Our Story

October is Downs syndrome awareness month. And this is the year my daughter turns 6 this month. It's hard to believe we've come this far. I remember when I was pregnant, and I went swimming with my friend Tina and our kids. I wondered aloud if I would ever be able to teach this baby to swim. Today, I have no doubts, she will probably swim by herself next summer, if not before. She walks, she talks, she's potty trained, she knows her letters and colors as well as most kindergarteners. She takes dance and tumbling lessons. She is pretty normal.....and yet not. She takes more time to learn these things, and she is stubborn as heck about NOT learning to keep her hands to herself. She really loves to love on others....with her whole heart and hands.

We knew Desirae had DS before she was born. I had an amniocentesis, my doctor insisted because I was 41. We also had very extensive, modern ultrasounds and found out she was a girl before we knew she had DS. My doctor told me the results of the amnio at my ob appt in June of 2003. I was heartbroken. When Dave and Nick came home, they thought I had miscarried, I was that upset. They took the news very well, and propped me back up. Being pregnant turned into work at that point. And I was working full time on my feet all day as well.

I had the best OBGYN that money could buy. She was a gift from God. And she made sure we had the best medical care possible. I worked in a hospital kitchen, and one day she came through for lunch, and told my supervisor to "go get her a chair, there's no reason why my patient has to stand while she cashiers". He did. She also told me that "based on our experience, we cannot determine the happiness of another". Wow....that hit me to the soul. Because....

Growing up, we had a family friend with DS. I've referred to Wade before. He really shaped all my thoughts and opinions on the subject. Other than knowing him, I was ignorant. One day when we were playing, running about as kids do....Wade had to stop and sit down. He was born with heart problems. I sat down with him, and he shared that he did not like being different. As a child, I saw his pain, and felt very sad for him. Why I didn't see his joy is beyond me. Later, when we think about life and what might happen, and our options, talking with girlfriends, etc.....I decided that abortion might be a good option for these kids. They should not have to suffer our society. Did you know the brain is not fully developed until age 25? And then it develops in the directions that we take it. I never gave the subject any more thought than I did in my teenage years.

So, one of the people you first talk to is the "Genetics Counselor". And there's more tests, fetal echo cardiogram, extensive ultrasounds that weigh and measure each organ in the baby, monitoring for growth and any developing defects. When the genetics counselor saw us....for the very first time, she had never met me before, she automatically asked....first question....Abortion? Dave and I hadn't seriously talked about THAT. It was the moment of reckoning. And I burst into tears. Dave put his arm around me, and said to her "that won't be happening". It was very odd....she really did not know what to do with us after that point. We asked questions that she couldn't answer. Finally we asked for recommended reading. She got on her computer and googled books on DS. Later I asked the specialized OB doctor (not my regular OB) how many people abort and he told me that it was my own personal decision and I didn't need to know what other people did. I took that at face value. It wasn't til after Desi was born that I learned the abortion rate is about 9o% or higher.

People assume that I am conservative, pro-lifer when they hear that I knew Desi had DS from an amnio. Well, I'm certainly not pro-abortion! I had a talk with a friend recently, we share the exact same views and she calls herself pro life and I call myself pro choice. It was a good laugh, because it showed us how limiting that "label" is and what WE attach to it. Recently I heard someone refer to herself as moderate pro life. I liked that. Maybe I can be a moderate pro life person. Labels become who we are in some ways. Changing the label feels like putting on a tank top in the middle of winter!

The support of our doctors was phenomenal. Not once did I hear a negative of any sort. In August, the ultrasound showed a 2 lb baby instead of the expected 2.5 lbs, and the doctors took me off work. 3 weeks later the end of my 7th month, baby grew a lot, and that was my last ultrasound. We knew she had hair at that point! She was very active, irritatingly so! I used to complain during work, when I was tallying menus and calculating how much food was needed for the next day....I had to THINK and she wanted to turn somersaults.

The only negative came from a close family member of mine who decided my retarded baby was all about her. I was told "you don't know what it's like having to tell people about this". I guess someone had to feel the shame, but it wasn't me. Dave's family was great. His mom came and stayed with us for 10 days when Desirae was born. I was so grateful because I had a c-section and couldn't drive.

Desirae's apgars were 8 and 9. Good scores. She refused to nurse. Her tongue thrusts made latching on impossible, but she drank from a bottle just fine. I tried to nurse for almost 2 months before giving up, even had a lactation consultant and buying special shields, driving myself crazy. My whole life was try to nurse baby, feed baby, pump, over and over all day and night long. Finally everyone gave me permission to give up, so I did.

Desirae Faith is a perfectly healthy child. She's had 3 or 4 ear infections in her entire life. One thyroid test was abnormal. so we tested thyroid yearly until she was 5. She can't hear in very low frequencies and she has astigmatism, needing glasses. Pretty normal stuff. She just let her teeth be cleaned for the very first time yesterday. She has 2 cavities our pediatric dentist is keeping an eye on. She was toilet trained by age 5, with occasional back sliding and accidents. We joked that our puppy caught on to training faster than she did. We have a sense of humor about this, and we say things occasionally that the rest of the world might not think are funny. You know....I remember asking my son if he were stupid when he did a stupid thing. Well, Desirae does many stupid things, but that word is just not PC where she is concerned. Says who??? So, her parents aren't always PC and sometimes we just laugh when we "shouldn't".

We may not be PC, but God considered us to be good enough parents for her. It's a good thing I was already on the road to being the person that God would have me be...Desirae adds to the journey. The life lessons she presents are never ending. How else would I know what strengths and patience lie in reserve if I never needed to use them?

October is Downs Syndrome Awareness Month

There are those out there who are going to blog 31 for 21. I am not that ambitious! I promise to do nothing of the sort. I will try to focus a few blogs on DS in some way. Some of these bloggers blow me away with their dedication to DS. It's a fact in our lives that I accept, and with God's help, we "just do it". I borrowed that saying from Nike and never gave it back. It seems to fit my life nicely. I've learned that perfection is for the other guy. I just do it.

So you see my daughter or someone just like her-----PLEASE use the moment to educate your children on exactly what special needs means. Someone who has special needs has NEEDS! So often I hear "special needs" but I don't see that it's understood what those needs are.

My daughter needs friends. She needs good role models. She needs to be loved and accepted the way she is. She needs flexibility in the people dealing with her. She needs to be held accountable. She needs compassion. She needs forgiveness. She needs the other person to be the better person, because she is not capable of this. She needs someone to take her hand and show her the way, and give her a smile.

Please feel free to USE her and children like her to teach your children. I can't emphasize this enough. So often we teach our kids not to stare, not to point, to stay quiet, to be polite.....but we forget about life's lessons. Kids are naturally curious. And most kids know nothing about DS and other conditions that cause special needs. I've heard from children...."she looks scary", and "is Downs Syndrome a disease?". "How come she acts the way she does?". "It's good that she can talk at her age" (she looks younger than 5). "How come she talks funny?" "Is she going to grow up someday?" And sadder..."Desirae germs" from some really nice children. I've seen a cousin roll her eyes at my daughter. I've seen cousins come to her birthday party and not even acknowledge her presence.

Worse than the pointing and staring, is the not understanding that she is a real person who feels very strongly, and loves very deeply. So USE her as a teaching tool. If you want, you can ask me anything. You can say hi to Desirae, she would love it. Mom's with kids who have special needs want your children to be better educated on this subject. Better education means fewer "Desirae germs", and more real SMILES!

Dance recital

Last Night was Desirae's dance recital. It didn't go well. She did a few moves with her classmates at first, and then she took the feathers out of her hair and shook them during the rest of the her dance. When it was over, she threw her black feather hairpiece into the audience. Then she didn't leave the stage, she just stood there....waiting, I guess, for the boy who brought her feathers back to her, and the older dancer who took her off the stage. She was entertaining others said. There are days when I just wish she were more like her peers.

In these pictures, she has a cute little skirt over her leotard. But when mom wasn't available to keep her looking straight, she managed to mess it up.

Part of me thinks, oh, heck....go with the flow. The other part thinks "I should have" been in the back (instead of the audience) and made sure she understood exactly what was expected of her. I "should have" talked to her more yesterday about the dance. I should have glued her feathers in her hair! I can "should" all over myself when not accepting that God was in charge. Those feathers have been a problem since the beginning. Maybe next year we'll pass on the hair piece. Maybe I'll be working so there won't be dance next year! Sometimes it takes too much self discipline to make me make her do it!

After I wrote my last blog, it hit me.....that how as a child I was told our friend had DS because his mom smoked----so do people think that of me. It hit me like a ton of bricks one night after writing the blog, recalling a close family member grilling me on "what caused this" and a complete stranger asking me if I smoked or drank while I was pregnant. Of course I know what others think of me is none of my business, and I am powerless over what they think and their expectations of me. It just never really occurred to me that some people might blame ME! Most of what I get from others is so positive, it makes it easy to overlook the callous negativity of a few.

Thank you to those who send me heart touching poems about being a "special mother". And thank you to the complete strangers who think my daughter is adorable.

The fun of dance is not in the recital. It's in Tuesday mornings at practice. It's in the friendships we are making. It was so cute seeing Peter dance beside Desi, and you could tell he was trying to tell her to do the dance while he was dancing. At least that's what I saw at one moment. And, dancing is not all about performing....it's about having fun, and learning discipline.

Ever since Desi was a baby, she's loved song and motion. So, we'll continue with the dance because it's good for her. And for me.

On being a Mom of a Child with Special Needs.

Simply in choosing the title for this blog, I had to change it, because the first one was not PC. Desirae is not a "special needs kid", she is a "child with special needs". I'm pretty darn relaxed about the "language" and have caught heck for it more than once from other mom's of children with special needs. We learn that we don't have Down syndrome kids, but kids with DS. We don't use the word "retarded", but "mentally challenged". I've heard "mentally disabled" and object to that term, even though it's PC. When something is retarded, it means that it's slow. When something has been disabled, it doesn't work anymore. The new language doesn't always make sense to me.

Desirae has Downs Syndrome. It's also called Trisomy 21. She has an extra chromosome on the 21st set. There are many chromosomal abnormalities children can be born with, and Trisomy 21 is just one of them. It's not caused by smoking, drinking, or drugs during pregnancy. It is genetic, the luck of the draw, and the odds go up for older mothers. I was 41 when Desi was born. I grew up having a family friend with DS. It was speculated that it was because the mother smoked. We were so uneducated about this condition. We used the term "Mongoloid". Today, people gasp at that term. I don't. Some perfectly lovely people have told me what an angel my daughter is, and then went on to ask if she was a Mongoloid. How can you get angry at people who would refer to her as an angel, but be uneducated in the terminology of Downs Syndrome? So I struggle with being PC, because I know it's what the Downs Syndrome community seeks, but it's not high on my list of importance.

What is high on my list of importance is Acceptance by the community, and better education, more opportunities, more genetic research, etc. I recall parenting my son, who is almost 20 now. It's heart breaking when your normal child is left out. But, it's normal for a special needs child to be left out. My heroes are the people who remember to include my daughter and others like her. Those who might go out of their way to make her day. It happens more often than not, and usually by perfect strangers. I thank God for human Angels! It's not something you notice unless you are very close to a person with a disability. Some people look away because they are uncomfortable. When pictures are taken and posted, it's often that pictures of my daughter are not included. But on the other hand, the special attention she gets from certain individuals more than makes up for the ignorance of a few. Most of our interactions with others are positive and healthy. But, as she gets older, the negative interactions are increasing. Other older children have been seen rolling their eyes in response to her. I think it's sad that some parents don't use the moment to teach acceptance and tolerance.

I am grateful to have had a person with DS in my past. I was not afraid of the diagnosis too much. I had compassion for people with this condition. And I had taught my son to be compassionate to those less fortunate in all areas. However, what I am learning about myself sometimes, is not the prettiest. I've always put much emphasis on knowledge. The capacity for learning is bestowed by God, just like being pretty, or healthy, or strong, or tall or thin. I've had to face a prejudice in myself in this area, and I'm learning new stuff about accepting ALL others who are not the brightest people one might know.

I'm learning about "innocence". My daughter does some things that could be characterized as "defiant". "Don't get into Mommy's jewelry" and she does, and she's been told over and over and does it anyway. Along the same lines are "Don't touch the hot stove" and she does, and she gets burned even though she's been told over and over. And then, there's dog poop...."don't step in it", and she does, even though she's been told over and over. When you link all these things together, you figure out that getting into Mommy's jewelry is exactly the same as burning herself or stepping in dog poop. She just doesn't get it----yet. This has been a huge lesson for me who believes that every one does something for a reason or a pay off. The reason for touching the hot stove is curiosity. The pay off is getting burned? Logic doesn't apply! Consequently, I find it difficult to punish "childish things". So, I tend to reserve punishment for endangering herself or others. She loves to pick up her little cousin, and finds herself in time out. She runs away and gets a smack on the bottom. I've heard that "she plays you" and I'm learning when I'm being played and when I'm not. Now that she's 5, it's getting easier to tell the difference. I ignore her when I think the tears and complaining are not real.

But mostly, she's a very joyful person to be around. She adores other children. She gives great hugs. She is not shy. She loves to Party. Yesterday we attended a graduation party for a family member and today has been filled with her memories of yesterday. "It's Party time!" in her own words, because her parents are too old to say those words anymore. And we even heard yesterday that "it's Uncle Barry Time!". Her uncle is head injured and his capacity for knowledge is not great either. I'm thankful that because of my daughter, I can apply tolerance to her uncle as well. I'm hoping to be able to take this a step further to all of humanity....like the people who ride their bikes on the wrong side of the road....or the driver of the car who puts on his right blinker and makes a left turn. The lessons are great when you tune into people like my daughter, and the most wonderful people I know are the ones who see the worth in every child.