Today I am not going to post any articles or recipes. Instead I would like to talk a little bit about something that is close to my heart. Five years ago I gave birth to a beautiful little bundle of joy. She had dark brown hair, blue eyes, 10 fingers, 10 toes, tiny little ears, a space between her big toes, a longer than average line in the palm of her hand, and a little button nose. Those last few unique characteristics are related to the fact that she was born with Down syndrome.

I found out that she would have Down syndrome when I was 20 weeks (5 months) pregnant. She was my third child and I was that magical age that the doctors start to get nervous about which is 35.  The doctors kept pressuring me to get tested to be sure I was not having a child with Down syndrome. I refused for the first 18 weeks. I decided that I loved the baby that was growing inside of me no matter what might be and had no worries that anything would be wrong anyway. At 18 weeks I went in for the regularly scheduled ultrasound that you get to ensure things are going well, the baby is developing on schedule and to determine the sex if you want to know it. I am a super impatient person so I of course wanted to know the sex so I could plan. That was my main focus of going in for this appointment I never once thought that something might be wrong.

The woman called us into the ultrasound room after what seemed like an eternity in the waiting area to me because they have you hold your bladder and UGH, I had to go! She was nice, asked all the typical questions about how things are going, were we excited, did we hope for a particular sex or not etc. I had only said I wanted to be sure that I had a healthy baby. My first child, a son, was perfectly healthy but my second child, a daughter, was born with a super rare disease called Biliary Atresia which causes the liver to become diseased and die and thus the person will die unless they get a liver transplant. This disease in not caused by anything the mother does, is not genetic and just has no known cause that science has found, just a wild fluke. My daughter had her first surgery at 5 weeks old to see if they could stop the disease progression of her liver but it failed and the disease progressed. By the time she was 7 months old she had a stomach that was 3 times the size of her head from the swollen liver and fluids coming off from it. We had to put her in the hospital because she was close to death that they wanted to put her at the top of the liver transplant waiting list. After not qualifying myself to donate part of my liver to her we thought it was the end for her life until we got that amazing call at 2:00 am. It was the greatest day of our lives and the scariest time of our lives.  It was quite a thing to go through but she has done wonderful ever since.

Because of the trauma we all went through with my daughter 10 years before I was worried that it would happen again (even though it never does according to science). I asked the ultrasound tech to look at the child’s liver to see if it looked normal even though this is not proven to be a diagnostic tool. I just wanted to get that worry out of my head so I could just focus on my healthy baby and start to plan if I needed pink or blue cloths. She said the liver looked
fine, asked us if we wanted to know the sex which of course we did. She told us it was a girl. Then she said she had to go talk to the doctor for a minute and would be right back, she took the films with her. That was weird. No other tech did that with my two children before this so that made us worry a little bit.

She came back in the room and said she needed to look at something again. She then said that she was sorry to say this but she was recommending we go to a specialist because with my age (35),  and her findings we want to be sure your child did not have Down syndrome or a heart defect. We asked her what findings she was talking about and she showed us that the nasal bone on our child was very very small and indicative of Down syndrome and that there was a little white spot on the heart that could possibly be a heart defect. She showed us both of these things and the white spot was noticeable but I could not see what she was talking about with the nose.

We left the office in shock and filled with worry. But for some reason I was not too terrified because I just felt like they were wrong and everything was ok. I made the appt with the specialist for a week later and we went in. They took us back to the ultrasound room where they had a more detailed ultrasound machine to check things out. The tech was a young woman who seemed much to young to me to even have a job like that. She did the same thing as the last tech did with all her checking the nose, heart and anything else while being completely quiet and not asking one question or even smiling or looking at us. She then said she would be right back and came back a second later with the doctor. He walked in, quickly introduced himself and then turned to the screen to have her show him some things. They mumbled a bit to each other very low and seemed very secretive. He then took over with the wand and started to very unemotionally explain that the last tech was right the nasal bone was very small and the baby did in fact have a heart defect. He also pointed out that their was a large space between the big and first toe on each foot and those things added to my age increased my risk of having a baby with Down syndrome greatly. He said we should come back to his office right away.

 

They had me stay in the little robe that was open in the back and walk down the hall to his office to wait for him.  We sat down in his office and again and when he cam in he was again very unemotional and seemed almost cold to me. I do not remember everything he said other than the things that stick out in my mind. He explained that I had about a 1-15 chance of having a child with Down syndrome but the only way to know for sure was an amnio. He said that we only had another week to know for sure because if I wanted to abort my baby legally in our state we needed to know ASAP. I could not imagine aborting a baby who was already 5 months old and was moving, kicking and growing! If we waited to long we would have to go to another country to abort but he could arrange it. He said having a baby with Down syndrome was going to be difficult. He said in the older days you could put them in an institution but now that is frowned upon so basically we were stuck with her forever. We would have to kiss our retirement years goodbye and know that we would be taking care of her until we died and then would have to rely on someone else to do it for us. He said some people with Down syndrome can get a job but the most we could ever hope for is for her to be a greeter at Walmart if she was lucky. Then he as
ked if we wanted the amnio.

I was in complete shock just sitting there crying listening to all he had to say. My husband was holding my hand but I felt like I was so alone and was floating in a horribly dense, thick fog and I had no control. He then asked me again if I wanted the amnio because we should do it now, today. I looked at my husband for what he thought. He was nodding his head yes. My husband was my second marriage and this was his first child. He had not had the experience of seeing his own child be born so he was more scientific about it and agreed that we should know now so we could make our decisions. I NEVER ever believed in abortion and still did not, at least for me. I felt so much pressure so I agreed and we went into the same room for the procedure. I still felt like I was in a great fog and could not stop crying. The young lady who did not speak a word to us before while she did the ultrasound just rolled the wand around on my stomach staring at me while I cried. The doctor stuck the needle in my belly and extracted the fluid. I was so angry that it did not really hurt but felt more like a deep pressure. I was so worried they would stick her in the head or something with that needled that I watched the screen very closely. That lady just kept staring at me and I felt like slapping her or even punching her, but I didn’t (now I think I should have ;-)).

One week later, the day before Thanksgiving, we got the results and they were positive. The lady on the phone was very apologetic and sympathetic and told me how sorry she was. At the time I felt sorry for myself too and cried for hours. I thought it was all over, that I was carrying a monster (because of how the doctor described things) and that everything that doctor said would be true for our future. I started to do research on Down syndrome and as I did I realized that people with Down syndrome are just that, people with Down syndrome. They have their own personality, temperament, likes, dislikes and even though they have physical traits of Down syndrome they have genetic physical traits of their family as well. They could walk, sing, dance, read, write, laugh, love, have jobs (and not just at Walmart for Gods sake although if that would make her happy then I would love it!), pay their bills, some people with Down syndrome even drive and get married. They just do all of these things a little slower than the rest of us do. I decided that abortion would not even be a consideration (just as it never had been for me before this). The more I looked at the pictures, watched the videos, read the stories of other families the more I saw the children and not the Down syndrome.

I continued the rest of my pregnancy as I had with the others but just doing more research into Down syndrome and what to expect when she was born. I knew she had a heart defect which is a fairly common thing with Down syndrome and I had read that they are usually pretty easily fixable and most people recover well. Not to say that open heart surgery is ever easy but at least it was fixable!

I went into labor at exactly 37 weeks and because I had had false labor a few times the week before and went to the hospital I ended up waiting to long to get my planned epidural. UGHHHHH that was the most horrible pain I had ever felt and her birth was pretty traumatic for me. I think if I had planned on a natural birth the pain would have been more tolerable but I had not planned it that way so the fear only made the pain worse.  But when they handed her to me and I saw that indeed she did have Down syndrome (you could see it in her eyes, the crease in her hand and the space between her toes) I knew that I had a precious gift in my arms and I was calmed. A soul that trusted me enough to take care of her and teach her and love her and I was happy. She was beautiful and sweet, and looked at me and my husband with trusting eyes. Although I was still a little sad that she did indeed have Down syndrome I knew that it was going to be ok.Kairi at birth

She had her heart surgery at 5 1/2 months old and had a complete repair. I can’t say that it was easy, it was pretty horrible actually but we got through it. She has some health problems that can typically come with having Down syndrome and ended up getting autism (I think from vaccines but that is a whole other story).  The road we have traveled with her so far has had a few bumps in it but it also has some great and joyful times too. She can have some pretty big attitude just like other kids can but she also can be such a sweet and loving person, again just like any other person.

I have another child now, my 4th, he is 3 years younger than she is, he is typical developing little boy and perfectly healthy. He and her are best friends and teach each other a lot of things. They give each other hugs and kisses and big bonks on the head too. They laugh, scream, and giggle with each other and are a great joy in my life. My daughter has taught me and my family to not judge so quickly by the exterior of people and to be more tolerant of the differences that we all have in us, whether they are noticeable or not. She can melt anyone’s heart within a few minutes of meeting her because she will just give you a big hug. That is not to say that she is the sweetest person in the world as many people mistakenly think of people with Down syndrome.  People with Down syndrome have ALL the same emotions as we do and are not always sweet, she is a kid just like other kids!   She has learned so much and is learning more each day. She knows about 150 sign language signs and can say as many words too. She is behind for her calendar age but right on track for her adjusted age. I have the same expectations of her that I do my other children (age appropriate) and know she will achieve all that she wants or needs to in her own time.world down syndrome day 2010

She will be starting kindergarten this fall and learning to adapt to the world around her. I am putting her in a
typical classroom with her typical peers. She will hopefully learn a lot from them and they will learn a lot from her. I know that life with her might be a little challenging but it will be filled with lots of love and joy too. Besides aren’t all kids challenging and can cause us to get gray hairs no matter if they are typical or not, I know my other 3 typical kids can be!  My life is not over because of her but is just on a different path than I had planned it to be on.  I do not regret that she was born or that we had to go down a different road.  I just had to learn to adjust to my new environment and role in life and now I welcome all the challenges, joys and experiences I will enjoy with her throughout our lives together.  If you have a child with Down syndrome you know what I am saying.  If you do not maybe you will see things a little differently when you encounter a person with Down syndrome.  And lastly if you are currently pregnant with or in the future have a child with Down syndrome you will be a little more prepared and know that it will be ok and that your life will be enriched by being blessed with such a child.Kairi's new brother

Today I wanted everyone to know a little bit more about me and to do that you need to know a little bit about my life and this is one of the many stories that go along with that. My story with Down syndrome is just one of thousands around the world.   The moral of the story, we are all unique but not all that different and that goes for people with Down syndrome too.  They are people first who happen to have Down syndrome.
Here are a few pictures of my little angel as grandpa calls her.

 

  

 


world down syndrome day 2010

   

Kairi

 

To learn more about down syndrome and World Down Syndrome Day 2010 check out http://www.worlddownsyndromeday.org/

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