Thursday, May 31, 2012

At the beginning and now

The great part about final exams as a math teacher, is that the grading is pretty quick and I actually have some free time on my hands while they are testing.  This has given me the unique opportunity to actually read through some articles I found online.  If you do a search on articles regarding Down Syndrome, you’ll most likely find one common theme and that is the recent increased use of a prenatal test that can confirm whether a child has DS much earlier in a woman’s pregnancy than before and without the risk of an invasive procedure.  This has been the subject of much debate in the DS community in the past year because many parents feel that the test will decrease the number of children being born with DS because their parents will choose to abort when they find out.  It’s a highly controversial topic that I have differing opinions on, but it’s not really the point of what I was reading about.  What I was more focused on was how the parents in the articles shared their initial fears and worries and how many of those things have become so much less important to them as time has gone by and their children have grown. 

I will and have admitted that Tom and I came to grips with Tera’s diagnosis much quicker than some other parents do and that’s not a sign of anything other than that’s just who we are as a couple.  We deal with things head on and know that as a couple, we can handle anything.  We also have an incredible support system that made that acceptance exponentially easier.  But that’s not to say there weren’t hours and days of tears on our part at the beginning.  Those first few hours were some of the hardest in my life because we had chosen not to say anything yet and while we were both elated about the birth of our beautiful girl, in the back of our minds both of us couldn’t stop thinking about what we weren’t sharing with our family and friends on what should have been one of the happiest days of our lives. 
Shortly after Tera was born, I received a book called “Gifts” and I started reading through it.  It was short little stories shared by parents of children with DS and it varied from new moms to experienced moms and young babies to grown adults.  Most of it was very positive, but there were also things I read that I hadn’t considered even worrying about.  I remember very clearly the day I realized there was a very good chance Tera would never be a mom.  Also, the idea that she wouldn’t drive hadn’t occurred to me.  What also hadn’t occurred to me was that she would be such an inspiration to so many people.  That wasn’t one of the things that had gone through my head on that first day that I so clearly understand now.   I didn’t know on that first day that people would stop us constantly in stores to tell us how adorable she is.  Or that I could possible love her as much as I do.

However, there are still days when I know how much it sucks that she has it.  When I spend hours trying to schedule her therapies for the month; when she’s at the doctor every week for a month for a different reason; when I feel guilty for not remembering to put her hip helpers on in the morning; when other kids her age are doing things she’s months away from, and sometimes when I realize that part of the reason people are stopping us is because she’s different (but that’s not frequent because she is way too cute to not comment on).  There are many days when I wonder what she’ll be able to do in school, if she’ll find love, if she’ll get teased or taken advantage of, if she’ll live with us forever, and even how we’ll manage another child in the future knowing she’s a little bit more work. 
But even knowing all of what I know and not knowing so much more than that, I wouldn’t change who she is or how we handled anything.  I wouldn’t go back and find out and I have no complaints about the way we were told, how people reacted, or how she was treated and more than anything, I hope that those expecting parents of children with DS can have that same positive experience.  It’s really not the end of the world, it’s just the beginning of a world you didn’t know about. 


Tuesday, May 29, 2012

Feeling lucky

There are stretches of time when self-pity sets in, warranted or not, and I feel like life just sucks.  There are other times when I realize how incredibly lucky I am and I can’t imagine what I might have done in life to deserve what I have.  Fortunately, this weekend brought on the lucky feeling.  It was a weekend filled with family and friends, relaxation and productivity, and just an all around good feeling. 

On Saturday while at my inlaw’s for a BBQ, Tera was able to spend time with her grandparents, aunts and uncles, and her one of her two closest buddies.  She has two “BFFs” as determined by us upon their birth.  I know this sounds ridiculous but I’m sure everyone has friends of their family that just become their family and this is the case with Danica and Harper.  Harper is only two weeks younger than Tera, lives a few blocks away, goes to the same daycare as Tera, and her parents are very good friends of ours.  When Harper’s mom and I were pregnant together, we joked how they would be best friends and go through school together.  Then they were in the same classroom at school and by spending most of their time together, really did become very good friends.  They get excited to see each other, they play well together, and it’s somebody Tera gets to see regularly.  Danica is the daughter of our best friend and is six months younger than Tera.  Tom is Danica’s godfather and Danica’s dad is Tera’s oddfather (we’re slightly nontraditional).  Their family is our family and vice versa.  Danica does not live as close, but we do see her regularly and we spend at least part of most holidays with her and her family.  Even though Danica is six months younger than Tera, since Tera is a little delayed, they are pretty much at the same stage and so it works out really well when they are together also. 
One of the best parts of having two other little girls that are so close in age to Tera, is that they will never know her as anything other than just their friend.  I think one of the most common fears I’ve read about, and definitely one I’ve experienced, is how Tera will make friends and how they will treat her.  It’s such a relief to me knowing that she will already have two people who, knowing their parents, will treat her with nothing but love, compassion, and an understanding that she is no different from them. 

The second part of my “lucky” weekend came on Sunday.  While sitting in our bedroom waiting for Tera to wake up from a nap, I glanced around our room and declared that I was tired of our furniture.  We had bought it after we got married and while it wasn’t cheap to buy, it was apparently cheaply made and is already showing way more wear than it should by now.  It also doesn’t fit well in our room because when we bought it, we were sure that we would never have a bedroom smaller than the one we had at the time.  Well we do.  And it doesn’t fit.  The paint that we used when we painted originally, ended up needing seven coats and it still doesn’t look great and there are marks on it everywhere.  So basically I was frustrated with our whole setup. Tom innocently said we might as well just replace it with stuff from Ikea so at least if something goes wrong we won’t feel like we wasted a lot and from there the ball just started rolling.
Before Tera was born we had redone the floors in her room and knew at the time that they would need to be done in our bedroom and also the other bedroom upstairs.  The new furniture discussion started the process of realizing we might as well just redo the floors, and while we’re at it, paint.  Yesterday we took a trip out to Ikea just to price out what we would want and what we’ve ended up with is quite the project, but that when all said and done, will give us the equivalent of two more closets in our room (the closets in our house suck) and we’ll have redone floors and have new paint. 

 Why does this make me feel lucky? Well besides the fact that I’ll finally have all my clothes in one room, just the fact that we can decide something like this and can actually do it all, makes me thankful for the decisions we’ve made (except buying original bedroom furniture) and how we live our life. 
It was definitely a great weekend with some much needed family time, couple time, and now I only have to make it through two days and a few hours  before my life becomes exponentially easier and more enjoyable because I get to spend more time with my girl!

Friday, May 25, 2012

Motherhood

I read an article called "What I Know About Motherhood Now That I Have a Child with Special Needs" and I had to agree with everything in it, but now I find myself wondering what I really know.  I've only been a part of this group for a little over a year and while I feel like I've learned a lot, there's a lot to be learned still.  I still have a hard time acknowledging the fact that I have a child with special needs.  Not because I can't accept it, but because more and more I don't think of her that way.  In fact, I would have to say the one thing I do know now, is that all of the things I worried about in the beginning are so normal to me now that I just don't know life any other way. 

When I thought about how all her therapies would work and how we'd fit them all in, I was overwhelmed.  Now, I do still get overwhelmed at times, but it all just works out and if we have to skip one, it's really not the end of the world.  I'm guessing she'll still walk at some point even if we have to miss a PT appointment.  At the beginning of this school year I was so worried about how many sick days I might have to use and while it ended up being quite a valid concern, today, I don't care.  We got through the sick months and enjoyed the healthy ones and we're looking forward to the fact that everyone keeps telling us the first year is the worst and that it should get better.

Here are some other things I know.

I know to trust my instincts.  I haven't always done this, but since Tera was born I realized more than anything, I know my child.  I can tell when something is not right with her and so far, I've been pretty accurate.  In fact, last month when she had this horrendous cough for over three weeks and had been congested for just as long, numerous doctors told us they didn't see any indication of a sinus or ear infection.  The cough really bothered me and I was convinced it was the result of something.  After the drainage from her ear and another doctor telling us she didn't think it was an infection, I contacted her ENT who felt it was an ear and sinus infection and prescribed an antibiotic and drops.  Within a week of being on the antibiotic and drops, her ear was clear and the cough and congestion were gone.  But during those weeks when I was sure she was sick and doctors kept telling me they didn't see anything, I second guessed myself a lot and began to wonder if I wasn't just being over dramatic.  Just one instance of me needing to trust my instincts. 

She will do the things other kids her age, and even younger, are doing; in her own time.  Tera really isn't that delayed, but it's hard when I see other kids, much younger than she is, doing things she isn't yet.  What she can do is light up a room with her smile.  She can inspire people that haven't even met her.  She can brighten your day when you're not even in the same room as her.  She can raise over $5000 for an organization that will always appreciate and encourage her.  She can bring together more people than I ever thought possible.  She can be just like every other 15 month old and get into lots of trouble and make her parents crazy. 

Some of the things I'm still working on.

How to comfortably balance my life so that I feel fulfilled and happy.  I want to spend quality time with Tera, but I don't think I could be a stay at home mom (not that it's really an option right now).  When I do get to spend time with her, making sure it is actually quality time which is difficult in and of itself because we have to try and incorporate her goals into that time. 

How to exist contentedly in the moment instead of reliving the past and worrying about the future.  I honestly have no idea how to go about this. 
How to be calm like my mom (who actually isn't calm at all, but it's a funny saying between my mom and sisters and I).  Actually I'd take trying to be calm at all, but it just doesn't seem to be in my nature.  It's a work in progress.

How to be a good mom.  I think I'm doing pretty well so far, but just like in anything there is a need for constant reflection (some might think of this as compulsion) and the desire to improve. 
I do not believe there is a perfect parent.  I believe there are amazing ones and lousy ones and that anyone who loves their child has the potential to be an amazing one.  How a person chooses to go about achieving that is a very personal decision and journey and ultimately you are only accountable to one person (or people depending on how many children you have).  I didn't agree with everything my parents did when I was young but they did what they thought was right and as a parent myself now, I only hope I have the courage to do the same.

Wednesday, May 23, 2012

Educating

I wrote my first post a little over a year ago (May 20, 2011) and when I embarked on this little experiment, I had several goals in mind.  First and foremost was to use it as somewhat of a live journal; a place for me to express my thoughts.  Second, it was to share my experiences as a new mom to a beautiful little girl with Down Syndrome.  And finally, it was to educate people about Down Syndrome.  After doing the 31 for 21 blogging challenge this past October for Down Syndrome Awareness month, the amount of people following my blog really increased and I've had so many people tell me they've learned so many things they didn't know about Down Syndrome before.  All the support I've received has not only made writing more enjoyable, it's also encouraged me to keep spreading awareness and information about Down Syndrome and what life is like with it in our family. 

Today one of my students asked about how Tera was doing.  As I updated him a little bit the conversation turned towards future children.  He asked me if we were planning on having any more and I shared that we were in fact planning on it, but that so much of what goes on with Tera has affected the timing of when that might happen.  We began talking about prenatal testing and he and another student asked if we knew before Tera was born and whether we would do testing with any future children.  My response is always the same when this question comes up; I would never change the decision we made to not know with Tera, I'm grateful everyday I didn't know and that I was able to enjoy my pregnancy without any undue stress.  However, I couldn't do it again; I just can't go through that surprise again and knowing what I know now, I would be incredibly worried the whole time and I would be putting myself and a baby under too much stress.  Finally, he asked a very difficult question for him.  After some stumbling and hemming and hawing, he asked if I hoped my next child is "normal".  He was very, very concerned the whole time about how to phrase it right and I explained that I'm not easily offended and just to ask it the best he could.  My explanation was this: while I would never change what Tera is now, if I could remove that extra chromosome from her body and make her life easier and more comfortable, I would.  It's true that any child can experience hardship and struggle, but Down Syndrome makes that far more likely than the average child.  There are many children who's looks make them stand out, but Tera will more than likely always be recognized as having Down Syndrome.  So when asked this question, I have to honestly answer that given the choice, I would not want Tera to have DS.  But she will overcome her struggles and will always be supported in them, her hardships will make her a strong woman, and her beauty goes without saying. 

After school I had a colleague ask about her and when I gave her some of the updates she told me that she had an aunt that had DS and she just never knew that much about it.  Once again, Tera educates. 

I read a post today in my forum asking people to basically stop being so sensitive about other people's comments to them regarding their child with DS.  It's something that I've written about before and my perspective is different from some people's but in this case, I was in complete agreement.  Many people, ourselves as parents pre-DS child included, didn't know before what we know now.  Many of us may have or have made similar comments that the DS community may find insulting or insensitive, but we didn't know any better.  As a teacher I have access to around 150 developing minds a year and that's 150 more people a year that will know up and down sides to DS.  With any luck the next generation of people won't make those comments that may be perceived as insensitive and it will be because they are educated and have a personal connection, and of course Tera will have been a part of that. 






Saturday, May 19, 2012

Amazing

I have been studying Tera lately.  It's not difficult, she's pretty easy on the eyes, and as of late she needs pretty much constant supervision.  And I've noticed something; my daughter is amazing.  I'm sure that there are many other parents that observe the day to day actions of their children and are amazed as well and I don't have any other children to compare Tera to.  But I have to say, when a team of therapists are monitoring and evaluating her every move, literally, all those little actions seem so much more meaningful. 

Every milestone Tera has reached has been anticipated.  I read my friends' posts on Facebook about how they see evidence of what their children might be doing soon and it's not because they've already passed by the standard age when it happens.  For almost every milestone Tera has reached, she's had to work hard and we've had to practice. 

Months ago, each one of those milestones still happened independently, but lately, each one of the skills and abilities she has achieved have come together and every time I watch her I am just so amazed.  Something so simple as watching her play and reaching for items in a basket full of toys for a specific one, watching her place balls purposefully in her toy and then pushing the right button to make all the balls pop, watching her reach up and to her side, watching her transfer an item from one hand to the other, and so many other things, amazes me. These are things we spent hours and days and weeks working on and now she does them naturally. 

Tera has worked so hard for so many months and when I see her accomplish something my heart wants to explode with pride.  This past month she has been flying through a checklist of skills and every time she hits one, I want to share it with everyone.  It's such a delicate balance of time as a family when we decide to just play and when we decide to play with purpose.  It can be difficult when we just want to eat dinner and I realize after we've finished that I didn't sign as much as I should have or that I made something easier for her than I should have instead of encouraging her to do it herself.  But when I see her show me where her nose is, and where her tummy is, and when we see her sign "more", and feed herself a whole meal, and take two or three crawling steps and then switch to her belly, and when we say no and she stops (if only temporarily), and when she recognizes her favorite stuffed animal and needs to take it out of her crib with her in the morning, and when I go into her room to pick her up when she wakes up in the morning and she's standing and smiling at me, I realize that all those hours we've spent practicing, and the hours I've spent worrying about not practicing, are worth it.

I want one thing for my daughter above everything else; happiness.  I will never push her to do something that makes her unhappy and when I see her accomplish something that makes her happy, my own happiness will go, and has gone, right through the roof.  She loves to play and all the skills she has learned make that playtime more enjoyable and so it is worth it. 

So yes my daughter is amazing, and inspiring, and special and I've learned something in the past year.  She is all of these things not because she was born with an extra chromosome; she has one but it doesn't define her.  She is all of these things because that is her personality and that person that she is becoming and I couldn't be more proud of her. 

Thursday, May 17, 2012

My horrible, no good, very bad afternoon

My day was going alright until about 4pm today.  I had to go to a doctor appointment I didn't want to go to then got stuck in traffic on the way to pick up Tera.  When I got there, Tera was standing in her crib; on a time out.  Yes that's right, my child had to be separated from the other kids because she has become a chronic hair puller.  She has some days that are worse than others, but it's always a problem and apparently when she does it too much, this is what they do.  I'm not upset about the punishment, at the age of one there aren't too many ways to punish a child.  I'm upset because I don't want my kid to be the problem kid.  I suppose there are worse things she could be, like a biter or a hitter, but somehow the fact that she's only 15 months old and only has one tooth so far don't make me feel any better.

I hate knowing that she's doing something she's not supposed to be and that it's to someone else.  I'm on the receiving end of that hair pulling frequently and it's not comfortable.  Now I have to start looking into solutions because as of late she really seems to find the word and sign for "no" hysterical.  One of the things I've always feared about having kids was having one that wasn't well behaved.  I understand she's only one but I'm also very conscious of the fact that kids with DS can be stubborn and she may not process things the same way as other kids do.  I never want somebody else (besides her teachers) to have to police her so I need to find a way to curtail this behavior. 

 I was also told that she's starting to drink juice from a sippy cup, something else I'm not terribly thrilled about.  Her speech therapist told us the muscles used for speech are better developed using a straw instead of a sippy cup.  We only use straw cups at home and it's not that sippy cups are detrimental to her speech development, it's just that the straws are better.  We're also not fans of juice.  There's no health benefit to it at this age and she doesn't need it, but we've been told that DCFS rules state that they have to offer it to her.  For the past few weeks, she's refused it and we haven't had to worry, but apparently in the past few days she's decided to try it. 

After I got all this news I had to sit in traffic again to drop off yet another prescription.  When I did finally get home, the dog had pooped on the floor again.  While I was in the middle of cleaning that up I heard the clank of her dish which meant Tera was playing with it again.  Usually this is just a nuisance, but today of course, was the one day that Jaina hadn't finished her food, or new medication, and Tera had managed to sneak some of the food in her mouth (fortunately missing the medication).  I had to run over to her, scrape all the dog food out of her mouth, then go back to cleaning up the poop.  It was then that Tom came home. 

As I sat in our dining room on the verge of tears, and then in tears, Tom offered to take me to dinner, which I was too tired for.  Ice cream from Dairy Queen on the other hand was too much to pass up.

So as I sit here my to-do list is streaming through my head.  Tomorrow is another day and all I can do is hope that tomorrow goes better. 

 

Wednesday, May 16, 2012

Reflecting

I haven't been overly thrilled by the quality of my posts these fast few weeks.  Many nights I have what I think is a good idea, but then I literally don't have the brain power to form coherent sentences and well thought out paragraphs.  I feel like my thoughts are all over and that when I think of something during the day, by the time I'm ready to get it out, I forget half of what I wanted to say.  I really think I might NEED Siri on the iPhone (I only have the 4) because relaying my thoughts out loud and having them transcribed electronically might be the only way I can keep track of anything. 

I'm working on new methods of keeping track of my ideas though.  I've been swamped at work this week, but I keep coming across posts on Facebook or articles shared by other people that make me think about something I want to write about.  But then within ten minutes, I can't even remember where I saw it.  I've started trying to store articles on my phone and today I actually took a picture of my computer screen with my phone so I could remember where I saw something.  My new goal is to try and make sure I write when I know I can actually put together something that I can be proud of.  That may mean I miss a few days here and there in the next two weeks while my school year is finishing up.  I know this is supposed to be a personal mission, but I've been told my so many people how much they love reading what I have write that I want to make sure nobody is sitting there reading one of my posts and wondering what the hell I'm doing.

I have to say, since I started on this blogging adventure, I've become so much more aware of how other people use their blogs and how impressed I am with some of the ones I've come across.  And to be perfectly honest, there are many that I read and wonder why I can't write the way they do.  There is a little jealousy on my part, I won't lie.  Then I have to remind myself of a few things the first of which is, I'm not a professional writer.  I have no training and it bothers me when people claim they can do my job just as well as I can without the training and practice I've had, so I shouldn't claim that I can do the same thing as someone else who has been trained in their profession.  Second, I do this for me.  It's a hobby and therapeutic and I enjoy it.  I'm not making money and I have no aspirations to take this thing national; fame has no appeal to me.  Third, I don't have time.  I work full time and I have a kid that while very easy-going, is fairly high-maintenance.  I don't sleep well as it is so I try to enjoy the little sleep that I do get, and at night I want to spend my time with my family, not tied to my computer by obligation. 



I have a few ideas that I'm looking forward to writing about in the next few days and hopefully I can put into action some of my plans to get back to making this the way I want it to be. 

Tuesday, May 15, 2012

Growing up is hard to do

For any fans of the show Bones out there, I just finished watching the season finale and it was one crazy intense episode! I can't believe how the season ended and I don't do well with suspense so it's going to be a long, difficult wait until it comes back. 

I don't know that watching something so intense before going to bed was such a good idea, especially considering how on edge I've been the past two days trying to manage the craziness of my home and work life.  There are really just not enough hours in the day, and if there were, I'd probably just be more tired from trying to get more stuff done.

When I was a high school freshman I overheard a senior say she wished there were more hours in the day and I wondered why someone would ever want that.  But that's the great part about being young;  to-do lists are not part of the game.  Now, I have no less than five to-do lists going at any given time and then I have to take time to condense those lists down to fewer lists. 

When I was younger I always wanted to be older.  There was always something more appealing about the next stage in life.  In elementary school I wanted to be in junior high, in junior high I wanted to be in high school, in high school I just wanted to leave for college.  Then I got to college and I wanted to graduate, find a job, and get my own place.  Now that I have a job and my own place, I want to find a way to make time to do all the things that go along with having a job and my own place.  Don't misunderstand, I love my life (most of the time), it's just a vicious cycle.

But last night it occurred to me that growing up, isn't all its cracked up to be.  Sure you get to be in charge and eat whatever you want (not a good thing necessarily), stay up late (again, not necessarily good), and make all your own decisions.  This last one, making decisions, is really not what kids make it out to be.  Not only do you get to make the decisions you want, but you have to make the decisions that you don't want to. 

We had to take our dog to the vet again last night and we really thought they were going to tell us it was the end.  She's been deteriorating slowly and we were really convinced we were going get the news we'd been dreading; that she's in pain.  Instead, the doctor gave us a new medication to try to help alleviate some of her discomfort and hopefully extend her quality of life.  But on the way there, I remembered when my mom had to make that same decision for my childhood dog and I thought to myself, this is one of those times when being an adult absolutely sucks.  When you're a kid, someone else makes those tough decisions, but when you're the adult, you make the call and you have to live with it. 

Yes being an adult has it's perks.  Wine is one of them.  But right now I have to remember that I have to work to support all of my adult decisions and so I'm making the decision to finish watching America's Got Talent to unwind from Bones and prepare myself for the battle that is my next eleven days. 

Sunday, May 13, 2012

Mother's Day

Wow, where to begin on such a special day.  This has been a big weekend for me.  For starters, I turned 32 yesterday.  Yes 32.  I was pretty much okay with this until my mom kept telling me how she couldn't believe I was turning 32.  I'm actually still okay with it, but I haven't really thought about it much to be honest. 

There are definitely times when my age is more of a conscious thought.  I've never been a person who's worried about what I've accomplished in my life up to a point; I've always been happy with my accomplishments and their timeline  What affects me more is when I think about the time I have left to spend with the people I care about most.  I don't mean that to be morbid by any means, I just tend to think back to when I was in my 20's and it seemed like I was just starting my life.  While I'm still only in my early 30's I feel like it's that much less time that I have to enjoy things.  But this weekend, all I've focused on is how incredibly lucky I am to have the things and people I do and how I couldn't possibly be bothered by my age when I have so much to show for the 32 years I've been on this planet. 

Which brings me to today.  I've spent almost every Mother's Day I can remember with my mom because we always celebrate my birthday and Mother's Day together.  But this year my sister was graduating and my mom had her final exam to study for and she wanted me to just to be able to relax so I spent Mother's Day at home.  For the past few weeks Tom has been asking me what I wanted to do for my birthday and Mother's Day and I've had no idea. This morning Tom proposed a plan and I agreed and we had a great day. 

While I was enjoying my day as a mom, I spent a lot of time contemplating all the other moms I know.  I have been inspired by so many moms in my life both as family and friends that it can be kind of intimidating to try and live up to.  I also spent more time than usual amazed by the perfection of my daughter.  When she was first born I couldn't believe how many hours I spent just staring at her.  A year later, she's harder to stare at for hours because she never stays still, but I still analyze every little detail of her when I can.  I fall more in love with her every day and at the same time, more and more in love with the man that created her with me.  The way that Tera's face absolutely lights up EVERY time she sees her dad makes me absolutely melt and I couldnt' ask for a better, more perfect, weirder little family than the one I have. 

Motherhood has been a lot of things: amazing, joyous, stressful, painful, teary, tiring, emotional, perfection, imperfection, exhilarating, heart-wrenching, and the most amazing thing I have ever experienced.  Some of it I was prepared for, some of it I wasn't.  I do know that Tom and I are ultimately the first and last people to decide things for Tera, at least for right now, but it's reassuring to know that one, we are doing it together, and two, we have a lot of other moms (and dads) that we can depend on to help us through it all. 

I had a lot more thoughts going through my head today that I wanted to include, but I can't seem to put them all together tonight.  I hope this reaches all the moms that I want it to, I hope you all know who you are. 


But before I call it a night, I have to send one very, very Happy Mother's Day to the what I can only describe as the best mom in the world.  An amazing supporter, the person who's been there for me since the second I entered the world, and my hero.  Happy Mother's Day to my mom, I love you more than I can ever say. 

Thursday, May 10, 2012

Reminiscing

I've been thinking a lot lately about the day Tera was born and when we received her diagnosis.  I'm not really sure why this keeps popping in my head; I have about a 35 minute drive to and from work and I seem to be thinking a bit too much during those drives as of late. 

Once or twice I thought about the day after when Tom had to share the news with our family and friends, but mostly I think about right after she was born.  We now have three digital frames in our house and not surprisingly, we have tons of pictures of Tera on them.  Every time one of her first pictures comes up, I'm sent right back to that day.  While those pictures are a constant reminder of the pain and grief we felt that day, I wouldn't trade those memories for anything in the world.  I never once forget how lucky I am to have her and no matter what stress I'm feeling, I always know how much better I am with her than without her. 

I recently read a blog post from a mom of a special needs child who wrote about seven things people don't know about special needs parents.  One of the items she lists is things she wishes people would stop saying and one of them is how people regularly say how they just hope their baby is healthy when they are expecting. She does state that she obviously understands and wishes the same thing for every baby.  But she admits what she really wants to ask is, "What if it isn't healthy? What then?" And that her response would be to tell them that it will be ok and that their child will still have a great life. 

This kind of stuck with me because it's one of those things many people, myself included, may not really think about during their pregnancy.  I definitely experienced some paranoia at different times, but I never really considered how I would react if I received that kind of news.  And then I received that kind of news.

At the beginning I felt like it would never get any better and I would always be mourning the loss of the child I thought I would have.  I thought I would always be sad about her being different, but now I embrace it.  There are many days when even though I think about DS, I don't think about Tera having it.  I just think about that little face and how she's so much like her dad and how every single day her personality grows just a little bit more.  No matter how much hurt I felt at the beginning, and how unprepared I was for it, life is pretty good now (that sounds kind of after-school-specialish I know).




Wednesday, May 9, 2012

Just more craziness


So I had a few days off from posting mostly due to a very busy weekend.  Today is one of those days when I once again wonder and reflect whether I’m being a cautious mom, or a neurotic mom.  My husband would immediately say neurotic, but maybe not necessarily for the same reason that I’m thinking I might be.  Of course when I started writing this on Tuesday night, my normally easy going little girl was crying hysterically when she should have been sleeping, yet another indication that all is not well with her.

She’s been congested and coughing for over three weeks now and despite numerous visits to doctors for various reasons, nobody seems to be able to tell us why other than she probably just has a cold.  After yet another visit this past Sunday morning for what I was sure was an ear infection (liquidy orange goo from her ear seemed like a bad sign to me), the doctor told us she didn’t have an ear infection or a sinus infection but just to keep an eye on her.  I emailed her ENT Monday to ask his opinion and based on her charts, he thinks she does have a sinus infection and ear infection.  He sent in a prescription for an antibiotic and some drops and we’re supposed to take her in in about two to three weeks for a follow up. 
It’s not that I don’t trust the other doctors we’ve seen; they’ve always been very good with Tera.  But I also feel that after three weeks of coughing, there should be some explanation.  Monday morning was a horrible example when she started this horrific coughing around 4am that continued until I had to wake her up at 5:30. 

Then last night was just completely bizarre.  She seemed very tried earlier than usual so I put her to bed while Tom ran to the store.  As tired as she was, she had a very hard time going down.  There was lots of crying and I couldn’t seem to do anything to get her to go to sleep.  Finally I tried giving her some more of her bottle and she finally calmed down and went to sleep.  But then about 45 minutes later she started crying again.  This happens pretty regularly with her and usually we can just give her a few minutes and she goes back to sleep on her own, occasionally we have to go up and pat her back for a few minutes.  Not last night.  After Tom spent a while trying to get her back down, he decided to just let her try and cry it out.  After about 7 minutes of that (yes we were watching the time) I decided if she kept it up she wouldn’t be able to breathe with all her congestion and I went up.  I then had to use what little energy I had just to hold onto her as she contorted her body in all directions.  Then Tom took over again and tried walking with her.  Finally, I caved and tried giving her more of her bottle.  That mostly worked but every time I thought she was asleep and pulled the bottle out, she woke up and started crying.  When she finished that she was still crying.  Not knowing what else to try, Tom turned on Sesame Street and she immediately went into a trance until she finally fell asleep.  We had a few more minor episodes right after that, but then she was out until morning. 

Then we have tonight.  We had a lovely dinner out with our friends only to come home to dog poop on the floor.  After cleaning it up and spending some time on the floor with Tera, I was convinced there was more somewhere because I could smell it.  It turns out Jaina had stepped on it and had it on her feet.  We then had to change all Tera’s clothes, Tom had to take Jaina out and clean her up, then we had to clean up inside. 

At this particular moment, I think I have more to say, but I literally can’t keep my eyes open and this post has now taken me two days to write.  Maybe tomorrow night I can actually get something done, we won’t have any crises, and I can articulate the rest of my thoughts. 


Saturday, May 5, 2012

When to tell...

Oh what a day.  Our morning was relaxing enough.  Tera took a nap around 9:30 and since I was exhausted, I tried to take one too.  And by tried I mean I woke up over an hour later.  Apparently I was also tired.  We ran our errands, came back, and Tera napped again.  After her morning nap, I discovered some lovely orange goo coming from her ear from what I can only guess is an ear infection.  This would be her 4th one since getting tubes which means I'll probably have to get a hold of her ENT next week because I'm pretty sure that shouldn't happen more AFTER she gets tubes. 

On the plus side, since it is Tera, you would never even know from from her demeanor.  Another plus, is that our doctor's office has Sunday walk-in hour so it looks like our lazy Sunday morning will include yet another trip to the doctor.  I'm not one to complain about insurance because mine is about as good as you can possibly get, but I'm not sure I really want to count up the amount of money we've spent in the last month in prescriptions and office co-pays. 

This afternoon we went to a Cinco de Mayo party and Tera did great.  She got a little fussy around 7pm, but that wasn't too surprising considering it was kind of noisy and there was a lot going on.  The part that made me think was how many kids there were around.  There were a lot and a few of them were right around Tera's age.  Several of the slightly older kids came to sit with her and play and it was very sweet.  At one point, a little boy who was about 10 months old was also on the floor and so we were talking with his parents.  He and Tera were about the same size (though four months apart) and he was crawling and pulling himself on various things.  We had a few questions about whether she's crawling yet and of course comparing all the trouble they get into.  On the way home Tom and I were both kind of thinking the same thing.  Whenever we're around other people that we don't know, and that aren't part of our DS community, we wonder when or if to tell them about Tera's having DS.  We certainly don't open the conversation with it, and we're by no means hiding it, but it's always tricky to figure out when and how or if to bring it up. 

In situations like tonight when lots of people we don't know are asking what she's doing we certainly don't need to go through it with everyone.  There are times when people we're around are friends of our friends or family and do happen to know.  Then there are times when it seems fairly obvious they don't know.  We never want people to feel uncomfortable or awkward, but at times, it would answer a lot of questions up front that people may be wondering. 

I do think it may be apparent to more people as she gets older that she has DS just by her features, but it's hard for me to tell whether people can tell by looking at her or not.  I know as she continues to get older, it will probably be more and more obvious and these questions may not come up as much.  Or it may just bring up more (and from what I've read from other parents, the questions may get more and more bizarre). 

Either way, it was a really nice evening and Tera did very well.  I do love knowing that we have such a personable daughter that is easy to be around and while a little mischievous at times, is so very easy-going and good-natured. 

Tomorrow we have another gathering as we see our niece get baptized.  I'm very excited and am looking forward to it.  Hopefully Tera is as good tomorrow as she was today and with any luck, we'll only have one anti-biotic to give her when we leave the doctor...

Thursday, May 3, 2012

Happiness

I'm referencing my 365 questions for 5 years journal tonight.  The question for April 29th was, "Who can make you happier and how?" I would hope that for most people that answer would be themselves.  As much as I might not always believe this, a person is responsible for their own happiness.  Now that is not to say that other people can't affect a day, a week, or even a month or two.  But ultimately, I am responsible for my own happiness by making decisions and changes that do in fact make me happy. 

This is of course easier said than done. I'm not oblivious to that fact.  I'm also cognizant of the fact that not everything can be changed.  Does Tera having DS make me happy? Not usually, but I try not to let it ruin the fact that by merely looking at her face or hearing her voice I am immediately happier than I was before.  I can't change the fact that she has it, but I can choose to accept it for what it is and move on.  As a result of her birth and subsequent diagnosis, we've met some very special people and discovered a new closeness with our family and friends.  Our situation and how we deal with it has made me see the good in people and has also brought out the good in people. 

One of the things I'm struggling with professionally is how many times I leave work feeling like so many of my students believe they are entitled to life.  My parents instilled dedication and hard work in me and I've carried that with me throughout my life.  It's very cliche to say that nothing worth having is easy, but it's true.

When I trained for my fitness show I worked out harder than I've ever worked out in my life. I was more disciplined than I ever thought I could be, and it paid off.  I didn't win but I was in the best shape of my life and was proud of what I was able to do.  I didn't believe that they should have just told me I won because I showed up, but that's exactly what so many young people think these days.  All I hear is requests for extra credit or with one month left of school, questions about how they can pass.  First of all, extra credit means you have to have done the original work in the first place so that the extra credit, is actually extra.  Second, why weren't you concerned about the fact that you were failing back in February, or March, or even April? My job is provide my students with the tools and means to learn.  It does not mean allowing them to bring in 57 boxes of Kleenex to give them enough extra credit to say that they learned a semester's worth of math.  In the past few days I've had several students in several classes say they wish they had done what they were supposed to earlier so they wouldn't be in this position.  But I hear more asking me why I'm not "giving" them a passing grade?

I can't respond to many of these students the way I would like to, but mostly I just want them to understand that in my class, you have to earn your grade.  I don't ask that they do anything above and beyond doing their homework and paying attention in class.  Just by doing these two things, the majority of my students would be doing better than they are.  But so many of them believe that it's just someone else's problem or fault instead of theirs.  They are determined to make sure that someone else makes them happy. 

Now I will make myself happy by choosing the picture of my beautiful baby to include here, heading to bed, hopefully sleeping, and waking up to prepare myself for another day. 

Wednesday, May 2, 2012

Nose!

I have decided that instead of wallowing in pity (and that may be slightly over-dramatic terminology) over Tera's lack of communication, we are just going to tackle it head on.  I have been working with Tera for several days on just one specific body identification: nose.  We practice finding my nose and then her nose and we go back and forth.  I put her hand on my nose and say "Mama's nose" and then we move her hand to her nose and I say "Tera's nose".  We do this as many as ten times back forth and then I let go of her hand and ask, "Where's mama's nose?" The first time she put her hand on my nose, I almost cried.  It's really the first sign of communication and understanding that I've seen yet.  I'll ask her repeatedly until she seems to lose interest.  Then, at random times without practicing, I'll ask where my nose is and most of the time she'll put her hand on either my nose or her nose. 

My plan is try to practice this for a few more days and then add in tummy to the routine.  I've made sure to use all our routine words repeatedly with her, using signs when I know them, and trying to incorporate her hands into it as much as possible. 

I'm still very anxious to see her sign something.  I feel like Tom and I are doing a pretty good job with signing as much as we can and trying to get our family to do it with her as well.  It's difficult to determine whether or not she understands the signs because she hasn't responded in any way to them. 

So there's our progress for this week.  She's still not sick although while her cough doesn't seem as frequent, it does still sound just as bad.  She's also incredibly noisy while drinking.  It makes me wonder about a swallow study where they test to see if she's aspirating any of her liquids.  I've wondered about it before but while trying not to sound like a nutcase, I haven't said anything to anyone yet.  I may be consulting my sister's many resources at the AAP very soon here...