mama

I have jet lag and was up way too early this morning, so I thought I’d do something productive for myself.  It has been far to long since I posted, so now that I have a bit of time …..

Teddy is on his way to reading.  We have always read to Teddy since he was itty bitty.  He loved, and still does, the Brown Bear books. Some of his newest favorites are the Saundra Boynton books. Oh, and you can’t forget Goodnight Moon.  Anyway, these are the type of books Teddy has heard since forever.  He, and now his brothers, are always excited for story time.  They crawl up into our laps and get snuggled in.  We have read these books to them so many times this way.

After awhile we could leave key words out of the story as we read, and he would fill in the blank.  Yes, he was memorizing the story.  It had been years since he first heard it.   Now the next phase has come…

Teddy is “reading” the story to us.  He sits down with us and tells us what is on the page.  For example:  The page reads “The moon is high, the sea is deep, they rock and rock and rock to sleep.” Teddy will say, “Moon high, sea deep, rock, rock, rock, sleep.”  Then we will repeat what the page reads right after him.  He gets so excited.  He loves to read.

As most parents and teachers can tell you, this is one of the steps to reading.  So not only is Teddy proud of himself and excited about the whole thing, but so are we.  Teddy is very capable and we know that he will be reading someday soon.  Some of his peers, who happen to have Down syndrome, are in kindergarden and first grade and are already recognizing words.   This is the next step that we are ready to help him get to.  He will be 5 in February and will start kindergarden in the fall.  I thinks he is doing great!!!

This is a little technicality, but since I was made aware of it, I like to make others aware of it also.   I used to say it this way, until a friend of mine made me more aware.   Our children have Down syndrome.  They are not Downs kids or Downs babies.  This is something they have, not are.  They are children first.

You would not call a child with cancer, a cancer baby or a cancer kid.  The same applies for our children.  They are not a Downs baby or a Downs kid.  They have Down syndrome.  They are not Down syndrome.  The child comes first.  Teddy is my son.  A beautiful 4 year old who has Down syndrome.

The more we can use correct language,  the more we can change the attitude that people have toward our children.  We want others to see our children for who they are first.  We should talk about them in this way.

I belong to a yahoo chat group which has been wonderful to ask other parents questions.  One thing I have found is that whenever a parent complians about something their child has done or about a certain behavior that is negative, they always qualify it by saying, but he/she is so great and we just love her.

At first I didn’t notice this was happening.  But the more I read about parents frustrations, the more I realized they were qualifying their statements.   It is alright to be frustrated, complain, or just vent about certain actions or behaviors our children exhibit.  Parents of typical children do it all the time without adding but she is great, or we love him.

Venting is part of being a parent.  You have to let off some steam.  Let’s realize that when we are complaining, we still do love our children.  We just don’t have to say it every time just because our children are different.

As all parents discover, they say little phrases without even realizing until their child starts repeating it.  My son Teddy has picked up one of these phrases and says it quite appropriately.  It’s so darn cute.  It makes my husband and I smile every time he utters the words.

I reply “two minutes” to almost all questions when I am busy.  If Teddy says, “I want milk, please.” I say, “two minutes.”  If  he says, “play outside.” I tell him, “two minutes.”

Well he has picked up on this and has started saying it back to me.  It’s so cute.  I will tell him we are going to have some oatmeal for breakfast and as you may have guessed, he says, “two minutes.”  Or I tell him we have to get dressed because the school bus is coming and he gets to go to school today.  He replies, “two minutes.”  It is quite appropriate, because he just doesn’t want to do what ever it is, right at that moment.  I am just so proud of him for saying it.  He is not quite four yet and his language is coming along beautifully.  Yes, I am the proud mama.

Teddy has completely changed my life and I didn’t even realize it.  As I reflect, I have realized that my out look on life has become different.  Of course each child brings the obvious changes, and special needs children can bring all kinds of extra changes.  But I’m not talking about having to childproof the house or buy a minivan.  This is much deeper than that.

I am not as uptight as I used to be.  I was the type of person who would not want play with the playdough because we would get it all over the house and then we would have to clean it up.  Or I wouldn’t let the kids play in the mud because it would take forever to clean that up.

As Teddy has grown we have had so many little, but meaningful experiences.  Each and everyone of those those little gems has touched me and changed me forever.  Like the time Teddy was 10 months old and we were at a friends house playing with her two typical children.  Teddy sat up on his own for the first time.  It was amazing.  We had been working on this goal all the time at home and with his many different therapists.  Then at my friends house, I turned my back for a minute and when I turned around again, there was my sweet baby sitting up.  He had been playing on his belly and now he was up on his bottom.  I almost couldn’t believe my eyes.  It didn’t register. At first I thought someone sat him up.  Then it became clear and I started to cry.  My boy had over come one of his many challenges.  He had worked so hard and now had accomplished a goal.  A goal that would come easily to my other children.  For Teddy this was a huge feat.  I was so proud.  My friend started crying with me when she realized why I was crying.  We were witnessing something great in what is usually considered an easy expected task for a typical child.

There are many of these experiences that we have witnessed.  Teddy worked so hard to learn to stand, to learn to walk just before his 2nd birthday, to learn his colors and animals, or to hold something in his hand.  All of these amazing triumphs have lead me to believe that life is worth enjoying to the fullest.  Of course everyone says these kinds of things, but do their actions fit?

I’m not taking about climbing Mt. Everest or sky diving.  I’m talking about letting the boys sit in the yard with a hose and get water and mud all over themselves and anything in their paths.  They will be happy and play for hours.  After, it will take me forever to get the mud out of the chair in the yard, or to get the boys into a bath and get their clothes washed and clean the porch and collect all the towels that were used to clean up…….the list could go on forever.  BUT, it is all worth it.  Teddy has worked so hard to be able to do it, so he should be allowed to.  Don’t get me wrong, he does have limits we set and structured play.  I just want him to experience as much as he can.

Before I would cringe at the thought of mud and run away.  Now we dive in head first.  I have changed for the better because of my beautiful son with Down syndrome.  I am a more relaxed person who has learned patience and pure pleasure all thanks to Teddy.  I am thankful for him.

This is the first time I’ve ever blogged. I’m nervous letting it all out there, but I hope my experiences help people or can be related to. This experience maybe difficult for some to read. I am being very honest about our feelings during this stressful time. Please read this without judgment and know in your heart that we were lost in a dark cloud struggling to find our way through.

As a lot of expecting parents at 16 weeks, we had blood work done. Without even really thinking about why we were getting the tests done, we just went along with what the doctor recommended. As it turns out, the tests gave us reason to go get a level 2 ultra sound. There was a small possibility of down syndrome.

Upon hearing this, we did not really react. I think I was just waiting to see. I did not want to let my mind wander. So I just put it out of my head.

Our ultra sound was scheduled right away. The doctors office was very calm and relaxing. The technician was sweet with us. They looked for all of the “markers” to see if there were any signs of down syndrome. They checked the size of the neck, the measurements of the nose, the heart, the size of the head, and the belly. None of these markers showed any cause for concern. But, it turns out I also had a two vessel umbilical cord. This can be considered a marker. People can also have a perfectly health typical child and birth with a two vessel cord.

My husband and I had agreed that if anything showed up during the ultra sound, we would get an amnio synthesis. Because of our two vessel cord we went ahead and got the amnio. We now had to wait ten days to find out the results. I don’t remember the numbers they gave us for our chances, but they didn’t really matter anyway. We were going out of our minds. Having to wait so long was nerve racking. We did not discuss what would happen once we found out the results. Again I think we just did not want to deal with the issue. We would wait.

Ten days later, my doctor called me at work. Of all places. I was in the middle of teaching my fifth grade class, when I was pulled out into the conference room to take the call. She told me the news over the phone. She did not ask us to come in, she just told me my child had Down syndrome. There was 1/75 chance our child would have Down syndrome. To top it off, she slipped and told us he was a boy. We were going to wait to find out the sex. Double whammy. Of course the first news was just devastating. I called Justin, my husband, and told him the news. He said he would meet me at home.

As soon as we saw each other, we fell into the others arms and cried. We talked and cried most of the day. The feeling was one of loss. We had lost that idea of the perfect child. Our son was not going to be perfect. What were we going to do. We did not really know much about Down syndrome. The doctor did not have any information for us. We were left in the dark, not knowing what to expect. We called our parents and told them, with out really wanting to talk about it. We didn’t know what we were feeling let alone having to share those feelings with a person outside of the little shell we had created.

Our family started networking and tried to get information for us. Plus we got on the internet to research Down syndrome. It’s amazing, but in 2004 there was not much information out there. Most of what we found was negative. Telling of children who were instatutionalized and not able to lead productive lives. Also there was a lot of negative information about the health of people with Down syndrome. Some of our family came back and told us a lot of negative information. With the extra risk of my two vessel umbilical cord, it was suggested this baby would be very unhealthy and very involved. It was even suggested by a few that we terminate.

This was so overwhelming. We were scared and ignorant. Should we terminate? I never thought I would ever have to think about having an abortion. Especially since it took us over a year to get pregnant. But there we were, seriously discussing aborting. (90% of women who find out the are pregnant with a baby with Down syndrome terminate) We only had two weeks to decide what to do before the cut off date for the abortion. That just added to the stress of our situation. We needed more time to figure things out.

I started calling people, anyone who would listen. I spoke with doctors, physical therapists, nurses. The problem was I didn’t know who to call and the people I called didn’t know what to say. They didn’t know there were support groups out there who could help us.

One therapist I spoke with told me that all of the children who had Down syndrome that she worked with seemed fine. They didn’t have severe needs and their health was alright. This flipped a switched in my head. In my early twenties I worked with special needs children. A few of them had Down syndrome. Why hadn’t I thought of this before? These children were so special to me. I loved playing with them everyday. That is when I knew everything would be alright. At least I hoped.

I now had to talk to my husband. We talked and talked for days. We weighed all of the information we had, mostly negative, and then I told him we just had to have faith. I was not going to terminate just because our baby had Down syndrome. It is not like he had trisomy 18, 13, or 11. Justin was not familiar with people with Down syndrome, so this was a huge trust he was putting into me. My husband was trusting me to make this decision for us. We were scared and unsure. In the end I canceled my appointment to have an abortion.

As time went on and the date for the abortion deadline passed, we felt a little more at peace with our decision. There would be know way of knowing exactly how involved our child would be or what his health would be like, but we hoped for the best. I even prayed. I had never prayed before. I am not a person who practices religion, but that is another discusson. Anyway, now we played the waiting game.

We had several more ultra sounds and many non-stress tests and everything seemed to be alright. I had Justin come to one of the classrooms where I worked and observe a few of the children with Down syndrome. This seemed to help him a bit. He could see that it was not as bad as the books and information on the internet had told about.

We had our baby on February 21st. It was an amazing experience. Our first child. We both cried for joy at this amazing event. Our families were there sharing in the experience. It was turely special. Our son was born and he was healthly and strong. He was a little boy. We didn’t see the Down syndrome. We saw a child. Our son. He was perfect in all of his glory. Trisomy 21 was just a part of him that we would deal with.

As we have watched him grow into this beautiful young boy, we realize how lucky we are to be able to share our lives with him. We are lucky that we made the right choice and brought this child into our world. He gives us pure joy everyday, and he has taught us more than we can ever imagine. I am thankful for him.