MOSAIC MOMENTS

I have said many times that Family isn’t just who you are born into, it is who you meet along the way. Family is someone who you share with, you laugh with, you celebrate with, and you cry with. Family is someone you can lean on when you need a shoulder, and someone you know you can depend upon to be there with you for not only your happy moments, but also the most devastating.

I am fortunate to have a family of 1000+ through International Mosaic Down Syndrome Association as well as the entire Down syndrome and mosaic Down syndrome community.

Last October, I told you about one of our family members, Gideon,  in my 31 for 21 series. Gideon was born with mosaic Down syndrome. You can read that story here. 

We all fell in love with Gideon and his infectious laughter and sparkling eyes! Our family began following Gideon and his milestones through the Youtube channel his mom, Marriah, set up to chronicle his life.  You can see all these videos by clicking here.

Then, in March, Gideon took his first steps and there was a shout of triumph throughout the world among our family because like all families, we rejoice with every step, no matter how big or small. You can read more about that here

Just weeks after Gideon’s first steps, he was admitted into the hospital with heart and lung complications. Gideon’s heart problems were more complicated than typical heart problems associated with Down syndrome. He had several heart surgeries, but continued to struggle.  You can read more about that here.

Since this time we have all been holding our breath and saying our prayers for Gideon and his mom Marriah.  Gideon has had quite a battle in his two years of life. And although a Mighty Warrior, Gideon decided that he was through fighting this battle. 

Together, our family is grieving the loss of our mighty warrior, Gideon. On Oct 7,2009, sweet little Gideon got his angel wings. As a family, we are all grieving. Not for Gideon as much as for Marriah. God has a plan that sometimes there is just no way for us to understand. I am glad that we had Gideon to show us what mattered most in the world, if only for 2 years. For such a tiny little warrior, he had the power to make a difference in hundreds of lives and we are better people for have knowing him. 

Our thoughts and prayers are with Marriah and the rest of their family. We are hoping to set up a donation fund for them, so you can help Marriah with expenses. I will be posting that as soon as it is available. 

I believe that everything happens for a reason and that God plans special babies for special parents.

In 2007 Scott and Beth celebrated their marriage in a very special way. Beth is a Special Education teacher and her friend Kristen was going to school to be a Genetic Counselor. Kristen also served on the Board of Directors for International Mosaic Down Syndrome Association . Because of these special bonds, Beth and Scott decided that instead of party favors for their wedding guests, they would donate to IMDSA on behalf of their guests. We at IMDSA were thrilled to be a special part of this very special beginning in this wonderful couple’s life.

Scott and Beth were eager to start their family and after two unfortunate miscarriages, Beth discovered that she was again pregnant this past winter. With a little apprehension, they held their breath as they watched their baby’s heart beat through ultrasound pictures.

They were thankful that their baby’s heart was beating strongly! Then, the news came that their baby probably had Down syndrome. Scott and Beth cried, but only for a little while. They were no strangers to Down syndrome. Beth was a Special Education teacher and knew children with this extra chromosome. 

Quite soon, Beth and Scott began a blog about their pregnancy and named their new baby boy Elijah Timothy. 

Time progressed and they discovered that little Eli had a heart problem. “Just an AV, nothing we can’t handle” was Scott’s reply.

More and more people began to follow their blog and then their Facebook page as well. Elijah had touched hundreds of people’s hearts before he was even born!

In July, Scott, Beth and Eli’s grandparents joined us in Cincinnati for IMDSA’s Research & Awareness Conference. Soon after, I received a message from Eli’s grandma on behalf of little Elijah.

To All

I have just returned from the Conference in Cincinnati and I would like to thank you and your entire group for the wonderful conference you had.  I learned so much and would like to take this opportunity to thank you on behalf of Eli (due in August.)

You have helped my mother, father and my grandparents so much.  Now they will have the knowledge and insight to know what I am capable of.  I have learned how to develop into a great person.  I can now eat, drink, sleep,not get lost, be safe in my home and not wander off, and best of all they will have insight from the benefit of your conference to know what I can and will be able to do.

I have wonderful parents and they are doing everything they can to make my life better. 

So please know you and your volunteers are the best.

Thank you again

Eli Miller  D.O.B.  08/25/09

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Two days ago, Beth wrote a very touching letter to her son …………………

Dear Elijah,

We are finally at the end of the pregnancy and you will be here in two days! These past nine months have been very long for daddy and me because we want to meet you so badly. I can remember how scared we were when we found out we were having you way back in December, but it was a great Christmas present! In January, we got to see our first picture of you. There you were on the screen. We all thought you looked like a little mouse in there. You continued to grow and get bigger! February 13th we learned that you had Down syndrome. From then on, Daddy and I did everything we could to learn about you. We met so many great people who are also excited to finally meet you. You have become one famous little boy!

Elijah, I promise you that we will do our best to make your life perfect. You have a lot to learn about including learning how to fish, ride a horse, play football, and root for UK basketball. There is a song that I teach the children in my classroom. It is called “I Can Do It!” Sometimes I sing it to daddy to irritate him. He hates it when I sing my classroom songs to him! Anyway, the song lyrics go, “I put my heart and my mind to it and I can do it”. I never want you to forget that. I never want you to think you can’t do something. You can and will and daddy and I will be there to cheer you on the whole way. Sometimes things may not be easy, but if you keep trying, you can achieve anything. Daddy and I have so many dreams for you. Most of all we want you to do your best at everything, be happy, be the best person you can be, and to show others that it is OK to be different.

Your time is finally up as you have proven quite stubborn about being born! Tuesday is going to be a long day for both of us. I can’t wait to finally meet you. I am also a little sad that I won’t have you all to myself as I have for nine months. Daddy says he is not going to ever put you down. You will have so many people wanting to hold you. I don’t think you will ever have to sleep in your bed! I want you to rest up and most importantly of all, keep your heart strong. Daddy and I don’t want you to scare us anymore! We will get your heart fixed in a few months and then it will work perfectly. We just have to take things one day at a time.

Our bags are packed for the hospital, daddy has the cameras charged, and the car seat is ready to bring you home. Ruby, Madison, and Cooper have no idea what is going on! They have been sniffing around your room and all your baby stuff like crazy. You will have to get used to them licking you all the time, but eventually you can aggravate them.

It seems like it has taken you so long to get here. These next two days will hopefully go by very fast. You are definitely worth the wait! August 25 will end up being a great day to be born.

Love, Mommy

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August 25th is definitely a “GREAT DAY TO BE BORN”!

Since last night Scott has been diligently updating his and Beth’s Facebook pages keeping us all in the loop. We held our breath just waiting for the news that Elijah was here! Finally, at 6:05 pm Elijah Timothy was born weighing 7 lbs 13 oz and 20 3/4 inches long. He and Beth are both doing wonderfully!

HAPPY BIRTHDAY ELIJAH! WELCOME TO THE WORLD!

A few weeks ago, CJ of the Traveling Afghan asked all the bloggers that blog about Down syndrome to write about the ties that bind us together in the Down syndrome community. I think each of us who tried to write about this had difficulty with the project. Not because we didn’t understand or agree that there are special ties that bind us together, but because there just are not words to describe such a wonderful, overwhelming emotion. 

What are the ties that bind us together in the Down syndrome community? …………………

I am an avid reader who loves just about any good story that will capture me into a make-believe world while I escape my own hectic life, if only for a little while. So, a few months ago when I got a message about a book called Ready Made Family by Cheryl Wyatt I was intrigued.

The part that grabbed my attention at first was the character, Hutton, who had mosaic Down syndrome. Not many even know about mosaic Down syndrome, so I wondered about this and wanted to learn more. 

I emailed Cheryl about her book and found that this was a series of Christian romances-each based with a character from the military. I further learned that Cheryl was born on a military base and her birthday is on Valentine’s Day, thus her love for military romance!

After emailing with the author and explaining my interest in her book, she offered to send me a special copy of it for myself and then offered to donate some for our Silent Auction at our conference. I was thrilled!

I wasn’t able to begin reading the book till after the conference, and for this past week I have stayed up till 2 and 3 am trapped in the story of Ben and Amelia unable to put it down!

Ready Made Family brings you into the life of Amelia who is a young single mother of  witty, 5-year-old, Reece. Together they have left her unforgiving father and dependent mother to try life on their own. Unfortunately, it isn’t easy to move out when you have very little money and Amelia finds herself waking up in a hospital after passing out from dehydration and wrecking her car. This is where she meets Ben. Ben is a paratrooper and wants to help Amelia and Reece. He is handsome and kind and prays often for Amelia to see how strong and beautiful she really is. However, Ben has a few problems of his own. His brother, Hutton, has mosaic Down syndrome and Ben was not very kind to him growing up. He wished that Hutton didn’t have mDs and never gave himself a chance to really get to know him. The plan is, for Hutton to stay with Ben for a year while their parents go on a long vacation. Ben wants to get to know Hutton better and be there for him, but he can’t even bring himself to tell Amelia about him. While they both struggle with their problems, they find themselves getting closer and closer and of course…. it all works out in the end because we have to have a “Happily Ever After”

I think Cheryl Wyatt depicted mosaic Down syndrome very well in this story. Not everyone with mDs has the level of delay that Hutton has, but many do and there were a lot of attributes that I could totally relate to with my own son, Tim.

I highly recommend Ready Made Family for anyone interested in a book about mosaic Down syndrome, relationships, military, single parents, romance and/or Christianity. Cheryl Wyatt touches all these aspects in her tiny little town of Refuge where people come together to help one another. 

To order this and other books by Cheryl Wyatt you can go to www.cherylwyatt.com

Thanks Cheryl! I look forward to reading more!

Many who have followed me for a while know that I had to step back from my daily blogging during the last months of planning for our Research & Awareness Conference “Building Bridges for Down Syndrome”. All the planning and lack of sleep was worth it in the end!

We have families and professionals come as far as Australia and England and many throughout the US and Canada as well. This was, by far, our largest conference with over 350 in attendance. 

I received numerous emails after the conference saying what a wonderful time the families had and how much information they received from our 30+ speakers in the main conference. I am so glad that those who were able to attend did so! I really enjoyed meeting with everyone and getting to know the families better. 

Out of all the emails I received, there is one that has touched me the most that I really want to share with you. Many months ago, I shared a story with you about Scott and Beth and their expected baby, Elijah. You can read that inspirational story here.  

Well, Scott and Beth and Elijah’s grandparents attended our conference to gain as much information as possible about Down syndrome even before Eli makes an appearance in this world. The following was written by Elijah’s grandma, Debbie and of course…Eli.

To All

I have just returned from the Conference in Cincinnati and I would like to thank you and your entire group for the wonderful conference you had.  I learned so much and would like to take this opportunity to thank you on behalf of Eli (due in August.)

You have helped my mother, father and my grandparents so much.  Now they will have the knowledge and insight to know what I am capable of.  I have learned how to develop into a great person.  I can now eat, drink, sleep,not get lost, be safe in my home and not wander off, and best of all they will have insight from the benefit of your conference to know what I can and will be able to do.

I have wonderful parents and they are doing everything they can to make my life better. 

So please know you and your volunteers are the best.

Thank you again

Eli Miller  D.O.B.  08/25/09

The Miller’s were not the only family in attendance expecting a baby with Down syndrome or mosaic Down syndrome. I think it is wonderful when a family receives this diagnoses, even before their baby makes his or her way in the world, and are already seeking out information to help their baby become the best person that they can be.

When Tim was first diagnosed with mosaic Down syndrome, I asked “Why Me?” and “Why my son?” Now, 20 years later I know the answer to that question. It was so that I could bring information to wonderful families like the Miller’s and all the other families I have the opportunity to talk with, but also and more importantly, if my son was not diagnosed with mosaic Down syndrome, I would not have found all these wonderful families throughout the world who have taught me so much more about life than I could ever teach them!

Thanks to everyone who helped with the conference, presented, volunteered, and attended. We have, without a doubt, began Building Bridges for Down Syndrome!

Conference photos coming soon!

Hi everyone,it’s Garrett again. Mom is really busy with the conference planning, so I’m writing this for her. I’m wanting to write this story to remind you how d.u.i drivers hurt other lives and for you not to drink and drive.

This is a fictional story.

Best friends stick with you to the end no matter what . You be with them, you get in trouble with them, sometimes you even live with them. But sometimes you mess up. You call them names, they get a bloody nose, or even a black eye. Well not my three best friends: Jake, Cal, and Tom. We do everything together…mostly. 

I wake up every morning praying to God for me to be safe and my friends. I ride to school and i see that my three best friends are not there. I ask one of my other friends if he saw them last week…he didn’t. They are probably still tired from our party on Friday. I don’t know how, I’m feeling good though. It was on a Friday,today is Monday. Oh well, it’s just going to be a normal day.

Something is different about this day. Usually the preps are walking and laughing over God knows what and a nerd is reading a book. None of those things were happening. Actually everyone was quiet. You would just hear footsteps. I walk in to my bi-polar teacher’s classroom and she ask for our homework. She isn’t really bi-polar, but sometimes we wonder. Like I would do homework over the weekend. Usually she starts screaming at us and tell us how bad we were. But there was no sign of anger.  She just frowned and turned away. What is going on?

School was over and me and Jake were suppose to go and play at the school, but since he wasn’t at school today he wouldn’t be able to come. I go to my other friend’s house, Dylan, to see if he wanted to chill at the school. “You wanna chill at the school since Tom , Jake, and Cal are sick?” And with the same expression as he had at school, he just frowned and shut the door. Look I’m sad that they’re gone, but come on it’s not that sad that they are sick. I’m sure they will be at school by tomorrow..I hope.

I hope that they’re here today. I wait in the classroom for them to get here, but the bell just rang. Class started and usually the teacher ask ” where is so and so” , but she didn’t this time. After she taught us what to do on the paper, I went up and asked the teacher where Cal was because she was his mom. She said,” Aw baby…” and she started to get choked up.” Come with me. I have to show you something” We were on the top part of the school and we looked out the window, and then my whole life flashed before my eyes. There I stand and I see three wooden crosses with leis on them. I run down there and it was for a fact that my best friends were killed by a drunk driver. My teacher told me how it happened. They were riding bikes to come and get me and a drunk driver hit them. Now I know why they never came and got me. I just didn’t bother calling back. I’m glad I didn’t. My face was as red as a strawberry and I could of made a river with all my tears all I thought was that the last thing I said to them was”See you tomorrow”. But I never did…

 I hope you liked my story and I hope to write y’all again and I hope that you remember to never drink and drive!

See you in a few weeks at the Down Syndrome Research & Awareness Conference in Cincinnati! I can’t wait!!!

-Garrett

Note from Mom: Wow! Garrett told me he had a story he wanted to share tonight with everyone and since I am working on conference planning and have not had time to write, I said, “Sure! Go ahead!” As parents, we hope and we wonder if we are getting through to our children. We worry that they will make the wrong choices in life and we pray that they will live through their teenage years. Garrett turned 13 just a few months ago. I cringe when I think of what I was doing at 13! I am so blessed to have the fantastic sons that I have and every now and then, they say something like this and I realize, maybe I am not doing such a bad job after all!

Don’t drink and drive people! You heard it from my son!

For Immediate Release: Franklin, TX- In 2004, Chandos J. Field (CJ) of Appleton, WI began considering adoption to expand her family and give her 7-yr-old son, Brendan a sibling to grow up with. She decided to consider adopting a child with Down syndrome, and began her search for information online. Field connected with a support system which provided her with numerous friendships and valuable information. Soon after, fifteen month old Emmalee became part of the family and CJ became part of a growing group of parents advocating for their children with Down syndrome.

Emmalee Field with The Traveling Afghan

Individuals with Down syndrome (Ds) can sometimes experience a variety of health conditions associated with the third copy of the 21^st chromosome that causes Ds. Some may be born with heart conditions, while others may have digestive problems, thyroid conditions or Leukemia. Most of the health complications associated with Down syndrome can be treated with proper medical care and individuals with Down syndrome are leading long, healthy lives because of these medical advances. However, it can sometimes be hard for a family coping with these conditions at the time.

While young Emmalee is relatively healthy, CJ noticed a lot of the little ones in her online circle going through many medical hardships. After teaching herself to crochet, CJ wanted to provide those children with an afghan to comfort them and let them know she was thinking about them and their families.

“This was my way to reach out to these families” says Field, “but there was not enough yarn or time to make every single child an afghan of their own.”

CJ decided to go a different route-one that would not only comfort the families, but also connect them in a very special way. Field decided to make one afghan that would travel throughout the world to reach all families of children with Down syndrome. The idea appealed to many families and in March 2009 “The Traveling Afghan” began its journey. When a family receives the afghan, pictures are taken to share on the website and the children are comforted with its soft fibers and bright colors before it is mailed to the next family down the line. But this is more than just a photo shoot. The Traveling Afghan has connected families of children with Down syndrome throughout the world in a very unique way that strengthens the bond between these families. It has also reconnected CJ with a child she provided foster care for during the child’s first three years of life. This child has now been adopted and has an afghan of her own specially made by Field.

Emmalee Field with The Traveling Afghan

In just the short few months that The Traveling Afghan has been moving from family to family, the project has grown so much that it now has its own website and has become a great tool of awareness for those with Ds. Families from all 50 states and 15 countries as far as Australia have added their name to the waiting list to receive their chance to share this common bond.

The Traveling Afghan will take a unique journey across the United States in July to reach the Down Syndrome Research & Awareness Conference-BUILDING BRIDGES FOR DOWN SYNDROME, being held in Cincinnati, OH on July 10-12. This International life-span conference is hosted by the Down Syndrome Association of Greater Cincinnati (DSAGC) and is being brought to the area by International Mosaic Down Syndrome Association (IMDSA). IMDSA’s president, Kristy Colvin will begin the journey with the afghan from her residence in Central Texas and make stops along the way to spread awareness about Down syndrome. Everyone attending the conference will have the opportunity to participate in the first largest photo shoot with The Traveling Afghan and then send it on its way to the next family to continue its journey. CJ Field has also generously donated another afghan which will be available at the conference’s Silent Auction that Friday evening. 

The project has become so popular among the families of children with Down syndrome that it has also branched off into “An Afghan of Their Own” in which CJ provides many children with their own afghan. To date, 24 children have received their very own afghan, in the same pattern as The Traveling Afghan in their choice of colors. To include your name on the growing list of families or make a donation so others can receive “An Afghan of Their Own” you can visit the website at www.thet21travelingafghanproject.com

For more information about the Down Syndrome Research & Awareness Conference- BUILDING BRIDGES FOR DOWN SYNDROME held in Cincinnati, OH, visit www.imdsa.org or call 888-MDS-LINK.

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International Mosaic Down Syndrome Association is a nonprofit organization designed to provide support, information and research to those affected by mosaic Down syndrome. Mosaic Down syndrome is a rare form of Down syndrome affecting 2-4% of the Down syndrome community. The Down Syndrome Research & Awareness Conference is a life-span conference held biennially to meet the needs of all families affected by all forms of Down syndrome.

Yesterday , I described just a little of what it was like the day before and days-years after I had my son, Tim.  This morning when he awoke, I sang Happy Birthday to him. Tim, being the literal man that he is, told me it wasn’t his birthday till 3:45 pm. (the time he was born) Unfortunately, I was not home at 3:45 because I had to go to the store to buy Tim’s favorite dinner. Chili Enchiladas and Cheese Cake for desert. (yeah… it sounds gross to me too!)

So when Garrett and I arrived home we loudly sang Happy Birthday and it was official! My baby boy is 23 years old!

Twenty-three years can go by very quickly. It seems like yesterday that I was outside in the front lawn encouraging him to take his first steps, to say his first sentence, or when his older brother Arron, taught him to ride a bike. It doesn’t even seem that long ago when he graduated high school! And as I look back on the last twenty-three years, I see not only changes in Tim, but also changes in me.

Sure, I have a few more gray hairs than I care to share. Most definitely, my jeans size is no where near what it was back then. And the energy I had to chase around a hyper-active two-year-old is long gone! But there are other changes in me that are not as physically visible as the others.

Back when Tim was first diagnosed with mosaic Down syndrome, I felt very lost and extremely alone. I did not have a clue what mosaic Down syndrome was and I wanted more than anything to have something concrete that I could hold on to. Something that would tell me what this meant, what to expect, what to be worried about, what not to be worried about. I was so frustrated when there was no information out there. Yes, there was plenty of information on Down syndrome. And I tried to use that information to compare notes. But none of it really fell in line with what was happening with Tim.  He was either meeting his milestones way before what the books were saying or way after. He wasn’t having trouble in some areas that the books said he should have trouble in. And when I tried to attend a Ds meeting, I was shunned by the other parents. They made it clear that I did not belong.

So, I just raised him the best I could with the zero information I had. I didn’t know what to expect, so when something came up I dealt with it. Which really is not a bad way to live. If you worry about the unknown that may never happen, you will miss out on all the great things that are happening now!

However, as a parent, I know how important it is to have something in your hands that you can read and know that everything is going to be alright.

Over these past 10 years, I have gained a tremendous amount of knowledge on mosaic Down syndrome. I have spoken with countless doctors, researchers and the real “experts”-parents and individuals with mosaic Down syndrome. I have asked the hard questions and insisted upon answers that I could easily understand.

Over these years, it has always been my goal to make sure that no parent ever feels alone, as I did, in raising their child with MDS. We at IMDSA have accomplished that goal! Every family knows they are part of a much larger family. When one family is sad, we are all sad. When one family is happy, we are all happy! But, there is still so much that families need to better understand mosaic Down syndrome. They need the concrete information. They need something to hold on to-to open up and refer to when they have a problem or a question. They need information and they need more than just a blog or a research paper. Families need to know what mosaic Down syndrome is, what it means, what to expect, and what they can do to help their child become the best person possible!

They need what I so desperately wished for 21 years ago when I received the diagnosis for Tim.

I know this is “Taboo” for writers to do this. But, I am doing it out of my faith in God. Because I know that He has lead me over the years to do this and with His help I can accomplish it! So, although authors are not supposed to announce things such as these I am going out on a limb here and hope I don’t hang myself completely!

I am in the process of writing a book about mosaic Down syndrome.  I am half-way finished now and after the conference I will devote the majority of my time to this book. I will still blog every now and then, so please stay with me and if you are subscribed please don’t leave, so when I do write, you wont miss anything.

I want to thank my loyal readers here for all your questions this past year. You have helped me grow and helped me learn even more. I am confident that with God’s help, I will be able to bring you the information that you need to help someone with mosaic Down syndrome. This person may be your child, your patient or client, or yourself. I will update you as I can and of course continue writing more about our upcoming conference in Cincinnati! (I hope to have schedules ready for the Teen and Adult Conference and Kid Konference by next week!

23 years ago today I was lying on a narrow hospital bed waiting for my baby’s lungs to develop before delivery for the next day. The next day, was D-Day. This day would mark 32 weeks in my pregnancy. Throughout my pregnancy I had Placenta Previa-basically this means that my placenta was falling out. So, I was put on bed rest and when I continued to have trouble I was admitted indefinitely into the hospital and had been there for a month before my water broke-which marked my indefinite D-Day.

I was young-only 20 yrs old. It never occurred to me that babies died. It never occurred to me that having a premature baby was a dangerous thing. It never occurred to me that at 20 years old, I would come face to face with death-not just for my baby, but also for myself. And, it never occurred to me that my baby would be born with anything out of the ordinary.

Oh sure, I knew these things happened….to other people. 

So, 23 years ago today I lain on this hospital bed in a “semi-private” labor room in which I had various “room mates” for my three-day stay. I watched them come and go and it never occurred to me that within the next 24 hours my life would change forever. 

On May 19, 1986 I had a beautiful baby boy. I wasn’t able to see him till the day after he was born because I was too weak and far to sick from the loss of blood since I had refused a transfusion because of the high risk of AIDS in transfusions back then. 

Having a baby changes your life. This one definitely changed mine. I could say it was because I was near death. Or even because he was too.  But that is just where the story begins. It wasn’t life-altering at that moment. Probably because I was far too young to realize the true danger that we were both in. Even when my doctor came in to my room with tears in his eyes as he explained that I was dying and there was nothing more that he could do, it never occurred to me that I would actually die. And thankfully, only by God’s grace, I didn’t die. And neither did my baby.

The beginning of my life-altering moment came 2 years later with a blood test that revealed that my beautiful baby boy had a few extra chromosomes. The moment when they told me that he had mosaic Down syndrome and there was nothing in the literature; no book, no pamplet, not even a flyer, that could tell me what to expect with this diagnosis, my life changed. 

Many would think that my life changed for the worse. After all, I had no information, I had no one to talk to and compare notes, I had no support. But I had my “Mommy Instincts”. And as the years went by, I realized that raising a child with mosaic Down syndrome was no different than raising any other child really. Sure, we had to make up some rules as we went along! Definitely, I had a few Pity Parties throughout the years. But the thing I learned the most is, having a child with extra chromosomes is no different than having any other child. And I have others to compare it to! 

23 years ago tomorrow, my tiny 4 lb 4 oz baby boy was born via Emergency C-section. He had his Mommy’s dark brown eyes and was so tiny that his 6 inch high Teddy Bear was more like a Grizzly to his small frame. He loved to snuggle up to me and fall asleep while I rocked him gently in the squeaky old  wooden rocker in the “growers room” at NICU. I loved the way he would yawn and crinkle up his face like a miniature wrinkled old man. I loved the way he smelled when I held him and when I had to leave him I would smell my shirt for the rest of the day-just to try to stay close.

Now, 23 yrs later, that tiny baby is a grown man who takes care of his mom. He is always sensitive to my needs and jokes that he is amazed that I lived through his hyper-active years. He says that he is glad that he has mosaic Down syndrome because without it, he wouldn’t be the person he is today.

I know that if Tim did not have mosaic Down syndrome, I would not be the person I am today. I would not be as strong as I am. I would not have the knowledge that I do. I would not have the wonderful extended family that I have. And, International Mosaic Down Syndrome Association would not exist the way that it does. Families would still be left out in the cold wondering what this means for their children.

Tomorrow is my baby’s 23rd birthday. For this special day, I have a very important announcement that you may not want to miss.  

In March, I wrote an article reminding us all of What Matters The Most. This was a celebration of the little things in life. Those small miracles that we often overlook in the busyness of our day. That was March 23, 2009. On this day, our little Gideon had taken his first steps! We were all so overjoyed with his accomplishment and his infectious laughter. Gideon is a strong willed little guy who happens to have mosaic Down syndrome.

This special event was just seven weeks ago.

Gideon was born with some heart problems that many children with Down syndrome and mosaic Down syndrome are often born with. In most cases, children are able to have a surgery to repair their heart and bounce back pretty quickly. I have heard countless parents recall the anxiety of the day their child had this surgery, only to say later that the hardest thing was to keep them still afterward and try to make them rest. 

Unfortunately, this is not the case for young Gideon. In the past two weeks, Gideon has had 3 heart surgeries and is now on a pacemaker and still being monitored very closely. Gideon is a strong little guy and like his name, he is a “Powerful Warrior”. 

But even warriors need soldiers to stand beside them to win fierce battles. Today, Gideon, and his mom Marriah, need some soldiers to stand beside them to win this battle. They need lots of prayers and as many Angels as you can spare.

The video above was just seven weeks ago of our sweet little warrior taking his first steps. 

The video below is Gideon now. 

Gideon will be celebrating his second birthday tomorrow!

Happy Birthday Gideon! 

Get Better Soon!

Tonight is the night! We have been waiting about a year for this day to arrive and it is finally here! Tonight at 10pm EST on Mystery Diagnosis we will have a small part of telling others about mosaic Down syndrome! This is a huge step for International Mosaic Down Syndrome Association as we will be able to reach so many more families whose children have mosaic Down syndrome and do not know that we are here to provide them with the support, information and research that we work so hard to provide to everyone!

Special Thanks goes to Holly Hannum for telling her daughter, Hannah Hannum’s story of being diagnosed with Myelodysplastic syndrome.(MDS) and later mosaic Down syndrome (mDs). Also, special thanks to Sue Johnson for offering her daughter Isabella to play the part of young Hannah! Not many times on Mystery Diagnosis do you get the opportunity to have 2 individuals with the same diagnosis and both were diagnosed later in life. These families did a great job of telling the story and if there is anything left out we will totally leave that in the hands of editing at the Discovery Health Channel.

If you would like to discuss this story after the show, I will be on Twitter (if I can figure it out enough! lol) You can find me on twitter by just clicking the box to the left of this post that says “follow” on Twitter.  To find out more and read more stories look below.

On April 6, 2009 the American station, Discovery Health, highlights one of our families’ stories on Mystery Diagnosis. Hannah Hannum is one of thousands of individuals with mosaic Down syndrome who was diagnosed later in life.

The average age for individuals to be diagnosed with mosaic Down syndrome is 1-4 years of age. The most common reason for this late diagnosis is the lack of knowledge in the medical field on this rare form of Down syndrome. However, many individuals can go undiagnosed up into adulthood and there are still thousands who never receive a diagnosis.

For more information on mosaic Down syndrome please visit our FAQ’s of MDS

If you feel that you or a loved one may have mosaic Down syndrome, please contact us and we will be happy to answer your questions.

We invite you to meet some of our families who have received this diagnosis later in life.

Meet Hannah diagnosed at age 3*

Meet Isabella diagnosed at age 10 months*

Meet Ryan diagnosed at age 3

Meet Allison diagnosed at age 5

Meet Tim diagnosed at age 2

Meet Christina diagnosed at age 25

Meet Rachel diagnosed at age 6 months

Meet Emily diagnosed at age 18 months

Meet Aidan diagnosed at age 2

*featured on Mystery Diagnosis

International Mosaic Down Syndrome Association provides support, information and research to all individuals and families touched by mosaic Down syndrome. IMDSA is a nonprofit organization, and is dependent completely upon generous donations to continue its mission of helping families and individuals with MDS. All donations are tax-deductible to the fullest extent of the law.