Sarah Defies Gravity

what one little chromosome taught me about love, life, and defying gravity.

Archive for the category “31 for 21”

Down Syndrome Awareness and the future of Sarah Defies Gravity

So, 31 for 21 is almost over and I admit that I didn’t put forth one single post for it. Why? Well…the biggest reason is that we’ve been busy and that there are other things on my mind, so I just didn’t have the inclination. The second is slightly more selfish. And lazy.

I started this blog just over a year ago with one goal in mind, and that was to educate and inform people who might otherwise not be educated or informed about Down Syndrome about the reality of Down Syndrome parenting through a series of daily life posts as well as “essays” or more fact-based entries about Down Syndrome such as my “Just the facts, ma’am” and “spreading the word to end The Word” posts. I don’t purport to be an expert on the topic, but I know that if you’re not “in” the community it can be really hard to find factual information because you’re typically not talking to people in the community every day, and I saw an opportunity to educate people and took it.

Though there has been some evolution of this blog over the past year, especially due to some unforeseen and difficult health challenges, I feel as though the overall theme has been maintained. This is an informative blog about Down Syndrome first and foremost.

So the idea of 31 for 21 seems a little redundant to me strictly because the entire purpose of my blog has been to educate and inform, rather than to just report on our daily lives, so there isn’t a lot left to say after a year. I do want to keep raising awareness for Down Syndrome, but something like 31 for 21 is just too difficult for me to keep up with or to squeeze out 31 posts because a lot of it would just be repetitive.

I want people to be aware of Down Syndrome and I want people to be informed about Down Syndrome. If I could have any one wish, I think it would be that people were 100% understanding and informed about Down Syndrome, and that prejudice and misinformation about Down Syndrome would disappear, because I truly believe that it’s a bigger hindrance to our children’s success and development than that extra chromosome is. If we give up on our kids just because they have an extra set of genetic material, what does that say about us as people? What does that say about us as a society? Children with Down Syndrome have infinite potential…it’s up to us to unlock it.

If you are reading this post and you would like to learn more about Down Syndrome and “bust some myths”, here are some helpful links to get you started:

National Down Syndrome Society: the national advocate for all people with Down Syndrome in the United States and probably the best source of information there is. See their articles on “Myths and Truths” and “Down Syndrome Facts” especially.

Dr Brian Skotko is the leading expert on Down Syndrome research in the US. For those looking for more scientific-based information, this is a good place to start.

downsyndrome.com, downsyn, and the Babycenter Down Syndrome board are great communication boards to connect to parents with children with Down Syndrome, and sometimes, the parents are the greatest wealth of information there is because after all, we’re living it every day.

On this blog:

World Down Syndrome Day: Just The Facts, Ma’am a semi-comprehensive factual post about Down Syndrome

A Valuable Life a frank discussion of abortion for Down Syndrome and the value of life from the perspective of a pro-choice individual

Spreading the Word to End The Word a discussion of why it’s wrong to use the R Word

What Down Syndrome Can Do For You about how Down Syndrome changed my life for the better

Perfection and Perspective on what “perfect” means.

 

Now, for the second part of this entry, and going back to what I said about being busy and having other things on my mind:

I’m not sure where I see this blog going, honestly, or if I see myself keeping up with it on a regular basis or at all anymore. On one hand, I enjoy writing and I enjoy blogging and I enjoy connecting with people while talking about something I care about, but on the other hand, I’m out experiencing life rather than writing about it and I’m enjoying that, too. There is also the matter that in January I’m beginning school to hopefully complete a degree in genetics and eventually become a geneticist and a researcher of Down Syndrome, so I don’t know how much I’m going to want to be writing about Down Syndrome in my spare time.

For now I think I feel safe saying that this is the “end” of Sarah Defies Gravity, as in there will be no more posts on this blog, or if there are, they will be few and far between. However, I plan on leaving the blog up and completely intact to serve as a resource for people who wish to learn more about Down Syndrome, because there just aren’t enough of those and I would feel like I was doing the community a disservice by removing one, even my mediocre one!

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31 for 21 #8: Sleep Training

For the first three months of Sarah’s life, she was a fantastic sleeper. We were waking her up every 3 hours so that she could it. It was amazing.

After 3 months, it started to go down hill. She was waking up regularly for feedings and having a hard time going back to sleep. 3 and 4 months were the worst. When she turned 5 months, it seemed like we had established, on her terms, a schedule.

But as it turns out, the baby cannot always rule the household, even when we’d like them to, and that wasn’t really working out for us, so we have attempted to sleep train her. Her new schedule goes as follows:

8:00 am: wake up

10:00-11:30: nap #1

1:30-3:00: nap #2

6:30: beginning of bedtime routine, bath, massage, stories, songs.

7:30: bedtime

She feeds twice during the night now, once at midnight and once at 3:30-4 am. She seems a lot happier and well-rested, but we have a problem. We bedshare, and when anybody goes to bed (my fiance at 10 pm and myself at midnight) she awakens. Which is fine at midnight, but right now she lays awake until then. Any suggestions?

(I guess that if sleep is the biggest challenge we have right now–which it is–we’re doing pretty good!)

31 for 21 #7: Can I cheat on this? (and Sarah’s EI today!)

I still suck at this. It’s going to be more like 15 for 21 at this rate. I think I’m going to try to go for 21 for 21 and call it even.

So, at Sarah’s EI appointment today I got referrals to doctors in NY, so I’ll be making some phone calls in the next couple of days. I’m also trying a new naturopathic/neurodevelopmental approach thanks to this wonderful group on BBC (can we talk about how much BBC has helped me in the last 4 months or so? Because it has. I love BBC), with Dec’s blessing, so that should be interesting. I guess what I’ll have to do is try to figure out a schedule of therapy and natural/neurodevelopmental approach that suits us best.

Sarah’s EI went swimmingly for other reasons (does anybody even say ‘went swimmingly’ anymore? whatever, it’s hip to be anachronistic)–they told me she is doing GREAT. We only see the EI once per month, but she is right on track to where she should be and even ahead in some respects. That makes me feel good as a parent; I’ve tried so hard to be the best parent I possibly can be for Sarah and it’s showing!

One of the most exciting things about NY is that I am hoping that Dec will be able to be at more of her appointments. He is hoping that in his new position he will have more flexibility to take the time out of his workday to attend at least some of them. It would be great to show him what’s going on with her in that respect!

I have yet to break the news to her mama. She knew we were considering it, but we haven’t told her officially yet. I know there won’t be any problems there–she has limited contact with her and it’s perfectly legal for us to take Sarah out of the state, but it’s still going to be hard to tell her that the option for her to just come over should it finally seem appropriate is going to be eliminated. I guess that is something that will have to wait and see.

31 for 21 #6: AAAAAAAHHHHHHHHHHHHHH

I said in my last post that we are making some big life decisions over here. I’m trying to keep quiet, but I am, in the immortal words of the Pointer Sisters, I’m so excited and I just can’t hide it!

As some may remember, I was going to stay here while my boyfriend moved away in December, and that we would be joining him in a few months. Well, as soon as I made that decision, I knew it was the wrong one, and after some agonizing, we finally made the decision that Sarah and I will be going with him in December! We are going apartment hunting at the end of this month and then our move date is December 1st. So begins the very stressful journey of transferring Sarah’s care. I am going to talk to her EI on Monday and get some referrals for peds and therapists in NYC. Wish me luck!

And then tonight, we had dinner with his parents, and we had agreed that we were going to tell them that I was moving with him. Dec decided that his was not nearly dramatic enough, and so, when he told his parents that we had something to tell them, he then proceeded to get down on one knee and ask me to marry him! We had talked about getting engaged when I moved down there (since it’s legal in NY…yippee!), but hadn’t said much else on the subject. I cried! In front of his parents! But I did say yes. I mean…was there any other answer?

Now I have a lot to do in the upcoming weeks. I’m pretty sure I can handle it. I hope, anyway.

31 for 21 #5: Blogging FAIL.

I try really hard to blog every day. Really hard. But it can be tricky!

We are very busy around these parts these days! I’m not ready to blog about most of it until I’m absolutely certain what’s going on, but it’s very, very exciting!

What I do want to blog about is a feeling I’m almost ashamed to admit I have. And that is this feeling of depression and hopelessness I sometimes have, where I feel like I’m giving up hope on Sarah ever having a normal life. I hate that everything in her life is always going to be about Down Syndrome. I want people to see her as SARAH, not Sarah who has Down Syndrome. When she’s happy, why can’t she just be happy? Why does it have to be “oh, people with DS are so happy?”

I want people to see Sarah as an individual first. We do not define other people by their hair color, their eye color, the way they look, their preference on how they like their eggs cooked, or any of the other nuances of their personality, so why does it always have to be about Down Syndrome? She has Down Syndrome (and brown hair, and blue eyes, and little toes, and a pretty smile), but Down Syndrome isn’t her. It is only one part of her (wonderful, wonderful) identity, the things that make her her.

31 for 21 #4: Glasses and exhaustion

Sorry that I missed yesterday, I haven’t been feeling well the last couple of days and after the day we had I was just too tired!

Sarah had her ophthalmologist appointment yesterday. It took forever! We were in the office about 6 hours total, from 9:30 am til 3 pm. After all that time, she was diagnosed with astigmatism (which she was probably born with) and mild amblyopia and was prescribed glasses and an eye patch to fix the amblyopia.

They didn’t have much selection for infants, so on the doctor’s suggestion we ordered her a pair from specs4us.

So far she hates the patch SO much. She is supposed to wear it for 4 hours per day, but she just cries and cries as soon as we put it on. It breaks my heart! She is not doing much better with it today. I ordered some from Ortopad USA so hopefully she starts to chill when those come in, but it’s been a long 24 hours.

I guess we’re very lucky that Sarah doesn’t have any other health problems, but this is still hard!

31 for 21 #3: Andy

Andy was born in China, four years to the day before Sarah! He and Sarah also share another common bond–they were both surrendered by their biological mothers because of their extra chromosomes.

However, Sarah, unlike Andy, is fortunate enough to live in American and that she has myself and her Dada to take care of her. Andy is not so lucky–he doesn’t have any parents to call his own!

Reece’s Rainbow is an organization that matches prospective adoptive parents with children in European and Asian countries who have special needs, mostly Down Syndrome. I am choosing to talk about Reece’s Rainbow today instead of about Sarah because I feel like this shouldn’t only be about Sarah. We need to look at the bigger picture.

There are thousands of children in Eastern Europe and Asia who are in orphanages because they have special needs. These orphanages are NOT the place for these children. They do not get to grow, develop, and learn to reach their full potential, and when they turn six years old, most of them are sent to an ADULT MENTAL INSTITUTION. The majority of these children will die within one year of being committed.

Here in America we are blessed with many opportunities for our kids to reach their full potential, and that’s why we make ideal families for these children, who so desperately need mommies and daddies to love them and help them to grow into fantastic people.

If you are reading this, and you feel called to adopt Andy or any of the other children on Reece’s Rainbow, please look into it, or considering donating money, or becoming a prayer warrior. Every bit helps!

31 for 21 #2: Sarah and Dec

When I first met my boyfriend, he told me he didn’t want to have children.

He told me this before we were together–I can’t remember how it came up in conversation. What I do remember, however, is that I asked him why.

I always thought he would be a great father. He is bright, effervescent, full of energy and love and joy, and he loves children. He’s that person bending down to a baby in a stroller’s level, cooing at them, calming them instantly.

“Exactly,” he told me. “I love children, and I intend to keep it that way.”

We started dating when Sarah’s mom was five months pregnant. He came into it knowing that there would be, at least half the time, a baby in his life. He was okay with that.

One of the things that selfishly scared me most when Sarah was diagnosed was the idea that I was going to lose Dec. My world had already been put in a tailspin, the last thing I wanted was to have to deal with losing the first person I had ever really loved (now THAT is a story for another time!) on top of it.

But he surprised me. He surprised me by accepting that baby into his life as wholly and completely as if he had wanted her as much as I had. His acceptance of her–a child he hadn’t even really signed up for–was a huge turning point in my own ability to accept her.

After five months, I am continually astounded by the bond that they have, the way he has embraced her and embraced Down Syndrome, raising awareness, advocating for her, and taking a stand to be the voice for those who may not have one. He, like Sarah, has taught me a lot about being a better person, and I’m always wondering how I–a flawed individual, selfish and stubborn, obstinate, unwilling to change–could end up with these people, these sweet, unquestioningly loving people as part of my world. I don’t deserve them, that’s for sure.

Sarah thinks Dec hung the moon. Dec thinks Sarah hung the moon. From the time he gets home from work until the time we put her to bed, it is rare for the two of them to leave each other’s company. If she is frightened or upset, she seeks him out. They are truly kindred spirits, bound together in some incredible way.

Sometimes I think that they were meant for each other. That Sarah was meant to be born with Down Syndrome not to screw everything up but to draw Dec and I closer together, to give him–and me–an awakening of sorts.

He told me the other day that the only way he would ever consider having a second child was if they, too, could be born with Down Syndrome.

I can’t say what the future holds, but I think that would be just perfect.

31 for 21 #1: Twenty One Things About Sarah!

So, it’s technically 12:20 am, but DBF and I went on a date for seven hours, so you’ll have to forgive me.

1. Her name is Sarah Hannah Dorothy. She was born April 20, 2011, at 12:22 pm. She weighed 8 lbs, 1 ounce at birth.

2. She does not have any health problems. However, when she was very little she was sleepy ALL THE TIME. We used to wake her up to eat.

3. Her favorite toy is a plushie of Pascal from Disney’s Tangled. She’s going to be Rapunzel for Halloween. I

3.5. I don’t like Disney princesses. Her other dad is obsessed.

4. Today, she’s wearing a little Gymboree one piece that says “Wild About Daddy”. I’m sad because it’s newborn size and this is going to be one of the last times she wears it.

5. She has never liked pacifiers.

6. Her favourite activity is snuggling. She loves to cuddle.

7. She started smiling when she was 3 months old and hasn’t stopped since. Except when…

8. …she’s a diva! The girl has a drama streak a mile wide. The pouts are tremendous.

9. She looks like my baby pictures.

10. She LOVES music.

11. She sleeps right between us at night. She likes to hold onto the sheets in her little fist.

12. I love to put bows on her head. love it.

13. She hates tummy time, but she loves to be worn (in a baby carrier).

14. When we are around, she refuses to make any vocalizations. When she’s supposed to be taking a nap, she chats up a STORM!

15. She looks comically small in her high chair.

16. It makes her grin like nobody’s business if you blow on her face.

17. She loves her food. When she was first born, we had trouble getting her to eat and the doctor told us “well, she’s hungry, her suck is good, she roots for food…she just doesn’t want to have to work to get it out of the bottle!” As a result of this combination of hunger + not wanting to work for it, we call her the Honey Badger.

18. Her name has a lot of meaning for us. Sarah means “princess” in Hebrew, Hannah is after my sister, who also has special needs, and Dorothy means “gift of God”.

19. She makes a growling noise when she poops.

20. She  really enjoys being propped up to sit. She grins and makes her mouth into an “o” the whole time.

21. She and her extra chromosome is the best thing that has ever happened to me.

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