Follow Every Dream

Double Digits

2022-03-15T20:02:00.002-07:00

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!

2019-03-15T08:51:00.000-07:00

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

2017-09-26T10:14:00.000-07:00

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!

2017-03-14T20:52:00.000-07:00

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

2016-03-08T19:38:00.002-08:00

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

2015-11-03T08:24:00.001-08:00

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

2015-10-09T19:22:00.000-07:00

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

2015-10-02T15:26:00.000-07:00

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

2015-09-21T21:24:00.001-07:00

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.

Violet's Birth

2015-05-24T20:31:00.004-07:00

The long awaited day arrived three days after her due date. I had gone on a walk earlier in the day, which ended with Ari and I playing on the porch and taking pictures: the last pictures of us as mom and only child.

I was eating dinner when I started having regular period-type cramps. I went to bed and was fairly certain labor was starting. At 1:00 am, I could no longer rest and decided to go downstairs and let Tim sleep for as long as possible. I called my midwife, Jen. After she arrived, I phoned my doula and my mom. They both came as soon as they could. I labored downstairs and Jen used rebozo on me to get the baby into a better position, as she was feeling posterior. After doing that through a few contractions, baby was in a good position and my labor started coming on much stronger. We went upstairs to get the tub filled up in our bedroom.

While the tub was filling, I sat on our exercise ball next to the door to the deck. My mom opened the door to let cool air in because I was feeling very warm. Jen massaged some calming essential oils into my shoulders, neck, and head.

I got into the tub once it was filled and I was a bit disappointed that it wasn't warmer. I labored in the tub for maybe three hours? It was intense and my contractions were fairly irregular. I remember as each one started, I would say "no," and shake my head because the intensity and pain was pretty high.

It felt like I pushed for a long time, but I assume it wasn't as long as it felt. I tried many different positions, and near the end, I was leaning back against the tub, knees up, with baby making her way into the world. I’m proud of myself for being able to breathe through the crowning, especially since it lasted way longer than I was prepared for. It was around this time that Ari woke up for the day, and my mom brought him in. Tim told him that his sister was being born. He was groggy and probably a little frightened by the room full of people and a noisy mama, but I was so glad to have him in the room to witness the birth.

I finally birthed her head fully, and I tried to push her body out, but it wasn’t budging. Jen checked and realized she felt fingers. She said, “well, I guess the hands are just going to come with.” I tried one last time to push and Jen told me to turn over. I got onto my hands and knees, and in the process, baby’s head came out of the water. Jen said, “out of the water, stand up!”. The second midwife helped me position my hands on the edge of the tub and bend my leg slightly. Jen used her finger to move baby’s hand off of her face, thus releasing her partial shoulder dystocia. She quickly came out into Tim’s hands with a big scream, and was passed through my legs, into my waiting arms, while Bon Iver’s Holocene played in the background. She was healthy with no complications and had APGAR scores of 9 and 10!

Violet Elizabeth Hochman, born September 21, 2014 at 6:14 a.m. 7 lbs, 9oz.

I cried and took in her beautiful face, repeating “oh, my God.” My perfect little girl, the baby I had always dreamed about, was here, and that was worth every ounce of pain and discomfort. I am not sure how to properly convey how much that moment means to me, the moment when I first lay eyes and hands on my child. In one instance, I feel relieved that I won’t ever have to birth a baby again, and sad that I won’t ever get to have that moment again. There is nothing more beautiful about being a human, nothing more incredible, than the fact that we can create new, perfect, life-breathing, blood-pumping beings. How lucky I feel to have that privilege.

I am so thankful to all the people who were involved, and to my oh, so skilled birthing team, who in a somewhat scary moment, were quick and poised, and confidently brought her into the world safely. I am so impressed and even more confident in midwives, home birth, and the natural ability that women have to birth babies (in most, low-risk situations). It was so special to have her at home, and to have my mom there to witness and support as well!

Birth photos by my lovely doula, Amy Haderer of The Mandala Journey.
Photos below by my talented, beautiful sister-in-law, Virginia Stiles, of Virginia Stiles Photography

The Ari Song

2015-03-14T19:41:00.000-07:00

On the eve of my first baby's third birthday, I am finally posting a recording of my dad singing "The Ari Song," which he wrote and played at Ari's first birthday party. It is wonderfully clear that Ari has changed all of our family in a significant way, and he does not lack in love. Enjoy.

Lyrics:

He's got a little extra chromosome

He brightens up my day

My big buddy and my best friend

What more can I say?

He takes my darkness and he makes it light

He makes what's wrong seem right

He has a little extra chromosome

How I love him so

He's my anti-depressant, my happy pill

His smile just fits my bill

He's my little Ari with a lion's heart

And a little extra chromosome

He has a little extra chromosome

He brightens up my day

He shakes his maraca and he makes me laugh

We just love to jam

When life gets troubles, he just says, pplllhh

Then Gramsy and him will dance

He has a little extra chromosome

And I love him so

He's my anti-depressant, my happy pill

His smile just fits my bill

He's my little Ari William with a lion's heart

And a little extra chromosome

A Poem for Ari

2015-03-09T20:41:00.002-07:00

How can I convey this love?

How can description of traits, capabilities, interests

convey what love I feel for this child?

THIS child- a child like the children I said I didn’t want.

My life without him would be devoid of inspiration,

of compassion, of a greater joy than I knew existed.

My life without him would be lifeless.

Frustration and Love

2014-04-11T19:01:00.003-07:00

Today was one of those days. Really just this afternoon. I thought napping while Ari naps was a luxury for this pregnant mama, and it is, but I didn't realize it is also a bit of a necessity. Ari decided not to nap today, as often happens on Fridays when he takes a 10 minute snooze on the way home from "school." So, mama didn't get a nap either. Instead, I spent the afternoon grumpy, tired, impatient, nauseous, frustrated, and brought to tears by nothing.

I hate when I get frustrated with my child. I long for more patience and understanding, and sometimes I just feel like a downright crumby mother. I know it isn't true, but sometimes it really feels that way. Thankfully, children are quick to forgive our shortcomings. Ari might have sensed that I was upset with him when I took a breather on the couch. He climbed up, with a little boost from mom, and proceeded to give the sweetest hugs to my face. How can I be mad when I feel that love?

It worries me that he seems to completely ignore my requests, especially when he is walking at a running pace toward the fish pond in the backyard. It's hard to keep my cool when he is in danger and won't even turn to look at me as a call for him to "stop!" And as my belly grows and I seem to injure myself more easily, I wonder how I am going to manage running after him and carrying him around as the months go on.

I have all these thoughts that bring me to tears, but by bedtime, things feel more manageable. I stare at him as he falls asleep in my arms. I stroke his tiny, perfect toes and imagine the cells that formed inside my body to create them. I think about who he is and how much I love him. It is absolutely overwhelming. And I realize that none of the other stuff matters. He couldn't ever frustrate me enough that I would stop loving him. He is the miracle of life. His existence is my whole world. This is a tough stage in life, and in some ways it will be nice to get past it. But, I know I will also miss so much about this time, right now. So tonight I will focus on those things. The way he learns something new every day, the way he pronounces his first words, the way he says "mama" as he grabs my face into a hug, the silly faces he makes, the way he plays "peek-a-boo" by covering his ears, the way he walks, the love he has for music, the way he always makes us laugh. There are so many more things to remember about right now, and I don't want to forget any of it.

A Birthday Ramble

2014-03-15T09:19:00.002-07:00

It turns out this blogging thing is hard for me to keep up with. Maybe there will come a day when I can write a post weekly or even daily, but for now I will continue to write when the moment calls me to.

Today I feel pushed to write because this is a very special day in my family's life. Today we celebrate the 2 years that Ari has been on the earth. I can't think of any day more worthy of celebrating!

It's amazing to me that times of anguish in life often become memories that I want to remember. There aren't many moments in life when our hearts are ripped wide open. The opportunity to truly feel deeply is one I want to recall every now and again, if only to remind myself that my heart has that capacity. Without the grief, my heart never could have opened up enough to receive the love that my son was bringing into it.

After we found out our new baby had Down syndrome, I knew our lives would never be the same. What I didn't know was that I would be thankful for that fact. I pictured the worst and all we have experienced thus far is the best! Ari teaches us everyday that he is more capable than the world would give him credit for. He teaches us compassion for others who are different than us. He helps us learn patience as he learns things on his own timeline. We are so excited to see how he will help shape his sibling, who is due in September, into a most loving and understanding person. I wish I would have had someone like Ari in my life growing up. I encourage you to befriend someone who might ordinarily avoid because they are different. You would be surprised how much you can learn from them.

One of the things that helped me get through our first days and weeks was reading Kelle Hampton's blog and book. I read her story of a birth diagnosis, much like our own, and felt so much less alone. So many parents share the feeling of fear when receiving the news and many people don't know where to turn. At first, it feels like you are the only one who has ever gone through this. It can be extremely isolating. In the last year, I have been honored to contribute to a wonderful project. It started as an idea to put together stories of diagnosis and submit it for publication. The publication part hasn't become a reality at this point, but a lovely website has been set up so anyone can access this information. 80 families from around the world submitted stories and pictures about their journey through the diagnosis of Down syndrome. What I like most about this collection is that it is divided into sections based on when the diagnosis was given. So whether a family was surprised with it at birth, like we were, or if they find out prenatally, they can find stories that relate to their situation and hopefully find comfort and direction. It's called "Unexpected" and can be found at www.missiont21.com
The website is up just in time for World Down Syndrome Day, March 21st. Please share with anyone who could benefit from it.

Now I will go snuggle my two year old and cry because the time goes by too fast!

Picture courtesy of Virginia Stiles Photography

Let's make a change.

2013-11-05T15:39:00.001-08:00

A common topic among those of us in the special needs community is the use of the word "retard" or "retarded" in a non-medical, non-musical, but slang sense. Of course we know, as a society, that using the word towards or at someone with an intellectual or physical difference is hate speech; where we are divided is regarding the use of the word in everyday life as a slang term meaning stupid, unintelligent, idiotic. etc. It is thrown around with such frequency and is so wide-spread, that people have begun to accept it as a normal and acceptable term to use. This is especially true in our younger generations who are growing up hearing it and not being made aware of the fact that it is not appropriate.

I used to say it, and I am ashamed to admit that is took the birth of my son to change that for me. I wish I would have know someone with an intellectual difference growing up, or that someone had told me that it wasn't right to say and that it actually hurt people who heard it. I would have listened and changed. I, like most people who haven't been educated about it, thought "everyone says it!" or "I don't mean it in that way." I try to educate people now, and most are extremely receptive and apologetic, understanding of my feelings. What I have a very hard time with are the people who get defensive and mean, telling myself or others that we are overly sensitive and ridiculous to fight against this word.

Sephora is marketing a product that has brought these insensitive people out of the woodwork. It has also provided an opportunity for the advocates (parents, siblings, and friends) of someone with special needs to try to make a difference. Kat Von D, a tattoo artist, designs a line of makeup specifically for Sephora. This week, Sephora actively marketed a lipstick by Kat Von D named "Celebutard." Wiktionary defines this word as a "blend of celebrity, debutant, and retard," or "a celebrity viewed as unintelligent; especially a celebrity who behaves badly in public."

Sephora's Facebook page and website have been slammed with comments and requests to take the product off the shelves or simply rename the shade of lipstick. They haven't yet taken any action to make it right, but we will continue to fight to make it happen. We can't make the whole word stop saying this word, but this is something we can do. Naysayers tell us we are overreacting. They ask "what does it matter anyway?" As Kat Von D herself responded, "It's just a F***king lipstick." Yes, it is. But that fact remains that every time something like this is allowed to be marketed and sold, the R word or the use of it in mash-up terms like this, just perpetuates the idea that it is somehow funny and acceptable to say. And as a friend of mine asked, "can I not even go and buy makeup without having to hear that word?!" I want you to know that I am not getting involved in all of this because I like to fight about stuff. I assure you that every time I hear the word used, it feels like a stab to my heart. Truly. It hurts.

Ari is going to have challenges in his life. We live in a society that doesn't always see his value as a human being. He will work harder than most to achieve his goals and he will be doubted at every turn. He may have additional health concerns to face in his life. Does he also need to fight to live in a world where he doesn't constantly hear a word that demeans and hurts him? Really? So, maybe this seems to some like a battle not worth fighting, but it is one I can fight, and I will do anything, no matter how silly some might think it is, to change the world he will grow up in. He deserves it.

If you would like to help in this cause, you can sign a petition here. Update: The lipstick has been pulled from the shelves. Here is an article about it.

I also found a great video today by Robb Scott. It is a spoken word poem he wrote for his son. You can see the video here. I wanted to post the words here as well. Enjoy! And please spread the word to end the word!

Breakin' Labels - by Robb Scott

Retard!

It's a word you woulda heard me use a lot,
to describe my thoughts on a rotten situation.
Like that attack on Iraq - that lacked any facts,
I sat back and said "now that's a retarded altercation".

I didn't use the word as a way to demean or be seen as being hateful.
Only to let you know you ate your weight in stupid,
and you still got a plate full.

So it was ok. It was playful.

But I didn't realize, tied to the other side of that word,
was a slur and people cried when they heard it.
I was oblivious to the insidious nature of the term.......

but I was about to learn it.

When my wife gave birth, there was no plan to rehearse
for the worst, no test for this lesson.
I was stressed and confused, I cried at the news,
This ain't the son that I guessed I was getting!

He's ailing and sick and thin as a stick,
he's too frail to even come home.
They said he'd be slow, success would be low,
and oh! he's got Down syndrome.

And that's when it all changed....

and I became estranged from that word you heard me use a lot,
my son was the one who rearranged the plot.
and taught me words aren't after-thoughts,
they're weapons -- they're used for good or not.

So I got to build him an armoured heart,
so this word won't rip my son's apart,
but I don't know where or how to start,
and that right there is the hardest part.

Because I can't protect him.

So I expect when he roams this world alone,
he'll find this word under every stone,
he'll flip it over and bring it home,
and go over it with a fine tooth comb.

And he'll examine all the ways it's said,
the nouns, the verbs, the adjectives.
But I hope at night when he goes in bed,
this word won't stay inside his head.

Instead,

I hope he dreams of this scene in France,
where he sees the word and they exchange a glance,
he extends his hands and takes the chance,
and asks the word, "would you like to dance?"

And they prance, and play all day and get dirty,
spread their wings and sing like a birdy,
Then he tells the word, "I know that it's early"
"but I got to go now that I know you can't hurt me."

And then he goes, and shows the world what we see,
a heart so big you'd hardly believe me,
and though I know it won't be that easy,
he'll break these labels, so he's able to breath freely.

A Happy Post

2013-08-07T17:47:00.001-07:00

Since Ari entered our lives, I have seen the best in people revealed. On the other hand, I have also seen the worst. It is unfortunately much easier to focus on the situations that make you sad and disappointed in humanity; The woman staring (without smiling) at your child, the comments made on social media, the “r” word being thrown around you carelessly, the stories of people saying terrible things about “those children.” So tonight, when all I want to do is cry over hearing such a story, I am going to focus on the positive things that have happened lately instead.

I will start by telling you about the wonderful opportunity I had to attend the National Down Syndrome Congress Annual Convention. A great friend flew into town to support our family and help out where she could. We were able to attend workshops to better educate ourselves on the vast array of topics regarding parenting a child with Down syndrome. I think, however, that we got the most out of the social aspect of the weekend. Upon arrival on Friday evening, I felt a gush of love and pride seeing the convention center and surrounding area filled with others like us, many who have been on this journey for a long time. I felt like we were getting to meet our new family in a way. Seeing all these individuals and families walking on the streets downtown, it felt like we were the “norm;” not the minority. It was quite amazing.

We were able to socialize with many other families and even got to meet (in real life) some of our friends from Instagram. If I haven’t mentioned it before, my Instagram community is my second family and I am so grateful to have them all on this journey with us! Tim enjoyed getting to talk with parents whose kids were a bit older than Ari, so he could get a better picture of what was ahead for Ari.

Probably my favorite part of the weekend was the big dance on Friday night. My friend and I danced and mingled and I teared up every 2 minutes. I looked around and I saw kids and young adults with Down syndrome who were so happy to see each other, and I saw young couples slow dancing and imagined that some of them hadn’t seen each other since last year’s convention. There was even a proposal at one point!! A young man that we were dancing with started clapping and cheering excitedly at the start of a new song. It was Britney Spears, who he LOVES!!! The DJ spinning the tunes? Yeah, he also has Down syndrome and he’s awesome. I looked around me and I saw Ari’s future. His beautiful, joyful, amazing future and I was overjoyed.

I was excited to get a hug from Tim Harris of Tim's Place!

The next weekend we took a long road trip up to South Dakota for the wedding of some dear friends and stopped many times along the way, mainly to give the little man a break to stretch his legs. Once in a grocery store, once at Wall Drug, and once in a cafe, we had people come up to us to tell us how awesome/cute/wonderful our baby was. They all had some connection to Down syndrome and made it a point to let us know that they saw beauty where others might see something strange and different. It means a lot to have those encounters.

And the last positive thing I want to tell you about is a comment that was left on Ari’s birth story. Here it is:

Hi! My name is Wendy and I am fortunate enough to be mother to Oliver. He has just celebrated his 17th birthday. It is so very simple my dear lady - enjoy and value every moment of this incredible journey you are now on. Your son will be AMAZING and you will have a tie which connects your heart to his with an invisible yet unbreakable thread. Difficult to describe. I have two children, as well as Oliver I have a daughter Anna, now 25 and who was 8 when my son was born. I love my children with every piece of my heart and equally. I would lay down my life or walk through fire for either of them without a moments hesitation. The connection I have with Oliver however goes deeper, right down to the depths of my very soul. I can't describe it any better than that. Maybe one day you too will understand that.

Please have a look at www.facebook.com/OliverHellowellPhotographer and also www.oliverhellowell.com and be enthused, encouraged and inspired by my boy and his achievements. You are still early on in the journey with your firstborn and so may still be harbouring doubts and fears. Please try to both be gentle with yourself - (you are after all only human!) as well as strong and enthusiastic about your son's future because trust me - you will be so so very very proud! Best wishes and love, Wendy.

Well, this made me cry in the best way. I am so grateful for parents like Wendy who are paving the way for our children. If you are a parent and have wisdom to share with us newbies, please do so! It is very uplifting and reassuring for us. And, everyone, go check out Oliver’s work. What a talented young man! He is such an inspiration!

There are more good things happening than negative things if we just keep our eyes open to them! Have a happy day!

Ari's First Birthday

2013-04-25T15:49:00.002-07:00

I am late in posting this as I was waiting for the edits on the photos to be completed. My lovely sister-in-law is also a fantastic photographer...lucky me! You can see more of her work at virginiastilesphotography.com

Ari had quite the party. I would have opted for a small family and friends gathering, but the problem is, we have too many friends! Good problem to have, right?! So, we had an absolutely packed house full of laughter and children and babies, and it was wonderful! I had a hard time choosing which photos to share, so I am going to share a lot of them!

The theme was "you are my sunshine," because he really is ours.

Singing "Happy Birthday"

He wasn't totally sure about the cake!

But he can always ham it up for the camera.

Mama went in for the kiss...and she got it! :)

We had the wonderful performance by my dad of the song he wrote for Ari. Ari accompanied on maraca. I will soon be having him play it again so I can film it and share it with all of you!

I love these of my brother holding my son.

Some more favorites - the latter is Ari with his Grandmas and his Great-Grammy looking on.

I wish we had a picture of every guest! But, enjoy these cuties!

Enough already mom, I'm tired!

Excuse the hand, it was too cute a picture to pass up!

Happy Birthday to my sweet boy! My how time flies!

Homemade Almond Milk

2013-04-23T13:44:00.002-07:00

I decided to start Ari's transition from breast milk to almond milk instead of the traditional whole milk, at least for now. Many babies have a hard time processing dairy and almond milk is much better nutritionally. Almond milk is lower in fat than cow's milk and is rich in Vitamins A, E, and D, and many antioxidants. It is also free of cholesterol and saturated fat, which cow's milk has. Although it does contain a smaller amount of Calcium (unless you get the store-bought fortified almond milk), it is more nutritious overall than cow's milk and easy enough to supplement with Calcium-rich foods. Why homemade? Because it is easy and fun to make, it tastes so so much better, and the store-bought versions all contain additives and sugar-based sweeteners. So, let's see just how easy and fun it is!

Take a cup of raw almonds and soak them in water for a few hours (preferably overnight).

Then rinse them and drain the water.

Now fill your blender with 3 1/2 - 4 cups of water and add the almonds.

There are many things you can add to your almond milk depending on preferences, but here is what I add:

A small section of a whole vanilla bean

2-3 pitted dates

And a dash of cinnamon

Now blend it up! If you have a Blendtec blender, there is a "whole juice" setting that works great!

Now, you will need to strain the liquid from the pulp (or not- your preference). For this you can use cheesecloth or what I prefer (and love to say out loud)- a nut milk bag! :)

I use this one. Pour the milk into the bag over a bowl.

Now use your hands to squeeze the liquid out. I like to tie the top of the bag so I can really work on it! I use both hands...but I had to use one to take this picture!

Once you are through, you will have a bag of almond meal left in the bag. Put that aside...don't throw it away.

I like to put my milk back in the blender at this point for a few pulses. Then you can pour it into a container (preferably one that seals) I love the ones I bought that have a twist top that seals the pitcher off.

There was a little left to pour into a glass and sip on. It is so creamy and wonderful! Seriously, it is nothing like the store-bought kind!

Now, what to do with the almond meal? You can dry it out by baking it for several hours on the lowest temperature setting on your oven and then run it through a food processor to make almond flour. This can be used as a substitute to other baking flours or added to oatmeal or smoothies. If you feel like baking right away, you can skip the drying-out process and put the pulp into your recipe immediately. Here is a recipe that looks great. You would probably need to make a double batch of almond milk to get 2 cups of pulp though. Here is one that takes just 1 cup of pulp, which is about what this recipe yields. I will be looking for other ways to use this pulp in the coming months. If you have ideas, let me know!

Coming out of the oven.

After the food processing.

I hope you will try making this yourself! Thanks for stopping by!

A Small Thing That Was Big

2013-04-18T13:45:00.000-07:00

Last night Ari laid down in the bath on his back so I could rinse his hair. He didn’t fight me and try to sit up. He didn’t scream. He even laid back down all on his own and seemed to enjoy it!

This may not seem like a big deal to you, but it was more than a little milestone for me. You see, about a week before his first birthday, I had a mini breakdown as a result of his not wanting to lay back in the water. It was silly and very much out of the blue, but I find that my emotions surrounding my boy are often like that. He was crying and trying to flip over, seemingly scared of having his ears down in the water. Tim walked in and I said something like, “well, I guess swim lessons are out,” since I pictured him being miserable. Tim told me I needed to stop saying things like that and that he would be just fine. He walked out the door and my floodgates opened. I had always pictured Ari liking swimming and being in the water and he was generally very happy in the bath, but I began picturing him not being comfortable in a pool, and with that, picturing all kinds of other things he was never going to do or be.

I often find myself getting upset about one thing and having it spiral out from there, one negative thought giving rise to the next until I can’t even remember what started my mess of emotion. Well that is what happened. I posted a picture that night on Instagram, where I have an amazing support group of moms, and I explained how I am usually fine about my son’s diagnosis (as it doesn’t really affect much right now), but that sometimes I get so upset out of the blue. It seems like my love for him is so huge that I can’t imagine him not getting to do certain things without my heart breaking a little. I figure this particular wave of anxiety and sadness was likely brought on by the fact that he was about to turn one and we were about to celebrate a day one year ago when we were not celebrating, but mourning. Well, my wonderful mama friends helped me realize that not only am I not alone in this, but that Ari is going to do so many amazing things in his life. I already know this, of course, but to be reminded of it every now and then is necessary.

Back to last night... he did a small thing. He laid back in the water and was happy about it. But, to me, it symbolized so much more. It reminded me that he will get where he needs to be, but it will be on his own timeline. Just like when he went through the crowd anxiety phase. I wondered if he would ever get over it. Now he smiles and flirts with everyone around and doesn’t seem bothered by loud noise. Maybe someday he will be a back stroke champion in the Special Olympics, or maybe he will prefer to doggy paddle like his mom who never learned how to properly swim.

I put so much on him that is my own definition of what a person “should” do and like. Down syndrome or not, he is who he is, and I need to accept that and cherish what abilities and preferences he shows as he grows. This same principle applies to all of our children. Each child is an individual and worthy in his own right. We all have hopes and dreams for our children, which we should, but just as we can’t chose their sex, we must allow them to be who they are, not who we expect or plan for them to be. Sometimes I think that what he is going through or struggling with is related to the fact that he has Down syndrome, when in reality, all kids go through rough phases.

I can’t imagine Ari being any different than he is: a smiley, funny, stubborn boy who can brighten anyone’s day.

A boy who is crawling and pulling up to stand, who likes to babble on and on and yell even!

A boy who loves to play all of his various instruments and is motivated by crackers!

A boy who makes me laugh all the time with his funny faces, squinty smile, and wild hair.

He is a lovely baby who makes our lives richer. What more could we ask for? The rest of it, well, we are taking it one day at a time.

Ari's Journey Earthside

2013-03-14T19:14:00.001-07:00

Ever since I can remember, I have known that I wanted a natural birth. My mom had me naturally and presented a positive outlook on birthing and our ability to birth unmedicated, as women have done since the dawn of time. Through the years, my image of birth began to look, more specifically, outside of the typical hospital setting. With the help of an extremely informative and wonderful movie, “The Business of Being Born,” my husband, Tim, was on board, solidifying my decision that this was the best option for us. We researched and found the only freestanding midwifery center in Colorado and, with great anticipation, got signed up for our March birth.

My pregnancy progressed normally, though I had a high HCG (pregnancy hormone) level right off the bat and was asked to have an early ultrasound at 8 weeks to see if I might be carrying multiples. Tim and I were relieved to find out that wasn’t the case as we didn’t think we were up to the challenge! Because of the high level, I was tummy sick all the way to 16 weeks, losing weight in the first trimester. Thereafter, I began to put on the weight--one lb. over the suggested maximum weight gain by 39 weeks. At 12 weeks, we traveled to Greece on vacation and dreamed of our baby, spending time finding the perfect Greek dress (we were convinced we were having a girl).

Our 20 week ultrasound rolled around and we were so excited to find out the sex for sure and to get confirmation that our baby was healthy and growing properly. When the doctor announced that we were having a boy, the look exchanged between Tim and I was priceless...something I will never forget. We were shocked, but so excited! The rest of the ultrasound went perfectly and showed a very healthy baby. The weeks rolled on, taking what seemed like a lifetime. Our baby, who we decided would be named Ari, which is Hebrew for “Lion,” continued to grow and get better at his acrobatics! I savored the special moments with him in my tummy, spending lots of time sitting in the big comfy glider in his nursery, dreaming of what it would be like to have him in my arms!

From our birthing classes I knew to expect a slow early labor, even days long, so when I began having more regular contractions (about an hour apart and fairly painless) in the middle of the night on March 13, I thought little of it. Of course I hoped it was the real deal but I didn’t want to get myself too excited and instead tried to sleep as much as I could . I decided I would reassess in the morning. When I finally got up for work, having slept very little all night, the contractions slowed down, as I had anticipated, so I decided to go to work and see if anything changed through the day. Indeed, around 10 am, the contractions got closer together, every 20-30 minutes or so, and gained intensity. My coworkers kept telling me go home, but I really didn’t feel the need to. They all decided we would go to lunch as it might be my last one before the birth of my sweet boy. Through lunch, the contractions were painful enough that I needed to stop talking through them.

Luckily, I was leaving work early that day for a planned check up with the midwives. I checked in and told the woman at the desk, also the teacher of my birthing classes, that I thought I was in labor. She asked me a few questions and I took a seat in the waiting area. As I closed my eyes and held my seat through the next contraction, I felt eyes on me from the front desk. When it let up, she was staring at me with a look that said "oh, you weren't kidding!" and quickly offered me a seat in one of the back rooms--I was probably scaring the others who were waiting. I was seen for my appointment by midwife and owner, Tracy. She checked my cervix and found that my baby was very low and I was very effaced. I don’t remember how dilated I was, but I don’t think it mattered. From how low he was, she suggested that the on-call midwife Laura would be seeing me that night or she, herself would see me when the shift change happened the next morning. She told me to get something to eat and to try to rest up as much as possible.

I went home around 4 pm and told Tim what was happening. I sat on the wood floor in our living room, where a patch of sunlight was beaming in through the window, and soaked up the warmth while my contractions gained in intensity. I was so excited that this was really happening and that we would get to meet our son shortly. He had been very active in utero and I felt so connected to this amazing being inside of me. I would often lie in the bath and cry watching my belly move and tell him I couldn’t wait to see him, but that he should take his time if he needed it. I had been a little worried that I would go past the 42 week mark and not be able to deliver at the birth center, as is their policy. Now, I sat in the light of the descending sun, one week before his due date and felt thankful he was ready to come into the world.

Tim decided to pick up some Chinese food and I tried to take a nap while he was gone. It wasn’t happening. The pain was increasing steadily and I didn’t feel good lying down. I needed to sit through every contraction for the rest of the night. We went downstairs and watched The Hangover 2, a terrible movie. Luckily, I barely made it through 10 minutes before we needed to begin keeping track of times between, and length of contractions, which we used a phone application for. I tried to eat some food, but I didn’t feel hungry or interested in it at all. The pain was steadily increasing but the contractions weren’t very long and were too far apart to call the midwives. We did call the on-call midwife, Laura, and give her an update so she knew that she would probably be seeing us soon. She suggested that I try to slow everything down so I could get some rest. She said sometimes taking a bath will calm the contractions. I got in the bath and had some of the worst contractions yet, needing to grip the sides of the tub to get through them. I couldn’t relax and lay back and nothing was slowing, so I got out, which was extremely difficult. I remember standing up being just terrible. Every time I stood, I would end up falling forward into a wall or to the floor to get through the contractions.

The rest of my time at home was spent in the baby’s nursery on the big gliding chair. Tim, who was tired and not feeling well (he had a cold), turned out the lights and laid (layed? lain? :)) on the floor. We decided that we would try to rest between contractions. I was able to rest slightly and the contractions started to space out a bit, but each one was still very painful. This is when I remember letting out the first loud moans. I got to a point where I was frustrated at the timing not lining up just right, because I felt like we should go to the center soon. We turned the lights back on and suddenly, the contractions began lining up with the exact correct time. We were suppose to wait for the timing to line up for a solid hour, but after 30 minutes, I said I thought we should go now. I told Tim that I thought I was in transition (the worst contractions, right before pushing), and if it wasn’t transition, then I didn’t think I could do it! We called our midwife and doula and got ready to go. Getting out of the house and down the short walk to the car was one of the hardest things I have ever done! I had to stop and bend over several times...good thing no neighbors were around to witness it!

I labored loudly all the way to the birthing center and was greeted at the entrance by my doula, Amy. I was happy to find out that I was already 8 cm dilated and was relieved to be able to get right into the birthing tub after I was examined. The water felt fantastic, but of course my focus was on getting through the contractions. I felt the urge to push very soon after getting in and was encouraged to do so. Amy, Tim, and Laura were all such amazing supports for me, telling me how strong I was and what a fantastic job I was doing. Within minutes, the top of Ari’s head was visible. Tim got in the tub so he could help support me and help to catch his son. I don’t really remember the last push, just being handed my baby by my midwife and my husband.

I’m at a loss for words when trying to describe seeing my son for the first time. I can’t convey the joy and love and amazement that comes from seeing the life you have connected with for 9 months materialized into the world, taking his first breath. He reached up his straightened arm and pressed his hand into my chin and let out a big cry and I couldn’t quite believe that this was happening. I felt stronger than I ever have; so accomplished, feeling that if I could do what I just did, I could do anything!

Ari William Hochman
Born on March 15, 2012 at 2:21 am
5 pounds 7.5 oz, 18 inches

Tim eventually cut Ari's cord and Ari was taken to the hall for a weigh-in. He was very small, something the midwife took note of even before he came up out of the water. She was concerned that he may have trouble recovering from labor, but he had done just fine. She did say she was going to contact his pediatrician to see if we should go in that day just to be safe. We hung out on the bed and attempted our first latch...he did okay! Tim and I talked about the fact that he looked different than we had expected. We had assumed Tim’s genes would be prevalent, but he looked just like me as a baby, blond and blue-eyed. Tim said he thought his eyes looked funny, but I said that newborns always look different and that he was fine. I thought nothing more of it and I thought he felt the same. He went to the other room to lay on the couch and try to rest, while I stayed with Ari and ate a yogurt and a bowl of oatmeal. At some point, our nurse took Ari to the end of the bed to take all of his measurements. Everyone seemed very quiet and I assumed it was just because it was early in the morning after a long night. The water was being run in the bathroom so Ari and I could have our long-awaited herbal bath before going home. Unfortunately that never happened.

I remember everyone leaving the room and then Laura, our midwife and Melissa, our nurse, returning with Tim and telling us they needed to go over some things with us. Laura began by saying that they had found some things while doing Ari’s checkup. His ears were a little low, his fingers a little short, he had a gap between his first two toes, single palmer creases on his hands. I listened in a daze, wishing she would get to the point, not having a clue what that point would be. Before she got to it, Tim interrupted and said, “does he have Down syndrome?" I was shocked to hear him say it, like he had been suspecting it all along. I found out later he had gone to the restroom after mentioning his eyes to me, and googled images of babies with Down syndrome. I couldn’t see anything different in him, so I was taken off guard. Laura answered by saying, with tears in her eyes, "Mama, I'm not telling you that your baby has Down syndrome", and explaining that only a genetic test could confirm that, but that the markers they found all point to this being the case. Both her and Melissa cried and tried to comfort us by telling us that he was going to be the most loving and wonderful child. I don’t actually remember her saying this, but I talked with her many months after and she recalled the events of the day with me. They told us that we need to be transferred to the hospital because he would need to have his heart checked and that an ambulance would come to transport him in the warmer. I don’t remember crying, just staring into nothingness and feeling completely numb except for the burning knot in my gut. The ladies left the room and shut the door and Tim and I hugged and cried. I remember very clearly that he drew me into a hug and he said to me through his tears, “I love you so much.”

The ENT’s entered with a cart to take Ari out in. The next shift had just begun, so the owner, Tracy, came to help us get to the hospital. Tim and I were to drive over separately while Ari went in the ambulance. I remember Tracy saying how handsome Ari was and I feigned a smile and didn’t go to him before he was wheeled away. I didn’t recognize him as mine at that moment and it felt so awful. We drove over in silence (or did we talk?) and I sat in a wheelchair at the hospital entrance while Tim parked the car. I picked up my phone to call my mom, who had been waiting anxiously ever since Tim texted out a picture of our new family after the birth. It was the hardest phone call of all that I had to make, but she was the first person I thought to call. I needed my mom! She answered excitedly and I told her we were at the hospital. She asked why and I told her they needed to check his heart because they think he had Down syndrome. She was in disbelief but told me that he was going to be okay and that she would get off work for the day and be over to see us as soon as possible.

We were directed to Ari’s room in the NICU and I was propped up in a chair by one of the nurses, who then handed me my boy, hooked up to a million wires. He had been laying under a warmer in just a diaper and she said he was cold so I should try holding him skin to skin. She helped tuck him inside my shirt and told Tim and I to try to get some rest. She turned off the lights and closed the door. I remember closing my eyes and leaning back in the chair, willing myself to sleep. I was convinced that when I woke up, this nightmare would be over, and I could go back to the time before he was born. Tim sat in the chair off to the side of me and we were quiet for a long time, though I don’t believe either of us slept a wink. I don’t know how much time went by, but the nurse came back. They had found a room for us to sleep in that wouldn’t cost us anything, but it was quite a ways away. We decided to leave Ari for a short bit to try to rest. Tim wheeled me to our room and we each took a hospital bed and curled up into balls. I began to fall into sleep, but Tim was sobbing and I couldn’t sleep without trying to comfort him first. I curled up behind him on his bed and we cried hard together. He told me that he did “not want this.” He didn’t want to be a “special needs parent.” I said I didn’t either, but what could we do? He told me his heart was broken and it broke me to hear that. We have never gone through something so emotionally trying and I hope we never will again. I had thoughts in that room, thoughts I don’t like to admit. We felt at times that our life was over. But I told myself that he was my baby and I loved him, even if it felt like he wasn’t mine, or at least he wasn’t the baby I had expected. I told Tim that he was just a baby and he needed his parents. All we could do was be there for him and love him.

My mom arrived, and with her arrival, she brought an instant love for her first grandbaby and a positive energy that I was sorely in need of. She had been focusing all her prayers on Ari's healthy heart and arrived just in time to sit with me through his exam.

Luckily Ari’s heart only had some minor concerns, nothing of which needed to be dealt with right away, though he did have low Oxygen and was jaundiced. We ended up staying in the hospital for five days, everyday melding seamlessly into the next. With no windows in the NICU, it truly felt like an eternity. There are many details I could go into ,but I will sum it up. We had family and friends visit and tears shed, lot of them, but there was such an outpouring of love in that place as well. Once my dad and brother arrived, there was a moment when just my immediate family was in the room. My dad said a prayer, the gist of which was asking for Ari to have a great, healthy, happy life and to bring light to ours. We all cried big heavy sobs and bonded as a family like never before. It was a moment I will never forget, and I am sure my family feels the same. I believe the grieving was a very necessary part of our experience and inevitably led to healing. We got the final word on his genetic test results and though we were expecting it, it was still hard to hear. We also had hoped he might have Mosaic Down syndrome, where only some of the cells are affected, since he didn’t show all the characteristics one might normally see in a baby with Down syndrome, such as low tonality.

One of the first mornings I recall, I was holding Ari after a feeding and in the NICU room alone with him. I sang to him and cried. I whispered to him that I was sorry. I was so so sorry that I couldn’t give him a better life. Tim came in shortly after and found me crying. Most of the time until then, I had kept on a brave face to help support him in his sorrow and it seemed like that morning the roles reversed. Of course they continued to ebb and flow as the weeks went by. It was one thing I think we both took from the experience, that we were able to hold each other up when the moment called for it. We grew stronger as a couple in those first trying days. By the end of the five days, we were more than ready to go home. I was convinced that once we got home, we could find a way to get on with our lives. We finally got cleared to leave and my brother came to help us pack everything up and get us home.

Going Home

Things definitely started to get better once we were home and able to get in a better routine. I spent one feeding a night in Ari’s room, to let Tim sleep, and I usually fed him his bottle with one hand, propped the pumping cones up on my legs and used the other hand to flip through the pages of the book “Gifts.” I would usually be sobbing, sad, tired and in a generally bad way, but I made it through to the other side eventually. Those first weeks were the absolute hardest of my life thus far.

I remember sitting on our bed holding Ari- I can’t recall exactly when, but I started on again about how sorry I was and that he wasn’t going to have a very good life, when it hit me-- he was going to love his life! And we were going to give him every opportunity. He may not have the exact life that was in our heads, but it wasn’t about us anymore. It was about him and his happiness. 99% of adults with Down syndrome report being happy with their lives. I can’t imagine that number would be anywhere near as high in the general population. This was just the beginning of my acceptance of our situation and the rest of our story is still unfolding. What I can say right now is that I couldn’t love my son more if I tried. He brings me joy tenfold and brightens my days. I truly believe that he will do great things in his life; he has already given my life so much more purpose. I am not the same woman I was one year ago and I am thankful for every bit of it.