Live, Love and Laugh

by Gayla at Where Are My Angels.

Gayla and crew, 2008

I have 4 kids. My first, Chris, is not mine biologically. He was my stepson I raised from age 5 on. I consider him my son. His father is the biological father of my oldest two daughters whom both have disabilities. I now live with my second husband, my daughters Mercede 18, Cheyenne 16, and Aysha 4 ½ . I'm 40 years old and my husband is 29. He is 11 years younger than me and 11 years older than Mercede (I just find that funny). My ex-husband is not a very nice person and after 13 years of marriage I left him. My girls also had to go thru therapy for 9 months because of damage he caused mentally to them a year after we separated. He is now serving time for some actions he tried to take against us that my girls witnessed.

When I found out I was pregnant for the first time, I was very excited but very fearful of having a still birth. After I found out I was pregnant, I didn't buy any clothing for my baby and didn't get anything ready until the last minute. I was afraid to jinx things.

I got pregnant 4 months after my 21st birthday. I was young and had a 6 year old step son I was raising. I was excited to have a baby of my own to love and care for. I had a normal pregnancy and only one sonogram (they didn't call them ultrasounds like they do now) when I was 6 months along. It didn't show any problems but they couldn't even tell me the sex of my baby either.

At the end of my 8th month I had a feeling my baby was going to be born soon. Three weeks before my due date I went to my OBGYN for my regular prenatal visit. The doctor seemed very concerned about the size of my baby. She informed me that my baby seem to be measuring a lot smaller than it should be. She told me she wanted me back in one week for another sonogram. I was so shocked that I forgot to tell her I had been having some cramps off and on.

I went to work upset about what could be wrong with my baby. A friend told me not to worry that her baby was born small too and was fine. Later that evening I went into labor which lasted almost 24 hrs. On September 1, 1990 at 4:20pm my daughter Mercede was born, she was born on my 22nd birthday. When they laid her on my chest she was sticking out her tongue and was blue in color , almost the same color as her blanket. I asked the doctor why she was blue and he commented "She's like a chameleon; if she were on pink sheets she would be pink".

She was taken from me and went to the nursery. An hour later a doctor came in and rocked my world. He wasn't our regular family doctor, but the one on call. We had chosen a family doctor over a pediatrician; because we wanted our child to be able to go to the same doctor we all went to. At the time we didn't realize what a horrid mistake we had made. The doctor informed us that our daughter was showing signs of Down syndrome or mongolism. I still can't believe that in the 90's a doctor used the word mongolism. It brought back a memory of my childhood when my mom told me that my best friend’s sister was a mongoloid and that she wouldn't live long. I knew what Down syndrome was, there was no need for the other offensive term to be used. A good friend of mine had a son with DS and he often spent the night with us.

I later found out Mercede was on oxygen and they couldn't tell me why. I sat in my room without my baby and cried and cried for the baby I had expected but lost. I pictured this new child of mine in a plastic tent on oxygen the rest of her life. I was young and didn't know a thing about babies, especially medically ill babies. Seven days later I was able to take her home off the oxygen.

There was a lot of confusion of whether she had DS or not. The doctors were sure she did, but the nurses told me they didn't think she had it. I asked my friend to come over and she told me she was sure my daughter had DS. So then I accepted that and moved on. A month later the test results came in. My family doctor told me she had translocation 21. I asked what it was and if it had a name like Trisomy 21 has the name Down syndrome. He informed me that it didn't but that it could be inherited. He wanted my husband and I to have our blood tested. He also told me that my daughter would be like a child with DS. So I went to a book store and ordered a book called Babies with Down syndrome, and that is how I found out my daughter did have DS. Translocation 21 was one of three forms of DS. I called my doctor to tell him that she did have DS.

I was shocked and upset. I couldn't believe this had happened to me. I didn't really think of her as a child at first. The nurses didn't let me hold her. It wasn't until she was around 3 days old that I mentioned to my doctor that I hadn't gotten to hold her. He was mad at the nurses for not letting me. They told me I couldn't since she was on oxygen. He told me I could hold the oxygen tube up to her nose. Then she felt more real to me.

My husband was in total denial. He refused to believe it until we went to the geneticist.

My step-son was just happy to be a big brother and he was a great one....

Chris, Mercede & Cheyenne, 1992

Chris, Mercede & Cheyenne

A few weeks later we found out I was a carrier of the translocation and that I would have a 10% chance of having another child with Down syndrome. My doctor set us up with a geneticist.

When Mercede was two months old we met with the geneticist. He was a very cold person, when he told me about my chances of having a child with DS, he told me I would want an amnio next time so I could abort if the child had DS. I told him that my husband and I didn't believe in abortion. The geneticist informed us that our baby was still young and that we would change our mind. But I do owe the geneticist for one thing. He listened to Mercede's heart and noticed right off that she had a heart defect. He sent us to cardiology just a few minutes later. Two hours later we find out my daughter had a severe heart defect and would need open heart by 6 months of age. If we didn't go to that geneticist appointment, Mercede's heart defect may have gone unnoticed until it was too late to treat it. It is supposed to be routine for all doctors to order echocardiograms on all babies with DS because almost half of them have heart defects. We changed to a pediatrician after that.

Mercede, 1992

I coped by learning all I could, getting my hands on anything I could read. I didn't have internet until about 10 years later. I couldn't find much information before that about Translocation Trisomy 21. I'm one who gets over things quick and moves on. I didn't grieve long, less than a few weeks. So I really didn't need help with coping about her having Down syndrome. The heart issues were another story. They scared me for years.

Almost two years after Mercede's birth. I gave birth to another daughter with DS. Cheyenne also had the same heart defect as Mercede. We discovered her heart defect in my 8th month of pregnancy. It was an AVCanal defect. The same heart defect her sister had, and one that is very common in babies with DS. We then knew she had DS too, we had declined any testing, except for sonograms and fetal echoes.

Cheyenne & Mercede, 1994

Cheyenne, 1999

Mercede was hospitalized a lot as a child but now is doing well. She still has to have more heart surgery in the future to replace her mitral valve and she will always be on heart meds. But you would never know it to look at her. She loves to dance, she loves working out to Richard Simmons video's. She is active in pottery class also....

Mercede

Mercede, while my most annoying child (trust me, she is, lol) is also the one that doesn't take others for granted. Mercede loves to be around other people that she can help. Mercede has fed the sick and the dying and also cared for them. She has laid beside her great-grandmother (whom had colon cancer) and rubbed her head and spoken softly (which is a feat , if you know Mercede) to her during her Grandmothers last days. She will often tell you about feeding her Aunt Mary (whom passed of Alzheimer’s last year) and what her Aunt didn't like to eat. She will also tell you they are with Jesus now. Mercede had a best bud for years that she liked to sing to and dance with. Her friend had CP and was 20 years older than Mercede. Her friend could not talk but could smile and laugh. She smiled and laughed alot when Mercede was around. Then a year ago her friend passed on, it was very hard for Mercede. But soon there was someone else to take her place. A woman with Down syndrome whom also had Alzheimer's. Mercede could make her smile and laugh. There would be a light in her eyes when Mercede was around. A few months ago, Mercede also lost this new buddy. But Mercede moves on, as she knows they are with Jesus now. When Mercede stays with my mom, her favorite thing to do (besides eating potatos) is visiting the nursing home with my mom. When she talks on the phone to my mom she will often asked how someone is that she is worried about. She is also getting frustrated with me, because I keep promising her that I will take her here to visit some church friends in the nursing home and I haven't done it yet. She is also very spiritual. She will often raise her hands in praise in church and also cry when the mood hits her. I don't know how much she understands about God, but it is obvious she feels his presence. At the same time, she can spell t-r-o-u-b-l-e!! At home, she is obsessed with the bathroom and can't stand to have stuff on the sink. She is always hiding the hand soap and hand towels. She hides shoes all the time. You can fine one, but not the other. I will find them in my bookcase, out in our fishing boat. It took me a year to find the match to my favorite pair of shoes. She will argue about anything. If I give her something to eat, she will say "I don't want it, I'm full", So I take it away and then she says "Nooooooooooooo, I want to eat!" So I give it back and then it goes on and on this way til I am pulling out my hair. At school she behaves herself, but on the school bus....................oh my. She has a collection of bus tickets. Just a few weeks ago, she choked the bus driver with his seat belt while he was driving. Now she didn't actually choke him, but she did have it pulled around his neck and he couldn't get it off. Course she giggles like crazy thinking it is funny. She also threw his jacket out the bus window. This is one of her favorite bad things to do on the bus, throw things out the window. She is like the character from the "Problem Child" movies, when she gets on the bus. She will be 18 this year and is only 4'5". Since her open heart surgery (mechanical mitral valve put in) she has gained like 10 pounds and now weighs 82 lbs which is fat for her!! lol When we go out to eat, they still give her childrens menu's and "Hey, you can't complain about a cheaper meal". Now her big thing is scratch off lottery tickets. She loves scratching them off.

Mercede, 2008

Mercede was a huge Barney fan while growing up. Needless to say, a mom can only take so much. So I banned her from Barney. Mercede was so upset that she went thru all my videos looking for something she liked. Then in the corner cabinet, under five inches of dust, she found Dancing to the Oldies. For the next few years Mercede worked out with Richard every single day. During the summer she worked out 3 hours a day, while I laid on the sofa eating chocolate and cheese curls shouting "Go Mercede! Go Mercede!" She was his biggest fan........well okay, probably his smallest (wink, wink). To cut a long story short. I pulled Mercede from school so she could attend a Woman's Conference in our home town that Richard Simmons was going to be at. Surrounded by hundreds of large women (me being one of them), little, tiny, skinny Mercede worked out with them/us. She was near the front of the stage and Richard called her up on stage. Mercede was so happy to meet him! When she does that mouth open, eyes rolled up toward heaven look, you know that she is on super excitement mode. He pulled her to the front of the stage, and then Mercede lost it. She slapped him away. While we didn't get THAT photo, we did get the priceless look on his face after it happened.

Richard Simmons with Mercede & other adoring fans

If you ever meet Mercede, she will tell you her version of the story. It goes something like this......"I slapped Richard Simmon's and made him cry."While she did slap Richard, and while he did cry. It isn't a whole truth, since he was crying on stage about 15 minutes before she slapped him. But hey, her version makes for a better story.

Cheyenne, 2008

Cheyenne is currently not on any meds and doing great. I was so excited to give birth to her. Mercede was such a joy that I actually wanted Cheyenne to have DS too, and was granted that wish.

She watches a lot of TV. She can stay at home by herself. She is such a flirt and has been for some time. At times it is funny and other times disturbing. lol She comes home every day from school with a story about either "her boyfriend" or the boy she can't stand. Of course these are the same boy. Sometimes she will be so mad she will go into her room and slam the door and throw a book at it. My husband has been worried especially when she said this boy had pushed her, he told me I needed to talk to his mother. I have known this boy since he was a baby (he is a year younger than Cheyenne) and he like her, has Down syndrome. His mother started laughing, when I told her my husband says I should talk to her about it. She was like, "Has he seen my son?" Nope he hasn't. Her son is tiny compared to my girl. She is much taller and much heavier. Like she said, my daughter could beat her son up!! lol ( I do know that he hasn't hurt my daughter, as the bus driver keeps me informed).

Every year she attends a summer camp and there is always a "summer crush", it is normally one of her camp councilors also. I didn't get a picture the first time but did the next two times. She will keep the picture until the next one. lol Well his and Brad Pitt’s picture, and Omar Epps (from House MD). In the past she had a crush on my husband. Boy this was a rough one. My husband is her stepfather and when we were dating, you could tell she had a big crush on him. When we got married, then she was horrid to him. She wasn't very nice for the longest time. Then she had, wait has, a crush on my sister’s husband. That is quite funny, because she all but ignores my sister and everything is "Hi Matt", ""What you doing Matt" etc…. Now, the most embarrassing crush has now developed. Last week, I couldn't find her at church, then I turned around and there she was. I can read her smile and see her giggle. Darn it, if she isn't flirting with our minister. I have to look back on my crushes. There were several teachers and even a cousin! YIKES, but NEVER a minister, of course mine were all in their 70's.

In 2004, I gave birth to Aysha, my first child without DS....

Aysha, 2008

Aysha is a translocation carrier like I am, she will have the same chances to have a child with DS too. She has been a handful since her birth. She isn't anything like my other two babies were. I think the next time I have a child, I'll be hoping for another one with DS.

Mercede will probably never be able to have alone time, she is too trusting of strangers and also doesn't react to danger appropriately. Both she and I are hoping that we can find funding to get her placement with one of the organizations here in town where she could live in an home with a few roommates. I didn't know how she would do with a workshop but she is working in one in a work program at school and liking it. I know she will spend time volunteering in nursing homes, as that is one of her favorite places to visit.

Cheyenne I can see working doing cleaning work, she loves to clean. I see her living semi-independent, as she can now stay home hours by herself. I see her one day getting married (if she could settle on one guy, lol).



My advice to other parents is to live, love and laugh....

If that doesn't work, Xanax and Paxil are great!

I work for an organization that supports people with disabilities and have ran across so many wonderful people with Down syndrome. I think everyone has a special talent, you just have to look for their abilities not disabilities....

Bernadette Resha

One of my favorite artists is Bernadette Resha . She is a married woman whom has Down syndrome and is an incredible artist, among other things.

The Tulip, by Bernadette Resha

Her display of Art can be found here.

For more information about Down syndrome, go here.