Double Digits

 

I'm not sure how this happened, but Ari is 10 years old today. I have officially been parenting for a decade! And what an unexpected parenting journey it has been. 

I remember when Ari was in the NICU, the nurse gave us a little card with his inked footprints on it. Being that it was so close to Saint Patrick's Day, it had a green shamrock and a message saying something like "I'm so lucky to have you." What we didn't know was how lucky we were to have him, and all the lessons he would teach us. 

He was also born just 6 days before his due date (March 21st). A friend sent me a link to a blog post about a girl with Down syndrome and her family celebrating that date, which is World Down Syndrome Day. Seemed like such an unbelievable coincidence. But then again, I had a strange fear throughout my whole pregnancy that he would have Down syndrome, and dreams about loving him so much even though he wasn't what I was expecting (in my dream, he was born a penguin;). At key moments when I felt like something wasn't quite "right," Three Little Birds would come on the radio and remind me that every little thing was gonna be alright. 

Everything has been alright. The fear is gone. The love is strong. He was born exactly as he needed to be. And now he is 10! I am continually amazed by how much he is growing up and maturing. He still has the innocence and candor of a younger child, but he is learning and growing so much everyday. He currently loves singing, (he must have music on whenever there is any silence), science class at school, MLK (he has been asking to go to Georgia to see his grave and he drew him on his Valentine bag), all the sports, all the movies, being independent (he can do it himself!), and, as always, saying silly things and making others smile. 

I have had moments of sadness leading up to this birthday, because I feel that my baby is getting too big. But then I got a sobering moment of perspective. I have several friends whose children didn't get to live to see double digits. What they wouldn't give to be able to celebrate their child's tenth birthday.  So instead of sadness, I am appreciating that I have a ten year old who still lives on this earth and graces us with his light. 

I don't feel like words can really do justice to all I feel about our remarkable son, and how much he means to us. Happy Birthday to Ari! Now to get the double scoops of ice cream he has been looking forward to ! 

Number 7!

     Every day, I see my little superhero getting bigger right before my eyes.  He has had quite a growth spurt this year, in height as well as in cognitive development. He still has some impulsive behaviors, but his academic achievements have taken a big leap.  He is reading at a higher level, finally gaining some headway on his writing skills, and continuing to wow us with his speech and comprehension. To say I am proud of him is an understatement. As with each new birthday, there is a sense of pride and excitement at his growth, as well as a sadness as my baby becomes less of a baby. 

    I had a conversation the other day with someone I was meeting for the first time. When I mentioned that my firstborn had Down syndrome, it read on her face that she felt very sorry to hear that. My immediate reaction was to tell her how it was so hard at first, but that I truly am so thankful he was born exactly the way he was. I want people to understand that. I want to shout it from the rooftops. He has changed me into someone fully better than I was before. He makes me feel like I have a purpose. Yes, he also challenges me. Advocating for him and working through the challenges are an almost full time job. There are stresses on me that are above and beyond what most parents have, but even so, I wouldn't change a thing about my reality. What I would change is the system that doesn't support him and the people who don't see his worth - I am working to change those things, in small ways, every day. 

    Ari, I see you. I see how hard you try. I see that huge, special heart inside that shines out so brightly. I enjoy you. You make me laugh with the funny things you say and do. I love the way you love to dress up in costumes, or naked dance with your sister. I love how you are passionate about whatever thing is your favorite at the moment. Right now, it is Wizard of Oz (you haven't seen the movie, but did watch the ballet, and are performing it with your own ballet class). I love that you want to be a superhero or an astronaut. I love how truly great you are at golfing...I can't wait to see you develop that skill as you get older. You make me crazy when you tell me I can't sing certain songs or certain parts of songs...you know you can't tell your mama not to sing! You have been telling me more than usual lately that you love me so much...it makes my heart warm. You and Violet like to play a game where I am a baby fox, and you are my daddy. You are so gentle and sweet as the daddy. Too bad you won't have any more baby siblings, because you would be amazing with them. I just want to say again that I am so happy you are mine and I am so proud of the boy you have become. Happy Happy Birthday!!

Little Victories

A friend of ours, Megan Jones, made a documentary for school about Ari and our family, and after making the rounds in several film festivals, it is back on YouTube. I thought I would post the link, since many of you still haven't seen it and have asked about it.

In March, the film made it into the top six films for Docademia's Film Festival in the Early Childhood category, out of 529 submissions. Pretty cool :)

Here it is: Little Victories 


I also thought I would post some pics from Ari's first day of Kindergarten! He is doing super well so far and we are just so proud of our smart, sweet, funny, loving child.

Five!

My first baby is turning five tomorrow. I asked him if he wanted to stay little or grow big, and he said “stay little.” If only, my sweetie. There is some comfort in knowing that he will always be a bit younger than typical children, not just cognitively, but also in the way he views the world; with an innocence and joy that we all lose somewhat as we grow up.

I have been struggling a bit lately with some sadness and frustration over some recent blocks in the road for him, and with hearing his latest evaluations reports. The gap between his learning and the age-specific milestones keeps widening. Some days, I just wish things were easier. But today, as I snuggled up with him in the sunshine after school, and looked into those beautiful eyes, I just felt so grateful that he came into my life. None of the other stuff mattered. He will get past the roadblocks in due time. The fact that it takes longer for him to achieve some things can be frustrating to me, but it is essentially fulfilling my wish that he just slow down on this whole growing up thing. :)



He’s so big now. So tall. I still cradle him to sleep for weekend naps and can’t believe the length and weight of him. When did this happen? He was just a teeny tiny baby, reaching his hand to touch my chin in the birth tub. Receiving the news that rocked our worlds feels far away and yet so recent. I’ve been thinking about what it was like when he was a baby, the adorable ways that he grabbed us by the heart on the daily. What I wouldn’t give to go back for just a little while and be with baby Ari again. I’m sure all parents can relate to this desire. Thankfully, he continues to grab us by the heart in different ways. He is still so sweet and funny, and still has the best laugh ever. But now, we also get to watch him learn, listen to him speak (which he does very well), and engage with him in active play. Each age brings new things to enjoy and to be oh so proud of.



Tonight, before bed, we read On the Night You Were Born, a book I have read to him a gazillion times since he was a baby. The book opens perfectly with, “On the night you were born, the moon smiled with such wonder that the stars peeked in to see you, and the night wind whispered, “life will never be the same.” How true. It will never be the same, and it is so much better.


Now, to figure out how to get him the one request he had for his birthday, strawberries!

Book Review - The Parent's Guide to Down Syndrome

A new book is out and I am excited to share my thoughts about it with you, as we approach World Down Syndrome Day on March 21. I was given a copy of the book in exchange for my honest review. 

                                                  

The two authors of this book are parents of children with Down syndrome themselves, and Jen Jacob is the Vice President and co-founder of the Down Syndrome Diagnosis Network. I joined one of her online parent groups a while back, and I contributed our birth story to her book, Unexpected, which you can find HERE.

I will start off by saying, this book has just about everything you could need or want to know as a new parent to a child with Down syndrome, but also as a parent of an older child or adult. I am absolutely amazed at how thorough the information is. I will also say that I only skimmed the last parts of the book, as it gets into the older years, and I try to take things one day at a time! 

Each section deals with a different topic, and the chapters move up in age from pre-natal diagnosis and birth to adulthood. I love the tone of this book. Written by two very knowledgeable and experienced women, and contributed to by probably hundreds of parents, it explains the facts and the possibilities (which vary greatly) in a way that still highlights positives. For example, when speaking of hypotonia, "Some doctors may describe your child as "floppy" or "lacking stability." In any case, you will probably notice your baby is extra snuggly. It may feel as if your infant has melted right into you as you hold her." I love this so much. The books that I have previously read about Down syndrome are all fact, and are lacking that personal touch and that positive outlook! It is definitely true for us that Ari ended up being the easier baby of our two! 

My other favorite thing about this book, which adds to the above sentiment, is that every topic includes a section called "Our Experience," where actual parents, relatives, or adults with Down syndrome, share their personal stories about a particular topic. This is usually a short story or just a one or two sentence explanation. It adds so so much to the personal feel of the book, and shows how greatly each person's experience can vary. I think it would be helpful for new parents to know what to expect, but to also know that their child is an individual and will have his or her own experiences. I remember reading the book that I was given, and thinking that my child was going to have all of the listed medical problems, when in actuality, he's had very few. 

I can honestly say that I think this book is the best available for current information on all things Down syndrome, keeping in mind that it is not an encyclopedia, but a starting point. If you want more information about any topic, you can find it online or in the listed resources. This book breaks everything down into bite-size pieces that make it an easy read, and a great introduction. The only thing that I would have liked to see included, that wasn't, was more details about what Down syndrome is from a detailed genetic point of view. But, not everyone needs that, and it can certainly be found online or in other publications. 

I will also note that, being the naturally-minded mama that I am, I was thankful for and impressed by the fact that certain things were mentioned, including the importance of breastfeeding and breast milk (even mentioned as a helpful medicine for goopey eyes), skin-to-skin (or kangaroo care), and baby wearing. :)

If you are interested in purchasing a copy, click HERE or you can purchase on Amazon or your local Barnes and Noble. 

This review is part of a virtual book tour, and the authors are doing an awesome giveaway. The grand prize includes an “I love someone with Down syndrome” tote, an advocate coffee mug, a great variety of books including, of course, The Parent’s Guide to Down Syndrome, plus fun t-shirt, stickers, and more! A value of over $150! To enter, click the link below!

http://www.mardrasikora.com/wdsd16-giveaway/

Beneath The Surface

I often read and hear about other parents of a child with Down syndrome, saying they don't even think about Down syndrome anymore. For me, although I don't think about it in the same way I did when Ari was first born, it's definitely something I think of several times a day, at least. 

Thinking about it is one thing, grieving over it is another. I often end the story of Ari with a line about how things were hard, but now it's all great and we couldn't be happier. Most of the time, I actually feel this way. However, I recently realized that I still have grief over his diagnosis; it just hides there in the back of my mind and deep down in my heart, not even obvious to me...until it is. 

I think his being in school full time, around other kids his age (most typically developing), has brought some emotions to the surface for me. I know that comparison is the thief of joy, and yet, it isn't that easy to turn the comparison radar off. I love that he is thriving in school and I am so happy to see all that he is learning, but some days are just hard for me. When he was a baby, his cuteness- his absolute heart-melting adorableness, made it easier for me to look past his delays and differences, and he got a lot more positive attention from strangers. Now, although he's still darling, it is just different. I think people notice him less as cute baby, and more as a child who is different than other children. 

Violet is a typical child, maybe even developing ahead of the curve. I have so enjoyed getting to see the timeline unfold in the typical fashion with her, and yet, even that makes me tear up sometimes. I really do love that Ari has his own timeline and is his own person, and I love how much that has taught, and will continue to teach us. But, I guess Violet's progress gives me a comparison I never had before, since Ari was our first. And it causes me to envision the future in a different way as well. What happens when Violet passes Ari up developmentally? I don't know what that will look like or feel like, and in some ways it will probably be cool, but I know it will likely bring that grief to the surface as well. 

I realize that most parents probably don't understand my sentiment, but I am trying to be as open and honest about my feelings as I can be, without worrying about if it will make me look like a bad parent. I know I am a good parent, and that I love my children more than the world. I also know that I am human and flawed, and just trying to get through each day with more smiles than tears, more laughter than frustration, and more hope than fear for Ari's future. 

As I wrote in an older post, "without the grief, my heart never could have opened up enough to receive the love that my son was bringing into it." Now, the grief just stays hidden, deep beneath the surface, to make sure I continue to keep my heart open to the love and joy and wisdom that my son will continue to impart.


Also, Happy Halloween from the Oz crew!

Reeve's Tees

I am excited to feature a very near and dear company to you today: Reeve's Tees! Many of you know that a photo was taken of Ari sporting a very popular style of Reeve's Tees, making him skyrocket into Facebook fame, after it was posted to the Global Down Syndrome Society's Facebook page. The original post has nearly 150,000 likes and over 85,000 shares! Ok, enough bragging, but seriously, how often does this kind of thing happen in life?! 

We owe it all to Reeve's Tees for making such a great shirt. The first time I saw this shirt, I bought it immediately. I love that it is funny without poking fun. For me, putting him in shirts with these kind of messages is a way of answering the question that might be in someone's mind (does he have Down syndrome?), but that they don't feel comfortable asking. It is way to put a smile on someone's face. It is mostly a way to show that I am so proud of Ari and all that he is, not ashamed of him. 

I asked Shana of Reeve's Tees to answer some questions, and give some details about her awesome company. I hope you enjoy! 

Shana, can you tell us a little bit about yourself?

On the personal side - I've been married to my husband Jason for over ten years.  He's a pilot in the Air Force, which means that we've had an adventure-filled life involving lots of deployments and cross-country moves. We are currently living in Ohio. We have two sons - Colby (age 9), Reeve (age 1), and another boy due in February.

On the professional side - I've been a business consultant in the financial industry for about 13 years. Six years ago I left work to study business full-time at University of Michigan. In 2011, I graduated with an MBA focused on strategic marketing. After graduating, a classmate and I founded a boutique consulting firm where we provide outsourced strategy, marketing, and web development to small businesses that do not have these departments in-house.

When and how did you decide to start a tee shirt company?

I mention my business background because it played a huge role in my decision to start Reeve's Tees.  As a marketing consultant, I help companies who are struggling to effectively communicate their identity to the public.  

Two years ago, in my first trimester, Jason and I found out that the baby we were having (Reeve) had Down syndrome.  At that time, I had never personally met a person with the condition.  At first the news was very heart-breaking.  There were a lot of "I'm sorry"s, "I feel bad for you"s, and general discomfort when discussing Reeve's condition with others.

While I was still pregnant, I decided to become involved in our local Down syndrome organization (Miami Valley Down Syndrome Association - MVDSA). Our family also started going to a local tennis program called BuddyUp tennis for kids and adults with Down syndrome.

As we met more families, and spent more time with individuals who had Down syndrome - I noticed a complete misalignment with the public perception of Down syndrome (sadness, discomfort, and pity) with what was really going on within the Down syndrome community (joy, love, acceptance, and pride).  Families were not sad at all - they were proud - so so so so proud!

This inspired me so much - both as a new mom, and also as someone who has focused my career on helping others communicate their unique personalities to the public.  I wanted to bridge that gap between public's perception of Down syndrome with the true nature of the Down syndrome community.  

I felt that the easiest way to do that would be to make t-shirts to change the paradigm.

What makes your company unique? 

I believe that there are three things make our company unique... the first one is our edgy brand of loving humor, the second is our packaging process, and the third is that we are a for-profit company by design.

As a marketer, I know that to capture people's attention, one must be both pithy and interesting.  Prior to starting Reeve's Tees, I had seen a number of Down syndrome awareness t-shirts that said things like "I love someone who has Down syndrome."  Those were great, but I didn't think that they captured the magical flavor of love and acceptance within the Down syndrome community, nor did they turn heads or cause people to think differently about the condition.

I wanted a new voice for the Down syndrome community - one that was a little edgy - a little shocking - and a little bit humorous.  I needed this voice to grab attention, change perceptions, and most importantly, to communicate to people that they can feel comfortable around those with noticeable differences.  As they say: humor is often a great way to diffuse awkward situations.  

With humor, one has to be very careful.  Historically, humor has been used at the expense of individuals with Down syndrome.  I wanted our brand of humor to express love and invite connection to people with Down syndrome.  

Through my own anecdotal experiences, I noticed that saying "My baby has Down syndrome" created silence, distance, and awkwardness.  On the other hand, saying that "My baby is a homie with an extra chromie" led to smiles, comfort, and even genuine curiosity and heartfelt questions about Reeve's condition.

Reeve's Tees are different because they defined by this voice within the Down syndrome community which expresses a unique brand of loving humor.

The second differentiator is more operational - it is our packaging process.  For anyone who has ordered a t-shirt, we hope that they were pleasantly surprised by the work, thought, and care that has gone into the packaging. 

Our tees are packaged by adults with Down syndrome or by special education students who work with us as part of their vocational training.  Each of our packagers has unique intellectual and/or physical challenges, and packaging these tees has been a means for them to refine their skills, show off their capabilities, and become proficient in a process for which they can feel proud.

For adults with Down syndrome, finding work can be challenging.  Packaging for Reeve’s Tees is a way for them to earn money and save up for their own personal goals.

The care and dedication that our homies put into their work is amazing - consequently, our packaging has become another way in which we express the pride felt within the special needs community.

Lastly, most organizations focused upon raising awareness for individuals with Down syndrome are non-profits funded by donations.  We are a for-profit company funded by revenue.  I wanted the individuals who work for Reeve’s Tees to be a part of the economic process. 

It was important for me to be able to tell them: "You are doing important work that creates value.  You are making money because what are you are doing has meaning.  You are earning money because people respect your abilities and appreciate your hard work."  

While we are "for-profit" - we are also a very generous company that donates both cash and merchandise to non-profits whose missions are to empower, educate, and/or provide research to enhance the lives of individuals with Down syndrome.  But for ourselves, we are proud to say that we are completely funded by our customer's loyalty - for which we are most appreciative!

Most revenue goes back into growing the business so that we can continue to expand our company and further our mission – to help others “Get comfortable with difference!”  Soon we will be selling shirts that help raise awareness for other genetic conditions.

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Thanks to Shana for doing such wonderful work. You are an inspiration! Here are some more images of the staff at Reeve's Tees and a couple of videos that show the love that goes into the packaging! 

My family teamed up with Reeve's Tees and Virginia Stiles Photography to get some images for marketing, and we had a blast! 

I am happy to announce that I am doing my first blog giveaway! If you would like to win this Reeve's Tees homies tote bag, simply leave a comment below, telling us what you love about Reeve's Tees. Winner will be chosen on Sunday night. Make sure to check out all the great products Shana has available at www.reevestees.com! 

The Genetics Behind Down Syndrome

October is Down Syndrome Awareness Month. The first thing I delved into after Ari was born, was the genetic component. I wanted to know, why and how did this happen? If you enjoy science, then read on. I put the information I found in the book, "Babies with Down Syndrome" into my own words. I want to make sure I credit Chahira Kozma. If you wish to have more detailed information, she does a wonderful job explaining.

Our genes are made up of our DNA, and they tell our body what to do. Chromosomes are the package that our genes come in. Normally, each cell in our body contains 46 Chromosomes, or 23 pairs of chromosomes, one chromosome per parent in each pair.

This is a karyotype, which is an image of the chromosomes in a cell. The chromosome pairs are numbered according to the amount of genetic material that they hold. The first chromosome pair contains the largest amount of genes, and the 21st holds the least (they used to believe that the 22nd held the least, thus it is incorrectly numbered). 

At conception, a baby is formed by the combination of 23 chromosomes from the egg and 23 from the sperm. The cell, now containing 23 pairs, or 46 chromosomes, begins to replicate itself, with each new cell containing the exact same information. 

So how is it that the sperm cells and the egg cells only contain 23 total chromosomes? They go through a process called meiosis, which splits the pairs of chromosomes so that the baby can receive one chromosome from each parent. It is during meiosis that most errors occur. 

Here is a breakdown of the 3 ways that Down syndrome can occur:

In nondisjunction, the cell that splits to form the egg or sperm (46 chromosomes) may split improperly and result in two eggs containing 22 chromosomes and 24 chromosomes, respectively. The one with 22 chromosomes could not survive/be fertilized, because it is missing an entire chromosome. The one with 24 chromosomes can survive, but it brings an extra chromosome along. When the egg is fertilized, the cell now contains 47 chromosomes, one of the chromosomes having a third copy instead of the usual pair. This is called a "trisomy." If the extra chromosome is added to the 21st pair, this is Trisomy 21, or Down syndrome. The cells then duplicate until every cell in the body contains 47 chromosomes, instead of the typical 46. Nondisjunction results in the the most common form of Down syndrome (95%).  Below is a karyotype of a male with Trisomy 21.

In translocation, which is harder to explain, a mother or father's cells have a rearrangement or chromosomes, usually having two stuck together. When meiosis occurs, a piece of chromosome 21 breaks off and attaches itself to another chromosome, resulting in extra 21st material. Only 4-5 % of babies with Down syndrome have a translocation. This is also the only form of Down syndrome that is inherited. Parents of a child with type have an increased likelihood of having more children with Down syndrome.

Mosaicism is found in 1% of babies with Down syndrome. Mosaic Down syndrome occurs when only some of the cells in the body have an extra 21st chromosome and the other cells do not. This can happen in one of two ways.  1. The cell starts out with 47 chromosomes and during the replication of cells, one of the dividing cells corrects the error. In this case some cells continue to copy the extra chromosome and the other cells copy the corrected cell (which now has 46 chromosomes). 2. The reverse of number one...the cell starts out typical and somewhere along the cell division, an error occurs. Cells from the original are copied and cells from the abnormal cell are also copied. People with Mosaic Down syndrome can often be less affected, both intellectually and physically; it depends on what part of the body is affected by the abnormal cells.  

Why is Down syndrome the most common chromosomal abnormality? Over half of all first trimester miscarriages are a result of chromosomal abnormalities.  A baby will not survive if the cell contains an extra 1st chromosome, for instance, because this chromosome holds the most genetic information. The larger the amount of genes on a chromosome, the less likely the baby will survive. Of course, some babies do survive with many different genetic conditions, and the chromosome(s) involved determine the affect it will have on the baby and their quality of life. Because the 21st chromosome contains the least genetic information, it has the smallest affect on the person, and it makes sense that these babies have the greatest chance of survival and of living fulfilling and often independent lives. 

Happy Birthday Violet

Did I not just post her birth story? Time has gone incredibly fast, and I am not feeling quite ready to let the baby stage go forever...but, not much can be done about it.

Violet was not always an easy baby. In fact, she was down right maddening for a good portion of her first three and half months of life.  I can't blame her for having colic, and I feel terrible that I couldn't make her more comfortable, but it was so incredibly trying for us. I pretty much had to sleep with her on me, which was difficult, but I admittedly miss that sometimes. I felt pretty bonded to her because of it. Honestly, I was certain that we would have an easier time postpartum than we had had with Ari, because we would likely not be dealing with the same emotional trauma. Turns out, it was much harder this time around. We clearly took for granted how chill and easy Ari was as a baby! We also didn't realize the extent to which having two children would change our lives. It has been much more difficult, but we wouldn't choose another life.

 

Everyone told us to give it a few months, and they were right. She slowly came around, and she is now a delightful little person. I have so enjoyed watching her personality reveal itself . She is hilarious. She tries to make me laugh, when I am attempting to nurse her to sleep, by making funny faces (the slow blink and the scrunched nose are her top contenders). When I tell her I am gonna get her, she leaps forward, throwing her body down on the rug and giggling.  She has a new nightly game she plays with her brother while he sits on the potty. She leaves the room and then sort of plays peek a boo with him in the doorway. Ari enjoys making her belly laugh. I can't get enough of her deep toned laugh either. It is fun to see how silly both of our kids turned out. It isn't too surprising, as they have the world's silliest mother.

She seems to be a fast developer. She was walking at 10 1/2 months and she currently has about 12 words. One that makes us laugh is when she throws her food on the floor (naughty!) and says "Uh......Ohhhhh!" She's never been big on being spoon fed, preferring to do it herself. She is mama's girl, which makes me feel good, since Ari is all about his dad. She is affectionate, already giving kisses to us and to some stuffed animals, as well.

She and Ari didn't have the greatest start either. I can understand why he might be frustrated with this new, always crying, attention-sucking baby, and he acted out those frustrations with lots of pushing and shouting at her. His first pronunciation of her name was "butt." Touché. We are still dealing with some of that, but now that she is more mobile, they are starting to become friends and they always love giving each other a goodnight kiss!

Though it hasn't been the easiest year, and in many ways it has been the toughest, I still feel sad that it is over. I got teary last night while feeding her and holding her chubby little baby legs, imagining how soon she won't be little anymore. My last baby is one year old. It is bittersweet. 

Happy Birthday, beautiful girl. You and Ari have always been the pieces missing from my heart, and now I am complete. Thanks for being you and for making this mama so very happy. I can't imagine my life without you in it.