Wednesday, October 30, 2013

Day 30- An interview with my husband

If there's one thing Tera loves more than almost anything else in her world, it's her dad. "Dada" was her first word and she has been Daddy's girl for quite a while now.  They get to roughhouse together all the time, they are silly together, he teaches her all about the Star Wars characters he has bestowed upon her, and she just absolutely adores him.

I couldn't wait to see Tom as a dad.  I knew he would be great and when we found out we were having a girl, I was even more excited.  I have not been disappointed once.  When I see them together I feel like everything is right with the world.  When I hear her sweet voice say "Dada", I can just hear her love for him.  

When we received Tera's diagnosis, Tom was just as upset as I was.  We were both completely blindsided by it and all the health implications that came along with it.  We were new parents trying to deal with this huge shock and despite how supportive every one of our family and friends were, it couldn't compare to what we as parents felt; we had only each other to confide our fears and concerns.  It was something that I feel cemented our relationship even further and has proved to us once again that we really can handle anything.

I've been saving this post for the end of the month because I thought it would be a really great way to cap it off.  I'm going to interview Tom and use his responses as the rest of this post.  It may end up taking more than one night, but I want it to be meaningful so here goes.  This will be my last official post for Down Syndrome Awareness Month.  Tomorrow we have a fun filled evening with the Stanley Cup planned so I am going to take the night off from anything else.  So here goes:

What's the one thing you've learned since Tera was born?
How to change a shitty diaper.  

How much success do you still feel about winning the naming of Tera?
In the end I always get what I want.

What still scares you about Down Syndrome?
The future.  The inevitable, the time when someone says something offensive to her or treats her differently because of it.  

What's something that Tera has done that has surprised you?
On any given week, it's the small things.  Tonight she was able to scoop out the last little bit of applesauce from a bowl, the first time she signed, and when she took her first steps.

What kind of things do you envision the two of you doing together?
Watching hockey, movies, cooking together, and I'm sure at some point I'll end up with make-up on my face since I've already had bows in my hair.

What do you worry about her not being able to do?
Driving a car always lingers, living on her own, will she have the ability to do sports or athletics in some fashion, will she be able to skate?

What do you worry about her struggling with?
The educational side of things.

What do you worry about the most?
Mostly just the future.  The possible heart surgery.  I'm not really worried about her medically other than that.  More what to expect in the distant future.
How has she changed how you look at things?
I try to slow down and understand where people are coming from now.  Is someone behind me rushing to get somewhere because it's more important than where I'm trying to get?  I try to assume more that people have good reasons for the way they act.  

What are the best memories you have so far as a dad?
ComiCons and her excitement when we come home.

What are things you did with your parents that you want to do with Tera?
Take an interest in what she's interested in.  My parents did things that I liked doing, even if it wasn't necessarily what interested them.  They always took an interest in my interests.  

What are your goals as a parent?
Give her the tools she needs to succeed and be happy.

If you could go back to the the day Tera was born and tell yourself anything, what would it be?
I wouldn't change anything or want to know anything different.

What advice would you give to other new parents facing a birth diagnosis?
The good times outweigh the shitty times.

What do you love most about Tera?
Her personality.









Tuesday, October 29, 2013

Day 29 of Down Syndrome Awareness Month!

Tera has no shortage of aunts who are wanting and willing to shower her with attention and kisses. Tonight I'd like to share my sister Lindsay's thoughts on Tera.

What has Tera taught me.... Well that is a very long list.  She has taught me how to love unconditionally, how one little smile can make me and everyone else I show her picture to smile (no matter how bad of a day they are having), that I thought I had strength when Tera, Melissa and Tom have more strength than they give themselves credit for, how amazing it is to be her aunt, how a little girl who has only been on this planet for a little over 2 1/2 years can change an entire family and soooo many people that she has never met.  I have also learned I have an amazing family and extended family (we are going to go with extended).  I love being able to FaceTime with her and see her new signs, animal noises and now words!  She works so hard and I am so proud of her and even though I don't get to see her as often as I would like I love getting my kisses over the phone.  



Sunday, October 27, 2013

Day 27 of Down Syndrome Awareness Month!

Sunday night, we meet again.  I have to say my anxiety on Sundays has been less lately, but my not wanting to leave that sweet little face that is sleeping (for now) upstairs is just as bad.  She is such a silly kid and even when she's being a pain in the butt, I still don't want to leave her.  She has become such a little person in the past few months, she's just not a baby anymore.  Even her therapists have commented on how much older she seems.

We've been working on speech so much for the past year that it's hard to believe how much progress she's been making.  She currently has about five to seven words and a few more are emerging.  She picks up new signs in less than a day and it blows my mind every time she does it.  And what she understands is even more incredible.  I've been trying in the last several months to overestimate what she comprehends and speak to her as if she does understand everything I'm saying and it's been amazing to watch her respond appropriately.  There are of course plenty of times when she just doesn't want to listen, like any other toddler, but most of the time if we structure a direction or series of directions carefully and repeatedly, she will do what we ask.

The key with Tera really has been using "then" statements when giving directions.  If we want her to get ready for bed, for example, we tell her to go upstairs, then we can brush teeth, then we can feed the fish.  Usually by the second or third time (sometimes fourth or fifth) she walks herself upstairs to get ready.  We can also use it to redirect her when she's doing something we don't want her to.  Over the summer I really noticed that she understood this when we were walking through a pet store and we were letting her walk by herself instead of sitting in the cart.  She kept darting off and I told her if she didn't hold my hand, she had to go back in the cart.  After repeating it one time, she took my hand we and we made it through the rest of the store.

This is when I can't imagine not having her therapists to brainstorm with us.  This idea came  from both her developmental therapist and her speech therapist and it has helped us tremendously with routines and transitions.  Now we'll just have to check with them on any ideas they might have for getting to her to sleep through the night consistently...


Friday, October 25, 2013

Day 25 of Down Syndrome Awareness Month!

Once again we are faced with an inexplicable Tera dilemma.  Only this one isn't new.  And it may not even be something we can do anything about.  But I'm tired.

Tera was a great sleeper when she was an infant.  We chalked it up to the fact that we had enough to deal with after her birth, the very least we could get was a kid who slept well.  And she did.  Until she was about a year and a half.  That summer after her first birthday I was up with her sometimes four times in a night and it was least once a night most nights.  Since then she has gone in phases.  Obviously when she's sick it's worse, but quite regularly we're faced with sleep problems when she's seemingly perfectly healthy.

Here's what tends to happen.  A few times a night (some nights are better, some nights are worse) she'll start whining in her sleep.  This could last anywhere from a few seconds, to twenty or thirty minutes.  Sometimes she'll just fall back asleep (although she never really seems to be completely awake), and sometimes I have to get up with her.  Sometimes I can just reposition her and recover her and she's back out.  Sometimes, like last Thursday and then again last night, she has a more difficult time getting back to sleep.

We can't really connect it to anything.  Sometimes it's just whining for a while, sometimes that whining turns into full out crying.  Sometimes she'll fall back asleep on her own, sometimes I have to get up and comfort her.  I really have no idea what might be causing this, but there are weeks where I might not get a full night's sleep the whole week.

The other somewhat confusing thing she has going on lately is how long it takes her to fall asleep some nights.  This past Sunday night and Monday night I sat next to her bed and watched her completely flip over and flip positions for over fifteen minutes straight before she even got close to falling asleep.  Then of course I had to try and sneak out of her room without setting off our wood floors at which point I occasionally had to start all over.  It almost seems to be an input thing for her, but I've tried her weighted blanket and that doesn't always help.

As I type this, she's been in bed for an hour and I've already had to go up to her room once and rocked her just so she would go back to sleep.  And in a few seconds here, I'll probably be going back up again.  I don't know what else to do to help her and I'm not even sure who to ask about it.  I don't have any other toddlers myself to compare her to so I don't know how much of this is normal, but couldn't we maybe catch that same break we got when she was an infant?

I know I'm tired and slightly concerned that something is preventing her from being able to sleep comfortably.  And right now, despite the fact that I would really like to take this time that I have to myself (while she intermittently sleeps and Tom plays hockey) and do something I want, like flip through the stack of catalogs sitting next to me, I should be practical and and give in to my urge and just go to bed.  That way at least I can catch some sleep on the front end of the night and try and survive yet another night.


Thursday, October 24, 2013

Day 24 of Down Syndrome Awareness Month!

Being a mom.  It's not always easy, it's not always fun, but it is incredibly rewarding and full of love.  I know many, many moms out there that are really great.  I have many moms in my life that I admire incredibly.  But in my eyes, my mom tops them all.  If you ask her, she says that my sisters and I give her too much credit, but she deserves every bit of it.  I owe my mom a lot (life would be a big one I guess), but for all the things she has done for me, what I'm most grateful for is her inspiring me to be a mom.  Life hasn't always been easy for any of us, but through it all I've always known I was loved and would be taken care of.  To this day, as soon as something goes wrong or when Tera is sick, I call my mom.  I don't even necessarily want her to do anything, I just need to hear her voice and wait for her to tell me it will all be okay; even when we don't know if it really will be.

And in addition to being a great mom, she is also a great Nani to Tera.  Tonight I would like to share my mom's perspective on Tera.

In so many ways I see her as just as a typical little 2 1/2 year old. She's curious, likes to test what she can get away with without being scolded and extremely energetic. I love her silliness, how hard she works to accomplish what she wants to do and how much she understands even if she can't communicate back to you with talking.  Tera picks up signing quickly, she learned how to sign Nani in just a few minutes.  I love watching her play and seeing that little brain working. She remembers what we do together when she stays at my house; dumping recycling on the floor and putting it back repeatedly or putting it on my head. Playing catch and her laughing at me when she throws it in another direction. Opening up her toy tunnel and each of us crawling in on each end.

I find her amazing and can't wait to see how she continues to learn and show us her endless capabilities.  Of course I am her Nani and pretty much anything she does is pretty exceptional!


Wednesday, October 23, 2013

Day 23 of Down Syndrome Awareness Month!

So I swear I'm not getting lazy, but unfortunately things like bill paying, grading, and sleep have gotten in the way of some of my posts these last few days.  I'm hoping I can include some special posts in the next week or so to wrap up this month.

I always try to make sure I share how proud I am of our family and friends and how amazingly supportive they have always been of her and Tom and I.  When people comment and say they don't know how we handle everything with Tera, I usually tell them we do what we have to do.  I have read many accounts of parents of kids with DS whose families are either not near, or not supportive.  Sometimes the families don't understand DS and aren't willing to learn, sometimes they just don't feel comfortable with people in different situations, some people just feel pity and they don't know how hold a normal conversation without "feeling bad" for them.  Whatever the reason, I can honestly say I don't know of a single person in our entire extended family or group of friends that has come across that way.  We do what we have to do, but I really can't imagine doing it without our incredible support system.  And for that reason I wanted to include just a few of them in some posts.  I want everyone to understand just what a difference a support system can make to parents in a stressful situation.

Some of the special posts I'd like to share are from our family members.  When asked what they have learned from Tera and how she has changed the way they act or live, Tom's parents responded with:

Our little kukla has taught us that being a grandparent is a wonderful thing. She has filled our hearts with love and pride with everything she has been able to accomplish with her determination. She has also made us be more aware of the challenges some people have in life. I believe that knowledge has made us better people.


Monday, October 21, 2013

Day 21 of Down Syndrome Awareness Month!

One of the hardest parts of being a parent, for me, is knowing when to admit I'm too tired to so something. I need to be able to say, tonight, I'm just going to relax. 

Tera is a lot of work and a lot of worry. Some nights, just getting her to fall asleep and stay asleep is a project. Tonight I am exhausted. I'm going to watch Bones, and go to sleep. 




Sunday, October 20, 2013

Day 20 of Down Syndrome Awareness Month!

Many months ago I started reading a book for parents of kids with Down Syndrome ( see lesson #18 from yesterday's post). One of the best things I got from the parts I was able it get through was whatever your child is interested in at that time, nurture and feed that interest. 

The author has a 24 year old son with DS and when he was young he was interested in instruments. She bought him books, they went places, and they learned everything they could about instruments. To this day he can name almost any instrument he hears and can tell anyone everything about it. 

She suggested starting young and since reading that we have tried to help Tera develop the interests that she seems to have. 

I really do love that she has things SHE truly loves.  And most people who know her, can attest to these loves.  

She loves babies.  Baby dolls, babies she sees in stores, and, of course, her babies (aka her cousins Riley and Kaelynn).  We have bought her several different kinds of dolls to have at home, and she has at least one at each grandma's house.  She can and will play with these for sometimes close to an hour.  She covers them and uncovers them with blankets, she carries them around the house, she feeds them, and yesterday she held a bottle under the water dispenser of our refrigerator and tried to fill it with water.  Our latest goal has been to try and find one that she can dress and undress to try and help her with her fine motor skills.  I added a bunch of things to her Christmas list today that included baby accessories like bottles, diapers, a playpen, a high chair, and changes of clothes.

She loves animals.  Pretty much every animal but her favorites are cats, elephants, giraffes, and sheep.  She knows a ton of sounds and/or signs for animals and they were in fact some of her very first intentional sounds.  We have puzzles with animals, books with animals, stuffed animals, we take her to petting zoos, the actual zoo, we watch TV shows and movies with animals, she has a jungle with animals that make sounds, apps that are all about animals, and when we're in the car and she's whiny or we're trying to keep her awake, we practice all her animal sounds.  


She loves books.  And I give a lot of that credit to her first daycare teacher who spent hours reading to her.  We of course try and pick books that include some of her interests, but she also has an aunt who is a first grade teacher and who has phenomenal taste in books.  I'm not sure how many times we've read Pete the Cat and the Skippyjohn Jones, but at least those entertain me as well.  

And lately we've been able to introduce our own likes to her.  Tom has taken out many of his old Star Wars toys for her to play with and she in fact has an AT-AT in her room that she loves and gives kisses to (in addition to the Wampa rug in the middle of her room that she lays on every chance she gets).  It helps that her whole room is decorated in Star Wars, she's getting a new Star Wars comforter hand-made by Yia Yia for her big girl bed, that for two of her three Halloween's so far she will have been Star Wars characters, and I just found a whole bunch of new ideas for other things in her room. For Mother's Day Tom bought me the original Scooby Doo series (which I love) on DVD and after getting tired of Sesame Street one week over the summer, I put one in.  That's pretty much all she wants to watch now.  She made up her own sign for Scooby Doo, she has my old Scooby Doo stuffed animals, and she picked Scooby Doo over Batman for her new orthotics design.  But speaking of Batman, she does love that too.  She thinks she is in fact Batman due to the number of t-shirts and pajamas she owns with that on them, and when she sees the Batman symbol anywhere, she points to herself (again, she thinks she is Batman).  She also has her own motorized Batmobile and had a Batman themed 2nd birthday party complete with Batman dress.

We actually find it kind of fun to entertain her interests because, like I said, many of them are ours as well.  It is so amazing to watch her reaction when she sees something in a store or out in public that interests her because then we know it's really her interest.  And it gives us things we can do as a family.  Of all the strategies I've been told about and read about, this is one that is definitely easier to incorporate because all we have to do is buy stuff for our sweet girl.  And that has never been a problem for us or anyone else in the family.




Saturday, October 19, 2013

Day 19 of Down Syndrome Awareness Month!

I felt like I was on kind of a roll last night with my list of things I've learned as a parent so here's a continuation of that list.

13.)  Clutter doesn't mean the same thing it used to. I never intended on decorating my living room in Ikea storage units and a Sesame Street kitchen, but somehow it's working. 

14.)  I will never stop thinking I'm hearing a crying kid when I'm in the shower. Unless she's not home. 

15.) I may never finish an adult book in less than 3-6 months again. 

16.) I don't need a reason to buy my kid new clothes or toys. If I want to, I'm going to. 

17.) Down Syndrome is not as scary as I thought it would be. It presents new challenges, many celebrations, a new appreciation for different, and a pride I never imagined for Tera's accomplishments. 

18.) People are only looking at her longer in public because her face is insanely beautiful and she's usually
waving at them. 

19.) We can do this. 

20.) I can do a ridiculous number of things with only one hand.

21.)  We can relive our childhoods through Tera.  She doesn't know that some of the things she's playing with are, in some cases, over twenty years old.

22.) Patience has never been as important as it has been since Tera was born.  Patience with her, with myself, in waiting for her to meet milestones, in dealing with doctors, in conversations with other people about how things will eventually get better or easier, with people who say things because they just don't know any better, with behaviors and stages that last longer than in typical kids, and just with life in general.

I think that's a good place to stop for now.  I will probably pick this up again at some point in the future, but I believe this is a pretty comprehensive list so far.  Now I have some picture sorting to do :)

Friday, October 18, 2013

Day 18 of Down Syndrome Awareness Month!

I have been awake since a little after 2am this morning and am running on less than four hours of sleep.  Due to some circumstances beyond my control last night, I was unable to post.  And due to my severe lack of sleep last night, my vision is blurry, and I may not be able to form coherent thoughts.  But I would like to list some of the things that I have learned as a parent in the last two and a half years.  These are in no particular order other than in the order in which they popped into my head.

1.)  I can fit in a toddler bed.  I can't sleep in it, but I can lay in it.

2.)  I have super sonic hearing.  This is actually a combination of being a teacher and a mom.  I developed my teacher ears over the past 11 years and can pretty much hear anything that is being said in my classroom.   As a mom it means I can detect changes in breathing, tiny little foot steps, and the never-ending change in positions all night long.

3.)  I can sing the same song about 100 times if it means less crying, whining, or falling asleep at an inopportune time on the part of my child.

4.)  Somebody else's poop, pee, and vomit are not as disgusting as they used to be (as long as they in fact belong to my child.  And as a side note, I've developed the ridiculous reflex of putting my hand out to catch vomit, even when it will do little to no good

5.) I can function at work on very little sleep, lots of stress, and constant worry.

6.)  I have developed the most irrational fears that occur at the most inconvenient of times. For example: my child, though sleeping quite soundly, must be freezing to the point of harming herself because she has kicked off her blankets once again.  And she must be covered again even though I know she will do it again.

7.)  That life will not necessarily get easier, it will just present different challenges.

8.)  Kids will pick up bad habits much more quickly than good habits, and they will learn both from their  parents.

9.)  Just when you think things can't get worse, they do.  And when you think things will never get any better, they do.

10.)  I will never stop being amazed by the fact that Tom and I created such a perfect being and that I am in fact a mom (which Tom pointed out is official since I have tried to sleep in our two year old's bed).

11.)  I will always, on some level, worry that the television she is watching is not educational enough.

12.)  That while I would love to continue this list, and may continue in the next few days, I'm falling asleep as I type and so that would probably be a sign to go to sleep.


Wednesday, October 16, 2013

Day 16 of Down Syndrome Awareness Month!

Since it is the middle of October, I suppose it's time to start planning for Christmas.  I'm only half joking.  Every year I have these grand plans of starting things early so I'm not running around last minute picking things up, but really that's just a dream.  Mostly what I try to start doing early is getting Tera's list ready for everybody.  Up until a few months ago, Tera was the only grandchild and niece on either side of her family (she now has three month old twin cousins) and so she was spoiled rotten everywhere she went.  I don't honestly think that will change much and so I need to start giving everyone ideas.

I have mixed feelings on the types of items I put on her "list".  On the one hand, I want her to be a kid and just enjoy some toys without them having to have a specific purpose or therapeutic value.  On the other hand, if she's going to get more than she knows what to do with, it might as well be things that will benefit her in some way.  And so I start researching.  

The really nice part is that both of our families are very good at providing that perfect combination.  She gets some silly things that all kids get, and she gets a lot of things that our families know will help in areas she's working on.  Many of the "therapeutic" toys are ones that lots of kids have, they just serve a specific purpose for Tera and other kids with developmental and physical delays.  

If you know of a child that falls into these categories, some of the things we've found to be helpful are:
-Dolls/babies for pretend play
-Puzzles (we started with ones that have the big pegs on them, then the smaller pegs, and now she's working on ones where she has to match the shape of the piece to the correct place on the puzzle, but without a corresponding picture on the puzzle)
-Always books, but specifically ones with textures, singles words on a page with a picture 
-Shape sorters
-Musical instruments (she currently has an accordion, two guitars, a keyboard, drums, and this awesome toy where you put various instruments on a platform and it plays a song using whatever instruments on the platform)
-Kitchen sets for pretend play
-Anything that forces them to reach, especially when they are younger
-Blocks and cups or anything that can be stacked
-Balls
-The folding tunnels for crawling 
-Toys that link together or Velcro food for muscle development and fine motor skills
-Things that play music
-Bubbles
-Coloring books and crayons
-Easel

I could go on, but those are the big ones.  I think it's important for any child to have some purposeful play in their routine.  And don't get me wrong , there is definitely a need to just let them be creative and silly as well.  
We've recently decided to get Tera a Barbie-like doll (we're a little too weird for just a Barbie though so she got a Monster High doll and a Barbie outfit) to help her practice her fine motor skills in dressing and undressing the doll.  I will probably add some new, more challenging puzzles to her list, there are always new books that she would enjoy, and we'll probably indulge her love of animals in some way.  

It's not necessarily less fun to shop for Tera this way, really it makes us feel better that at least most of the crap that fills up our house is useful.  




Tuesday, October 15, 2013

Day 15 of Down Syndrome Awareness Month!

As much as I would like each post that I write to be straight from the heart, maybe a little funny, and maybe a little heart-warming, the point of my posting (almost) every day in October is to raise awareness about Down Syndrome.  

Today I am going to share a few things about the preferred language surrounding DS.  I have made it very clear that I'm not affected much by the language of other people, but there are families and individuals out there that are.  And maybe someday Tera will be affected by the language of other people too and so for everybody else, I want to share a guide of preferred language from the NDSS.  If you feel so inclined to share something from this month with others about DS awareness, I just ask that you consider including this guide.  People with DS are just that: people first.  

So here it is and I promise I will return tomorrow with something more creative.

USE THIS LANGUAGE WHEN REFERRING TO DOWN SYNDROME AND PEOPLE WHO HAVE DOWN SYNDROME:

  • People with Down syndrome should always be referred to as people first. Instead of "a Down syndrome child," it should be "a child with Down syndrome." Also avoid "Down's child" and describing the condition as "Down's," as in, "He has Down's."

  • Down syndrome is a condition or a syndrome, not a disease.

  • People "have" Down syndrome, they do not "suffer from" it and are not "afflicted by" it.

  • Down vs. Down's - NDSS uses the preferred spelling, Down syndrome, rather than Down's syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an "apostrophe s" connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using "Down syndrome," as well.

  • While it is still clinically acceptable to say "mental retardation," you should use the more socially acceptable "intellectual disability" or "cognitive disability." NDSS strongly condemns the use of the word "retarded" in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent.

- See more at: http://www.ndss.org/Down-Syndrome/Preferred-Language-Guide/#sthash.vkS3Jf4f.dpuf


Monday, October 14, 2013

Day 14 of Down Syndrome Awareness Month!

If our house is any indication, the apocalypse is coming.  The locusts have arrived and it's only a matter of time before the rest of the signs are evident.  Except in our case the locusts have come in the form of carpenter ants.  We had the issue last weekend, they were gone for a few days, and since Thursday they have been making a comeback.  Today we hit critical mass.

Here's why our marriage seems to work (I think).  First of all, my husband deserves a lot of credit.  It cannot be easy being married to me.  I'm not high maintenance, or demanding, or whiny (in my opinion), but I'm a bit of a nut job.  I lose my shit regularly and he has become a professional at dealing with my fallout.  He is always there to reassure me that life will go on if the floors aren't vacuumed (I'm still not convinced) and always ready to take on one of the items on my never-ending to-do list to help me out.  This morning was a perfect example.  I won't go into details, but I was overwhelmed.  Again.  We talked through it, took Tera to get her pictures taken, got coffee, went to Target and bought things we didn't need, and came home to deal with the rest of our day.

Enter the ants.  And the rest of my example of why we're still married after having been married for nine years and together for fifteen years.  Typically only one of us loses it at a time.  I had my time this morning, and this afternoon as the killing of the bugs seemed a futile endeavor, I calmly stepped in and got us an appointment for someone new.  That's not to say I didn't want to scream a little every time I walked into my bathroom and looked in the shower to see the equivalent of some kind of B-movie horror flick, but I didn't.  I calmly turned the water as hot as it would go and took pleasure in burning them down the drain.

When we were in high school I remember quite vividly getting a call from Tom's mom asking me to come over.  He had dropped his car off for some work and when he got it back he realized a part of his pride and joy stereo system was missing.  He had already kicked a dent in his car and nobody could calm him down.  I don't even remember what I said to him, but for whatever reason, I was what worked.  And today, while I sometimes feel like that skill may have worn off, I realize it's really more that our problems are more serious now than they were back then and so for both of us, a reality check can be a little more difficult than it used to be.

The nice part is that when I'm talking to him and reminding him that we've been through worse, and that we'll get through this too, and at least Tera isn't sick, that it's helping to remind me of those same things.  It's easy to lose sight of the fact that we've dealt with things like this before and we're still standing.  We might have a few more battle wounds now, but we're still alive, still together, and still relatively intact.

I'm writing this post outside on a beautiful fall afternoon.  My favorite time of the year.  I don't want to regret not having enjoyed this time despite the chaos that is going on in my house just a few feet from where I sit.  I plan on trying to make cookies with Tera this afternoon, I'm not going to do the work that I brought home with me because I have bigger problems to contend with.  Tonight we'll have leftovers from an amazing dinner that Tom made on Saturday, maybe have a fire, and then go to bed and deal with the rest of the week tomorrow.

I may not be so calm in my dealings later, but for right now my head is in a good place.  I wish I had more opportunities to do this, but I will enjoy this one and for once, try not to think about the thousand other things I normally do.  Except that I think I will have to go inside for that because this beautiful fall day is making my hands and feet cold.


Sunday, October 13, 2013

Day 13 of Down Syndrome Awareness Month!

Last night Tom and I went to bed by around 9pm.  He had played hockey the night before, and I hadn't slept well so when his mom and our friends left after dinner, we decided bed would be a great idea.  While Tera hasn't tried to get out of her bed this week since switching from her crib, she has spent most nights whining for up to 20 or 30 minutes at a time three to four times a night.  I'm not sure if the bed is related this this happening, but either way, I don't think I've slept a full night this week.

People and TV shows, and movies, and books talk about how little sleep you get when babies are newborns.  Tera was great as a newborn, but since she turned one, it's been downhill.  Sometimes it's when she's sick, but lately I have no explanation for why I'm getting up two to three times a night with her.  So when we have an opportunity to just go to bed, like last night, we try and take advantage of it.  Unfortunately last night was another one of those nights so going to bed early only somewhat helped.

Then tonight bedtime took close to an hour.  It's no wonder I'm constantly trying to figure out why I have no time.  It would be one thing if I was at least getting quality time with her, but most of that time is spent just sitting in her room waiting for her to go to sleep and then trying to sneak back across the room without waking her up with the creaking floors in her room.

The last few days I've had really great ideas for posts, but then by the time I sit down to write them, I'm completely exhausted.

Tera does have some sensory sensitivity that I always try to be aware of.  We use a weighted blanket to help her fall asleep since she moves around so much, but inevitably that ends up thrown off and sometimes she doesn't want it on at all.  She doesn't like blankets covering her feet, but she always has cold feet in the mornings when she gets up.  She's somewhat of a restless sleeper so she moves around constantly.  When she was a baby I always thought we were so lucky to have such a good sleeper, but now I think it's more of an anomaly when she doesn't wake up at least once.  The unfortunate part is that it's like this when she's healthy.  When she's sick I expect at least three wake up's a night.

I know there are probably essential oils out there, or some other holistic approach,  that can probably help with this, but I need to be able to research them and that's where the problem starts.

Today was a fabulous day.  I already have a special breakfast planned for Tera and I in the morning and Tom has the day off with us so we can spend an extra day as a family.  And maybe tonight will be the night that she finally feels comfortable in her bed and doesn't wake up until 7am.  Or maybe I just shouldn't stay up too late tonight...


Friday, October 11, 2013

Day 11 of Down Syndrome Awareness Month!

Unfortunately due to some computer issues last night I was unable to write a Day 10 post for this month, but it was out of my control and this has been a long week, so a break wasn't an altogether bad thing.

What I was doing last night while I was waiting for my computer to start working, was filling out the beginnings of the paperwork for Tera's transition to Early Childhood in February.  For those of you who are unfamiliar with the system, kids with physical and/or developmental delays are eligible to receive therapy services from birth to age three on a sliding fee scale with the rest of the cost covered by the state; this is called Early Intervention.  Tera currently receives occupational therapy once a week, speech once a week, developmental therapy once a week, and physical therapy twice a month.  Early Intervention has also covered the cost of her orthotics.  Each state and county vary in how much they provide and what hoops you have to jump through to get services.

We have been lucky because we haven't had to fight for anything for Tera.  We were also lucky that even though she still had to be evaluated when she was about three months old, she automatically qualified for the services because of her diagnosis.  Every six months we meet with her coordinator and her therapists at our house to either write her goals for the year or to discuss how she's progressing and whether the goals need to be rewritten or replaced.  I have read many, many posts from other moms who dread these meetings.  They either have coordinators or therapists who aren't supportive of their child or they get discouraged at their child's progress.  Once again, we've been lucky.  That's not to say that Tera has always met her goals when we meet, but we are very fortunate to have therapists who have always been very positive about her progress and who really highlight all her successes in the prior six month period.

At her last meeting in August, we started the process of discussing how the transition process would go for us and Tera in the next six months.  At the age of three, kids transition out of Early Intervention and in some cases, they move into an Early Childhood program.  This is what Tera will be doing.  We have already attended one conference on this and the options ahead of us can be overwhelming.  There are other possibilities for preschools or preschool-like programs for kids with special needs that vary in the ratio of kids with special needs to typical kids or sometimes in the types of services they will receive.  

One of the things we learned at the conference we attended is that as much as possible, you want your child to be in a least restrictive environment.  Basically that means with as much time spent with typical peers as possible.  We also learned that Early Childhood is actually the most restrictive environment.  I was really concerned about this until I realized that Tera is with typical peers the entire rest of her day, and has been since she was six months old.  I'm not as concerned about that anymore.

The part that worries me is that I won't know what to fight for, for her.  We were told Early Childhood follows Early Intervention and I never really questioned it.  There have been times when I have underestimated what Tera was capable of and I'm scared that I won't know that I should push for more (or less in some cases).  There are so many options out there for her and I just want to make sure that she gets enough of what she needs, but not so much that she can't show everybody what she's really capable of.  I would love to see her in a typical classroom when she actually starts school, but I can't even begin to express how worried I would be about her getting teased or not being able to keep up.  On the other hand, as I said, she's really only ever been with typical kids so I would hate to see her separated from everyone else her age because she may be delayed.  Clearly some of these concerns are more about a few years from now, but the fact remains that we are all getting ready for her to move on to the next step.

This Tuesday Tom and I will meet with the transition coordinator from SEDOL (Special Education District of Lake County) and I will bring the seven page packet that I filled out for Tera.  My understanding is that they will explain how the rest of the process will go, we'll schedule her evaluations to determine her need/eligibility for services (OT, PT, and ST), and we can ask any questions about the next few months.  I struggled on some parts of the paperwork for this meeting because I feel like Tera is capable of more than she shows sometimes.  Some parts were also tricky because I felt like what they were asking is common with many two year-olds; DS or not. I know when we're talking face to face we'll be able to articulate a little better what she can do and what she's still working on.

Until then I'm looking forward to a fun weekend with an extra day off to spend with my little family, and lots of silliness with my girl.  Tomorrow morning we have Tera's swim class so we'll see if I can get her to replicate what she's been working on in the bathtub...


 

Wednesday, October 9, 2013

Day 9 of Down Syndrome Awareness Month!

I'm tired tonight and not feeling particularly creative.  This is more as the result of being a working parent than being the working parent of a child with special needs.  Many times our lives really are more like any other parents'.  We make the daily decisions about what she should eat and drink, fight with her about brushing her teeth, worry about her future, love her, kiss her, and act completely ridiculous with her.

If there's one thing I've learned about being the parent of a child with special needs it's to try and forget that they have special needs sometimes.  In the end we just want for her what most parents want for their kids and that's for her to be happy, responsible, caring, and loved.

That's it for me tonight, I need to be able to get some sleep.  My beautiful special girl woke up three times last night.  And that has nothing to do with her chromosomes.  I don't think...











Tuesday, October 8, 2013

Day 8 of Down Syndrome Awareness Month!

Today I'd like to focus on Tera's speech.  From the minute I started researching Down Syndrome after Tera was born the key word seemed to be "delays".  I've heard some real horror stories from parents who were told not to expect anything from their children with Down Syndrome (yes, even in recent years and by actual medical professionals), but we have been fortunate enough to not be included in that group.  I guess when I think back on it, we weren't really told much one way or another.  At doctor visits we were mostly asked what she was able to do and it was left at that.  Once she was evaluated for Early Intervention services, all the therapists we had were always very positive.  But we are in an information age where almost everything you want to know is at your finger tips.  This can be both encouraging and reassuring, and discouraging and scary all at the same time.

The fact is that most kids with Down Syndrome experience some type of delay; whether it's physical or developmental or both.  When I first started reading posts from other moms two of the most common delays were in walking and talking.  Tera was delayed in walking, but not by much, even by typical standards.  Speech on the other hand has been a bit slower.  We've watched as kids around her and us have started having actual conversations with sentences and everything.  

Tera said "dada" at maybe around 18 months and started actually knowing that it meant Tom by the time she was two (maybe earlier).  Then she really started doing well with animal sounds and a little while later started working on "mama".  Originally it always came out as "baba", but then she would walk around the house this summer calling "mama" over and over again until you asked her to say "mama" and she would immediately say "baba".  After one particularly successful speech session, she started actually saying "mama" all the time and it's the most beautiful sound I've ever heard.  One of the advantages to having a child with delays is that when they are able to accomplish something, it is so incredibly rewarding.  I waited a long time to hear "mama" and even when she's calling it over and over again, or whining it, I still love to hear it every time.  

When we knew that her speech would mostly likely be delayed, we starting signing with her.  It took a lot of practice and making sure we incorporated the same few words every chance we could, but then one day while at Dairy Queen Tera wanted more ice cream and signed "more".  It was her first official sign and she's just taken off since then.  Her other early signs included "all done", "milk", "water", "please", and "eat".  We then started adding in animal signs and have made the choice to only add new ones as they become necessary and are ones that we can use regularly enough for her to pick them up.  These days she can learn a new sign in about a day if it's one that she can practice and use frequently.  

We've recently started having family members come up with their own signs for themselves so she has a way of "saying" their names.  Her signing is one of the things we're most proud of her for.  She has impressed many people with her ability and I have to admit, we are guilty of having her perform for strangers every once in a while.  Tera is currently two and a half and has as a part of her vocabulary the following:

She can say "Dada", "Mama", "YiaYia", "Papou", "cheese", and "ball" and is working on and close to "more", "juice", and according to her speech therapist today, "help".  

She does many animal noises including dog, elephant, giraffe, pig, fish, cow, lion/tiger, sheep, monkey and probably some others I'm forgetting.

She has some other sounds as well, like "choo choo"; I know there are more, but at 9:00 at night I can't think of them.  

She has signs for Uncle Mike, Aunt Cathy, her best friend Harper, and Nani and I would say close to if not more than 40 other signs.  

Each week she learns more signs and gets closer and closer to saying new words.  She is very vocal and is constantly trying to say new things with everyone's encouragement.  Her effort makes me more proud than I can possibly express and I can't wait to hear each new word that comes out.  But "mama" is still my favorite :)




Monday, October 7, 2013

Day 7 of Down Syndrome Awareness Month!

Whenever the topic of Tera's diagnosis at birth comes up, I say the same thing;  I wouldn't change not knowing before she was born.  I know that the unknown would have made me crazy and would have resulted in a very stressful pregnancy and it wouldn't have changed anything about her.

When I was pregnant I did all the research and tried to pick out the most responsible items for our registry.  I didn't pick anything outrageous, I didn't go over the top in the number of things we picked, and I tried to borrow things when possible.  I also tried not to open certain things until I was sure we were going to use them and I returned them if we didn't and bought other things we did (like diapers).  Our crib was $100 and it easily converts to a toddler bed (as we found out on Saturday) and was highly rated for safety and quality. We bought a $200 car seat, but a $15 monitor.  I'm still happy with both.

The reason I mention all this is because we were at Babies R Us on Saturday trying to find a rail for Tera's bed and I felt so nostalgic for all that stuff.  As we walked around I thought back on my numerous trips there to add things to our registry and the excitement at receiving all the beautiful new things.

I have read numerous posts in my DS groups from expecting moms of babies with DS who are wondering what they should register for.  Most of the time the other moms tell them to pick out all of the same things they would for any baby, and to enjoy it and I would probably say the same thing.  There aren't many things I can think of that I bought or received before Tera was born, that changed because of her diagnosis.  I think we exchanged some bottles because she needed the slow flow type, but I'm pretty sure many parents make changes to their bottle choice for many reasons.  We bought some extra burp cloths because she leaked everywhere when she drank a bottle, but so do other kids.  We had to buy some actual infant clothes because we never thought she would be only 6 lbs and we certainly didn't anticipate the slow growth, but it just made clothes last longer on her.

One of the hardest parts of a DS diagnosis, is letting go of some (not all) of the preconceived ideas about how life would be.  I don't think that changes for the parents who find out during pregnancy compared to those who find out at birth.  And I don't necessarily think that one is any easier than the other.  What I do know is that had I known before Tera was born, I would have overwhelmed myself with the "what-ifs" and I can't imagine I would have ever thought about how great our lives would still be.  There was no way to predict how determined she would be, or that she would walk only a few months behind schedule.  I wouldn't have thought she would change so many lives, be so incredibly inspirational, and that I could ever feel as proud as I do of her.  She is amazing; and despite the fact that most parents feel that way about their kids, I don't know that I would have believed how amazing she would be, if someone had told me she would have DS.  But here is she is, amazing me in new ways every day.



  

Sunday, October 6, 2013

Day 6 of Down Syndrome Awareness Month!

It's Sunday night and I need some time to mentally decompress so this will be short.

I'm still adjusting to the fact that Tera is a big girl now.  She's working on potty training, she walks down the stairs by herself, she feeds herself, and now she is in a bed instead of a crib.

I won't say it bothers me, I'm just saying I'm adjusting to it.  I feel like so many of the typical toddler milestones or challenges that parents face have been a surprise to us.  We didn't try and start potty training; she was doing it at school and just signed that she was ready at home.  She didn't start trying to climb out of her crib, she just did it and forced our hand at having to transition her.

I suppose in some ways it's easier this way.  We don't have a long drawn out process to go through to get her do the things that toddlers do.  But it's also taking us a little off guard at every turn.  I told my mom today when she called to ask how her first night in a big girl bed went, this kid has been nothing but surprises from the minute she was born.  In good and bad ways.

In the grand scheme of things, she's surpassing expectations.  Maybe not our expectations because I usually expect Tera to do more than  what's typical for kids with DS.  But that's also part of the problem; people expect that kids with DS will do everything slower and maybe not as well as typical kids. But you know what? They can do anything they want.  They will amaze you in ways you never thought possible.  They will challenge your expectations.  They will challenge your beliefs.  They will challenge you in general.  They will defy the norm and then keep going.  They are amazing people that oftentimes are not given the credit they deserve.

I'm here to tell you, DO NOT underestimate them.  Challenge them, believe in them, love them, respect them, and honor them because they deserve every bit of it.  

Down Syndrome Fact:
All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses. 


Saturday, October 5, 2013

Day 5 of Down Syndrome Awareness Month!

I'm not even sure where to begin.  Today has been what we in our office at school refer to as a shit show.  It didn't start out that way.  In fact it started out just fine.  Tom and I were able to enjoy our morning while my mom had Tera and even had some time to get some things done that we had wanted to before she brought her back home.  

After my mom left we gave Tera lunch and I attempted to get her down for a nap.  My mom told us she should be tired, but she had also fallen asleep in the car on the way back home for about 15 minutes which for Tera, can be just enough to throw her off.  I put her in her crib, left her door open a crack, and went back downstairs to wait for her to hopefully go to sleep.  In the next ten minutes I heard her whine a little, but not cry, and every once in a while I would hear sounds of her playing instead of sleeping.  I didn't think much of it except that she still wasn't going to sleep, but there are times when she'll sit in her crib for a while with her stuffed animals and then just eventually fall asleep.  After about 15 minutes, I decided to go upstairs for something and as I walked up the stairs I noticed there was more light coming in her room than usual.  So I looked in and kind of freaked.  Tera was sitting on top of her changing table next to her crib.  Smiling at me.  She has never once even attempted to climb out of her crib, that we're aware of, and all of sudden today she just did it.  I just stood there looking at her and yelled for Tom.  As he entered the room she smiled and waved at him too.  We just looked at each other and thought, "well shit".  

Not only was she sitting on the dresser, but she was nowhere near sleep.  So we took her downstairs as I slowly started imagining all the things that could have happened and ended badly.  I decided that although I didn't want to encourage it, we had to figure out how she did it, so we brought her back upstairs, put her back in the crib, and waited the ten seconds it took for her to replicate the action.  And it was at that moment that we decided we needed to convert her crib to a toddler bed immediately because we know Tera and she would spend all her waking moments in that crib doing the exact same thing.  

So we started thinking through what we needed to do and decided we needed to run out and find a rail for the bed before tonight.  When we got home, Tom went downstairs for something and realized I had left the crawl space doors open after taking some stuff out earlier this morning.  And then he freaked out.  There was some kind of insect infestation going on and our crawl space floor was covered in bugs.  We immediately started calling exterminators to see who could get out her the fastest.  In the meantime, while we were both a little overwhelmed and grossed out by the situation, Tera was watching us and as she does so often, she started to feel the stress of the situation.  She got very quiet and dropped her head as though she had done something wrong.  

She's incredibly sensitive to situations and in the past few months has really started to react to things differently.  She gets very upset when someone around her is getting yelled at, even when she's done nothing wrong.  She senses stress and immediately wants to comfort you.  And tonight she was feeling it.  What really put all of us over the edge, was when in the middle of trying to find someone to take care of the bug problem, we discovered that the leak we thought had been fixed in our kitchen, wasn't, and we were getting water again.  At about this time, the thunder from the storm we were getting set in and put her even further on edge. 

Tom and I were trying to deal with the situations, both of us highly and visibly stressed and we had to make the conscious decision at that point to take a deep breath and refocus on how we were projecting ourselves to Tera.  Our very sensitive and sweet little girl was having a hard time coping with everything and so I left the chaos for a minute and just held her.  We don’t often both fall apart at the same time, but this was a unique situation.  Nevertheless, we also had to keep in mind that nothing was life threatening and we had to take care of Tera also.  As she went into full Tera mode, she laid her head on my shoulder, gave me kisses, and just smiled at me as if to say, “it’s okay mom; it will all be okay”.  And you know what? She’s right.  And we know that because of her. 

We’ve dealt with difficult things before as a couple, but nothing was or has been as difficult as dealing with her diagnosis and all of its subsequent related issues.  I held her, looked her right in the eye and told her that she was the reason that Daddy and I could handle anything.  That she had taught us that.  And she smiled at me again.  That kid is so amazing to me.  For as much stress as she can sometimes cause, she can also make it disappear in an instant.  Her face, her eyes, her smile, are all completely magical.

Right now she is asleep in a big girl bed.  And tomorrow I’ll tell you how I feel about that…


PS In case you hadn't noticed, I'm going back a bit for her pictures.  I haven't used these in a while and I just love seeing them all again, so I'm going to keep using them.  



Day 4 of Down Syndrome Awareness Month! (A little late)

Weekends are always a little hard for me to get posts in, that's why this one is a little late. This isn't going to be long. 

One of the things I've had to try and be better at is asking other people for help with Tera. We have no shortage of people who want to spend time with her, I just have to ask. So last night she spent the night at my moms while we had some friends over for dinner.   Tera and my mom had a great time and we had a nice relaxing evening and morning. Every parent needs a break sometimes and with all the other complications that come with Tera, we need them a little more often. 

It's not something I'm good at initiating (Tom has no problem asking) but I'm trying to be better at it for my own mental health and the health of our marriage. And it's important that Tera is able to spend time with the rest of the family. 

Now she's home and I spent a good ten minutes just looking at her. Her face just amazes me. But I think it's good to give myself a chance to miss it. 

Thursday, October 3, 2013

Day 3 of Down Syndrome Awareness Month!

The plus side to needing to stay in Tera's room until she falls asleep is I have some time to compose my thoughts.  What I decided to focus on today was Tera's routine or "normal".

This idea was prompted by filling my Amazon cart tonight with Tera necessities.  After her swallow study last March her pulmonologist diagnosed her as aspirating thin liquids.  As a result, we have to thicken everything she drinks.  They sell the thickener online and it's about $20 for jug of it.  Unfortunately we need to have one for our house, daycare, and Tom's parents'.  She's running close to low so I needed to order that.  And since I might as well just have my paycheck sent directly to Amazon anyway, I started looking through her supplies to see if we needed anything else.  As it turns out she also needs her probiotic which, in combination with a tablespoon of flax seed, has helped immensely in reducing the tummy troubles that used to plague her.

So what is a "normal" day for Tera? Well it starts around 5:45am when Tom goes to wake  her up for her nebulizer treatment.  When she's healthy it's only 10 minutes, when she's sick it's two treatments that take 10 and 12 minutes.  He then gives her her thyroid pill and her Prevacid with applesauce.  Next it's up to see me so we can get her dressed and ready to go.  I usually dress her and then Tom puts on her orthotics and shoes while I do her hair.  Because she HATES having her hair done we're always experimenting with new ways to distract her while this is done.  Lately that has been us singing various versions of the Wheels on the Bus.  And by 6:20ish, she and Tom are out the door to daycare.

She typically gets two to three therapies a week at daycare.  This has dramatically decreased our craziness at home and it helps because her therapists work with her teachers on methods to help with her sensory issues (which have decreased) and with her speech and social skills.  We always get a report of what they worked on and what we can continue to work on at home.

Depending on what Tom and I have going on on a given day, one of us picks her up by 4:30 or 5pm.  Once home we start getting dinner ready and that starts with getting Tera's dinner ready.  We try to have her eat the same thing we do, but sometimes it's just not practical or we give her variations of what we're eating.  But regardless of what her meal consists of, she starts with her yogurt.  Each day she gets a few spoonfuls of Greek yogurt, a table spoon of ground flax seed, a packet of her probiotic, her multivitamin, and a spoonful of honey.  Her milk gets thickened and most nights whatever she's eating needs either cheese or BBQ sauce on it (not usually both).  She does pretty well feeding herself although I do her yogurt just to make sure it all gets in.

After dinner we usually play for a while and then there's bath time.  We get her in the tub and she usually plays fairly contentedly for a while just dumping water back and forth between a few containers.  Tonight was a big night because we were able to get her to lay on her stomach and blow bubbles; two things I've been working with her on in her swim class.  Eventually though we do actually have to clean her.  At this point she usually insists on standing in the tub and fighting us at each step.  Some nights go better than others and some are worse than others.  We have to hold her arms at her sides to get her hair wet, which she doesn't like, suds her up, and then try and rinse it which is the worst step of the whole process.  One of us has to hold her so she doesn't fall because she's usually struggling with every pour of water over her head.  Most of the time as soon as we're done, she's fine.  Back in her room we have to comb her hair (reference our morning hair routine above), and I cover her in lotion because her skin is very dry and she has little bumps all over her arms and legs as a result.  Then I pick out one of her super cute pairs of jammies and we go play for a while longer.

Fortunately she doesn't put up much of a fight for bedtime.  We tell her it's time to brush teeth and feed the fishies and she usually walks right upstairs.  Actually brushing her teeth can vary in difficulty. Tonight I read a book to her while Tom brushed her teeth and every time she pushed his hand away, I would stop reading until he was able to finish.  We've essentially become masters at distraction.  Then she watches while Tom feeds the fish, and I take her downstairs for her second nebulizer treatment of the day before she goes to bed.

After the ten minutes, I take her upstairs to bed, she waves goodnight to the fish, and I lay her down in her crib.  Most nights I cover her with her weighted blanket to help with her sensory issues so she can fall asleep easier.  I sit in the rocking chair in her room until I think she's asleep, try not to fall asleep myself, and then I invoke my inner ninja to get across her room's insanely squeaky floors without waking her up.

And that's a typical day in the life of Tera.  When she's healthy.  I'm really hoping I don't get to write another post this month on how this routine becomes more complicated when she's sick.

It's not an easy routine some days, but we have gotten used to it.  It really is made much easier by the sweet face I get to look at throughout the process.

Oh, and by the way, I've decided to bring back some older pictures of Tera just because I want to.  So enjoy these flashbacks for the next few days :)

Down Syndrome Fact:
Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives. 


Wednesday, October 2, 2013

Day 2 of Down Syndrome Awareness Month!

Today I want to talk about fear.  I don't know that I've ever felt as much fear in my life as I have experienced in the past two and a half years.  Actually, I'll go all the way back to the beginning of my pregnancy.

I wasn't particularly worried about my pregnancy, ironically, but there was definitely a lot of fear about many other things.  I've always been a little neurotic so Tom and I were both worried about how I would handle the additional stress and time constraints of a child.  For no particular reason, I had some worries about post-partum depression.  I worried I wouldn't be able to lose the weight I gained after having just come off being in the best shape of my life for my competition.  I worried about how a baby would impact our finances, our time together, and endless other things.  And of course I worried about the actual process of childbirth.

Tera herself really only gave me one scare and that was around eleven weeks.  My doctor had told me I could maybe expect to hear a heartbeat at one of my visits and when he couldn't hear it, despite the fact that he told me it might be early, I freaked out.  I was so worried something was wrong that I scheduled my next appointment a week earlier than I needed to.  When I heard that insanely fast little heartbeat, I felt myself finally breathe again.  As I walked out of my doctor's office that day, I told Tera, out loud, that she should never scare me like that again.  If I had only known...

Fast forward several months.  I fly through a crazy fast delivery and I'm holding our sweet, beautiful baby girl when the doctor walks in, alone, and closes the door behind him.  He sits down in front of us and tells us that he has something he needs to talk to us about.  I think my heart probably dropped right then and there.  He told us very matter of factly that he suspected that Tera had Down Syndrome.  I felt I was fairly knowledgeable on the subject of Down Syndrome and what I knew, scared me.  My mind raced with all the things she wouldn't be able to do and the tears started.

My first thoughts unfortunately consisted of things like her never being able to drive, never getting married or having a family, struggling with everything for the rest of her life, and countless other things I don't often think of anymore.  When the doctor left, we held our brand new baby girl and we cried.

That was just the beginning of my fears.  As the day went on we came to find out our daughter had holes in her heart, was showing signs of strep, was struggling to eat, and would more than likely be kept in the hospital beyond my release.  As the week went on we learned more and more about what life would be like for us.  An overwhelming amount of information, emerging medical issues, and a situation we had not been prepared to deal with were thrust upon us.

Becoming a new parent can be scary for anybody, but add to that the stress of having a child with special needs and special medical conditions and fear doesn't really begin to explain it.  But as the months and years have passed, we've dealt with most of the those initial fears.  There are definitely still times when the fear of the unknown hits me out of nowhere and I have to remind myself of all the things she's already accomplished.  Now the fears mostly center around health concerns and normal parent issues.  I want her to be safe and healthy and happy and loved and taken care of.

It still scares me that the first two and a half years have gone by so fast.  I want to see what she'll become and at the same time I just want to hold onto the little person she is now.  I worry about the people that won't treat her well and kids that may tease her.  I worry about the decisions we'll have to make regarding her education and whether we'll make the right ones.  I don't want to underestimate her, but I want her to be successful and in an environment that allows that.

I know parents really never stop worrying about their kids.  I wish worrying about her was the only thing I had to deal with, but as with everything else, we will try and take it one day at a time.

Down Syndrome Fact:
People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives. 


Tuesday, October 1, 2013

Day 1 of Down Syndrome Awareness Month!

I won't lie when I say one of the advantages to this blogging challenge for October (I blog every day of the 31 days of the month in honor of Down Syndrome Awareness) is that I can just title my posts by the day of the month.  It's the small things I look for to make my life just a little easier.

So here I go; my third 31 for 21 challenge.  As I stated above, I am challenging myself to blog each day of October in support of Down Syndrome Awareness Month.  It will most definitely be a challenge as I have struggled a lot lately with finding extra time to do anything.  But I also know I really need this.  Because I have been so overwhelmed lately by the combination of work and home, I need to use this for the reason I started it; an outlet.

For numerous reasons, work has been much more time consuming this year.  I bring something home with me almost every night and every weekend and it's definitely taking its toll on my sanity when combined with an already busy life full of responsibilities.  Then there's that whole sleeping thing and so there hasn't been much time left for me.

I will get into ways I'm trying to deal with the stress in a day or two, but for now, I want to focus on my whole reason for doing this.  Tera.

One of the things I have found that almost always helps me refocus is holding Tera while she sleeps.  Even after two and a half years, it's still just as special to me as it was when she was first born.  There is just something about watching my own child sleep in my arms that brings an enormous amount of peace to my mind.  I watch her little tongue hang out just between her lips, I feel her hands resting on my arms, I study her feet which I absolutely adore.  I watch her little Buddha belly go up and down as she breathes, and tonight I listened to her mumble "dada" as she was falling asleep.  The ironic thing is that I usually have a whole bunch of things waiting to be done when she is finally asleep, and yet when that happens, I typically have a hard time actually putting her down and getting to them; I just don't want to let her go.  I think I feel better about myself as a mom for that.

Today is one of my favorite days of the school year because I get to teach about Tera.  For the third year now, I have taken this first day of October to spend class time explaining to my students what Down Syndrome is and answering their questions.  It's the one day of the year they can get away with postponing a lesson and it generally is a day of the year in which I have most if not all of their attention.  I take my job as an educator very seriously and I am a firm believer that educating means teaching more than just your subject area and today my subject was Tera.  As with the first two years, my kids were great.  They were understanding, interested, curious, and respectful and I look forward to the questions they bring in the next several months.

I wish I had the time to share all of Tera's uniqueness, but our class periods are only 47 minutes long.  If I had more time, there are some things I've noticed more lately that I would share.  On the nights when she is still awake after her nebulizer as I take her up to bed, she waves goodnight to the fish in our fish tank outside her room.  She looks her happiest when she can have both Tom and I together with her.  There are times when one of us might be with her while the other one is doing something.  As soon as she can get the three of us together, she smiles as though all is right in the world.  She has moments when she needs a hug immediately and she'll hold out her hands and kind of whimper until she gets one.  She will lay her head on your shoulder and then pat your back.

I could go on and I have several other things I'm thinking about, but I do have 30 more days of this so I should probably save some stuff.  I would absolutely love any suggestions as to what to include this month so if you have something you'd like to me to do, include, or write about, please let me know.  The idea is awareness so please help me to spread that in whatever way you can.  Thank you as always for reading and for the support of everyone, I appreciate it more than I can ever say.  Happy Down Syndrome Awareness Month!!!

I'll be sharing facts again this month so for those of you who have been following since the beginning, it'll just be a refresher and for anyone new, enjoy :)

Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.