Friday, 3 August 2012

Ellie's Story

Written in 2009
Back in October 2004, my husband and I were both unaware that our lives were about to change and never be the same. Since this was our third pregnancy we decided not to find out the sex of the baby. We already had one of each so this time we wanted to be surprised. We still had the ultrasound and everything looked perfect. We were so excited to welcome our new baby into the world, whatever the sex might be.

The night I went into labor was different than the other two I'd had. I went into labor at 36 weeks. This was a little early but nothing to worry about. To tell you the truth, I was glad. I was sick of being pregnant. This pregnancy was a little harder than the other ones. I was sick for about twelve weeks. My other pregnancies I was nauseated, but not quite as much. I had two little kids and let’s face it: I was done. I was very excited to be in labor.

We had our beautiful baby in the early morning hours on October 2, 2004. The doctor announced, “It's a Girl!” I was shocked. I had been certain that she was a he. I had called her Jacob for the past 8 1/2 months. This was going to take some getting used to. We named her Ellie Ann. We both wept tears of joy when we looked at her for the first time. My parents were there to welcome her. They got in some good snuggles and headed home for some much needed sleep. We immediately called all of our family and friends to let them know our beautiful little girl was here.

When the pediatrician came in I was on the phone with one of my dear friends. He was checking Ellie out so I told my friend I would see her soon and hung up. My brothers had come to see Ellie for the first time. They hadn't been there for long when the pediatrician asked them to leave the room. He asked to talk to my husband and me alone. I knew this wasn't a good sign. I grabbed my husband's hand and we both waited for what seemed like forever. The doctor then turned to us and said "I have checked out your little girl and want to let you know she has Down Syndrome." I don't think I heard a word after that. My world just stopped. It stopped dead in its tracks. I thought to myself, "I can't have a baby with Down Syndrome. There must be some mistake. Doesn't God know I can't do this?" Thoughts like this were flooding my mind. After that I cried more than I have ever cried. I was scared – scared for me, scared for my other kids, scared for my husband, scared for our family, and most of all scared that I wouldn't know how to take care of Ellie. My mind was a whirlwind of emotion. I was all over the place. I was placed in a situation that I thought I wasn't prepared for, but I knew I loved this baby. Down Syndrome was for other people—not for me!

Now, looking back on that day, I can see so clearly that this child did nothing but change my life for the good. I was scared, but didn't need to be. Ellie is an angel in every sense of the word. She is caring, giving, spunky, naughty, smart, fun, playful, but most of all she has a gift to love without condition. She is one of the most loving people I have ever met. There isn't a person Ellie doesn't love. In the eight years that she has been in our family I have learned so many life lessons. She has made me a better person. I couldn't see my life any other way.

There are many hard things that come from raising a child with Down Syndrome. We have been through a lot with her. But all the bad is far outweighed by the good. Good isn't even the right word. There is something about her—it is like her love is tangible. You don't just feel it, her love encompasses you.

Before I knew I was going to be a parent of a Down Syndrome child I would have said, "I can't do that. It is too hard for me." I even thought when parents of Down syndrome children said it was wonderful they were painting a pretty picture of a rather bleak situation. I honestly thought they were saying that to make themselves feel better. With the increased knowledge and experience that I now have from being Ellie's mother, I want to share with you the joy you will have by raising one of these sweet children. I know now that YES! I can do this. Our lives have been blessed because of her. I am so glad that I am allowed the opportunity to raise Ellie, my sweet Angel. What a gift we have been given.

Tuesday, 27 September 2011

Jonathan's Story

My husband and I were thrilled at the news that we were expecting our first child!  I was 26 years old. The pregnancy was exciting, each change and milestone reached was noted and celebrated.  I had a wonderful doctor, and we leaned heavily on her advice, as this was my first time experiencing prenatal care.  Around 18 weeks, she suggested I do a triple-screen (now a quad-screen) blood test used to detect possible cases of spina bifida, Down syndrome, and another genetic defect.  She said it was optional, but recommended doing it as it could change where we delivered, or what medical personnel were on hand when the baby was born, etc.  At her suggestion, we agreed.  The test was done at approximately the same time I had my first ultrasound.   We learned we had a SON on the way, and loved getting our first glimpse of him!   A few days after the blood test and ultrasound, I received a phone call from my doctor.  She was concerned about the results from the blood test, which indicated there was a one in 30 chance that our little baby had Down syndrome.  While the news was definitely unexpected, I was a math teacher, and deal in numbers and percentages.  One in 30 meant to me that there was a 96.666666% chance that our baby was just fine.  She verified the date of my last period to make sure the calculations had been done accurately.  They had the wrong date and with the revised numbers, we were given a one in 100 chance he would have Down syndrome.  So that was better, right?  Now there was less concern?  Wrong.  Obviously those in the medical profession know more than I do, and it became clear that despite the numbers, my doctor was worried.  She told us to schedule a more detailed ultrasound with a paranatalogist as soon as possible.  I was approaching what we learned was the 21 week deadline if we were interested in aborting the baby.  Though that word was never used, my husband and I both repetitively felt the implied undertones in comments of the professionals we were working with. 

Nervous, and a little unsure of what was going to be found, the second ultra sound was performed.  This time, careful measurements were taken of our baby’s arm and leg bones, and his remaining body.  Measurement after measurement was recorded, and the heart was examined extensively.  In the end, the ultra sound revealed that the arms and legs were a little short in comparison to the rest of the body, characteristic of a child with Down syndrome, but this can be seen in other children as well.  His heart looked fine.  Where did this ultrasound leave us?  In the same inconclusive place we began, but with continued concern. 

We met with our doctor again.  She made it clear that the only real way of determining the condition of our son was to do an amniocentesis.  Without that test, we could speculate as to his health, but make no clear determination.  We made it clear to her that terminating the pregnancy was not something we were interested in doing.   The amniocentesis carries risk with it that was similar to our small percentage chance of having a child with Down syndrome.  Not wanting to put the pregnancy at risk, and knowing we wanted this baby regardless of the outcome, we opted not to do the test.  Our doctor respected our decision, and continued to provide excellent prenatal care.

We had the usual baby showers, and watched my body grow, still with excitement and anticipation, but also with an extra weight and concern from that time forward.  While we didn’t have conclusive test results, the worry never left me.  I can’t say that I knew for sure my son would have Down syndrome, but never felt like he wouldn’t have it, either.  I tried to speculate how we would respond to the news if he did have it.  My husband and I both said we would embrace the situation, and do all that we could to help our son reach his potential.   We could not fully comprehend then that he would be one the greatest blessings in our lives, and the lives of our other children.

As my pregnancy neared its end, I asked my doctor how soon upon seeing the baby would she know of his health.   She said she could usually tell immediately.   This question and response proved to be important.

While driving to the hospital to deliver my son, I told my husband I was nervous.  So was he.  But we would be okay, either way.  Jonathan was born on a beautiful Oregon morning exactly on his due date, after 31 hours of labor.  I had always envisioned the birth of my first child to be an exciting, joyful, emotional time.  I was undoubtedly thrilled at his arrival, but the first words out of my mouth after I heard his first cry and before my husband left my side to go be with the baby were, “Does he have Down syndrome?”  My husband left me and asked the doctor.  I heard her reply in the distance, “You’ll have to ask the pediatrician that.  I can’t give a diagnosis.”  Not, “no, he’s perfect…”  or even, “No, he’s just fine,” the responses we’ve been given by my Obstetrician at the birth of my three subsequent children.   No, we got the “You’ll have to ask someone else” response.  Based on this response, and what my doctor had told me earlier when I asked how quickly she could diagnose it, from the minute he was born, I felt like my son had Down syndrome.  I told my husband, “I think he has it.”  He said, “We don’t know that for sure, let’s just wait and see what they say.” 

We did wait.  We held our little guy, and loved him immediately, but also studied him and wondered.  Soon the geneticists came in.  Somewhere along the line of their many years of practice, they threw bedside manner out the window.  The one in charge stood in front of us and inspected my boy, my baby, commenting on thing after thing that just wasn’t right.  His facial features weren’t fully developed, his head was perfectly round in a Down Syndrome sort of way, his eyes slanted slightly, his first two toes were too far apart, etc.  His hands actually passed the test, as they had two creases instead of the usual one you find in children with Down syndrome.  But in the end, there were more characteristics present than not, and their official diagnosis was that he does have Down Syndrome.  Tears were streaming down my cheeks as I watched them inspect my beautiful baby, but they didn’t even compare to the tears that were shed by my husband and I as we heard their final diagnosis.  They left the room, and my husband climbed on the hospital bed and held me, and we just cried.  A good long cry. 

The weeks that followed were hard ones.  While my husband never cried after the hospital, I did.  Many times.  I was mourning and grieving the loss of expectations I had had for my child-things he would never become.  Looking back, I was irrational in some of my thinking as I dealt with my grief.  I also began to read.   I needed to start to form new ideas and hopes and expectations for my sweet baby.  Frankly, it seemed that as I read, the messages continued to tell me what my son was not going to be able to do.  I would read and cry more, as I processed and came to terms with what my son may be capable of achieving.  If only I’d read or been able to see the other side of the story.  If only I had understood the joy, and love, and blessing my son would be to me. 

Jonathan is in our family to teach us, and to help others he comes in contact with.  Not only has he far outreached the “limits” placed upon him in much of the literature and by society as a whole, he teaches me life lessons every day.  From Jonathan, I have learned what it truly means to love, and to love purely.  I have learned what it means to withhold judgment, to avoid prejudices, to be more accepting of one another despite differences.   I see Jonathan model incredible perseverance as he works to master new things.  While there are no doubt added challenges with Jonathan, there are blessings which exceed anything I could have ever imagined.  I am so proud to say he is mine.  I know I am a better person because of him, as I strive to be more like him each day.  He offers himself freely to everyone, be it the prisoner in handcuffs we are passing in the hospital corridor, a stranger on the street, or a good friend.   It is up to us to open ourselves up to what he is here to teach us.  I am forever grateful to have traveled the last nine years with Jonathan, and look forward to the journey ahead!  

Monday, 29 August 2011

A New Chapter...Teaching other kids about Down Syndrome.

Ellie has started 1st grade.  This was a huge thing in our home.  Preschool and Kindergarten were not such a big deal but this really has been hard on Mom.  It is weird to think she will be gone all day. Eating lunch with the other kids and going to recess without me.  One thing I did if Kindergarten to help me feel better was demonstrate to the kids what it is like to have Down Syndrome and explain to them a little more about Ellie and Down Syndrome. 

I found a wed site that had some great tips on how to teach about Down Syndrome.  It was a lot of help.  When I went I first had the kids all point out ways that we are the same.  Two eyes, two ears, legs and so one.  Then i had them point out ways we are different, Color of hair, color of eyes, color of skin, all brothers, no siblings, and so on.  Then we talked about Chromosomes.  I explained that Ellie was given one more.  This made her a little different.  We talked about the things that make Ellie different.  Then we talked about the things that are the same.  I told them she loves Hannah Montana and barbies.  I explained how she has feelings and they get hurt just like yours do.  It was actually really great.  We did an activity where each child put a marshmallow in their mouth and tried to talk.  It was hard for them to do and afterwards we talked about how talking is harder for Ellie just like it was with the marshmallow.  I had them lift a weight with one hand and the other had was free.  This showed them how moving is harder for Ellie.  I had them put a glove on and try and write.  This helped them see that writing is harder.  I explained that some things are really hard for Ellie to do but she tries hard everyday.  I also explained that some things are really easy for Ellie.  She is very flexible so I had her show them that she can pull her leg up.  They thought this was cool.  I also told them that LOVE is very easy for Ellie.  She has the ability to love beyond measure.  They also thought this was awesome.  When we were done I had the kids ask question or give comments.  One of the kids told me that they learned that Ellie is a really good friend.  This melted my heart.  It was a great experience.  It really helped the kids understand that she would need them to help her and be kind to her.  The school year went really well and Ellie had a lot of kids that were her friends.  

I wanted to share this with you in case you were searching for something to help teach about children about Down Syndrome.  I found this AWESOME coloring bookthat explains Down Syndrome.  I had the kids take it home and teach their families about Down Syndrome.  I had a mother tell me that she actually learned from the coloring book.  Another parent told me that her child was so excited to come home and teach her parents something they didn't know.  It was a really positive experience.  I am just about to go and do it again in her 1st grade class.  I know it helped last year.  I sure hope it is good this year. 

Wednesday, 29 June 2011

Fiona's Story

I know I was smiling as the doctor was speaking. My brain seemed to be on delay as the words came out of her mouth and I starred into the compassion in her eyes. "Something is not right with the baby's heart". (Subconsciously, I made note of the fact that she choose to say "the baby" and not "your daughter".) The smile didn't leave my face, although now it was there more from nervousness then joy.

My world stood still for two weeks. Floating threw each day with a hundred unknowns. Whats wrong with her heart? Whats wrong with her feet? Are there any other deformities? Is there an underlying disorder causing the deformities? Will she survive in utero? Will she survive her first year? For me, the unknown was scarier then the known. Give me an answer, any answer, so I can find a positive and hold on to it with everything I have.

Those questions got me asking myself a lot of other questions. Mainly, why me, why my baby? There was a war going on with my emotions between accepting everything and completely losing it.  I prayed for strength for my little girl.

The call finally came.

Down syndrome.

My baby girl has Down syndrome I said to my self, in my head, numerous times after that phone call. If I could have pulled her out of my stomach and held her, I would have. My thoughts were filled with conflicting feelings. Feelings that I don't want this road, but I want her. Hope that this was all a bad dream or a mistake. That we were the 1 in a million who's amnio results were wrong. This is not what I had wanted, but I wanted my daughter, that very baby inside me with an extra set of chromosomes. I wanted her so bad that the thought of her heart condition taking her away from me was unbearable. I was a lioness protecting her cub when doctors even started to go down that road of "other options". And those first few months of testing and monitoring, I had to go on the defense a lot. It was not only initially assumed that I would abort, but encouraged. Most of the doctors referred to my daughter in disconnected terms to me such as "the baby" "it" and sometimes a little bit more acknowledging as "she". "She" was my baby, my daughter, my little girl. Their choice of words did not go overlooked on how they felt about the situation. Neither did the comforting words of the few doctors who still tried to treat my pregnancy as something special. Who called my daughter by the name we had chosen to give her and cared just as much about my baby as any other normal baby.

Her Down syndrome diagnosis was painful. I had to mourn the death of the baby I thought was in my belly and reacquaint myself with the differences and challenges the extra chromosome brought. I set out to educate my ignorance in what Down syndrome is, what my daughter would be like, and what kind of potential I could expect.

More alike then Different. A mantra in the Down syndrome community. And that's exactly what I learned and have found to be true as my daughter nears ten months. The more I researched, the more I found that my baby was going to be... a baby. She was going to need to be feed and changed and loved. She was going to learned how to roll and crawl and eventually walk, just maybe not as fast as her twin brothers did. She will go to school-elementary, middle, high school and possibly even college. I found that her potential was very near the same as the baby I had originally imagined I was having- a 46 chromosome baby. My  47 chromosome baby was just going to need some extra teaching and a whole lot of love- I could do that.

The heart condition was classified as a text-book Transposition of the Great Arteries, Complete AV canal, and only one valve. Two months later that text-book TGA "disappeared". Doctors called it a fluke, I called it God. The condition that would require immediate surgery was no longer there. We were going to get to take our daughter home for a few months before her heart surgery. Her Down syndrome diagnosis was suspected to be a form called Mosaic Down. I am hesitant to say, a less severe form of it, because its not always, but in our case, our daughter falls on the extremely mild end of the spectrum. Doctors called us lucky, I say we would have been blessed no matter how severe our daughter was.

Some days I was stronger then others. Most days, I cried. But as the months progressed, the tears changed from tears of mourning to tears from anxiety. I needed my baby to be in my arms. To see her face, feel her breath and to see that she was okay.

Fiona Hope Blaeske was born August 16, 2010, with a medical team prepared for the worst. But to every ones relief, she was better then anyone had anticipated. Her Down syndrome characteristics were so mild it had us questioning the diagnosis. And with the right concoction of meds, we were able to wait until she was 5 months old for her heart surgery , which was successful.

Her clubbed feet, that I was so terrified I wouldn't be able to look at the deformity, I couldn't get enough of. Now that we are fixing them, I miss the way her tiny baby feet could tuck up under her so comfortably.

She is a little bit behind for her age, mostly because her heart made her so weak for the first 5 months of her life. She doesn't just do stuff on her own, it takes teaching her and working with her, but eventually she gets it. And by teaching, I mean playing with a purpose. The early intervention state programs are amazing, and free! We get all the therapy we could possibly need through the state. Ours even comes to the house!

When ever I am looking at my beautiful daughter, I often think about the doctors who encouraged me to terminate. Its a rush of anger and sadness that over comes me. Anger that anyone would want to "get ride of" this gorgeous, incredibly strong baby. Sadness that they are ignorant about how wonderful the road less traveled is. And that they are ignorantly giving advice to scared mothers and fathers.

I know that my daughter is very well off compared to a lot of people with Down syndrome. But since she has come in my life, I have met lots of amazing people that fall all over the grand spectrum this disorder has. Their lives are challenging, but far from tragic. Because they make such positive impacts on everyone around them. Their parents all seem to be in agreement with us that the good parts completely out weigh the bad parts.

At Fiona's recent well visit, I filled out a development questionnaire. An are they doing this yet form. I checked off one Not Doing Yet box after another. But when it came down to the last two questions I was surprised with my response. Do you have any concerns with your baby? and
Are you having any problems with your child? My answer to both was NO.

I am not concerned with anything Fiona isn't doing yet. Because I know she will. And I am not having any problems with my daughter, she is amazing and motivated and setting her own standard of normal. This is what I wish I knew when I first got her diagnosis. I wish I could have tell-a-ported to this exact time and saw how content I was with this pace of life. I posted about using the "R" word a little bit ago. It comes from the Latin word, ritard, a musical term meaning to slow down. A beautiful slow down of tempo. That's what life with Fiona is like, a beautiful slow down. When people see how tiny she is and guess that she is only 3 months old (shes 9 months), or when she needs a little extra help learning something new, I am enjoying this slower pace of growing up. The tortoise wins the race. I know at some point, the gap will grow bigger, and my baby possibly may never be, say, a bio engineer or the first woman president (but, then again, I am not going to limit her potential!), but I have no doubt that my daughter will be a valued member of our society, the light of any room she walks into, and I couldn't ask for more.

If you are an expectant parent, scared of the future, trying to find hope, you will find it here- in the blogging community. It is what opened my eyes to the beauty of these kids, these people. You will find open, honest, but mostly beautiful windows into how blessed your life will be with that extra chromosome. I know that you may be looking at my daughter and thinking, "Well, she ended up with the best case scenario, but there is much worse" and you are right. But keep looking, because you will find even the worst are unbelievably blessed and beautiful and loved. I am not a special person to have a child with Down syndrome. I am no super hero or mother of the year. I just love my daughter.

Other source of comfort- National Down Syndrome Society's My Great Stories
Read Fiona's My Great Story HERE

Friday, 7 May 2010

I am looking for Stories

Hey all my wonderful followers. I need stories. If you know anyone that would like to put their cute child's story on here I would love to share it with everyone. Just email me at or leave a comment. Thanks for your help. Hey, there might even be a surprise to those that are willing to share or who find someone to share:) How is that for a bribe.

Monday, 12 October 2009

Malachi's Story

Malachi was born July 6, 2008 2 months early. My husband and I were busy going about our lives and getting ready to become foster parents. Thats when we got the call. A call that changed our lives for ever. Malachi was born to a mother who was unfit to care for him and DCFS had taken custody. Malachi was still in the hospital (he was there for the first 4 months of his life) and fighting for his life due to a host of medical issues. He was born exposed to cocaine, he was 2 months early and mom had no prenatal care. He was in heart failure and required and oxygen hood, he had 2 holes in his heart and only 1 valve and he also had Down syndrome. When that call came we didn't know what to say. We took a few days and decided that if God was calling us to be his parents, we had to obey. I still remember the first time I met Malachi. It was love a first sight. He was absolutely perfect. I didn't see Down syndrome, I saw a boy who God so graciously gave to us to love, perfect in every way and I couldn't wait to share him with our family and friends. Unfortunately, they didn't all see what we saw. They were fearful because they simply didn't know. A few people told us they didn't agree and that adopting Malachi was a mistake. Boy were they wrong. Soon after Malachi was placed with us he needed open heart surgery. It was a rough few weeks, but we made it through and we brought home a healthy little 7 month old who was full of life. We started to see his personality come out and my husband and I started to learn from him. We learned life lessons, we learned how to truly laugh, how to have faith like a child and most importantly we learned how to love unconditionally. Today Malachi has brought our family closer, I can see the extreme love and joy he brings to everyone he meets. There are still a few people who are fearful, but I know that with time Malachi will melt their hearts just like he did ours.After all, how couldn't you fall in love him?

Erin, Josh and Malachi

Thursday, 17 September 2009

Max's Story

our story.... its a long one.
i guess it really starts back with my first baby, nick and i had a miscarriage with our first baby. so that pregnancy was short but still very difficult.
then my pregnancy with lilly we saw a specialist for her because they said she had two cyst on her umbilical cord, which can be the cause for many major health defects... Down syndrome being one of the good ones. so for over a month of lillys pregnancy i really was just scared for her life. when lilly was born the only health problem was two dislocated hips (at that time seemed like such a big deal.. only if i knew then what i know now.)

now onto max... i had bleeding in the beginning, and i thought that i was going to loose him too(like our first baby). they started me on some type of med to make it a "better environment" for him to live in. the bleeding stopped and i felt for a month or so that everything was going to be okay. we went for his 3 month ultrasound and they said he was measuring small. i didn't know what that meant...i felt like i was doing something wrong maybe his "environment" still wasn't good. we saw a specialist for that and we continued to see him every two weeks till max was born, with the test that he did, he didn't see any other physical characteristics of a baby with Down syndrome. besides the small size. i didn't see the point in having an amino test done due to the higher risk of miscarrying, nick and i both felt that either way this was our baby.. i could never abort my child, disability or not. the dr. also started my on a high cal. diet:( that's seems to still be with me today. when i was around 35 1/2 weeks i was having trouble feeling max move and my dr. was getting concerned due to his small size that their would be a higher risk for a still birth. just thinking that could have happened makes my stomach turn. well i had to stay in the hospital on bed rest for 2 1/2 weeks. it was really difficult since nick and lilly we're home and i would only see them once a day for a hour or so. we took a tour of the nicu because this whole time we thought max was going to be this little itty bitty baby. we were scheduled for a c-section on friday morning but max being max he came thursday morning 1:20 am Nov. 20. big surprise to my husband when i called to have come to the hospital "we're having a baby" in the middle of the night. it was all very exciting and scary at the same time. max was 20" -- 6 lb. 11 oz.
when max was born i was so sick form the pain medication i didn't get to have that instant loving connection that i had with lilly until 2 or so in the afternoon, i still feel really bad about that.
a pediatrician came in that morning and told us that they were going to be testing max for down syndrome, i was still so sick that it didn't really hit me what she was saying, after she left nick was holding him and started to cry (that was the only time i saw him cry for max) i could just say if max has Down syndrome, then that is who he is and there is nothing that could ever be wrong with that. the medications made me have no emotions, it didn't sink in till the they wore off in the afternoon... it hurt.
for the whole 3 weeks i lived at the hospital i only had one bad experience with a nurse, she came in the day after max was born and said oh i saw that you had your baby,(i was holding him) i said yes isn't he a beautiful baby boy! she responded "oh they told me that he has Down syndrome." i didn't know what to say..... i just said "yes.. but that doesn't mean he is not a beautiful baby." all i could think.., is that the way the world is going to treat my baby? (now,.. i know i was wrong)
we didn't find out about the test results till that wednesday, the day before thanksgiving. finding out was heartbreaking, i was sad for the dreams i had for my little boy and i felt bad for that, i felt i shouldn't be feeling that way, i should feel like what i told nick at the hospital. and its taken me till now to truly be okay with it, not that i don't cry every once in awhile because i would be lying if i said that. but i love him and lilly with all my heart, and i just want them both to be happy and health. and we really are blessed with that, besides a low white blood cell count for max, my children are happy and health. i know how lucky we are, i don't take that lightly.
life has for me as a mother changed the day max was born, i feel like i have become a much more compassionate person. less judgemental of things i do not know or understand. i am able to see some of the things i feared at first for max was just due to being uneducated on Down syndrome.
i thank max for my life now, without him i would not be the person i am today. i would not know or have met the families i have come so very close to.

one of the luckest moms in the world,

Saturday, 4 July 2009

Jackson's Story

We had been trying to get pregnant for quite awhile with no luck. The day we found out we were pregnant was one of the best days of my life! After the fifteen-week blood work, I got a call from the doctor saying that the results showed there was a chance the baby had Down Syndrome. She told me not to worry, though, because these tests were almost always wrong. I guess I was the exception. At our appointment for the ultrasound we found out that we were having a boy and that he had most of the indicators of Down Syndrome. While still in shock, we had an amniocentesis done to know for sure.

The drive home was a blur. We both cried the whole way home and continued to cry for the next couple days. It was a feeling of shock, anger, frustration, and fear. We had tried for a baby for so long and then the baby we had planned on would never be. We didn’t know anyone with Down Syndrome and we didn’t know anything about it. Our family was very supportive and I did a lot of research the next few months. I can’t say that we were ready, but it helped us to be more ready for this little guy to come.

After an INTERESTING pregnancy, Jackson was born on September 17, 2004. He was a very sweet, but very unhealthy, little boy. The minute I laid my eyes on him I loved him to pieces. Jackson ’s doctors were not always positive, but he was a fighter much like many other kids that have Down Syndrome.

Now at 4 years old you would never know the struggles he had at birth. He is the sweetest little boy you could ever meet. He can be a challenge, but what kid can’t? He loves to tease, and has a giggle that you can’t help but smile at. He is the calming influence in our house, and with two little brothers we could use a few more of him around. My husband and I always think back to those few months of not knowing what to expect and feeling sad that we would not have a normal child and think how CRAZY we were. He has brought so much love into our lives and to everyone that comes in contact with him. We are awed that we get a chance to have this little guy.

When you find out the news that your baby will have Down Syndrome it may be the scariest news of your life, but then when you have them around you can’t think what you would ever do without them! Your perspective on life completely changes and you realize what is really important in life. You also get to join a very neat club of families who also have children with Down Syndrome. All of these families get to share the challenges and joys that come with a child with Down Syndrome.

Wednesday, 13 May 2009

Benson's Story

Hello :) I am sharing my story in hopes that the 90% Abortion Rate in babies with Down Syndrome will shoot WAY DOWN. I think you'll find my story very interesting and worth reading... The day before my wedding, we found out that I had Thyroid Cancer. They wanted to do an emergency surgery the next day (in which i talked them into waiting till after my honeymoon.) I had surgery where the Surgeon, Dr. Archibald removed my entire thyroid. We waited a month and did a full body scan where they found that the cancer had spread to my left lung (4 large tumors). So I had to do radiation treatments over and over. I remember the Doctor asking me if I was allergic to anything... I looked at him and screamed, "YES! CANCER!!" He laughed so hard! It took a lot of stress off me, Dan, and the Doctor. :) I'll tell you what... Even with being sick and weak all the time, being on a yucky diet, loosing hair and my eye lashes, etc... the hardest part about having cancer was that we weren't able to have children and start our family. We soon found out that due to this cancer, we would have only a 5% chance of ever getting pregnant. So we went on living our lives the best we could. I remember Praying to the Lord, begging him for a child. I said, "If you just give me a baby, I will teach him the gospel plan better than anything." Come one year after becoming cancer free, December 12, 2008, I got a call from my Dr. after having my yearly check up stating that everything looks good and... I'm PREGNANT! I cannot explain the JOY in my heart and soul. At first I did not believe the Dr. I screamed and jumped up and down crying with happiness beyond belief. Little did I know, it would be HIM (my baby) teaching ME!! The pregnancy went very well and I got all the blood tests done to check for Birth defects, etc. Everything showed up healthy and normal. (No Birth defects such as Down Syndrome, etc.) My due date was August 17, 08. Little did I know, my son would choose to be born 3 weeks early. July 31, 08 Benson David McKenzie was born into this world. All my life I expected the Dr. to put my BABY ON MY CHEST right after he was born (for the whole bonding moment.) Well, that didn't happen and I was so confused as to WHY the Dr. would not give me my baby right away. Now I know... He didn't hand him to me right away because he noticed that my baby boy may have Down Syndrome and the natural reaction for a Mother would be disappointment and the bonding moment on the chest would turn to the mother REJECTING her child. (Subconsciously.) If only the Dr. would have known that It was DIFFERENT in my situation. All I wanted was my baby. I did not feel shame or disappointment at all. I just wanted to hold the 5% miracle baby I had just carried for almost 9 months. 20 minutes later, I got to hold him! Aww, I was so relieved. Yes, I was concerned about him having Down Syndrome in the way that I hope his health will be alright and he'd be as healthy as possible. But he HAS Down Syndrome, he ISN'T Down Syndrome. He is a Human being and a perfect one at that, a part of our little family. He was born with a hole in his heart and was on Oxygen for the first 6 months of life. He is doing great and is so happy and full of life. I think he's only cried about 5 times in his entire 9 months of life! I got lucky with that ha ha! I'll tell you what, these past 9 months have been the most wonderful, rewarding, and growing experience of my entire life! I am truly the most blessed Mother on this whole earth! I wouldn't have Benson any other way. There is definitely a DIFFERENT spirit about those who have Down Syndrome. Every person I've seen with DS is the happiest, most loving human being on this earth. This world NEEDS more people like them. If we were all like them, this world would be PERFECT. Everyone would love each other, be as innocent as a child, and there would be no sin or contention among us. Hey, that sounds like HEAVEN. That right there tells us all that they are perfect human beings sent here to help and test US. We as parents don't need to feel shame if we have a child with DS. We should feel BLESSED if anything! There is nothing wrong with you if you have a child with DS. If anything, there is something AMAZING about you. The Lord CHOSE and trusted you, that very baby CHOSE YOU to be his or her parent. It is truly a gift. One day, about 2 years ago, five months before I became pregnant, I went to one of my church meetings, and there happened to be a neat program that day... A whole choir full of people with disabilities (or as I would say, DIFFERENTLY-ABLED :) sang on the stand. The songs of course weren't the average sounding sounds we like to hear, they were BETTER. SO SWEET, I cried the whole meeting and fell completely in love with all people with special needs. Right then and there, I turned to my Mom and my husband and said, "I feel like the Lord would GIVE me a child like them because of how much I love them and the Lord knows how much I would take care of them." Little did I know, I was RIGHT!" :) Hey! I had a dream 3 days in a row that my next child is a girl and she has Down Syndrome. I wonder if that is true because lately, everything has been happening like that. Boy would I be overjoyed if it were true.I want to share a little story of when I was 14 years old. That was 11 years ago... I went to Mutual (a young woman's organization in the Church of Jesus Christ of Latter Day Saints.) We went to a house that was full of people with disabilities. (Mostly DS.) All of a sudden, everyone was gathering around the piano and I heard someone yell out, "Come listen to Steve, he's going to play the piano!" Steve was a 40 year old Man with Down Syndrome. We all gathered closely and awaited the sweet piano playing. (Speaking of ASSUMPTIONS...) I was very much assuming I'd be hearing something that of a 4 year old child playing on the piano. Boy was I wrong! This man started playing a song called, "COLD AS ICE." by Foriegner. It sounded PERFECTLY AMAZING. That isn't the best part... He started to SING it... The room was SILENT (except for the sacred piano playing and Steve's voice.) His voice was loud and strong and sounded as normal as normal could be. He actually sounded just like the actual singer who wrote it. I bawled my head off. It touched me more deeply than anything I had ever felt in my entire life. I loved that Man, wanted to KEEP him, and would never forget him. What an inspiration. My Dad Gordon and his Japanese wife Terumi have a child with DS (Ty) or in Japanese, TyCHAN.
This is a picture of TyCHAN and his twin sister.

He is so cute and funny and of course always happy. Why WOULDN'T we want such a happy soul living in our world, or better, in our HOMES right there with us!? Some people aren't lucky enough to even be able to HAVE children. Let us give these children with Down Syndrome a chance. Give YOURSELF a chance! A chance to feel the amazing blessings that come from having a child with Down Syndrome. If we're too selfish or stressed, whatever it may be, to give birth to and keep our Down Syndrome children, the least we could do is have the baby and give it up for adoption. There is an LDS Adoption Agency that is amazing and you get to PICK who the parents of your child will be. If you google LDS Family Services, you should find it, otherwise ask me and I'll get you more information. Don't MURDER them by abortion. There is a 90% abortion rate, or should I say 90% Murder rate for Babies with Down Syndrome. It makes me sick to my stomach and I hope we can all do something to help change that rate. Heck, I'll even adopt the baby from you and you can know for a surety that the child will be very well taken care of and have the best life you could imagine! Please have a heart and try to have faith that it WOULD be a blessing to have and keep your child, or at least let them be a part of this world with another family who WANTS a baby that maybe wasn't able to have children. If you are in this circumstance and would like to adopt your baby out, please contact me and I'll either adopt he or she from you or find an amazing home for your sweet, perfect baby... Thanks for taking the time to read this
- Blessed Mother of a Baby boy with Down Syndrome - Judy Murdock McKenzie EMAIL:

Wednesday, 29 April 2009

Heidi's Story

Being a young 20 year-old mother and expecting our first child, I was excited about the potentials of what being a mother was going to be like. We had fun knowing that we were expecting a little girl, and we started choosing out things that the babies room was going to be like. We picked out the crib, baby blankets, clothes, shoes, etc.
We went to the prenatal classes, where, we learned about the stages of labor, babies development during pregnancy, strategies to relieve pain, etc. and were just so delighted from the friends that we made there. We were also impressed about how well the educator knew, and what ideas and impressions that she made as we were learning about becoming parents.
As our pregnancy went along, we were asked the question whether or not we wanted an amniocentesis done to test for Down syndrome, spinabifida,etc. Thinking nothing of it, I said I didn't want them sticking a needle in by belly, and that I would love the child regardless.
I went into labor on a Sunday afternoon at 2 p.m., and it being our first pregnancy, didn't know that I was in labor. After being in pain for so long, I told my husband Justin that I wanted to go to the womens center at the hospital that I would have the baby at and get checked out. When I got there, they stated that I was dialated to a 6, and that the baby was currently in the breech position (I know this because her head was right under my rib cage and I couldn't breathe!) and that we had only a few minutes to get her out because she was starting to breath wrong and that she could start going into stress. They did an emergency C-section and had her out within 7-10 minutes.
When Heidi came out, she was so beautiful. I saw my husband hold her for the first time and she looked so frail and breakable in his strong muscular arms.
They whisked her away because she wasn't getting enough oxygen. (She needed oxygen the first two weeks of her life.) They never took her to the NICU, but had her under constant watch and care.
A few minutes after her being born, (I was being stitched up), the social worker came in and requested that she talk to us. At first I was alarmed. What could she possibly want to tell us about our baby? What was wrong with the baby? A lot of thoughts ran through my head all at once. Thinking the worst, I didn't know what to expect. I first thought that my tiny daughter, who weighed 5 lbs. 15 oz. and who was 20 inces long had stopped breathing.
We were both told at the same time that she was showing signs of having Down syndrome. At first I was shocked at the idea, but having a cousin with Down syndrome lessened my fears because I had been exposed to it a little throughout my life. What I was worried about was what my husband was thinking. I have to say that the emotions the first two weeks of having our beautiful daughter was unexplainable, even so that I cannot write it down on paper.
At first I thought that I had done something wrong. I was wrong. I thought it also very strange that I was so young to have a baby with Down syndrome. I mean....didn't that only happen to women who had babies when they were a little bit older? Apparently not.
Justin and I went to genetic counselors, where we learned the genetics and what had happened during the development of our daughter when the genes were split.
We were introduced to Early Intervention and the Social Security Administration, and the Disability Services. All of these things came available to our daughter, who at first, I thought I didn't know how to help.
But through loving family members and friends, we were loved and we knew that our daughter was loved. We have been through so much with our daughter Heidi.
Heidi had surgery at Primary Children's Medical Center in Salt Lake City, UT where she had three holes in her heart which were repaired through open heart surgery, a PDO, PDA, and VSD. She still has mild pulmonary hypertension, and we take her in every year to make sure that everything is okay. She had double aspirating pneumonia for sixteen days in March and April 2008 and shortly while we where there she was diagnosed with dysphagia, a swallowing disorder in which she cannot swallow regular thin liquids like regular milk or juices. We thicken her liquids as part of her special diet.
Heidi has brought so much love and affection to our family. She also has brought us great joy, insight, and peace into our lives.
You can learn more about our family by visiting