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

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,
sara
http://lifewithextras.blogspot.com

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.

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: JudyLou22@hotmail.com

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 www.justinandkaren.blogspot.com

Ethan's Story

I was 32 weeks along when my OB realized I was measuring small, so he did an ultrasound and saw what he thought was some extra fluid in my babies stomach. This was on a Friday afternoon. He said, "I don't mean to alarm you, because this could be nothing, but I think you should see a perinatologist first thing Monday morning." Of course, we were alarmed! Monday morning came and the perinatologist found much more than extra fluid in his stomach. It turned out to be a bowel obstruction, two heart defects, and many other "red flags" for Down syndrome. The next day we went back for more testing and an amniocentesis. We had to wait for the results of the amnio until Friday the 13th of May. That was the longest week of my life! The unknown was so difficult for me! My husband was so sweet, he looked on the internet and said he had seen pictures of kids with Down syndrome and that they were so cute. Unfortunately, at that time that was the last thing I wanted to see. I pushed reality away for awhile. When Ethan was born I was honestly surprised when he came out looking like a perfect little boy, he looked a lot like his big brother! I think subconsciously I was expecting a little monster!
What a journey we have had since that wonderful day! I have learned and grown so much over these past few years so has my husband, our kids, our families, and so has Ethan. He is a joy to be around. He has a gift of bringing out the best in people. Everyone loves him and I am privileged to feel that love as well. We are often the recipients of random acts of kindness, genuine smiles and laughs from total strangers, the ability to instantly become friends with others in similar situations, etc. The list could go on and on. I will be honest, all this growing has brought about some growing pains, but I honestly can say I would never change it. I feel a greater sense of meaning and purpose in my life especially as I care for Ethan and my other children. While I am being honest I will admit that though Ethan came to this world looking perfect and angelic, he does has a little monster in him! I rejoice in it, because in so many ways, he is so normal! What three year old isn't a monster sometimes? I look forward to continuing this exciting journey in the world of Down syndrome. Ethan is full of surprises and so much love.

Sam's Story

Our story started out on February 24th 2007 when my husband and I were married. My husband and I were both previously married and he brought 3 kids with him from a previous marriage and he and I are raising 2 of them full time. I had placed my first child up for adoption after leaving a bad marriage. I was so happy to finally find an amazing Man to share the rest of my life with. He also wanted to have another child and I of course wanted one that I could keep and raise as my own. My pregnancy was a bit harder then the first one, I was sicker and also wasn't gaining much weight. Everyone kept commenting on how small I was. At my 35 week appointment, my OB told me that I was measuring about 4 weeks behind and he was concerned. He did a stress test and then sent me the next day to get an ultrasound from a Perionatalogist. At that appointment is when our lives changed forever. He said that he didn't see a stomach bubble and thought that this child would be severely retarded, either a Y18 or Y12 Chromosome baby and that we would be lucky if he lived a few hours let along a month. I remember my husband asking could he just have Down syndrome? I remember my stomach dropping and fear crept in and overwhelmed me. I thought no God, please no, not Down syndrome. It was as if to me, the other Chromosome's that he told us about, that were worse and more life threatening would be a better diagnosis then a diagnosis of Down syndrome. We then went over to the hospital so they could take our baby via c-section. Both my husband and I went numb, we didn't say much, we didn't show much emotion as we were just numb. They prepped me for surgery and all the family came down saying you never know, things might be okay and to just hold on. They took our little boy via c-section and he ended up weighing only 3lbs 15oz. They rushed him to the NICU with my husband, sewed me up and put me back in my room. I can still remember my husband walking into the room and telling me that he wasn't a Y18 or Y12 Chromosome baby but he had Down syndrome. At that moment my parents walked in and I crumbled. I started crying and couldn't stop. My Husband started crying as well and our parents were hugging and trying to console us. My Father looked at me and said Tausha, you have been given a great gift and blessing as this child has a very special spirit. The next few days were like a dream, I kept falling asleep and waking up and thinking I was in dream and thought, oh it will be over soon. My husband and I were just so overwhelmed and I think mostly scared of the unknown. I cried a little more the next few days but as the days went by and after I was able to see my little boy I was amazed at the love I had for him. Our little boy is only 7 1/2 months old but he has taught us more in the 7 1/2 months of his life then I have learned my whole life thus far. He is beautiful and has the sweetest disposition. He is always smiling and giggling. We have realized that even though there may be tough times ahead that we wouldn't change a thing. We know that we can do this and that we will love doing it. The older kids adore him and can't wait to get home from School to see and play with him, they love their little brother. He is a special gift that I am grateful we were able to have come to our home. I pray that many others will have the opportunity to learn, see and feel what we have been able to experience because of this sweet little boy who was born with a little extra something.