learning...

I am hoping that Mikah's mask arrive today...

I am hearing the wonderful sound of silence...

Around the house the dogs are peacefully sleeping and the fire is warming the Florida room...

One of my favorite things: a cozy blanket, a good book and a mug of hot cocoa...

A few plans for the rest of the week: fill out Mikah's Home Consult forms and mail them, declutter the office and send a thank you card to my grandparents

Here is picture thought I am sharing...

We love you Gary.



~Michelle

Friday, January 23, 2009

HAPPY BIRTHDAY MIKAH!!!

At 7:30 am two years ago Mikah was born in dramatic fashion in our bedroom. Immediately it became apparent that there would be something different with this little guy. He just didn't want to start breathing as quickly as a baby should. As I watched the umbilical cord still pulsing and the midwives suctioning and bagging him it seemed surreal. As if everything was moving in slow motion and I was dreaming. Then I was jolted out of my revery by Nina, one of my midwives telling me, "He needs to know his mommy is here. Let him know you are here." Instinctively I placed my hand on his tiny chest and whispered in his ear how we much we had all been waiting for him and how we were so excited to meet him and how we loved him so much. In the few seconds it took for those words to come out of my mouth he took his first deep breath. We cut the umbilical cord and the midwives placed him on my bare chest and covered us with many warmed blankets. So began the love of snuggling Mikah and I have together.

For a long time after that and still today at times, when he wasn't breathing right or needed calmed all I had to do was place my hand on his little chest and it was as if some great peace overtook him. I think that is kind of how I feel sometimes when the world just seems to be too big for me with all the troubles and trials we have gone through the past two years, just when I feel like or do start screaming at God about how it isn't fair and I didn't sign-up for it...His peace will overtake me, as if His big hand is holding me, pulling me out of my self misery and despair. Or maybe He is just covering my mouth telling me to shut-up and get over myself :)

I received an email today from Proverbs 31 Ministries that really touched my heart deeply. I am not sure if I am allowed to copy and paste so I will leave a link. It is titled When Your Worst Fears are Realized. The author, a mom and wife, always had a fear that she would have a child with a birth defect...hmmmm...is that just a coincidence on Mikah's birthday? I never even considered or feared having a child with special needs. I think I thought that it just doesn't happen to my family...Some of you know how stupid that sounds since you know my own sister was born with a birth defect!! Hello, is anybody home in there?!?! I guess I don't consider her as having special needs anymore because God was amazingly GOOD to her. She has done everything the doctors always said she wouldn't, except ride a bike. ( Although, I bet she could if she really wanted too ) :)

When it became apparent that there was something going on with Mikah that just wasn't typical, I remember telling a friend that God couldn't do that to me because I couldn't handle it. And then we got the first tests back and they were normal. I thought, "See, God wouldn't do that to me." How foolish, I am pretty sure Solomon was talking about me when he wrote many of the verses about proud fools. We later met with genetics doctors and came to find out the previous test was just a very basic test and they had much more sophisticated tests and Yes, they were 100% positive Mikah had a genetic disorder...WHAM!! It was like a blow to the gut, even though I knew deep down that it was coming. I am not sure you can ever really be prepared for something like that. Someone telling you this child, created out of love, that you carried and took special care of and brought into this world, wasn't perfect. That he would not be capable and never should consider having his own children. That he probably wouldn't be able to go to college, might not understand high school and probably would never understand love enough to be married. I didn't bother to ask them if they thought he would be able to understand salvation.

For me one of my biggest fears is our children not being saved and not spending eternity with Jesus. Now one of my children might not understand that, which I am confident means he will spend eternity with Jesus and, yes, I am a typical human, I am upset, I want him to understand and make that decision...

It dawned on me the other day that I should never have thought this couldn't happen to me, for many different reasons, but one it that it did happen to me when I was about 9 years old. When my mom birthed my sister. Maybe not as directly or in the same way but my mom knows about all these feelings I have. She knows things I don't yet because I haven't been there. And she knows how to keep on living. She knows how it is to come out on the otherside of the valley of the shadow of death, the death of a dream of a perfect baby.

And God knows too. He is the one who created the first perfect man and watched as he became imperfect. God knows exactly how I feel and "He is who in me, IS greater than he who is in the world" trying to draw me down. I loved all the verses in the devotional today. So here goes,

"You came near when I called you, and you said, 'Do not fear.'" Lamentations 3:57

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

"Fear not, for I have redeemed you; I have summoned you by name; you are mine." Isaiah 43:1b

"After this, the word of the Lord came to Abram in a vision: Do not be afraid, Abram. I am your shield, your very great reward." Genesis 15:1

If you visit Marybeth's blog and read to the end of today's entry you will read her happy ending. Her son is twelve and God has healed him. I pray that ten years from today I can say the same thing...

Thursday, January 15, 2009

Some Mothers Get Babies with Something More

I was decluttering my saved documents and came across this article. I thought it worth sharing.

Some Mothers Get Babies with Something More
By Lori Borgman Jul 25, 2008

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want their infant to have 10 fingers and 10 toes. Mothers lie.

Every mother wants so much more. She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on Page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but a mother wants what a mother wants.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close. The doctor's words took your breath away. It was just like the time at recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled her for a well check, and crashed head first into a brick wall as you bore the brunt of devastating news. It didn't seem possible. That didn't run in your family. Could this really be happening in your lifetime?

I watch the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. They appear as specimens without flaw -- muscles, strength and coordination all working in perfect harmony. Then an athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

There's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery. Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it. Sometimes you mothers scare me. How you lift that kid in and out of the wheelchair 20 times a day. How you monitor tests, track medications and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clich├ęs and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy columns like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling, "Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a woman I pass at church and my sister-in-law. You're a wonder.

Lori Borgman is a columnist, author and speaker. You can visit her at www.loriborgman.com.

This article was reprinted with Ms. Borgman’s permission

Tuesday, January 13, 2009

Moving Forward

Here is a video I just shot of Mikah moving down his ramp. I hope it comes out okay as our camera wasn't really made for videos...

video


Here are some other of my favorite recent pictures. Cuddle time!

Ellie's new guitar


Look at me!



Too cute!!!




Our precious boy.






Next Steps



It has been so long since I posted. We have been so busy and yet sometimes I feel like we have not gotten much done. That must be the perfectionist in me.

Mikah is doing amazing! I will attempt to get a picture into this posting. I am not the most computer savvy so hopefully I can figure it out:) Ellie has been telling everyone that Mikah will walk when he is 2 y.o. Well, I am not sure that will happen since his birthday is this month on the 23rd but miracles do happen everyday. He is moving forward though and that is great. I also want to try to post a video of him going down his ramp. He has been using his legs in a crawling motion and he zooms down.




We are taking this week off from patterning to take time to recover from mommy and Ellie being sick and we are adding in a couple components to his home program. We started a reading program yesterday. This is for both Ellie and Mikah. When I brought out the cards and started going through them with him he became very excited! It was so wonderful to see him enjoying himself.
We are also starting an Oxygen enrichment program this week called masking. This will allow more oxygen to reach his brain and also help to expand his lungs and make his breathing better. His pediatrician is very excited about this part of the program and we found out he has been spreading the word about Mikah's program and all the progress he is making. Everytime we walk into his office he goes on and on about what a different child Mikah is each time he seems him.



Mikah is doing fabulous on the blended diet and seems to be really thriving for the first time in his life on real food. It is a vegan diet with lots of veggies! He has also been occassionally asking for food to eat orally. And if we don't figure out what it is that he is trying to tell us, he becomes very upset! The reading program should help with our communication too. We are going to create Choice Boards. Today we are actually going to start learning some of our "choice" words. Yes, No, Eat, Ouch, Play, Done, More, Maybe, Other...



I was creating all the reading cards and lists of words and I found myself getting really excited! There are so many words I want to teach them! We have always loved to read and it is such a joy to be able to share that with our children especially Mikah. We may not be able to share a walk in the park or watching him go down a slide or chase his sister right now but I can share with him the experience and joy and fun of reading. It fills my heart with joy.



I am so anxious to go back to the Institutes. I want to learn so much more about how to help Mikah and I desperately want their insight and guidance and encouragement for the programs we are doing with him. Another couple that was in the class with us in June described going back as a "breath of fresh air". And I believe them. It was a breath of fresh air just to read their post on their blog about their visit.



I am actually going to be calling the Institutes today and talking to them about setting up a Home Program consultation. This is where we do an extensive phone "interview" with them about where Mikah is, what we have been doing with him and what we should be doing with him. It is the next best thing to taking him to the Institutes. Afterwards, we work on our new program for three months and then call them back and let them know what we have done and where Mikah is and they will let us know if he is accepted into their Intensive treatment program. If he is then we get to take him to the Institutes and over 3 days they meet with us and Mikah and evaluate him and create an even more specific program for him. Dave and I would also receive 2 days of "continuing education" in the form of intensive lectures. We are excited about the next lecture series as they discuss even more about brain injured children, nutrition, masking and intelligence programs.



Frequently I think there is so much more I should have been doing with Mikah. It seems like June was so long ago and I have been reviewing our notes from the Institutes and realizing there are many things we are not doing quite right or that I just plan forgot. I am also continually trying to remind myself how much he has improved. When we took the class at the Institutes he couldn't even lift his head and was pretty much like Ellie's Raggedy Ann doll, floppy and limp. He was constantly sick and vomiting and refluxing and not sleeping well. He was gaining less than a pound a month. Now he is holding his head while on his belly, he supports himself, he doesn't get sick nearly as often and vomiting is rare. His relfux is improving and for a while he was able to be completely off his reflux meds. He is also sleeping. Most of the time :) And since we started his blended diet he is gaining OVER a pound each month! He is also MUCH stronger as his patterners will tell you :)



He may not have progressed developmentally as much as mommy was hoping but his health has improved by leaps and bounds. With this New Year I am hoping and praying that he learns to read, learns to eat a little more and that he WILL be walking by his 3rd birthday. That next Christmas he will be tearing around the house trying to pull all the ornaments off the tree. I pray for faith like Ellie's to be able to believe that he will be walking on his 2nd birthday. These are my hopes and dreams for my little boy.