14 articles Articles posted in Down Syndrome

A Day In The Life (With Down syndrome)

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What is different about life with Cop? Not much actually, compared to life with any other kid.

The differences are small, or maybe they just seem that way because we are who we are, all of us in Eisenbergia.

A day in the life goes like this: Wake Eat Therapy Sleep Eat Play Sleep Play Eat Read Books Sleep

Most of that probably sounds familiar if you have kids. Copley has an older brother Henry, and they both went through the same phases, though Cop’s phases last longer. DSC_0439 Cop is 20 months old. He is funny, he makes jokes, he loves to laugh. He can’t walk or crawl, but he has figured out his own way to move around the house at lightning speed- usually when we forget to close the bathroom door and he sees an opportunity to play in the dog’s water bowl. He has started saying “boo” when he wants a book and “mo” when he wants more. He likes to go off by himself and play legos sometimes. He sleeps through his big brother’s bedtime foolishness. He freaking loves waffles. I make them every Sunday.

He pets the cat, he is nicer to the animals than his big brother is. Hell, he is nicer to everyone than his big brother is. He is a snuggle bug. He is a jelly bones (he has low muscle tone and loose joints). He never hesitates to let us know when he is mad. Or happy for that matter.

How has Down syndrome changed our lives? Entirely, completely, and not at all.

Would we change our lives, would we wish for a life without Down syndrome? Not for a minute.

Typical

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It’s true that most days I forget about Down syndrome. I mean, it’s always there right? It’s not like Cop is ever going to catch up and be typical. He’ll always have an extra copy of that 21st chromosome and everything that that means for him. But most days we don’t think too much about it. I’ve said that before and I’ll say it lots more I’m sure because it’s true. It’s hard to imagine how easy it is to forget.

This weekend I took the kids to one of those indoor play places, where they have all sorts of toys and dress up clothes and kitchens and stuff. Four days at home creates a lot of pent up energy, for kids and adults, and it’s nice to cut the kids loose somewhere they can run and play and go bonkers with other kids. Unfortunately, there weren’t any other big kids there so I let Cop play in the little kid area with a couple other babies, and I split my time running back and forth checking on him and playing with Henry.

One thing that parents invariably do at these places is compare milestones. I was grateful to have my attention divided, it got me off the hook from interacting with these 2 eager first time moms. Their babies were 10 and 11 months, crawling of course, standing, practicing walking.

Cop’s enthusiasm is infectious, his big thing right now is waving, he will wave the heck out of everyone we see, everywhere we go. And so it was at the play place. He’s waving and doing his ingenious but funky army crawl to slowly navigate the tot area. When I come back to check on him one of the moms asks me his age.

And that’s when the pit starts. I know what will happen when I tell her, surprise then confusion will flash across her face, she’ll compose her features into a polite mask and say “oh…?”

And so it does. It always does, it always plays out like this.

And at this point I’m done with the moms, but I’m just starting on me. I’m so disappointed in myself, because in that flash of surprise and then confusion, I’m always tempted to explain, to tell them that Cop has Ds and… what? Apologize for him? Explain why he doesn’t meet the expectations of strangers? I won’t. I don’t. But I wish I didn’t feel like I what? Need to? Want to?

I don’t know. I ignore it, let them wonder, let them ask themselves what’s “wrong” with him. Who knows, maybe they can tell from looking at him that he has Ds. I have no idea. My frame of reference for that sort of thing is gone.

But I’m disappointed in myself. For even though I offer no explanation, I’m ashamed that for a fleeting second I felt like I should.

14 Month Pictures

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And just like that, seemingly overnight, my little baby is kind of looking like a big toddler.

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A boy. A kid.

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He loves sitting, laughing, eating beans and corn chips, has two bottom teeth and is getting two top teeth as we speak.

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He’s a happy, calm, and curious baby. I suppose he’s not always happy, but in comparison to his brother who NEVER seems to be happy, Copley is a tiny ball of sunshine.

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He looks at everything, he watches everything. He laughs a lot. He yells at us when he is displeased (usually when he wants a cup of water or some more beans) and does a happy dance when I get out a wrap to wear him when I get home from work.

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He is still nursing, but infrequently and I’m aware every time that it may be our last time… or we may hang on like this for another year. There is just no way to tell.

I normally aim for consistency when editing a set of photos, so I apologize that today’s edits are all over the map. I’m taking a processing course right now and there are just too many fun things to try!

If you don’t already follow us on Facebook, head over to check out an outtake from this little photo shoot! It had me rolling!

Down Syndrome At 13 Months

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Our baby is starting to look so much like a boy. He has so much personality, he is so funny, and lovey, and he is just absolutely enthralled with his brother. He is getting pretty good at rolling around to get where he wants, and he’s even army crawled a foot or two once or twice, though he doesn’t do it often because it takes a lot of effort and really wears him out.

He loves blowing raspberries, he has mastered one sign (more), eats everything in sight but likes beans the best. He can sit with help, and enjoys it but can’t get up and down by himself yet.

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We live happily in our family bubble, we don’t notice Down syndrome; we focus on ability not disability. It’s easy to do in the bubble.

Last weekend I went outside my bubble. I went to Tempe and met my friends and their darling babies too, many of them who are Cop’s age and they are standing, walking, starting to talk. On day one I felt this little pang, this pinch of what life “should” be like.

Should. What a stupid word.

On day two the pang was gone. An ache for my boy replaced it. I missed him. I missed carrying him around because he can’t get around himself, I missed holding him up so he could see, I missed the weight of him on my back, and the pressure of his head on my shoulder when he rests. I’m embarrassed that I still get the pang, sometimes, the bit of jealousy about what life “should” be like, because if our life was different, if Copley weren’t I’d be devastated. He is perfectly him, and perfectly ours.

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On day three something funny happened. I went to a conference session the topic of which was Babywearing and  SPD/ASD- it was the first special needs session of the weekend. I listened, and I learned, and I also felt. I felt the undercurrent of shared struggle that parents of special needs children bear, even if we don’t think of it as a burden. It’s not fear of disability, it’s not fear of hard work or annoyance at the complicated ballet of scheduling our family has to pull off to accommodate two kids and four therapists, life isn’t hard, we aren’t angry or sad.

But we’re tired. Exhausted. Fearful about the future that holds so many unknowns.  Alone and isolated and afraid to drop one of the many balls we have in the air. Worried about friendships and community and love- not for us, but for our children as they grow and integrate into our communities. Normally I push my fears to the back of my brain and smother them because there are too many things that require my attention right now, and to linger on fear prevents me from living presently. But as I sat and listened, my eyes grew wet, and tears started to fall. And I wasn’t sad, they weren’t tears of grief, I’ve spent those tears, they were just so many overwhelmed feelings bubbling out.

To hear women who’ve come before me say yes, it’s exhausting, yes, it will become even more exhausting in the future, and yes, you can cope, you can manage, you can thrive. This is my village, this is why I’m here.

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Waiting for my flight home I sat at a lunch counter at the airport and picked at some french fries. I chatted with some men returning from a bachelor party, and the bartender who was egging them on, angling for a big tip. It was fun, a fun way to kill time when all I wanted was for time to fly so I could get home to my babies.

One of the men on the trip said he was an agent for YouTube stars which turned the conversation towards funny viral videos. I handed the bartender my credit card and was about to sign the tip when he made a comment about how “fucking retarded” people are. My hand froze, and I looked at this man, a man who works for tips.

It used to be hard to speak up, to chastise people and ask them to be better, especially when the mood was jovial and the crowd was laughing, but it isn’t hard now.

I looked him in the eye and said “the funny thing about a job like this, is you never know who is sitting at your counter, about to give you a big tip. My son has Down syndrome, he’s just a baby, and when you say things like “fucking retarded” you are being hurtful and extremely offensive, not just in the abstract, but specifically about my beautiful one year old. There are so many other words you can choose, please choose better, be better, and not only because you never know who you are talking to, but because you never know who might overhear you, and because it’s just time to let that word go.”

I didn’t feel that punch in the gut feeling, I wasn’t sad, I wasn’t really even angry. I think I got through to him, at the very least I don’t think he’ll ever say that word at work again. I tipped him 20%  and got on my plane. When my family picked me up at the airport my beautiful boy wouldn’t let go of me.  And I couldn’t let go of him.

World Down Syndrome Day

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Last year at this time… I didn’t know. I had no idea how in love I’d be with Copley, and with Down syndrome. I had no idea I’d count myself among the lucky ones. I read a phrase that stuck with me “We aren’t sad and life isn’t hard” I wonder why we ever thought we would be.

Join me today in a celebration. I’m proud, I’m happy, I’m so in love.

Babywearing And Down Syndrome

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I guess now is as good a time as ever to tell you guys I’m now an official Volunteer Babywearing Educator with Babywearing International.  I took and passed my test last weekend, and I’m working with the BWI Chicagoland group.

When I was pregnant, avid babywearing mama and woven wrap collector I am, I was busy dreaming and planning to wrap a newborn again.  Babywearing is a big part of my life as a mama, for both utilitarian and hobbyist reasons. One of my first questions, after, you know, asking the BIG questions, was how am I going to need to adapt babywearing to meet our needs?

Of course there is no way to predict or plan or know ahead of time which characteristics or challenges your baby might have, but on the whole, there isn’t too much extra to worry about wearing a baby with Down syndrome. The biggest challenge for us was hypotonia, low muscle tone that makes Cop a little weaker and floppier than his brother was.  This means you have to keep a better eye on positioning when wearing.

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As far as what KIND of carrier is the best choice for you, the answer to that question deoends on what kind of carrier you like! But I will add that in my experience I’ve found the more adjustable the better.

I prefer a ring sling to a pouch

 

I prefer a woven wrap to a stretchy wrap

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I prefer a mei tai to a SSC or buckled carrier.  Now that’s not to say that you can’t use a pouch, a stretchy wrap or a soft structured carrier, but you’ll have to be extra careful about fit, and make sure you use inserts or bolsters to keep baby in the proper position.

Friends and Family Q&A

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Someone I love just got a prenatal Down syndrome diagnosis, what can I do help them?

I put this Q&A together based on questions I received from some friends who were brave enough to ask. I like talking about Down syndrome, I don’t want people whispering about it or acting like it’s taboo or off limits, so if you have questions, I really encourage you to ask me, I’m happy to talk about our experience.

What do I say to my friend?

Anything. You can’t say the right thing right now, because the right thing doesn’t exist. That’s not your fault. Your friend’s world just got thrown off kilter, they need time to adjust. They are figuring things out. Give them space and time if they need it, but they may not want space either; follow their lead. The amount of supportive love and messages we got in the early days was maddening, but looking back now all I remember is how much people flooded us with love.

Don’t blame them for having lots of conflicting feelings and emotions. Don’t turn their child into a mascot for your pro life politics. Don’t say you’re sorry. Don’t pity them.

Do tell them you love them, and that you’re excited to meet their baby. If they have older children and you are able, offer to babysit. They are about to have a lot more doctors appointments.

People came out of the woodwork to tell us stories of a kid with Ds they met at the park, or their cousin’s aunt’s neighbor who was the sweetest man ever. They sent me email addresses and phone numbers of strangers they expected us to call because they also have children with Ds. I’ve been flooded with recommendations for blogs and people have sent me the same YouTube video a hundred times. It’s annoying. But also? It’s amazing. We are so lucky so many people love us and care enough to reach out, recommend and hit send. Don’t stop, we love you too.

But what do I say? What words do I use?

It should go without saying that the R-Word is off limits. But you might not know not to call their child a “Down’s baby”. Their child is a beautiful tiny human who happens to have an extra chromosome. He has Down syndrome, he isn’t Down syndrome. Use people first language, please; for example, Copley is a baby with Down syndrome.

Will their baby look like them?

Of course he’ll look like them! He’s made of their DNA! I admit, I was a little worried about that too when I was pregnant, as silly as it seems now. We have a doctor who asks us at every visit if we are sure he has Down syndrome, “because he doesn’t look like he has Down syndrome”. Come on, Doc! Of course he looks like he has Down syndrome (I say “looks like he has Down syndrome” not “downsy” which I’ve heard, cringe), in so much as anybody can look like they have Down syndrome. That is, he does exhibit certain characteristics associated with Down syndrome, but that doesn’t mean he looks like every other person who has Down syndrome, or that he’s not the cutest damn baby in the whole world who, incidentally, looks just like his mama.

Does it have degrees? Is it possible to have mild Down syndrome?

Their baby will have an extra chromosome in every cell in his body, that’s how Ds works. A friend shared an analogy with me once, and it was so simple and brilliant.

Down syndrome isn’t a spectrum is disorder, it is a syndrome where people with Ds share in a set of characteristics, each of varying degrees.
Think of Ds like a salad bar. It’s not a perfect analogy but it simplifies the point.
The salad bar contains all of the characteristics of Ds. As you watch people go through the salad bar, no one gets every item on the salad bar. Some get several things and some just grab a couple. Some get heart issues, GI problems, hearing problems, sandal gap toes, Palmer creases, small ears, etc. but not everyone gets the same amount of any one item.
Everyone gets lettuce though. You can think of lettuce as intellectual disability. Some people get more lettuce than others but everyone gets some of it.
And almost everyone gets salad dressing. Dressing is the hypotonia or low muscle tone. Some just get a little and drizzle it on the side of their plate, like someone with Ds might have mild hypotonia in their arms, or some might gets lots of thick dressing, like some people with Ds have hypotonia throughout their body, including the organs and digestive system causing their digestive system to move slowly.

In the end, you may find a few salads that are similar to each other but ultimately no two salads will be alike. People with Down syndrome have characteristics in common but each has their own unique combination of those characteristics.

I’m worried about their baby. Some of those “characteristics” sound like pretty serious health issues.

They might have some pretty serious health challenges, Or they might have a totally healthy baby. Some of us get so lucky, but some of us are given babies with broken hearts. It’s not fair.

10 Things You Should Know About Your Prenatal Down Syndrome Diagnosis

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1) This is not the end of the world. It’s not even the end of the world as you know it. In a few months, it will surprise you how little you think about Down syndrome.

2) You aren’t special. Or chosen. You weren’t given a special child because you could handle it. I don’t mean to burst your bubble, I want to lift you up. You don’t have to be Supermom, you just have to be mom.

3) There are some medical things that are going to become pretty important. If you haven’t already, soon you’ll start seeing a MFM for more and better ultrasounds to keep an eye on your baby’s growth, a cardiologist for a fetal echocardiogram to look for and plan to treat a congenital heart defect that is common in babies who have Down syndrome, a geneticist or genetic counselor to learn about Down syndrome and do your baby’s karotype, and you might start BPPs (bio physical profiles) and NSTs (non stress tests) to keep an eye on your baby toward the end of your pregnancy. I know that sounds scary and overwhelming. And it is, it’s also exhausting. But it doesn’t last forever, soon your baby will be here in your arms.

4) YES you CAN breastfeed your baby! A lot of people will tell you that babies who have Down syndrome will have trouble nursing. They should tell you that they MAY have trouble nursing. And they may not. It’s a great idea to be proactive, especially if this is your first baby. Go to a few La Leche League meetings, talk to a Lactation consultant, read The Womanly Art of Breastfeeding. Grab a nursing pillow and stock up on some nipple cream. You can do this.

5) Some people are awful, mean, ignorant, spiteful, rude, and hateful. I’m sorry. I don’t have advice about those people because they make me mad and sad too. Hurtful comments and language should be a thing of the past. I wish I could tell you it was.

6) Some people are well meaning, loving, caring… And still can be hurtful. They don’t mean it, and they wouldn’t be if they knew better. Try to remember the difference between the well meaning and the spiteful, and give the former a break. Your friends and family want to be supportive, but odds are they are as lost as you are, and it’s going to fall to you to teach them how to support you.

7) Find community. Find a local group, we love our local Gigi’s Playhouse, find a Facebook group, go to babycenter and find both Down syndrome and prenatal diagnosis groups. It’s nice to know people who just get it.

8) Feel your feelings. whatever they are. It’s complicated and it’s okay. Are you feeling sad? Angry? In denial?  It’s so normal, give yourself a pass on adding guilt into the mix. You won’t feel so lost for much longer.

9) The Internet is full of great stories and YouTube videos that will bring tears to your eyes AND put a smile on your face. Just don’t read the comments! (see #5)

9) Resources! Start here at www.downsyndromepregnancy.org There’s a free downloadable ebook with so much information, tips on how to deal with comments, how to tell family and friends, and even a grandparents guide to help them adjust.

Congratulations! I’m so happy for you, you are so lucky! I mean that, Down syndrome sounds like such a big thing when you first hear the words, but really, the similarities vastly outweigh the differences. Your baby will eat, sleep, poop. Give hugs and kisses and snuggles. Laugh and cry. And you will too. Welcome.

Out Like A Lamb

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On March 14, 2013 we received a prenatal diagnosis that Cop had Down syndrome.

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March. You know the old adage that March comes in like a lion and out like a lamb? So does a Down syndrome diagnosis. Believe me when I say we were scared and sad and grieving and feeling all the other feelings we were supposed to feel. When I reread the posts I wrote during that time my heart hurts for us, because we felt lost and helpless. We had pretty decent doctors and staff, though I know that’s not often the case, and I hear so many horror stories from parents about the awfully insensitive things people heard from their care providers when they received their diagnosis. I don’t know if I ever went into the details of our story, but I will today.

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I’ve told you before about our false positive with Henry. We received a darn high risk from the 16 week quad screen, but he was our miracle infertility baby and there was no way we were risking an amnio, no matter how small the risk, so we waited it out and when he was born he was perfectly healthy and typical. And beautiful, but that’s neither here nor there. When I got pregnant a second time, we knew we wouldn’t be terminating if the baby did have Down syndrome, because we worked through that conversation when I was pregnant with Hen, and we didn’t want to go through all the false positive drama again so we skipped genetic testing altogether.

And fate laughs.

At our anatomy scan they saw a few things that raised red flags. Soft markers, club foot, and maybe something intangible that they’ve never really admitted to, but whatever it was, when we were referred to a MFM he looked me in the eye and said “get the test.” Prenatal testing had come a long way in just 3 years, so we did.

I was at work, it was about 1 pm when the phone rang. I recognized the number and the pit that had been in my stomach for the last 2 weeks since they took the blood for the test tightened. I answered the phone and as soon as I heard the counselors voice I knew what she was about to say. To her credit, she didn’t sound like she was delivering bad news, but she sounded like she knew it was going to rock our world. She didn’t say “I’m sorry” and that was a huge gift, all she said was “the results of your test are back, and your baby has down syndrome”.

I remember exactly what I said in reply… “no shit?”

Oozing with gravitas and eloquence, no?

I hung up the phone, packed my stuff up and went home to be with Josh. We spent the rest of the afternoon eating Oreos and watching those amazing videos on YouTube that people will now send me for the rest of my life. The ones that are so happy but make you cry because they are so touching? I love them. We needed them that day, because that is how we needed to start our journey, laughing.

We’d already told out genetic counselor that we weren’t interested in termination, so she didn’t bring it up when we went in for our follow up appointment, but we were aware that it was an option. Instead she’d pulled lots of info and resources for us. Told us about a thousand times how “awesome” we were and we sort of felt then like we feel now. I mean, we are awesome, but not because our kid has Down syndrome.

The rest of the pregnancy and the first few months of Cop’s life were jam packed with doctors appointments and follow ups and now we have therapy at least once a week… but the extra appointments, you get used to those really quickly. You get used to everything really quickly.

And here’s the “out like a lamb” part. I thought then, that March 14 would be an anniversary of mourning forever. But you know what? I completely forgot about it. I was too busy snuggling my baby and doing a puzzle with my toddler and living my life that I didn’t even remember. And more than forgetting it, I think if I had remembered, I might have celebrated. Because I’m so happy that Down Syndrome is a part of our lives now. You might not understand that, but I mean it.

So we’re going to celebrate Down syndrome here for the rest of the week, counting down to World Down syndrome Day on Friday. I hope you join us.

What It Was

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I can’t believe tomorrow is the last day of the worst and best year of my life.

The first half of 2013 brought nothing but absolute misery. We rang in the new year at home, HG in full swing. I’d just gone off my zofran pump because the side effects of the pump were on the verge of giving me a nervous breakdown. When I’m in the throes of HG I don’t talk about it much because talking about it makes it feel so much worse, and when I’m not suffering I try to put it as far from my mind as possible, but maybe one day I need to tell you guys about what a miserable, soul sucking disease HG is. Not today though, because I’m still trying to forget about it, and it’s too emotionally draining to dreg up all those memories.

Not to mention, I’m pouring through other painful memories today.

2013 was terrifying.

On March 14 of the worst and best year of my life we got Copley’s diagnosis that I thought ruined our lives forever. All I could think about was my fear. Doctor after doctor, test after test, diagnosis after diagnosis. It was an emotional rollercoaster. And fear was the driving force. I wish I could say I’ve vanquished my fears, I have one nagging fear left that haunts me, I try not to think about it, but deep in my heart I can recognize we have been too lucky, that luck like ours cannot hold and that eventually the other shoe will drop. But, I bury this because it’s not a good way to live. And I’ve learned, in 2013, a lesson I’ve struggled with my entire life.

I cannot control everything, or, really, anything.

2013 was humbling.

I am only a woman, only a wife, only a mama. I’m small and insignificant and I can’t change or control anything. I can’t tell you how freeing this realization is. When we first learned that Copley has Down Syndrome my first reaction was that this diagnosis would take us prisoner, but in reality, it has set me free. Free from expectations, free from the burden to control everything, free to just love and be loved in return.

2013 was joyful.

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Josh describes Copley as “our little ball of sunshine” and he truly is. Pictures and video can’t show the depth and breadth of his happiness. He is sunshine incarnate. He is the happiest baby I’ve ever met in my life, and I wish you all could meet him, tickle him, hear him laugh, see his smile when you walk away for a second and come back…  I think of this popular quote by Elizabeth Stone “Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.”  To be Copley’s mama is to watch my most joyous heart given form. Copley is my heart, he has changed my whole world.

2013 was inspiring.

Sometimes parenthood wears me down. It’s just damn exhausting. The diapers, the crying, the tantrums, the stickiness… But the most miraculous thing happened when Hen hit 2.5. Along with the most terrible twos came the most terrific twos. Nobody ever talks about those. He tells jokes. He makes up stories. He learns at light speed. He gives hugs and kisses and tells us he loves us unprompted which is about the best thing I’ve ever heard in my whole life. He hugs us when we are sad and crawls into our arms when he’s sad. He cooks with us and puts on his own coat and shoes (often on the wrong feet! Adorable!) He kisses and hugs his brother one minute and then turns around and tells Josh to “Put it over there and come play” (‘it’ being Copley).   It’s amazing watching a toddler, because they are perfectly truly honest, no pretense.

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2013 was acceptance.

What I find, looking back on our worst and best year, is that finally, I accept it. I accept everything. No, I don’t accept it, I’m grateful for it, I love it, all of it.

I love the terrible twos and I love my family, I love myself and I love Down Syndrome. I love our life and I will take the pain, the fear, the stress, the anguish so that I may also be given the love, the light, the bliss, and the joy.

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Thoughts On Down Syndrome Awareness Month

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The last day of the month. I’ve been a bad Down Syndrome Mom Blogger. I’ve wasted much of Down Syndrome Awareness month because I’ve found I hadn’t much to say.

And I think there’s something important in that.

I want to write about down Syndrome and our experience, I want to reach out to other parents, and other people struggling with a diagnosis, but we just… I don’t know, it doesn’t play much of a part in our lives. I mean, obviously he has it and we do therapy and all that stuff, but day to day, he’s just a baby.

When it’s just a diagnosis, not a baby yet, it’s consuming. Naturally all your thoughts are going to be about how different life will be. How hard.

Now that Cop is a real life baby, it is different, it is hard. But it’s different and hard 90% of time for the normal reasons- lack of sleep, diaper changes, getting spit up on, trying to keep the toddler from hurting the baby, trying to get dinner made and laundry done and pay attention to the toddler and take care of the baby. Having two kids is a juggling act. Very little of that is about Down Syndrome.

Yes, we go to the doctor more than some. Yes, we open our home to several therapists. Yes, we spend a portion of each day with Copley doing physical therapy.

No, none of these things feel like a hardship.

Maybe paying the extra bills does, Down Syndrome is expensive, I won’t lie about that, especially the first couple of years.

Milestones come a little slower. But the small victories are that much sweeter.

And most days you won’t think about the milestones anyway.

You’ll think about the lack of sleep, the diaper changes. The baby farts. The toothless smiles. And you’ll forget about Down Syndrome for long stretches of time and get on with your life.