Wednesday, December 31, 2008

Not normal

Lauren's Cat Scan came back not normal. I new for quite a few hours that it was not normal until I got official confirmation that it was not normal. It started in the morning when I called for the results and the nurse called me back. She said she would have the doctor call back. Usually, when everything is AOK, the nurse just tells you that on the phone or sends you a lovely form letter. My radar had gone up.

Then, during the ten minutes that I was at lunch, the doctor calls (doctors never call to say "hey, how you doing") and leaves a message saying that he was going to call my husband to discuss the results with him. There is no more frightening term in the English language then that. Your mind suddenly goes places where you don't want it to go.

Bob calls and the doctor leaves clinic to tell him that he thinks that Lauren has a cholesteatoma. It is a cyst that is basically made up of cholesterol and it sitting and putting pressure on her ear drum. This really could account for her balance problems. Surprisingly or unsurprisingly, which ever way you want to look at it, this thing is not in the place where if she is going to have one, it should be. I guess they didn't know that Lauren has never read a medical textbook.

They are going to schedule her for a MRI sometime in February. They had an opeing on January 7th at 5:00pm but you have to fast for 8 hours prior to the study. Bob nixed that idea quickly. They need more detailed pictures to see what it really is and where exactly it is. I need to get her MRI from last year so they have a comparison point. She might have surgery, she might not. It just depends on if the proposed benefits outweight the risks. If it improves her balance, I'm all for it.

In other news, her doctor's appointment was uneventful. They could rule out a certain metabolic disorder simply by looking at her. She does not have the facial features that are very obvious in that type of disorder. That disorder causes extreme chewing on fingers were kids can actually gnaw off their fingers. She's not doing that.

We discussed things and basically there are no answers. He suggested taking her to a dentist as she does appear to have some cavities. However, I just don't have the money for that right now. Most dentists are unwillig to take payment plans and want the money up front. We have no dental insurance right now but in September my plan will cover 100%. It will just have to wait until then.

The doctor apologized to me and said that he wished he could give me a solution or an answer. He wished there was a fix for this or a pill he could give her to make it all better. Sometimes there just aren't any pills and there aren't any easy fixes. I've come to learn that that's OK. I'm no longer looking for an answer or an easy solution. I've come to accept Lauren for who she is and what she can do. I strive to teach her to do more. I'm also trying to get her to change certain behaviors without changing who she is because I am all to aware that the world is not going to be ask accepting as we are.

The world is not going to allow her to be hyperactive. The world is not going to listen to her ramble on and on with loose associatons that no one can follow. The world will look at her strangely when she busts out with her hip-hop dance in the middle of the restaraunt. The world backs away when she tries to talk to you nose to nose. The world looks at me as a bad parent because I am powerless to stop this and sometimes don't even try. It's a good thing that I don't care about what the world thinks anymore.

Tuesday, December 30, 2008

Off to look for Zebras

There is an old theory in medicine that when you hear hoof beats you look for horses not zebras. More likely then not the hoof beats are going to be caused by horses and rarely zebras. In medicine, they assume a cough is from a cold and not some rare disease becuase it probably is just a cold. They think spots are problably chicken pox and not some rare skin disease.

It works for typically developing kids. However, Lauren is not. She's already riding on a zebra, not on a horse. Since we are starting out with something abnormal, when I call the doctor to inquire about her obsessive chewing I don't get a statement of "just try to distract her". I get a "let's bring her in IMMEDIATELY. It could be a metabolic problem."

As soon as I heard the word metabolic, I jumped to blood test. As soon as I thought blood test, I jumped to Cat Scan. As soon as I thought Cat Scan, I jumped to blown veins. As soon as I thought of blown veins, I thought of last week. As soon as I remembered last week, I thought this is not going to be good.

I've called her neurologist. I remembered that they did a whole bizarre syndrome work up (obviously not the medical term for it but they looked for every bizarre syndrome under the sun and found nothing) over a year ago. I'm sure that must have included something metabolic. Hopefully, the nurse can fax something to put her family doctor's mind at ease.

Otherwise, after the appointment, we'll be headed to the lab at Children's. They are getting pretty fond of us. I've nixed the doctor drawing blood due to a recent bad results of gettting a vein. Lauren makes pretty strong assoications with events and I don't want her to make that type of assoication at her family doctor. I'd rather save that for the speicalist.

Monday, December 29, 2008

Stop the chewing!!

Lauren, I love you baby girl. But please, please, please stop chewing things. I would love to have things without teeth marks. I would love for the toys that I got you for Christmas to be sans teeth marks. I loved the computer Grandma and Grandpa got you. It doesn't work because of your obsessive chewing behavior.

Lauren, I love you but please stop chewing things!

Thursday, December 25, 2008

Christmas fun

Ellie thought her best present was a hat, scarf, and glove set.

Shannon was not feeling good on Christmas but loved this hat.

A fancy Nancy game, Just what I always wanted!

Lauren opens presents.

Wednesday, December 24, 2008

A Cat Scan for Christmas

Lauren and I got to spend much of Christmas Eve Day at the hospital. She was scheduled for a sedated Cat Scan of her inner ears due to the balance problems she has. I will be shocked if they find anything wrong. When you are very impulsive and you don't think before you do anything, you fall alot.

The procedure was 5 minutes long. It was everything leading up to the Cat scan that was a big ordea. I knew there was no way in this univerese that she would be able to lay still in a big scary machine to get an accurate picture. I mean it's taking us two years for her to be able to get her blood pressure taken. She would have flipped out at the looks of the machine.

So, Lauren was the lucky winner of some sedation which has to be done through an IV. Did I mention Lauren hates needles? Did I mention she has had her blood drawn plenty? And had a lot of crazy procedures? Did I mention she is strong? Really, really strong?

Enter 4 nurses and mommy. It should have gone fine. I mean we have never had a problem with finding a vein. Why start now? Well, I guess Lauren figured that Christmas Eve day was as good as time of any. It took 4 sticks and an IV team to get an IV in. She has the bruises to prove it. I have the hearing loss to prove it as well.

After it was over and she was still out for the count, I had teh pleasure of rocking my 55 lb 5 year old. My big tough kidnergarten slept in my arms for over an hour as we rocked back and forth. I whispered to her how I much I love her and how she has changed my world. I whispered that while I didn't know what I was doing with her, God surely does. I told her that God has big plans for her life.

We just went on and on like that for a while. Then, some other kid got to come in for a sedated Cat scan and we got kicked out to MRI recovery. She eventually woke up after they washed her with cold water. I took her home and spent the next 4 hours curled up in a little ball.

I couldn't have asked for a better Christmas present.

Monday, December 22, 2008

Our year in Numbers

Miles moved-110
Boxes left to unpack- 7
New jobs started- 2
Kids in school- 2
Kids at home- 1
Months Shannon has been known as the baby- 18 and counting!
Trips to North Carolina- 1
Weddings attended- 1
New Family members we've acquired this year (by marriage) 1
New words learned by Shannon- 30
Letters Lauren can identify- 26 (15 upper case and 11 lower case)
Numbers of girl scouts in Lauren's Daisy troop- 7
Numbers of parties we 've gone to in our new neighborhood- 2
Times Lauren has said "Go Bucks"- 237
Times Ellie has worn her ballet skirt to bed- 329
Days Ellie has worn a dress this year- 342
Days we spent at the pool this summer- 52
Hours Bob and Kristin spent pushing kids in the swings- too numberous to count
Books we've read this year- 1052
Times we've seen a Barbie Princess movie- 239
Stitches received- 3 (by Shannon)
Urgent care trips- 4
Ambulance rides- 1
Broken bones- 1 (but in two places)
Number of football games watched according to Bob- not enough
Number of football games watched according to Kristin- way too many
Days we are thankful for what the Lord has given us- 365

Sunday, December 21, 2008

It is finished

Christmas shopping that is. I strive every year to keep things simple and practical. We decided that we would get each kid three presents to represent the gifts that were given on that very first Christmas. One is always a book, one is usually an outfit and one is a toy.

This year Shannon is getting bristle blocks (yes, they still make them), Ellie is getting an Easel, and Lauren is getting a Tag reading system that we hope they like.

I finished with the stocking stuffers on Saturday. They get an ornament, a tooth brush, a hat and glove set, and a my little pony (from McDonald's that I had to eat three Happy Meals for).

We try to keep things simple so we can concentrate on why we celebrate Christmas: God became one of us.

Saturday, December 20, 2008

Melatonin Overdose

Shannon overdosed on Melatonin the other day. The girls got into a bottle of Melatonin while Bob was taking a shower. It's a pretty harmless supplement and causes no ill effects except making you tired. Poison Control said we had nothing to worry about. She had a good sleep for two hours like this.

Friday, December 19, 2008

Last Day of school for the year

Lauren is marching off for her Christmas party today. She has 7, yes 7 gifts to pass out. I was scoping out her IEP to find the names of them.

She wanted to give one to her ELI (early literacy iniative) helper and we had to play a 20 minute guessing game with it. She kept saying Mrs. Mits. Is it Micks, Mitts, M, Mack? She finally spelled it out for us (literally) and we got Mrs. Smith. She is making such incredible progress this year. I am just utterly amazed at how far she has come.

Sunday, December 14, 2008

Do I believe what I say I do?

I've been thinking a lot about the last few years in of my life. I've been thinking about the journey I've gone on and what I've learned at what appears to be the end of this journey.

On October 10, 2003, my husband was arrested. I didn't know it at that moment but the events of that day changed the course of my life so much that I can now view my life into two chapters: before and after. A brief (OK very brief) summary involves Bob getting arrested, loosing his job, pleading guilty to a felony, not being able to find a good job, having a psychotic breakdown, loosing our house, moving in with my mother in law, loosing another job, and finally turning around and coming back to the city were it all started. Along the way our 5 year was dignosed with autism. However, I firmly believe that all the craziness had nothing to do with that and it would have occured regardless of what we did.

I learned a lot. I learned that some of the people that I thought would stand with me didn't. I learned that some people who I knew wouldn't stand with me, did. I learned that love is always a choice. I learned that forgiveness has very little to do with those who need forgiveness but instead is about those people that need to forgive. But above all, I felt that God was asking me one question: Do you believe what you say you do?

Bob was arrested and it could have very well deystroyed our marriage. I think that if I was to spell out my story to the world outside of the church and to the world inside of the church not many people would have blamed me for leaving. In fact, I think most people are shocked that I stayed. However, prior to October 10,2003 I would have told anyone that I believed what Ephesians 4:32 said:

Be kind to one another, tenderhearted, forgiving each other just as God in Christ also has forgiven you.

But I had never really had that opportunity to act out my belief. I had never really had a chance to forgive someone who had wronged me like no one else ever had. I had never had a chance to forgive someone was in such desperate need of forgiveness. I had never had the chance to forgive someone when the stakes were so high. In that situation, the choice to forigve or not was going to be the deciding fact of where our lives would go. Would we go on together or apart? Would we curl up and die in our bitterness and despair or would we be able to cling to the hope that we had in the Lord?

In the end, I couldn't forgive him. I couldn't forgive him because I am a sinful person. I couldn't forgive him because I like revenge and judgement. I was incapable of forgiving him. It's a good thing for Bob that God isn't like me. Christ in me was more than capable of forgiving him for that.

I had always believed that life begins at conception. I have always believe that God had a purpose and a plan for everyone's life. I have always been against abortion. It was never even an option for me. However, I had never had a chance to put those beliefs into practice. Then, I got pregnant. I got pregnant when I was unemployed, my husband was working at a horrible job and we thought the company was going under. We had inadaquate health care. I was living with my mother-in-law. I was beginning to think that there was something wrong with my oldest. I don't think I could have planned a worse time in life to have a baby.

At the end of the day, I believed what Psalm 139:13-14 said,

"For You formed in my inward parts You wove me in my mother's womb. I will give thanks to You, for I am fearfully and wonderfully made;"

Shannon is our joy and our delight. I often look at her and think how she is the evidence of our faith. She is here because Bob and I believed. We believed that God was faithful and in the end we see God's faithfulness in His many gifts.

It has been a long journey the last few years. I think, that this journey is coming to an end. We spent a lot of time in the valley. We spent a lot of time crying out to God. In the end, I'm able to answer His question with "Yes, Lord, I believe what I said I did".

Saturday, December 13, 2008

Breakfast with Santa

We went to our local high schools breakfast with Santa. It was really, really fun. There were pancakes and crafts. Santa was sitting up on a stage waiting for people to get there pictures taken with him and not walking around greeting people. That was really important for Lauren. At almost 6, she is still absolutely terrified of him. That's one of the many reasons we don't emphasize him during Christmas.

Eating breakfast

Doing crafts

Shannon hanging out during the craft time

Stop the presses a picture of the five of us (and proof that I was there)

Friday, December 12, 2008

Christmas Gifts Advice

During the month of December, DO NOT, I repeat DO NOT go and by yourself a present. It doesn't matter if it is a book, a movie, and Ipod.

It may not occur to you that someone has already purchased that gift for you and is eagerly awaiting giving it to you and seeing your happy face come Christmas morning. Do not take that away from them.

Merry Christmas Bob!

Thursday, December 11, 2008

An ornament thief

I keep finding ornaments scattered around the house. I think she might be the culprit.

Wednesday, December 10, 2008

Tuesday, December 9, 2008

I think she's smarter then me

I have this black lab ornament. We originally got it when we had a black lab but it it looks just like my parents' dog, Molly. Ellie calls it "Molly". Anway, Ellie was looking at "Molly" yesterday and took her off the tree. I said "Ellie, put her back. I think Molly was happy on the tree."

Ellie stares me down and says "Mom, she not real. She doesn't have feelings".

I think they are smarter than I am.

Monday, December 8, 2008

Shannon's new bear

My kids love their bears and also love Build-A-Bear. We've gotten them bears around the age of 15 to 18 months and the bears have been named Snuggy and Ellie-Bear. However, we know have a bear loving 18 month old without a bear.

I knew it was time when a few weeks ago we had to run into BAB for a second and she grabbed a teddy-skin and she hugged it and yelled "Ted-ey". Does it get more pathetic then that?

Shaney is now the proud owner of a fully stuffed Teddy Bear. She has the original name of Ted-ey.

Shannon gets a teddy skin

The girls (and Bob) making the Teddy.

Running away with a new friend

Loving her Ted-dey Bear

Our trio of Bear friends (from left to right, Snuggy Bear belonging to Lauren, Ted-ey Bear belonging to Shannon, and L.E. Bear belonging to Ellie)

Sunday, December 7, 2008


We have stocking hangers that spell out NOEL. We also have one more with the word NOEL on it. We've misplaced the stockings but I think they might be at my mom's so I'm not buying replacements yet. The re-decoraters keep striking and I keep waking up to L-E-O-N. Hey, at least they are making a word.

Saturday, December 6, 2008


I was tagged by my friend Joy.

1. Egg Nog or Hot Chocolate. Hot Chocolate of course. The person who had the idea to melt chocolate, put it in milk and heat it up holds a very special place in my heart.

2. Does Santa leave presents wrapped or just sit them under the tree? We don't really do Santa. My 5 year old is terrified of him and has passed on her terror to the others.

3. Colored lights on the tree/house or white? Actually, none as of yet. We just moved to this house in September and haven't got around to it yet. I think we'll go with white. They just appear to be so clean. However, I'll probably get what's really, really on sale after Christmas. The lights on the tree are white. It was one of the last ones on sale so I just took the first one I could get and didn't even read the box until I got home.

4. Do you hang up mistletoe? Nope, never have.

5. When do you put up Christmas decorations? The Sunday after Thanksgiving. We usually do it as a family and order pizza. We then have a birthday party for Jesus after that. We haven't got to the birthday party due to illness. Hopefully, next weekend.

6. What is your favorite holiday dish (excluding desert)? Stuffed cabage. It is a Polish food. My parents don't make it for themselves because it is a lot of work. All of my sisters love it so they always make it for us.

7. Favorite holiday memory as a child. The year of the fire. My dad was the service director of the city we lived in and one year there was a fire at the house. It was freezing and the water the fireman used cause horrible ice on several of the roads. He had to go out and oversee this. I remember waiting so anxiously for him to go home. It's not really my favorite memory. It's just my most vivid.

8. When and how did you learn the truth about Santa? I was 12. I found the receipts for a bunch of toys.

9. Do you open a gift on Christmas Eve? Usually not. I think the kids will this year. It will be Christmas PJs.

10. How do you decorate the Christmas tree? With the kids. We have a collection of ornaments that mean something to us... even if it is just some that we bought to "fill" up the tree the first year we were married. They are like old friends to me.

11. Snow, like it or dread it? I like it. I mostly like the crispness of the first snow fall.

12. Can you ice skate? Absolutely not!

13. Do you remember your favorite gift? The necklace my husband gave me last year. I wanted to return it because it was too expensive. However, I didn't and I was able to see the love it was given with.

14. What is the important thing thing about the holidays for you? That God became one of us. That He walked among us. I strive to see the shadow of the cross in the manger. Otherwise, it doesn't make sense and it is simply another story.

15. What is your favorite holiday dessert? Peanut butter blossoms. Just seeing them reminds me of Christmas.

16. What is your favorite Christmas tradition? The Jesus Birthday Party.

17. What tops your tree? A star we just bought today. We have misplaced our tree topper and the kids were complaining so I needed something now.

18. Which do you perfer giving or receiving? I love to give gifts to my children.

19. What is your favorite Christmas song? Mary did you know?

20. Candy Canes! Yum or Yuck? Yuck! I'm a chocolate kind of girl.

21. What do you want for Christmas? A season pass to the zoo. We only live 5 minutes away and I want to go alot with the kids.

22. Do you attend an annual Christmas party? I will do a lunch at work type of thing.

23. Do you dress up for Christmas or wear PJs? We will wear PJs in the morning. The girls will probably wear dresses. We'll just wear pants and a nice shirt.

24. Do you own a Santa hat? No

25. Who do you normally spend Christmas with? My family (life isn't fair). I love being with my sisters.

I don't have one to tag

Friday, December 5, 2008

Neuro update

took Lauren to the neurologist. It's not as easy as that sentence leads you to believe. See, we moved 1 hour and 45 minutes away from the neurologist. The neurologist that talks to her like a normal, typical everyday kid. The neuorolgist who talks to me like an educated mom who has a one child with autism and three kids 5 and under. The neurologist who said finally diagnosed her with PDD. The neurologist who said "let's do one thing at a time, that way we know what works". The neurologist who said "I will not give up until I can help her and you". The neurologist, who when I called crying in May because my husband had lost his job and we had no insurance, said "Bring her in. We'll figure something out. Remember, I get paid no matter what." The neurologist who got on the phone and researched prescriptions I could afford with all of the $4 programs. The neurologist who treats us like people and not like case studies.

An hour and forty-five minutes. that's nothing!

Wednesday, December 3, 2008


Every time, we walk outside Ellie yells "Mom, I need my hook up. I can't go out unless I get my hook up". I always make her day by hooking her up with putting her hood up.

She loves perpercorney pizza.

She says "Shaney loves me so much". It sounds so sweet until you see poor Shannon captured in the death grip of someone who had a two year head start on life.

We had an important conversation that quickly spiraled down.

Me: Were did you get those stickers?
E: At preschool. I was good listener.
Me: That's great. It's good to listen.
E: You listen at work. They give you stickers.
Me: Well, I listened but they don't give out stickers at my worker.
E: You no listen, you run around
Me: No, I listened. They just don't give out stickers to grown-ups at work. (thinking maybe they should)
E: No, you no listened. You a scary monster at work and chase people and try to eat them. You no get sticker like that

At that point, I was laughing too hard to continue this conversation

Monday, December 1, 2008

To me it's breath taking

To most people, it's just a Christmas tree, a not even all the way decorated Christmas tree. However, I look at in just awe.

To me, it is so much more then a tree. The ornaments are like old friends that I tought I would never see again. They were locked away in storage for so long.

We lived with Bob's mom for almost 3 years. I did grow to love his mom and I am forever indebted to her for her kindness. But her house was not mine. I was not in charge. I did not decide what or when to decorate.

This year I did. The day Sunday after Thanksgiving I was busting out with the decorations. We did it, we are finally home.

Wednesday, November 26, 2008

We have much to be thankful for this year

We are so very thankful this year for so many things.

Our own house
Bunk beds
New schools
Great therapies
Good health
Health Insurance
A supportive family
A beach vacation
Raising sisters
Lauren learning to read
Ellie learning letters
Shannon learning to walk
Bob's new job
Kristin's new (or old job)
Being on our own again
Smiles in the morning
Hugs at night
Snuggy Bear
Kitty-cat (of the non-alive version)

We daily give thanks to God, who for now, has blessed us with these.

Sunday, November 23, 2008

Guilt, guilt, guilt

Lauren got invited to some one's birthday party. It was boy in her class and I don't know him. All I know is that they invited the entire class to play glow in the dark golf. It was at 3:00 and Bob had to go to work at 3:30.

I didn't know what to do. It was at a type of environment that I know that she would NOT do well with. It was going to be totally overstimulating. I don't know how to explain Lauren to other people and it's not another parent's job to watch my child 100% of the time.

Another thing is that she can get kind of crazy in environments like that. She starts running and she looses all ability to focus on something for even a few microseconds. She then looses all ability to listen. She also would have difficulty doing playing golf even if everything else was fine.

I don't' want her to get a reputation as "that bad kid" nor do I want other people especially kids to feel sorry for her.

So, I had to make the decision that she couldn't go. Unfortunately, at exactly 3:00 she remembered, She's been crying since 3:00 that she wanted to go "her Tyler birthday party". I feel so bad.

Autism sucks!

Saturday, November 22, 2008

OSU versus Michigan

Guess where we stand?

Thursday, November 20, 2008

Training is over!

I just completed my 10 week training class at my new (old) job. That's 10 weeks of my life that I'll never get back.

Only 42 more weeks until I am off probation.

Wednesday, November 19, 2008

A common bond

Found this on another blog and loved it.

To You, My Sisters (and Brothers!)
by Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.We have our own personal copies of Emily Peri Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Tuesday, November 18, 2008

IEP meeting

I have a IEP meeting for Lauren tomorrow morning. I hat them, hate them, hate them. I get a knot in my stomach just thinking about them.

First, it's intimidating. It's usually a teacher, a special ed teacher, a SLP (speech and language pathologist, a OT (occupational therapist), a PT (physical therapist), a psychologist, a special services interventionist (or something like that), and a reading intervention specialist. Let's not forget the administrator that's required to be there. And then there's me.

Second, you get services because you are delayed. Therefore, we must spend the majority of the meeting talking about what your child CAN'T do and what other kids CAN do. That's the MFE part.

The IEP part is slightly better because at least there is a discussion of what they can't do but what the school is going to get them to do and how they are going to do it.

Everytime I leave one I am even more aware at how different she is than other kids. It's not something I really like to dwell on, it's something that just is. One of my most common sayings is "It is what it is". I can't spend my life trying to change something that can't be changed.

Ugh, I should drive into work tomorrow ready to jump off a bridge.

Monday, November 17, 2008

cute kid moments 2

It's from last year but better late then never.

My mom sent the girls dresses to wear at Christmas. They were red with white fur trim. Kind of what Mrs. Claus would wear.

Lauren pulls it out of the box and makes a face. She says "I can't wear this. People think I Santa, I not Santa, I Lauren"

Does she look like Santa to you? She was a bit tired here.

Thursday, November 13, 2008

cute kid moments 1

I think this could be a recurring theme.

I forgot my lunch so the crew came up to drop off my lunch. I wasn't able to eat with them because it is a 2 hour late start day and Lauren wouldn't make it to the bus in time.

Ellie hugged me and said "(with a tear of course) I love you, mommy. Please don't go back. Come home with me." She perked up when I told her she could go grocery shopping and buy brownie mix with daddy.

She then handed me her headband and said "here, mommy, take this so you remember me. Put in your purse".

It's days like this that I wish I was independently wealthy.

Wednesday, November 12, 2008

a heartfelt prayer

Ellie prays with her heart. It usually goes something like this


Me, Ellie.
I love you. Do you love me?

Tuesday, November 11, 2008

Here we go again

With another T&A. That is a tonsilectomy and adenictomy. Ellie will be having her tonsils and adenoids removed sometime in the next few months. While they are doing that, they are also going to be doing a bronchscopy. They will stick a camera down her throat.

She snores very loudly and she has croup frequently. Hopefully this will put an end to that.

Lauren had a T&A in 8/07. At least now, I'm prepared. I had no idea what to expect with Lauren but I know all about the surgery. It is a rough recovery. However, Ellie can drink orange pop to her heart's content after the surgery.

Monday, November 10, 2008

A different sort of life

When I am most honest with myself, I know that I am simply masquerading in a normal life. I am simply a pretender. I can get by because I look like a normal mom with three normal (although they are simply the coolest kids ever) kids. I can go to a store or a a restaurnat and no one knows the truth: We are NOT normal.

We are living with autism. We are living with autism every day and every night. From the moment we wake up to the moment we go to sleep, we live with autism. Because we live with autism we experience great highs and great lows but they are none the less different.

Because of autism, the tank covering of my toilet is now cracked in half. She needed to see the water as it went down and lifted it up and dropped it on the floor and cracked. Because of autism, my husband can no longer work his PS2 (darn!) becuase the adaptors have all been chewed. Because of autism, I'm unable to go the grocery store with all of the kids alone. Because of autism, I on a journey that not everyone gets to go on. Because of autism, I realized what pure joy it is when your child hugs you and says "You is the best mommy". Becuae of autism, I realize that there are mothers who will kill for a child to hug them and say "mommy".

No matter how the day starts or ends, I realize how fortunate I am to live in this day and time. I am convinced that twenty years ago we would have show up for kindergarten (or first grade for that matter) and been shoved in a DH class or labeled as a bad kid. But we didn't, we showed up at age 3. We met people who are committed to give Lauren the education she needs and deserves. We met people who love Lauren and who see a child first and then a diagnosis.

Yet it is because of autism, that I hug my NT (neurotypical) kids a little less and expect a little more of them. Sometimes, because of autism, I forget to make a big deal about their milestones. I forget that just because it came so easily to them doesn't mean that I should forget about it.

At the end of the day, I struggle to find a balance between living in the normal world and living with autism. But, I have many more years to figure it out. I'm just glad that Lauren can help me do that.

Sunday, November 9, 2008

Bob's new job

My husband has a new job. He's no longer waiting tables at a family restaurant. He's moved on to a sports bar. he really likes it.

Here's hoping the tips are better.

Wednesday, November 5, 2008

Lauren the photographer

Lauren has said she wants to be a photographer when she grows up. I think she is doing quite well

Tuesday, November 4, 2008

Voting today

We went and voted today. My husband should still be in line now.

But more importantly Lauren voted yesterday. She proudly will tell you who wants to be president. Arack Omama and John Me-Cane.

Who did she vote for?

John McCain. It seems his name starts with a M just like hers does.

It's as good enough reason as I've heard lately

Monday, November 3, 2008

Saturday, November 1, 2008

Trick or Treat fun

Trick or treat was a lot of fun this year. We ended up going twice (not counting Trunk or Treat). Lauren's teacher had invited them to go trick or treating at her house. There was a big mix up on the dates. Her teachers lives in the same school district as she teaches in but all of her students live in a different city from that school district yet attend that school district. This led to the city that the school district is in having Trick or Treat on Thursday while her student's Trick or Treat night was not until Friday.

So, we dressed and loaded up all the kids to go Trick or Treating at Lauren's teacher's house. Of course, after you have just done all that prep, you don't just go home after one house.

Tonight was our neighborhood and we ran into a friend from school and did our neighborhood. Poor Ellie's wings were drooping and she was just ready to go home. Shannon had a great ride in the wagon and didn't make a peep because she had a "nummie" in both hands.

The night was finished off with pizza. Don't worry kids most of the candy goes to mommy's work on Monday.

Bob and the parade of princesses

The Tinkerbelles

Riding in style

Thursday, October 30, 2008

Big tooth day

Yesterday, could have more appropriately titled "Tooth Day".

Ellie was up all night long screaming about her mouth. She had cracked a front molar and it had decayed. It was causing her a lot of pain. I went to work and I was able to find out that a. we qualify for finacial assistance based on our family size, income level, and lack of dental insurance and b. the Dental Clinic has emergency hours.

I hurried home and grabbed her and took downtown to the Dental Clinic. I have not been to downtown Children's in over four years. They quickly sized her up and chose to remove her tooth. They strapped her to a papoose board and numbed her up and basically pulled her tooth out in two sections. After it was over, she sat up and looked at the dentist and said "I don't like you". She's nothing if not honest.

Back at the homefront, Shannon head butts Lauren and one of her bottom teeth which was hanging by a thread came out. Don't worry all of Shannon's teeth are intact

The tooth fairy has yet to come as she is exhausted.

Tuesday, October 28, 2008

Nurse Ellie to the rescue

Bob is very sick with strep today. I couldn't get off but don't worry Nurse Ellie took care of him today. She felt his forehead every hour and said "you sick Daddy". She also took her bear to the doctor for daddy so he wouldn't be scared. Only 15 more years until she heads off to nursing school

Monday, October 27, 2008

Trunk or Treat

A church in our old neighborhood does an annual "Trunk or Treat". It is trick or treating but in the cars thus the trunk part of the name.

Shannon understood this year. She wasn't sure why I shoved her in this strange outfit and then threw her in her stroller. However, she soon got two pieces of candy and yelled "nummies" for the rest of the event.

The big girls loved it.

Anyway, presenting my pack of princess. Lauren at 5, Ellie at 3, and Shannon at 1.

Wednesday, October 22, 2008

Eli's homegoing

A friend of ours daughter was born with a severe heart defect that was undetected until 3 day of life. At some point, she suffered permanent brain damage. She had 4 open heart surgeries in her short 8 years of life.

Eli went Home on Sunday night peacefully and without warning. There was no warning, no IVs, and her parents made no descisions. She simply went to bed and woke up with the ability to run, jump, and dance. Eli, who loved music so much, can now sing.

I am horribly sadden for her family. There is a mother who misses a child, an empty bed, and a family who is one member short.

I am not sad for Elli. I know where Elli is and I know that Elli is where she is not because of what she did but because of Whom she knew.

Because of that fact, we can hope because we know that this life is not the end. This life is simply of shadow of what is to become.

I strive to teach my children many many things. I try to teach them kindness. I try to teach them to turn off the light in the bathroom when they are finished. I try to teach them that vegetables are not icky. I'm desparately trying to teach my Ellie that she cannot fly.

However, the only thing that is important that I presses on my heart daily is to teach them to know and love God. Not to know God as in to know VBS Bible stories but to know God and His Holiness. To know God, to Serve God, and to Obey Him.

I am mourning for Eli's family but Elli is not an angel and she is no longer trapped in a body that does not work. Elli has been made whole and Elli is finally in the image of the One who made her.

Monday, October 20, 2008

I'm Shannon, I have a lot to say

I can say
cup (pup)
mommy (very demandingly)
Da-dee (emphasizing the last sound)
mine (can you tell she has two older sisters)
baby (anything smaller then her)2z

Sunday, October 19, 2008

Balls, balls, everywhere

I took Shannon to a "pumpkin patch" on the lawn of the college my mom works at. She saw balls everywhere and needed to try to lift all of them up.

sweet pumpkin face

my pumpkin among the pumpkins

Got to pick up that ball

Thursday, October 16, 2008

The tooth fairy comes to our house

Lauren was at school yesterday and bit into an apple and out popped a tooth. I thought we were a few months away. We did not have that tooth but then again we couldn't find the other two either.

I guess we better start practicing "All I want for Christmas is My Two Front Teeth"

Wednesday, October 15, 2008

Got our costumes

The girls are very excited about Halloweeen. Well, Lauren and Ellie are, Shannon's just excited because they are. Lauren is going to be Belle, Ellie will be Tinkerbelle, and I think Shannon will be Cinderella

We were discussing how I'm going to take out the wagon so Shannon could ride in it when we go Trick-or-Treating. I asked Ellie if she would like to ride too. She thought about it and said very politely "No, thank you mommy". I told her it would be a far walk.

At that point, she stuck her hand on her hip and said "No, Mommy I have wings, I going to fly"

I could see the wheels turning in her head as she imagines herself flying around the neighborhood.

I might have to go check on my ER coverage. I see another visit in our future.

Monday, October 13, 2008

We've moved

We've acutually been here almost a month and I still feel like we just got here. Half of our stuff is still in the garage. I think there might be 4 or 5 pictures on the wall.

I hate moving. My new plan is to live in this house until our credit is restored and then buy a house. After we move to that house, I am never moving again. My family can bury me in the backyard if they want.

A typical box-packing experience for me is

1. Decide to put something in box.

2. Label box with room identification like Kitchen, Bathroom.

3. Leave and find out why Ellie is running around without clothes on.

4. Throw some more things in said box

5. Figure out what child has tape and forcibly remove tape from child's hand.

6. Go back and repack the things that Shannon has thrown out of box.

7. Search for one more thing to put in box.

8 Figure out who has stolen my marker and who has tattooed which sister

9. Take Shannon out of Box

10. Take the Things Lauren has added to box out

11. Tape box

12. Feeling proud go fix lunch and contenplate packing another box

13. Hours later, remember something that I desperately need is at the bottom of said box.

14. Vow to never move again.

Wednesday, October 1, 2008

3000 days

I've been married for 3000 days.

It seems like so long ago that I committed my life to Bob and we made a covenant to our God.

Marriages seem to be easily broken right now. Now, that I have been married this long I know that marriage is hard and is simply not for the weak of heart. However, the rewards of mature commitment are great.

I have long since forgotten where I stop and Bob begins. We are so many stories, so many inside jokes that are inside other jokes (the origin neither of us can remember).

It has been a hard road these last 3000 days. However, it is because of our struggles that I have learned about forgiveness. I have learned about love.

So, Bob can we have at least another 3000 days

Friday, September 19, 2008

Ellie's first day of preschool

Here is our big preschooler. She was so excited to go to school

Wednesday, September 10, 2008

Lauren's first day of school

Lauren is finally a kindergartner. It was a very eagerly anticipated day for both Lauren and me. It seems just yesterday that we brought her home from the hospital. Unlike a lot of kids, it has taken a lot of work to get to this point.

We lived at the developmental clinic this past year hoping for some answers and solutions.

We have done countless hours of therapy. Her therapists have worked hard to get her to this point. Lauren has worked hard. Nothing comes easy for her. I often think that she sits and wonders what would be the easy way to do something and then does the exact opposite.

Here she is heading off on the big yellow bus

Coming home from a hard first day of school

Sunday, August 24, 2008

Funny Laurenisms

We are missionaries. Our car was made in Michigan so we are Michinaries.

My Daddy is just like Jesus. They serve people.

Love that kid so much. I wish other people could see her for who she is despite her differences. I wish people could look beyond the kid who can't cut, who can't sit, who can't speak well, and who can't write.

Friday, July 11, 2008

Future Aspirations

I aspire to be a Disability Claims Adjudicator. However, my girls have dreams of their own.

Lauren wishes to be a baby doctor (not sure if she is going to deliver babies or just take care of them), a school bus driver, a mommy, and a photographer.

Ellie wants to be Tinkerbell and learn to fly.

Shannon just wants to keep up with the big kids.

Wednesday, July 9, 2008

I applied

I applied for my old job. In my former life (before kids that is), I was a disability claims adjudicator. It's a fancy way of saying that I made the decision on the medical portion of Social Security Disability claims. I got to decide who was disabled under Social Security and who was not.

I originally applied and was hired in the winter of 1999. I was 22 years old and in love with a very gorgeous man (still am). Looking back, I was so young. I can't believe they hired me. Now, all I can think is I hope they hire me again even though I'm so old.

So many things have changed. I wasn't even married, I had never owned a car, lived in an apartment, or been I my owned. Now, I have been married for almost 8 years, owned several places, owned a house and lost a house and am trying to do it again. When I started, I was only concerned about myself and my then three months later my new husband. Now, I have three girly girls that need this job.

They need the insurance this job can provide. They need schools. They need food and shelter (and some princess things thrown in for good measure). Bob and I have made choices and good or bad we have lived with the consequences. I hate that my kids have sometimes had such a difficult time due to our choices.

I know that I meet the minimum criteria so I should be offered a test date during the last week of July. We'll probably make it a family adventure and take the kids up to there for the day while I take the test.

Monday, July 7, 2008

I love summer

I do I just absolutely adore summere. Always have and hopefully always will. I love the lack of school, the pool, ice cream, and the heat.

In March, shortly after my birthday, which is on the 1st, I start thinking about how summer is just around the corner. However, it more likely then not some blizzard will approach. Just when I think that I can't take it anymore spring arrives. I have a love/hate relationship with spring. It's just too unpredictable. Will it be 20 degrees? 50 degrees? 80 degrees or somewhere in between.

Then we go past girly girls birthdays and it is finally summer. It's warm and then finally it is hot (especially this year). I love the smell of chlorine and the taste of ice cream.

Thursday, May 1, 2008

I got distracted

Or really really busy with 3 crazy girls.

We finally have a semi-workind diagnosis with Lauren. She has ADHD.