Thursday, August 30, 2012

My first week back

I've officially been back to work for four whole days now and I'm exhausted.  So far it's gone well, I just need a few more hours in the day and it would be great if I could maybe use one or two of those extra hours for sleep.

I started out the week on Monday with an institute day that included a fantastic speaker.  As much as I'm not a fan of touchy, feely, we're going to change the world type presentations, I do appreciate starting out the school year being inspired and challenged to try something new that doesn't involve curriculum.  As a teacher, I need more help finding ways to reach my students and make them want to succeed and less time on how to instruct them and that was exactly what our speaker talked about.  I came out of that day with ideas and I was inspired to reach my students even more.  It turns out that I also seem to have a pretty good group of students to work with and so I'm excited to see how the year progresses.  One thing that I did debate about was whether to share all of Tera's "information" with my students on the first day.  I used to do a little more of an introduction of myself on the first day and I've gotten away from that and just let them get to know me as the year progresses.  However, I do feel her situation sometimes affects my job and so I contemplated it, but in the end I decided that if I don't want other people to make a big deal about it, I shouldn't either.  If it doesn't come up before October, I will definitely be sharing it for Down Syndrome Awareness Month.  

The difficult part of the week has been in trying to adjust to being back at work with our crazy home life.  I've been making a very conscious effort to work out regularly these past few weeks and this was the first week I've had to do it while working.  Monday was easy because Tera was with Tom's parents during the day and then we go over there for dinner so I was able to come home, get it done, and then head over there.  Tuesday Tera had PT at home so Tom worked out while I came home for her therapy then when he got home, I changed and did my workout, we ate dinner, did her bath, put her to bed, I paid bills, and then I collapsed into bed.  On Wednesday Tom worked out, I picked Tera up, came home, prepared some things for our lunches, Tom came home, I worked out while he started her dinner, I finished my workout, we ate dinner, played with Tera for about 20 minutes and then it was time for her to go to bed, and I finally sat down for about 20 minutes before Tera woke up for the first of many times and then we both collapsed into bed.  This afternoon I had a chiropractor appointment so Tom picked Tera up, I came home, we ate dinner, took a short walk, played for a bit, put Tera to bed and I finally had a chance to sit down and write (before we both collapse into bed).  It's difficult to know that I've had so much less time to even just sit down with Tera each evening before she has to go to bed because she's so tired from her day at school.  We knew that if we both wanted to be able to workout, our evenings would be a little more hectic and maybe as we settle into our new routine things will get a little easier, but it's important to both of us that we are able to do this so we're trying to make it work.  Fortunately we have a long weekend ahead of us and I can catch up on some snuggle and play time with my favorite little girl.  

On the other hand, Tera seems to be finding new ways to spend time with us since she has woken up every night this week so far in the middle of the night, and last night was at least five times after we initially put her to bed.  She does in fact have a new tooth that should break ground any day now, so we're attributing these restless nights to that and hoping there's nothing more to it.  Tonight we just gave her the Motrin before bed and we're hoping for the best (so that I can collapse and STAY in bed until morning).  
Reading time with my girl

Sunday, August 26, 2012

18 months

Today my baby is 18 months old.  As I start to write this one of the pictures from her 1st birthday party is on our digital frame and I'm looking at how different she looks now than just six months ago.  We just attended the first birthday party of my beautiful niece (Tom's goddaughter) yesterday and it made me think so much of Tera's party not so long ago.  The worst part about remembering her birthday party is also remembering how sick she was and how amazing she still was through it all.  Her doctor told us the week following her party and her pneumonia diagnosis, that based on her xrays, most adults would have been in the hospital.  But that when he looked at her he wouldn't have even known she was sick.  She was such a trooper and did so well and I just remember the worry and exhaustion that Tom and I were both feeling that day as we celebrated the end of her first year of life, and her first year of struggles, but how happy we were to have her.  Mostly hers was a struggle to stay healthy because everything else Tera has taken in stride.  She works hard to do the things she does, but she makes it look effortless and takes such joy and pride in her accomplishments.  She truly has inspired me and so much of her family because of the sheer tenacity in which she tackles every obstacle and maintains her sweet disposition through it all.

She just had her check up with her endocrinologist this week for her thyroid and we discovered, much to our surprise, that she's only grown less than an inch since her last check up four months ago.  It doesn't bother us so much as surprises us because so many of the people that see her swear she's getting bigger every day.  All it really means is that she's still our peanut and probably always will be. She doesn't ever look sickly or skinny, just petite and little.  Her current weight is just under 21lbs and her height is 29.75 inches. What is growing is her hair, and that seems to be the only thing.  She still only has four teeth, which is still frustrating only in that we thought that with the first couple it would mean the rest would start coming in soon.  That has not been the case, but the frustrating part is that since she still only has four, we keep thinking that any anomaly in her sleep schedule, behavior, or eating is related to teething.  I swear teething might be one of the most frustrating "health" issues for parents because you just never know for sure until you see one and if it isn't a tooth, you're still left wondering what the hell is wrong with your kid. I'm not worried though because I always remind myself that so far I haven't read about any kid that only got four baby teeth.  And while I'm hoping she becomes a trendsetter, I'm hoping it's not in setting that record.

Some of my favorite things about Tera right now:  she LOVES giving kisses.  I might give this kid about a thousand (and that's not much of an exaggeration) kisses a day and all I have to do is ask for a kiss and I get a big wet one in return.  She will also stop right in the middle of playing to give me a kiss.  If she even hears a word that sounds like kiss, she's ready.  I love that she LOVES to read.  One of her new adorably, sweet new habits is to hand you a book, sign "please", and then crawl into your lap to have it read.  We don't often get through more than a few pages before she wants to change books, but I adore that she does it.


She now signs "more", "eat", "kitty", "all done", "please", and "more please".  She seems to sometimes do "puppy" and I think she understands "milk" and "water".   She also seems to be making advances in her understanding of everyday objects.  She knows that socks and shoes go on feet, her rubber bands and comb go in her hair, she tries to feed her baby doll with a spoon and puts her cup to the baby's mouth, she puts her  pants near her legs and her shirts near her head, she lays her head on pillows, and has started pulling her high chair out and signing "eat" when she's hungry.  She sits very still for her nasal spray in the morning, can pretty much take her thyroid pill without any liquid at all, and is getting much better with her nebulizer treatments.

She still has no new sounds to report but our big news of the week was that she took six steps independently at school this past Thursday! Still only one or two occasionally at home, but we'll take what we can get.  In the meantime she's getting stronger and much more confident in her ability to stand without support for longer periods of time.

So I think that's everything I can think of to relate about Tera reaching 18 months.  It's hard to believe it's been a year and a half.  On the one hand it seems like we've had her for so much longer and on the other hand I can't believe she's already half way through this year and soon she'll be two! We're so incredibly proud of everything she's done so far and can't wait to see what next month brings.  Do I dare hope for a "mama"?

Thursday, August 23, 2012

Encouragment

I've shared a few stories the past few days about people with DS doing things many people assume they'd never be able to do; myself included.  One of those first of many thoughts that followed Tera's diagnosis was of all the things she wouldn't be able to do, or so I thought.  I have said repeatedly that Tom and I came to accept Tera's situation fairly quickly, but that doesn't mean those horrible thoughts about her abilities didn't immediately come to mind when the doctor uttered the words "Down Syndrome".   And they reared their ugly heads again in the months following while I was home alone with her and my thoughts.  But one of the wonderful things about technology, is that it gives you so much more access to information than what existed even ten years ago.  I might not have had the opportunity to read and then share these two amazing stories and be reassured that my little girl will not be limited in any way if she really wants something.

I'll include the links here in case anyone reading isn't on Facebook (where I shared them initially).
Article 1
Article 2
It's one of those things that I just really like seeing because it reminds me that while she may struggle with some things more, and what may come easily to most people she might have to work harder for, if she really wants something, it's hers for the taking.

And in light of these two stories I will share the best news of our day today.  Last weekend while visiting with her buddy Harper, Tera took one or two steps towards her and I just about jumped up with excitement.  I believe I can say they were the first steps I witnessed her take without holding onto something.  She's done one or two steps here and there this week, but today her teacher at school informed me she took six steps unassisted! I don't know that I'll enter it into her baby book just yet, I'll wait until I see it a few more times when I know she's doing it purposefully, but we are very excited nonetheless.


Sunday, August 19, 2012

Different (and then a sidetrack)

Being different is something we've joked about with Tera since before she was born, but really one of the things I'm most grateful to my husband for is showing me that different is okay.  I spent most of my life trying to be like everyone else and not really feeling like I fit in all the time.  I had lots of friends, but none of them really listened to the music I did, I had a weird sense of humor, and though I never in any way felt alienated, it wasn't until I was with Tom that I really let me be me (which my mom may or may not be as grateful for).  

The reason I'm thinking of all of this is because while at the ComiCon last weekend (the Comic Book convention for those not in the know, though we don't actually go for the comic books) we picked up a few new prints for the house.  That would make roughly ten that we've bought in total over the years from this event (thirteen if you include three in Tera's room that we ordered after we went when I was pregnant) and they're not exactly what you would call "typical" prints or pieces of art.  See there's a whole part of the convention that features artists of all types and since Tom and I have a bit of an eclectic, all right downright odd, style of decorating, we've found lots of things that we really like there.  This time through we bought two Nightmare Before Christmas prints, a portrait of Frankenstein, and two zombies dancing together.  The Frankenstein and one of the Nightmare prints were supposed to be for Halloween, one Nightmare print was for Christmas, and the two zombies were for Valentine's Day (that was my idea by the way, they looked in love).  We were going to just get two frames and hang them up in place of two other pictures we have, but just for those specific holidays.  Well, the more Tom thought about it the more he liked the idea of leaving the Frankenstein picture up all the time so I said okay.  

To put this in perspective for those of you who may not know what our house looks like let me describe it.  Our bedroom has three pinup pictures in it and my bathroom upstairs has three also.  I'm guessing without knowing any better, a stranger walking in might assume a single male lived here, but in fact I really like pinups.  I'm a huge Bettie Page fan and I really just like the style and class of pinups.  I love the 50's era style and none of the pictures show anything the average bikini doesn't and so we own several pictures of them.  Tera's room is all Star Wars as I've described before and our workout room is host to a portion of Tom's Star Wars collection.  Our kitchen is pretty normal except for the picture above our stove top that is of three onions with faces being cut and blood coming out.  I found this one hilarious and think it's perfect for the kitchen.  Then to our living room.  We had a space above our couch that was in desperate need of something and it took us months of searching a website called redbubble.com to find what we thought fit there.  Of course what we decided on was a picture of Dorothy's legs from the Wizard of Oz wearing fishnet stockings and a trickle of blood going down her leg.  The other two pictures are ones we bought in Greece and though we love them, they're not quite fitting in as much recently.  

The other four prints we bought a few years back are a little more graphic, though not inappropriate and with a little more of a comic book style to them, and one will probably go in Tom's bathroom downstairs and one will go in my office.  The only problem I have with some of the pictures in our house is though I love them and I think they fit our style well, I'm still not completely comfortable enough with myself to not worry about what other people think when they come in.   This is kind of a big revelation for me and I really wish I didn't feel that way because it is our house and we decorate it in a style that makes us happy, but that doesn't mean when other people come in they don't think it's weird or too graphic.  I have of course thought about what Tera will think when she's older, but in my opinion if it's always been there, it won't seem odd to her. 

So I guess my whole point to this post is that while I've come a long way in my comfort level with myself, I'm not completely there yet.  My husband on the other hand would just say to hell with anyone who doesn't like it or is offended by it; they don't have to come here.  I choose to hope that anyone who comes to our house feels welcomed by us and understands that it is our style and maybe even compliments the fact that it fits us perfectly.  

I also hope that it helps to illustrate to Tera that different is okay.  You don't have to be the same as everyone else to be just as important as everyone else.  Though I'm not a huge proponent of mushy messages in my classroom, I actually ordered new posters this year, inspired by my daughter, to encourage my students to be more open minded about other people.  I also am pushing the message about personal responsibility and have really spent more time and energy in the past few years trying to encourage the idea that my classroom isn't just about math; I hope they take away some ideas about life and how it really is.  Things don't just always work out for you because you're entitled to it. Shit happens and you have to be able to deal with it.  Many of my students have had more happen to them in their 15 or 16 years of existence than many other people have to deal with in a lifetime.  When asked why I teach where I do, that's the answer.  To show them that they matter just as much as anyone else.  And for the students who don't know anyone different, I hope that when I tell them about Tera, it gives them some perspective and makes them think twice about the language they choose to use and the way they treat other people.  I hope that someday they come across someone with DS and say hi to them when they might otherwise not have and maybe share that they had a teacher whose daughter has DS.  

I've completely gone off track from where I started but that's how thoughts go sometimes...

My constant source of inspiration

Thursday, August 16, 2012

One week left...

I've been off the blogging grid for almost a week now and it hasn't been because I wanted to be, just that crazy thing called life.  I keep thinking I should have more time during the summer since that pesky work thing isn't in my way, but strangely enough it hasn't quite worked out that way.  You see my main goal in the summer is to make sure that our weekends as a family are more enjoyable and less task oriented.  So during the weeks I try and get as many of those "tasks" done as possible.  It still seems as though I should be able to get more done, but no matter how many times I analyze the situation, there's just usually not enough time in the day.  Right now I'm in crunch mode trying to get any of those last minute things done before I go back to work in a week and every time I think I've got all I need to do written down on my ever popular lists, something else occurs to me.

I've been trying to get all of Tera's therapies scheduled for the first month I'm back and now that I'm able to share the news, Tom has a new job (still at AT&T but a new position) so we're unsure how that will affect his availability at home.  Add to that that I finally had to come to grips with the fact that my beautiful daughter has destroyed my back and I can no longer put off seeing a chiropractor which I finally did today.  The good news is I feel much better, the bad news is that if that I want to keep feeling better I have to go in twice a week for three weeks and then regularly after that. Oh yeah, and that whole working out thing.  Tom and I have been really good this week and both of us are so conscious of how much better we're feeling.  It's always hard to gather up the energy to do it and not do one of the other million things we could be doing instead, but it's helping.  He has terrible hip problems but his leg workouts are really helping him move better and he has far less pain and discomfort.  And I finally just decided to try a new program so as of this week I've completed four days of Turbo Fire.  I have to be completely honest, this is not the type of workout I generally enjoy because there is so much coordination involved in it; of which I have very little (there's a reason I always chose lifting).  There has definitely been a period of time during each workout this week when I have gotten incredibly frustrated and wanted to stop because I couldn't keep up (not physically, but more directionally), but with some pauses, I finished each one.  Even the two days when I had to finish with Tera hanging onto my legs I did finish. I don't really ever feel confident while I'm doing the workouts, but I've felt really good afterwards.  Again, the really hard part will be trying to fit all of this in after 3:30 each day.

So in this last week I will enjoy the beautifully cooler weather we're supposed to have and my last few full days with my favorite little person.  As difficult as some of my days have been with her (yesterday being one of them), I'm going to miss my one-on-one time with her and her daily changes, both good and bad.  I'm going to miss our morning time when she actually sometimes sits with me and she plays a game or watches her Sesame Street videos on my phone and has her milk.  I'll miss her falling asleep in my arms while rocking her before nap time and just studying her, holding her hands and her feet, and being amazed at how small she still is and yet revelling in how much she's grown.  I will miss having the time with her on the floor when she hands me a book, signs please, and then crawls into my lap so I can read it to her (our new favorite trick of hers by the way).  I know I will still have these times on the weekends, but it still makes it hard to go back.

And I suppose this means I should really get started on finishing that Christmas stocking of hers...
From the beginning of the summer, still the only time we've used the pool...

Wednesday, August 8, 2012

Guilt

There really should be a study done to find out how many hours parents spend trying to get their children to sleep between birth and eighteen.  I'm speaking from frustration of course right now, and to be honest, I have one of the easy kids! One of the other studies that should be done is how many hours parents (I'm guessing more moms than dads but I don't want to stereotype) spend feeling guilty.  About anything.  I've always been someone who feels guilty about something and it's hardly ever warranted; I guess it's just another charming aspect of my personality. But since Tera was born, it's even worse.  I don't even know what I feel guilty about, it's fleeting thoughts here and there and sometimes, like this afternoon, it's a crying type of guilt that mostly came from being frustrated, but made me cry nonetheless.

The fact that she fought her nap this afternoon and the reason I was so frustrated was mostly my fault to begin with because she was in and out of the car this morning and got little 20 minute naps in here and there. But I also knew she was tired and that if she didn't nap, the rest of the evening would be miserable.  I did finally get her down, but it wasn't until 3:30 and then I had to wake her up a little after five, which is probably part of the reason bedtime wasn't as smooth as it has been.  What I was feeling guilty for today was the fact that it really was my fault that she wouldn't sleep, but I've been thinking about a lot of things lately and I think that, on top of not sleeping well most nights, is wearing me down and I was just tired.

What made me feel the worst was knowing that she's in daycare two days a week; I don't even have her at home with me the whole time, and I still can't get a grip.  Most of the rest of my friends have their kids all the time and while I know they all have their moments like me, they seem to manage.  And of course in my rational moments I know that I too could handle it, I did last summer, and that the main reason for her being in daycare is so that she doesn't get out of her routine (which I'm really glad I did because she seems to be experiencing more separation anxiety lately), but rational thoughts aren't part of guilt.

I also feel guilty about not doing more stuff with her since I've been home. I kind of imagined being able to do more outings or visiting, but several things seem to have thwarted that plan.  One, the weather though beautiful today has not been agreeable to most things outdoors.  Two, now that she's down to one nap, that pretty much eliminates anything between the hours of 11 and 2.  And three, she still can't walk by herself and that really does limit some of what we can do.  It's hard to hold her the whole time at the spray park and she doesn't like being confined to a stroller and then having to get back in the car again right away so that makes some of those types of trips difficult as well.

And then add to all of that the anxiety I'm having about trying to get things done before I go back to work and it's no wonder I have about one breakdown a week.  I finally stumbled upon an idea that might work for me, someone just has to invent it.  I need a DVR for my thoughts.  That way anytime I think of something it's recorded and I can just go back at the end of the day and make sure I didn't forget anything.  I'm really quite proud of my idea, just not smart enough to make it happen.  So if someone could get on that, I'd really appreciate it.  When is Apple going to figure that out? Can I buy an app that does it?

On a totally different note, the checkup with the cardiologist yesterday went fine.  The second hole still isn't closed but he told us to expect this one to take a while.  I did ask if there was a point in time when they would consider it taking too long and discuss surgery, but he said that wouldn't be until she was 18.  So good news there, we go back in six months, and then after she's two we should just be down to one visit a year.

What would absolutely make my week is if I slept great tonight and there were fabulous thunderstorms tomorrow but only after I get Tera into daycare and it was cooler out.  I already have coffee planned with my favorite sister-in-law and beautiful daughter in the afternoon, Tom's off on Friday and we have few plans this weekend besides hopefully getting to enjoy a fire in some wonderfully cooler weather that requires a snuggly sweater.  Just saying that would all be great.



Monday, August 6, 2012

Eighteen month review update

We had Tera's 18 month review today.  Since it's only a mid-year review, it wasn't quite as detailed as it will be in February when we have her two year review.  It's hard to believe we've already done this three times and I'm so proud of our girl.  At a mid-year review, we aren't given her measured age by the different therapists but her speech therapist and developmental therapist gave us where they think she is anyway.  At Tera's one year review she showed the most delay in speech and since this is still her weakest area, it's still where she's mostly delayed.  Her ST and DT both estimate her to be around the ten month range mostly because she still hasn't reached the milestone of being able to connect familiar names with familiar people.  For example, if I ask Tera where her dad is, she's not looking for Tom.  If someone says "mommy" to her, she's not looking for me.  She does however connect "kitty" with Feyla, so we know where her priorities are.  This is a skill in the six to nine month range, however, she is also exhibiting some skills in the twelve to fifteen month range which is why her therapists place her in approximately the ten month range.  One of the other things holding her back is the fact that while she's incredibly vocal, she still only really has two syllables and says "uh-oh".  

We've been told over and over again not to place too much emphasis or worry on age ranges because it's something they have to do to justify her progress to the state, but while we don't worry too much about it, it is always interesting to me to hear where they think she is developmentally.  One of the things that helps me accept the fact that she's progressing slowly in speech is the fact that her signing is really increasing.  It took us months and months of practicing to get her to sign and understand "more" and her other signs have come in a little quicker, but last week she learned "please" in under and hour!  I can handle her delay in vocal speech (except for not hearing "mama") if she can at least communicate to us what she needs and wants.

During these six month reviews we discuss what her current outcomes/goals are and whether or not they need to be altered or rewritten completely.  Then under each outcome is a list of strategies that Tom and I and her therapists will work on for the next six months.  I'm very happy to say that most of her gross motor goals have already been met.  We wanted her to be crawling, pulling to stand, crawling up stairs, and a few other minor things that she's done for a while and we can very confidently cross all of them off!  We were all very proud to be able to update that goal and by her two year review in February we're hoping we can cross independent standing and walking off the new list also.  

I have a renewed sense of purpose and am also hoping in the next few weeks I can hear the sound that will have so much power over me.  In the meantime, tomorrow we see the cardiologist...
My inspiration

Sunday, August 5, 2012

Pity party for 1

Today is one of those days I'm just going to come out and say "This Sucks."

The weekend was great.  We had no plans and it was nice to finally not be running all over the place.  Last night Tera stayed with Tom's parents so we could get a few things done at home that are harder with her here and to also maybe catch up on some sleep.  Today was fine too, but at some point I started thinking about this coming and week and I began to realize I wasn't looking forward to it.  Tera has therapy tomorrow morning, her 18 month review tomorrow afternoon, therapy at school on Tuesday and a check up with her cardiologist Tuesday afternoon, therapy Wednesday morning, and therapy Friday morning.  A whole lot of fun we have planned.

The other realization I had today that wasn't helping my mood was her list of medications I have to remember.  I know I've listed this before but it's a thyroid pill and a two sprays of Nasonex every morning (the Nasonex has to be after I suction her nose first).  At dinner we have to giver her yogurt with a probiotic, flax seed, and a multivitamin to help with her stomach problems.  Then after dinner we have to administer her nebulizer which means holding a mask to her face and holding her arms down so she can't fight us for about eight minutes.  We can usually get about five minutes total without her fighting us and the rest of the time we're trying to hold the mask on a squirmy kid.  Add to this five drops in each ear twice a day since last Wednesday to help prevent infection after her tubes.  She hates the ear drops and she's not too fond of the nebulizer either so knowing both of those things needed to be done this afternoon kind of kick started this pity party for me.

Basically I'm burned out Tera's "extra" stuff.  It also occurred to me last week that Tera has thus far accumulated four hospital bracelets in her 17 months.  I understand of course that this could be far worse.  I am still so incredibly thankful every single day that while Tera's heart isn't perfectly healthy, she's never been in danger of needing surgery and that so many other kids with DS do.

I HATE when my girl has to have wires on her :(
This is all going to sound a little odd after I just posted a beautiful story about why DS shouldn't be eradicated with the introduction and continued use of the new prenatal DS test, but I'm always honest here and it just sucks to me today.  It probably also didn't help that Tera wasn't quite herself today, a little clingier, tired, and more subdued than usual all of which I can handle as long as it doesn't mean she's getting sick again.  I did the usual check for any new teeth and I can't feel any so I'm just hoping it was an off day for her; Tom and I were also exhausted so maybe it was just a general feeling in our little family.

Tomorrow is Tera's review and we'll see what all her therapists have to say about her progress.  I'm hoping it makes me feel a little better about all of this.


A much better way to spend my time with her :)

Thursday, August 2, 2012

Warning: Very high cry potential

So Tera's tube procedure went well and she now has two new tubes that will hopefully afford me the distinct privilege of hearing her utter the sound I've so desperately been longing to hear: mama.  But on that positive note I've learned of two different things that have made me put so many things in perspective these past couple days and I'll warn again that this may be a tear-jerker, but it needs to be shared.

Late last week we learned through various posts on Facebook that a little boy that attends Gigi's (though not the McHenry Playhouse) was very sick and at Children's Hospital in Chicago.  He had already crashed one time that day and they were requesting prayers and thoughts for him and his parents.  I'm actually friends with his mom on Facebook and though I've never quite figured out how she found me, she's been someone who has commented and/or liked various things on Tera's page from time to time.  I sent her a message on Facebook letting her know we would be at Children's on Wednesday if they needed anything and with all that was going on with her son, I wasn't surprised I didn't hear back from her.  It wasn't until I got home Wednesday and was looking through Facebook later that afternoon while Tera was sleeping that I learned her son has passed away that morning at Children's.  I read the information from more than one source and found myself incredibly emotional very quickly.  Here I had just brought home my baby from that same hospital and she was doing fine and the thought that they had lost their son, just broke my heart and reminded me once again how fragile life can be.  It was also incredibly scary to think that so many of the complications that DS can bring on can be life-threatening.  I don't know all the details of what happened, but it doesn't change the fact that someone in my community lost their child and I just cried off and on that afternoon thinking about it.  When Tera woke up I just held her so tight and then cried again.  The post from the McHenry Playhouse said to make sure you hug your children everyday because you never know when it might be your last time and I made extra sure to do that (although one thing Tera is never ever lacking is hugs and kisses from her mom).  I know this is going to make many people reading this cry and for that I apologize; it's not my intent to be sad, but do take those words to heart and remember that few things, if any, are more important than spending time, quality or not, with your loved ones.  Since having Tera I've feared some things more and some things less.  I don't fear time management any more because it will happen somehow and if not, there are more important things to worry about.  I fear death, anyone's, more.  I can't imagine living my life without the people I have in it and I'm terrified to miss out on anybody else's.

On top of reading about this yesterday, today I read a post in my forum from a mom who found out she has not only one child with a chromosomal abnormality (DS), but two and her second one is so rare they don't even have a name for it.  One reason this struck so close to home for me was that as we get closer to thinking about a 2nd baby (see my other post about a sequel), one of the things that comforts me is not having to go through all of this again.  But then I read about something like this and I'm reminded that that isn't necessarily guaranteed.  Anything can happen and while we hope and assume that my next pregnancy is completely uneventful and that any future child is born healthy, as we've already found out, things don't always work out that way.  After reading her blog post where she tells of discovering this news, I realized she handled everything very much in the way I imagine we would.  It doesn't make the possibility any easier to fathom, but it does make me realize that we would in fact handle it just like we did the first time.  Still, again, the fear is there and I don't want to live my life in fear.

I guess what I can say I've gotten from all of this is to try and remember above all else that Tera is a child first and that if things get too crazy, whether it's from therapy, sickness, bills, work, or anything else, all that really matters is that we're a family and we love each other like crazy.  I need to remember that she's more important than laundry, errands, cleaning and whatever else takes up my time because without her and Tom, none of it matters.  I also need to be reminded that whatever happens, we can handle.  It may not always feel like we can, but we will and not because we're only given what we can handle (because I don't believe that) but because together we can take on anything and anyone.  I hope that I've ended this on a more positive note; now go hug someone :)

No matter what right now, she's smiling and you should be too.