Not so Perfect but Just Right

I just found out that a friend of mine was told it is likely her son has Autism.  Her little boy is the same age as Zachery and we met when we where pregnant with the boys.  My heart goes out to her. 

This discovery has triggered the memories of posting on that message board.  At the time, Avery was our only child.  And reading about everyone’s prenatal testing was so very hard for me.  It was like everyone was searching for the perfect child.  They would have blood test, sonograms and amnios.  I remember the posts where someone was terrified there was something wrong with their baby, it could have down syndrome or many other problems.  And I remember the posts where they got the test results back and so many would say how perfect their baby was.

I can’t explain how much this was like a knife to my heart.  Not because their child was perfect but because they thought any thing else wasn’t.  If having 46 chromosomes makes you perfect, what does having 47 make you? 

So their relief at having a perfect child was an acknowledgement that mine wasn’t.  Yes I know the world isn’t all about me and none of that was directed to me.  But, well the world is all about me and how things effect me.  And what I wanted to say was just because those tests are perfect doesn’t mean they all will be and that there won’t be problems.  It’s one of those things we moms know who have been doing this for a while.  All of our kids have highs and lows and we love them through or at least we are supposed to.

But as a mom of a child who would never be considered perfect, I know this; I know God is perfect in all things.  And I know he created my child, both of them.  So I know that no matter how many chromosomes they each have is not a determining factor on their level of perfection.   And I know how it will feel when you hear someone sing their relief that their child doesn’t have autism or when you learn their child too is more different than perfect. 

But hold on to this.  That no matter what, your child is perfect through the eyes of a mothers love and as created by God.  No one, not a test or teacher or Dr or stranger can take that away.  They can never change how perfect your child is in your eyes and that’s what matters. 

Things I want to ask

I’ve added a lot of “old” friends on facebook.  Such is the nature of social networks, right?  So we all talk about the right way to add someone.  Do you go right to their page and look at their pictures, read their info and see where life has brought them?  Or do you sit back and act cool and wait to see what they do?

How do you catch up 25 years?  I want to cut right to the chase.  Hey I see you are a Christian now does that mean you quit snorting coke?  Wow how many husbands have you had?  Oh, you’re dating?  Why didn’t you ever get married?  Where is Miss Manners for facebook?

Just because I friend  you does that mean I owe you an explanation of where and what my life has been?  It’s kind of hard to stay at arms distance from people when you have all of your daily personal information for the world to see.  But  you can’t just come out and ask someone if they had a chin lift.  Or can you?

Sponge Bob

How could one show be on so many hours a day? Any time day or night when I turn my tv on I can find Sponge bob to watch.  It’s always on.  You would think there was a channel dedicated to showing Sponge Bob episodes, but no you can find it on almost every kid channel of which we have about a dozen.  Everyone in my house likes it, except me.  I don’t get it. 

I can’t sleep

I hate it, I can’t fall asleep.  I wish I knew what was wrong with me but this is getting crazy.  I can’t fall asleep so I sleep later making it harder to fall asleep.  What a crazy viscous cycle.  And to make matters worse I feel asleep at 6 tonight and slept till 8. 

I went to bed at 10:30 and laid there until 12:30 when I finally got up.  I came out to the living room and a few minutes later Avery came out here saying he couldn’t sleep.  I sent him back to bed where he only stayed for a few minutes before starting to throw up.  Now this child does not move fast so I was like the drill instructor behind him yelling run, run, get to the bathroom, run!!!!!

I did not want to clean more puke off the floor.  Zachery started this mess a week ago.  Then Mike was sick and didn’t get out of bed for like 27 hours.  I did check a few time to make sure he was still alive. 

So now Avery is back asleep on the couch and I’m wide awake.  I’ve even quit having diet coke at night to see if that helped.  So far no.  I should be doing dishes.  ha ha ha ha

I did im Mike.  He picked up the jewelry I’d ordered from a show.  I can’t wait to see it.  I found so much cute stuff I’d love to have.  I asked about signing up to sell it but they want $395 to sign up and  you still have to buy all your jewelry for your shows after that.  It comes out to be like $1,200.  Uh sorry but no thank you.  I’ll stick to my Usborne books. 

Rain

It’s raining.  When it rains I loose my internet.  The kids are asleep, Mike is at work and I’m kinda lonely.  Or maybe I’m just bored.  I tried to watch TV but the power keeps going out and resetting the satellite so that is futile.  I’m hungry but have had all my points for the day so I don’t want to blow it.  I keep thinking I hear tornadoes, even if there are no warnings.

So I can do this, talk to myself.  I could go to bed but for some reason I really don’t like doing that lately.  I don’t feel like I’m at home.  How strange is that?

Maybe it will help when we finish the upstairs and I actually have a bedroom.  When I’m able to use some of my things instead of Marsha’s.  I miss my old house and I’m not sure how to make this one mine.

Moving Out

Zachery and I ran to Wal-mart after school for three things.  He decided he wanted popcorn chicken and I wasn’t buying it.  So he got mad and told me I was mean.  He tried to hold the basket so I couldn’t leave, so I picked up my bag and walked out.  He ran after me telling how mean I was and how much he hated me.  This went to all the way to the car where he got in my seat and said he wouldn’t let me in the car.  I picked him up and put him out of the car, got in and shut the door. 

He got in and demanded I apologize, ya I almost laughed at that point.  As we drove home, he told me he was moving out.  I asked him where he was going and he said to grandpa’s.  I asked how he would get there and he told me he’d get a map.  Alright, was he going to leave tonight or wait until morning to head out?  He said he wasn’t leaving until Easter.  I asked him why wait so long, why not just leave now.  He said no he was waiting until after Easter.  He didn’t want to miss his candy. 

I can’t believe I was able to keep a straight face.  The he told me he was staying gone until I called and apologized.  So dad, Zachery will be there in a few weeks.  He said he knew what color the house was and could get there with a map.

It’s Amazing

How clean my house was when my laptop didn’t work.  When I had to use the desktop, which is not comfortable to sit at, I’d only stay online a few minutes at a time.  So as I sit here and look around my house at the laundry not folded and the dishes not done and the messy coffee table I remember how nice it was to come in to a clean house every day. 

My plan for today, after I take a nap, is to put the laptop on the kitchen table and  not sit on the couch with it.  I’m going to finish the dishes, put away the clothes and tidy the living room.  It sounds good right?

Get a job

That’s what Zachery told me tonight.  He asked if I got a paycheck and I said no. So he told me to get a job.  Evidently he wants his friends mom to baby sit him and me not working is interfering with his plans. 

Finding Out

I remember that first night in the hospital after we knew something could be wrong.  No Dr’s came in to talk to me.  No one explained what would happen to my baby.  But that night I lay in my hospital bed and held my sweet boy.  I remember looking at him and thinking about what I knew about down syndrome.

I had never known anyone with down’s.  I didn’t watch Life Goes On and I don’t even remember seeing anyone with down’s.  I thought people with down syndrome lived in their own world.  I thought they were unaware of anything outside of themselves.  I thought all kids with down syndrome died by the time they were 12.  That’s what I remembered from high school A&P, that’s what the teacher said.  It was wrong but I didn’t know that and it stuck with me.  My baby was going to die. 

As I lay there, holding him and thinking all those thoughts. I wondered if his life would be horrible.  I wondered if I should love him enough to just end it now.  If I should put a pillow over his face, and save him.  That thought is my biggest shame.  It’s hard to get past.  I can say that it didn’t last long and I quickly decided that was a horrible idea.  But I still thought it.  It’s something that all these years later still breaks my heart and I feel guilty and shameful for thinking it.  But even through all of that I knew one thing.  I loved him.  And when I looked at my Avery I could not reconcile all the things I thought I knew about down syndrome to the baby I held.

He looked at me.  He knew me.  He was comforted by my voice and my touch.  He nursed from me.  He made my heart beat.  I was terrified but I looked and him and saw how perfect he was.

The next day we came home from the hospital.  Still no one had told us anything.  We had an appointment the next day with the pediatrician, he had jaundice so we had to go by the hospital first for blood work.  Not much was said at the appointment, just that he seemed fine.

The fist week passed and we decided to take him to another Dr.  We made the appointment and only said we were looking for a Dr. and our baby was a week old.  He came in and looked at him. He looked at the back of his neck and the palms of his hands.  Then he said he had to get another Dr.  I knew, I knew he thought it too.  So when he came back I let him off the hook. I told him they thought our baby might have down syndrome.  He was relieved, he said yes our baby was probably a mongoloid. 

Yep, he said that word!  We were still numb.  He did tell us that Avery would be ok.  That he would do all the things other kids did.  This was really the first thing we’d heard.  So we left and cried all the way home.

We had been told it would take two weeks to get the chromosome test  back.  On Tuesday of the second week of the wait I got a phone call.  We were nine days into the fourteen day wait.  I answered the phone in my bedroom.  The voice on the other end said there was a problem with the blood.  That the blood got to California and all the labels fell off.  That they couldn’t use it.  I didn’t understand what I was hearing.  WHAT?  I kept saying, “you can’t make it fourteen days again.  We only had five left.  I couldn’t do fourteen, I could only make it another five.”  She had no clue what I was talking about, did I want to come in and have the test or not?

We were hanging on by a thread.  We weren’t eating or sleeping.  The cradle was on Mike’s side of the bed and all night long he would sit up and shine a flashlight into Avery’s face.  “Is he breathing?” I was ask.  Mike would check, say yes.  The light would turn off and we would sleep for a few more hours.  Every night I went to bed I thought my baby would die.  I kept saying to the Dr., “weren’t all kids with down’s sick?”  So she offered an apnea monitor and made an appointment with a cardiologist. What I wanted was for her to tell me he was ok, that he wasn’t going to die.

We were still seeing the first Dr. every day.  On Wednesday after the second blood draw she asked if we had the results yet.  She didn’t know about the labels.  She called the lab and found out we could have the chromosome count in 24 hours!  We could have known in 24 hours if our baby had down syndrome.  So she told me to call the next day and as soon as the results were in we could come to the office and get them.

We had spent that first two weeks going from crying to telling each other it wasn’t true.  Mike and his dad had gone to the library and came home will all kinds of books about down syndrome.  We sat on the floor and compared all the pictures to Avery and to ourselves.  What we determined was that Mike had downs. 

I would ask him mom to come and sit with Avery so I could take a shower.  I would stand in the shower and cry my heart out.  I didn’t want to cry in front of him.  I didn’t want him to think or feel that we thought there was something wrong with him.  I didn’t want him to feel that I was sad about him.  I didn’t want this horror to touch him.  I bargained with God.  I promised how I would help people with down syndrome and be an advocate for them if only my child didn’t have it.  I started to tell people what the Dr’s thought.  I would explain about the low set ears and the line on the palm of his hand that he didn’t have.

So Thursday came and I called to ask if they had the results.  No, not yet.  About 4 pm the Dr called and told me, there was a problem with the blood.  There were getting a specialist in to look and it would be the next day before we knew.

So on Friday morning, on Avery’s two week birthday, I got a call from the office.  Of course I didn’t answer it in time, and had to do *69 to call back.  We went in to the office.  On the drive there we went back and forth with he has it, he doesn’t have it.  But come on, if the test is ok they do just tell you over the phone. 

So we went into the office and waited for the Dr.  She came in and said, “I’m sorry the test was positive.” Of course I started to cry, holding my sweet boy.  My heart breaking into a thousand pieces.  All the hope I’d held out was gone.  Mike looked over at me.  I don’t think he was crying, oh he’d cried plenty over the past two weeks.  He looked at me and said, “is this the baby you have loved from the minute he was born?”  Of course he was, I’d loved him from the moment he was created.  “Then stop crying,” he said.  Avery hadn’t changed just because of a blood test, he was still the same.  He still knew my voice, looked at me, was comforted by me, made my heart beat.

So we walked out of the office that day different people.  Mike told me he didn’t want anyone to tell us they were sorry. He wasn’t sorry our son was born. 

I won’t pretend that it was easy after that.  That all of a sudden we were these happy people who were so blessed and happy their child had a disability.  But what we decided and what we have lived is our son is just as he is supposed to be.  We treat him like our son, like a person, the person he would be no matter how many chromosomes he has.  And today all these years later he still makes my heart beat.

Did you Know?

That is probably the most common question I get about Avery.  It is the one thing other parents say to each other.  Did you know, did you know the baby you were having was going to have down syndrome? 

No we didn’t know.  We had no idea it was even possible.  Silly I know.  But Avery was our first, I was only 24 and I skipped that part of the book.  Why would that happen?  I was young and there was nothing like that in our family.  It didn’t seem possible.

So you are asking yourself how did you find out?  Did I know deep inside myself that something was wrong?  Did I know as soon as I saw him?  No to both of those.  I had a great pregnancy with Avery.  I puked all the time but I could feel life inside of me.  I talked to him and felt him move.  I loved every minute of it.

I had PROM at 36 weeks.  My water broke early.  That is what I did know.  That my water would break.  And I knew he was a boy.  So at about 3 am on Thursday September 9, 1993 I got up to pee and my water leaked.  So I did what all expecting mom’s would do.  I went back to bed. 

Then at 7 am I was back up to pee and more water.  So I went back to bed.  Finally at 9 am I called the Dr and went in to see her.  Yep she said my membranes were ruptured.  Go to the hospital and don’t come home until you have a baby.  She took amniotic fluid to test and see if his lungs were developed. 

So we went to the hospital and spent just over a day there before they decided that his lungs were developed and I should be induced.  Not much was happening with my body and my risk for infection was increasing.  I’d already been almost 36 hours since my water broke. 

So I labored and at 9:45 pm Friday September 10, 1993, 42 hours after my water broke, my Dr came in and told me I was ready to push.  Gosh it’s been 16 1/2 years and I still remember every second of it.  At 9:56 pm my beautiful, perfect son was born.  He was screaming and I said, “hey little guy, don’t cry, mommy’s here.”  And he looked at me and stopped crying.  He knew me. He had 10 fingers and 10 toes and was perfect!  His apgars were 9 and 10, he was 4 weeks early and weighed 7 lbs 10 1/2 ozs and was 20 1/2 inches long.  He had blond hair and skinny legs.  He nursed right away and made my heart beat.

At 3 am I got up and went to the nursery to check on him.  I’d sent Mike home for the night, he’d slept in the labor room the night before.  He was awake and waiting for me.  I took him back to my room and tried to nurse him and loved him.

The next morning I went to take a shower and the Pediatrician knocked on the door.  She had a resident with her and never came in.  She said she would let me shower and talk to me later.  I was worried, was he ok?  He was early were his lungs really ok?  Yes she said, he was fine.  And as she left she turned back to me and asked, “Who does he look like?”  That question and my answer have haunted me since.  “He has to look like his dad, no one in my family has a face shaped like that,” was my answer. 

After my shower, the nurse came in with Avery. I was so happy, the timing was perfect!  I was just going to call for him.  I asked her to stay and hand him to me after I got into bed.  As I got into bed, she asked if the Dr told me about the test they were running on my baby, the chromosome test.  ?NO? I didn’t now about any test.  I did know that the nurse last night said that because was early they might have to do extra things to him but that the Dr said he was ok.  “What is that test for?”

She handed me Avery and left.  I was alone and I knew that didn’t sound right.  My OB’s resident came in to check on us.  We’d become friends over my pregnancy.  I asked her if she knew what this chromosome test checked for.  This was the first she’d heard about this.  She told me to have the Pediatrician paged and ask her what was going on. I didn’t want to bother anyone so I just laid there and held him.  Yes I know if you know me how odd that is! lol

So a nurse came in and said that the Dr told her I wanted the Pediatrician paged and she has paged her and they were waiting or her to call back.  Kathy, my OB resident came back to see if I’d heard from the Dr.  By then my mother in law, grandmother in law and sister in law had arrived.  No I hadn’t heard from her yet.  She said, “have her paged again.”  I told Marsha that some nurse had said they were running a test and I was trying to find out what it was.

The nurse came back and told me the Dr was paged again and was on her way to her office but would call me when she got there.  Not much time passed and my phone rang. It was my OB on her cell telling me the Pediatrician was just being cautious but everything was fine and she would explain it all to me.  I was so relieved, my baby was fine.  Ok, on with my visits.

I still remember my sister in law was holding Avery.  Mike wasn’t at the hospital yet, I later found out  he was driving all over looking for the perfect rocking chair as a gift for me.  And in walked Reef, the resident.  He walked into my room, went to the corner, turned around and said to me, “I hear you found out we think you have a down’s baby.” 

Honestly I don’t remember speaking.  I remember thinking if I don’t talk, he will shut up and leave.  Marsha, my mother in law went nuts yelling at him.  Asking how he could possible say something like that.  How could he possible think that!  I remember laying in the bed and watching her pacing back and forth and ranting. I remember hearing things like ears set low, and a line on the hands that he didn’t have.  I remember looking at Avery being held in someone else’s arms and just wanting him back.  I wanted to protect him from all the crazy people.  I wanted everyone to shut up and go away and leave me with my perfect baby.

I was numb.  I remember Reef saying they didn’t have to do the test.  And that was all I remember saying, “yes you do, you can’t just say that and then take it away.  You have to do the test.” 

Then it was just Avery, Marsha and I alone in the room.  And I was numb, shocked.  People started dropping in saying wow  you had a baby, isn’t he cute, and all those things.  Mike got there and was so happy and holding Avery.  The cafeteria sent up a steak dinner for us.  People were coming and going.  I was numb and all I could think was I had to tell Mike.

His mom and dad went  outside to smoke.  And I know his mom was telling his dad.  And finally we were alone and I had to tell him.  I think I told him that they were running a test and a nurse thought he had down syndrome.  That’s what Reef said, that he or the Dr didn’t see it but a nurse pointed it out.  His joy was gone.  I still have a picture of him holding Avery before he knew and the joy on his face.  And I have the picture in my head of all the joy gone.

to be continued……..

The Library Book

Zachery’s library book is due back on Monday’s.  He’s supposed to bring it on Friday so they are all there and waiting.  He also has a book in a bag he has to return every Thursday.

Thursday afternoon when I took him to school I realized I’d forgotten the book.  Well Friday he was throwing up so he didn’t go to school.  Those freaking books were on my mind all night I was afraid I was going to forget them.So when we went to leave for school I went to grab the books.  But they were gone!  I looked all over and couldn’t find them.

So finally we just went to school.  Of course now he was late and I had to explain to his teacher that I had no idea where his books were.  A couple weeks ago I had to call her, after she sent  a note home because it wasn’t returned, saying we didn’t receive a book this week.  As I’m on the phone with her, Mike starts yelling that the book is in my car! lol 

When the kids go to the library the Liberian get’s all pissy asking each child that forgot their book, where their book was.  Then she sends a bill home for the price of the book.  You know someone takes her job a little too seriously. lol  These kids are 4 and 5! 

So mom got a yellow today at prek, for loosing not one but two books! lol  I did remember that Avery had cleaned the kitchen table where the books were, so we wouldn’t forget them.  And after he got home from school figured out where he put them.  There is so much pressure in prek.

Love it or Hate it

It doesn’t matter what you feel about the new healthcare bill.  The thing that excites me is that so many people feel something for it. 

For so many years we have been complacent with what happens to our lives.  We have cared more about black mold as a nation than our government.  So to see so many people speaking, protesting, organizing and even cheering is exciting to me. 

I only wonder how long it will take for the average person to put their heads back in the sand and just let life happen to them.

Go to bed!

How many times do I have to say it?  Of course Zachery is still awake, because I’m on the phone with my dad.  So he is on Avery’s mp3 player and singing, “We are the Lazy Generation.”  lol

Go to bed Zachery, mommy has tv to watch and snacks I’ve hidden from you.  I love you and will see you in the morning.

Renovation Reality

We have started building the bedrooms and bathroom on the second floor.  So far it has taken longer than we would have hoped but we are figuring it out as we good.  We laugh that some people actually have a plan before they start but we had an idea and are making the plan as we go.

First Mike had to take out a wall in the downstairs bathroom to find the three inch line to connect the new toilet to.  This was January 28, 2010.  Then he ran all the plumping upstairs.  It took a couple of weekends to get it done.

 

This is what will be the boys bedroom.  All the wood had to be attached to the metal by drilling into it and then putting a bolt in it.  Oh it was a lot of fun! We started on February 13, 2010. 

This is the hall that leads to our bedroom.  This took the first 3 weekends to get done.

This will be our bedroom with the two windows.  I am standing in the boys room and the bathroom will be in between.

The new bathroom.  Behind the vanity is the staircase. 

We now have all the framing attached to the metal.

This is the outside wall of what will be out closet.  I am standing in the garage.  This was March 13, 2010.

This is the outside wall of the boys room.

This is the boys room as of March 19, 2010.  I am standing at the top of the stairs looking in.  Their closet will be right in front of me on the left.  Where Zachery and Mike are standing will be Avery’s new loft bed.  He wants a room like Drake and Josh.

It’s funny there is so much stuff upstairs we look like hoarders.  But as you can see I have cleared out lots of it.  So much of our stuff is still boxed up from the move.  We will finally be able to use it when we move the bedrooms upstairs and I have space again!