Sunday, December 30, 2012

Things I forgot last time

Just as previously posted, almost as soon as I finished my last post I remembered two other things I had wanted to include, and they were kind of big things too.  And then as so often is the case for me, as much as I would have loved to sit right back down again and write about them, right now is the first time since then that I've had time.

The first thing that I forgot, and really shouldn't have, is that the 26th marked Tera's 22nd month.  In a mere two months my little girl will be two and at least I can say this year didn't seem to go by nearly as fast as the first one (and sometimes it was just downright slow).  It's kind of hard for me to differentiate her accomplishments from one month to the next because they seem more gradual and less obvious.  Just to be clear, I'm still waiting for a first word and in fair warning, when it does happen, it will be a post all by itself.  She is adding new signs every week it seems and is using them in combinations.  She also seems to finally be able to recognize people in pictures and by name.  At her last review, she still hadn't reached this six to nine month milestone, but the more we practice and test her, the more I'm convinced she knows most of the members of the immediate family by name and completely selfishly, I'm beyond thrilled every single time she correctly looks for and finds "Daddy" and "Mommy".

She's a pretty solid walker now, though she definitely stumbles regularly.  Her most recent spill resulted in a nasty looking gash and corresponding black eye right in time for Christmas.  She was just fitted for her orthotics this past Wednesday which will hopefully help her gain stability and confidence while preventing future ankle, knee, and hip problems due to her feet rolling in.  I have to admit though, that while I'm excited to see how much better she will be when she has them, a small part of me is resentful of the fact that she has to wear them at all.  She can't wear just any cute shoes, she has to wear a specific type of gym shoe that will not only support her, but will also accommodate her orthotics.  We've been on a fairly extensive search already trying to find ones that will work; and it's not the cost because the doctor assured us they do not have to be expensive shoes, it's just a matter of trying to find ones that will work.

And then there's the little issue of her having a streak of the devil.  I would never say she's a bad child because that's not it, she's just into EVERYTHING.  And to all of the people who are saying to themselves right now that this is what I get for wanting her to walk, I will say that this has nothing to do with her added mobility and everything to do with her personality.  I know for a fact that even if she couldn't walk right now, she'd be crawling or rolling her way into most of the same things.  Having her home for the past few days has completely exhausted Tom and I.  We actually cleaned out my office to make it a playroom for her and we've still spent hours troubleshooting all the new ways she's finding to get into trouble.  She has a lot of curiosity, a lot of determination, a lot of stubbornness, a lot of defiance, and very little fear or recognition of the words "no", "stop", and "don't do that".

After weeks of trying to ensure she doesn't inflict the same kind of damage to my Christmas village as Godzilla does to Japanese villages, I finally gave in today and packed it up and we took down the tree.  Which leads to my second forgotten topic: the post Christmas letdown I feel every year.

I, along with many people, consider Christmas a favorite time of the year.  One of my absolute favorite things about it every year, is having our tree lights on every night.  Before Tera was born and I had some downtime, I used to just love to sit down with all the other lights turned off, just the tree lights turned on, and just look at the tree.  It reminded me of past Christmases as a kid, Christmases spent with people who are no longer here to celebrate with, and of what's important to me.  The only problem with our tree every year is that it, along with the board we use to display my village, takes up quite a bit of room and by the end of the season, things are feeling cramped.  This year we added to that the complication of Tera constantly terrorizing the set up and an influx of new toys and I had to admit today that it was time to come down.  I typically have mixed emotions about the tree and I always feel a little sad when Christmas is over.  There's just so much anticipation and planning that goes along with the holidays and when it's all over, I'm left with a feeling of, "ok, now what?".  It doesn't typically last very long; usually by the time my house is back in order and we actually have time to do things and relax without having plans every minute of the day, I'm over it and move on, but these past few days have been the height of my letdown.

What does make it better is being able to spend time with my family and friends.  Tom and Tera and I have had lots of time together, Tom and I actually went and saw a movie together, we've spent time with our families and some of our closest friends and while I wasn't able to get as much done, it was much more quality time spent and is always a good reality check and reminder to appreciate what's truly important.  Our friends and family have been there for us in the good times and the bad and we need that time with them.

I'm not really one for New Year's resolutions, but if there was one I had to state it's to work on making memories with my family and friends for ourselves and for Tera.  She's getting old enough to enjoy things and people and I want her to be able to look back when she's older and know that we had fun as a family.  Tonight we built a fort out of the pillows from our couch and tomorrow we'll continue the tradition of bowling on New Year's Eve with our second family.  I have so many fond memories of traditions we had while I was growing up and even when those traditions changed or evolved, they remained special to me and I want that for my own family and for my own daughter.

Happy New Year to you all.  I appreciate your support and comments always and wish you and your families and friends a safe, healthy, and enjoyable 2013.  Now how long will it take me to remember that when I write checks?

Wednesday, December 26, 2012

Christmas thoughts

I've been on a bit of a hiatus and to be honest, it was partially due to writer's block.  There were several times I wanted to post, but just couldn't quite figure out what I wanted to say.  But now following one of my favorite holidays, I've been dying to write a post and couldn't find the time.  I don't want this to be just a recap of our holiday experience, but I do want to share some of the emotions of the past few days.

Unfortunately, I came down with a bug of some sort on the last Friday of work.  Fortunately we make it a pretty laid back day and so I muddled through, but I was starting to get stressed about getting sick for Christmas.  This shouldn't have been the end of the world for me; I knew no matter what it wasn't going to be serious so even if it was an inconvenience, or worst case, I couldn't make it to some of our festivities, I would be fine and there would be other Christmases.  This of course brought me back to several years ago when my sister became very, very, dangerously ill just before Christmas and our family spent several hours on Christmas Eve with her in the ICU and how all I could think was that I didn't care about Christmas at all that year, I just wanted her better and home.  It's a time our family can joke about now, but at that time, it really put things in perspective for us and I always try and keep that perspective around the holidays.

The main reason I was so worried about being sick was because I didn't want to miss anything with Tera.  If there's one thing I've learned since becoming a parent, it's that the holidays bring on a whole new meaning.  In the case of our little Energizer Bunny, it means we're both a little more exhausted at family functions because we have to alternate who's going to chase after her.  But mostly, it's Christmas morning that has gotten even better.  I'll admit I've never been able to sleep in on Christmas; I'm always up early and trying to wait until an appropriate time to wake Tom up so we can go downstairs and open gifts.  I love turning on the tree when it's still dark outside, exchanging gifts, trying to capture the looks of surprise with the camera, and sharing our stories about our gift purchasing experiences.  But last year and this year it was made so much more memorable when the day was started by hearing that little voice from the other room.  This Christmas morning I was already awake (following an incredibly crappy night of sleep due to my inability to breathe) and anxiously awaiting Tera's waking sounds.  She of course took this opportunity (of all the days) to sleep until 7! I walked into her room only to be greeted by one very smiley, happy girl.  I got a hug and kisses and it almost seemed as if she knew what was going on.  I carried her back to our bedroom where she greeted Daddy with kisses and soon enough we headed downstairs.

Last year she did pretty well with the unwrapping process, but this year she was just completely enthralled by it.  If Tom or I opened a gift from the each other, she had to help unwrap it.  Pretty soon our living room was a tornado of paper, boxes, toys, and clothes and it was perfect.  Tom's parents were due to join us shortly after so we started cleaning a bit up before the next wave and Tera took a break to have some breakfast and then Skype with one of her aunts.  The amazing thing about technology, is that even in Charlotte, my sister can watch Tera unwrap her gifts from her.

The rest of the day was a whirlwind of food and gifts and despite only being able to nap in two short spurts, Tera did great. So here's what I'm taking from Christmas this year.  1.) My husband never ceases to amaze me.  The thoughtfulness and love that he consistently puts into my gifts reminds me how incredibly lucky I am to have him.  2.) Each year Christmas will become more and more memorable as Tera understands more about what is going on and I can't wait to make memories with her that we will both cherish.  3.) Our family and friends also never cease to amaze me.  The gifts are one thing, but the thought that went into them and just the reactions on THEIR faces when she opened her gifts were priceless.  I'm still always taken aback when I see how much that little girl is loved, and how much love she inspires.  4.) We clearly need a bigger house.

I don't know that I got everything out that I wanted to, but I guess that's the price I pay when I have thoughts percolating in my head for days and I don't get them out.  Maybe as I remember other things I wanted to include, I'll write them down and I'll have some material for the next few days.  Tomorrow Tera will be at daycare and Tom will be at work so given an entire day of personal reflection, I'm sure I'll have more than enough.

Friday, December 14, 2012

Complete sadness

I went back and forth in my mind today about whether to write tonight about what's happened today, but I feel I must get this out just for my own sake.  As my own child sleeps upstairs and I sit in front of my beautiful tree in the safety of my home, I simply can't fathom what the families of those lost children and other adults must be experiencing.  When you send your child off to school in the morning you always expect that you'll be able to see them again at the end of the day and no one can prepare for when that doesn't happen.  I have cried today and tear up even as I write this.  I can't remember the last time I felt so sad.  I wanted desperately to talk to someone on my way home, but knew there was no way I could keep my composure if I did.  I wanted to call my mom and to tell her I loved her because I knew I couldn't say it to my own daughter at that moment, but of almost anyone, I knew for sure I wouldn't be able to physically speak when she answered the phone.  I picked Tera up from daycare and didn't want to let her go.

I feel so lost as to how to express how I feel because no one can explain this.  I've tried comparing this to other tragedies, but somehow this is different.  As an educator who started my career after Columbine and in the midst of so many other similar tragedies, I always think about how I would handle something like this and wonder how we are lucky enough to have escaped it when others haven't.

I wasn't a huge fan of people telling me that everything happens for a reason after Tera was born and diagnosed, but I really don't think I can handle anybody saying that about today.  This didn't happen for any reason other than one of the sickest people to walk this earth made it happen.  I won't hypothesize on his motive or stand on a soap box and try to explain why this might have happened.  I have my opinions, but what I think doesn't matter.  What matters is that this country comes together as it has so many times before to support and grieve with those families who lost a loved one today.

In the hours following the news of the shooting I was checking Facebook to see what was being posted and was already disgusted by the fact that friends' innocent comments about sending love and prayers were being hijacked by people getting into arguments about gun control and the state of society.  There is a time and place for things and today is definitely not it.  On the flip side of things, I also felt a sense of unity with all the people sharing their condolences for the families of the victims.  Websites, bands, and companies all stopped the now seemingly less important posts that usually go up on Facebook and instead devoted that time and space to showing their support for the community affected by this tragedy.

In the wake of such things happening I think everyone reevaluates what they should do differently to ensure similar things don't happen to them.  I do the same thing, but I also usually come to the conclusion that one can only do so much without giving up your life and freedom completely.  The hard part to justify is that this isn't something that had to happen.  Natural disasters like tornadoes, hurricanes, and floods are things no one has control over.  They're going to happen and no one can stop them.  But this didn't have to happen.  Someone made a choice and now people, our country, our society, but most importantly those families and that community will have to forever live with the consequences of that choice and somehow try and pick up the pieces.  I'm sorry that I just can't end this on a positive note tonight.  As so many people have already said, hug your kids, your family, your friends and tell them you love them.  It will never be a wasted moment.

Wednesday, December 5, 2012

Ah yes, parenting...

These next few weeks are going to be hard to get posts in, but I’m determined to use this for part of the reason I intended: therapeutic purposes and sharing memories.

Being a parent is hard.  No matter what your child is like, every parent has their struggles and in these past 21 months I've learned that I will be able to overcome the struggles, but that it takes time, patience, and some reminders of why I love this most difficult of roles.  After nearly three weeks of pneumonia Tera has returned to her smiley, silly self and we couldn't be happier.  This past Sunday was unseasonably warm with temperatures near 70 degrees for the first weekend in December and so Tom suggested we take Tera to the park and see if her BFF wanted to meet up with us.   This was the first time we've taken her to the park since she’s been able to walk and I can’t believe how much fun she had and how amazing it was to watch her be a little kid.  She ran all over the place, climbed up the steps, went down the slides, swung on the swings, and played with her friend. 

That afternoon after a rough wake up from her nap, we decided to try another park near our house and she did even better.  This park was even more suitable to her age and abilities and all her playing was exactly what they want her to be doing as therapy strategies.  She even managed to climb UP the slide completely unassisted and completely amazed her dad and I.  The fresh air and time as a family was something we all needed and gave us a break from all stress of her being sick and just the craziness of our daily lives.  It was true happiness watching her be so “normal”.

Unfortunately these past few nights have thrown us into the depths of sleep deprivation as she spent Sunday night and Monday waking up more than four times during the night.  Tuesday night she only woke up once or twice, but then was completely awake at 4:30 this morning. 

To make matters worse, I feel like I might be coming down with something, but that could just be allergies and sheer exhaustion from the past few nights.  And see here is where the other difficulty in parenting lies; developing a thick skin.  Yesterday I spent most of the day feeling crappy and instead of working out like I had planned, just came home and got some stuff done around the house.  When Tom came home with Tera, I just wanted to get a kiss and a smile from my baby, but she was having none of it, only wanted to be held by her dad, and kept trying to hit me when I asked for a kiss.  Really kid? She was completely cranky for the next hour, to the point of having to cut her PT session short, ate some dinner and was finally a little better after that (I did eventually get a few kisses). 

Don’t get me wrong, I know she’s only one, but it’s still not easy to feel better when your own child would rather hit you, than kiss you and you clearly have no way of reasoning with her.  This would be one of those times I need to tell myself to suck it up buttercup and just move on.  

She did have a much better evening tonight and while rocking her she laid her head right on my chest as she drifted off to sleep and I once again fell head over heels in love with her.  And as much as I love her, I'm really hoping I don't see that sweet face again until 6:00 tomorrow morning.  
We were trying desperately to get a picture to use for our Christmas card and she was her usual active self.

Wednesday, November 28, 2012

Have I somehow angered Karma?

I have to say, this year is not winding down well.

Here's the good news: Tera had a follow up appointment tonight to see how her pneumonia is clearing up and as of today, her lungs sound clear.  It doesn't mean that it's gone; in fact the still lingering cough indicates it's definitely not yet, but it's on its way and the doctor feels confident enough to not subject Tera to another x-ray.

Here's the bad news: at the same time that I was with Tera at the doctor for her pneumonia, Tom was at the vet with the cat to find out why she hasn't been eating and doesn't seem to have gotten any better since she was last there a few weeks ago.  When we took her in about three weeks ago they determined she had a urinary tract infection and gave her an antibiotic.  Based on her kidney history, they also did a blood work up and urinalysis and had told us that her liver and kidney functions were normal.  At the time we felt a lot better about the situation and were relieved it was only an infection.  But as time has gone on, she's actually eating less, and last night just peed in the middle of Tera's bedroom floor which she has never done (not carpeted) and we knew something was wrong.  When Tom came home and handed me a Kleenex before delivering the news, I tried to prepare myself.

The doctor says it's either cancer or a bad infection, but seems to be leaning more towards cancer.  She's lost two pounds in three weeks (she was only 8lbs to start) and with her lack of eating it's not good news.  We can have an x-ray done to see if they can narrow it down to either possibility but if it's an infection they would do antibiotics and if it's cancer they would give her a steroid.  The doctor did both today to see if either one helps at all and we just to have to keep an eye on her weight.  If she loses more, it's more than likely cancer and at 13 years old, we're just going to have to make another hard decision when the time comes.

I've been in disbelief all evening.  Not necessarily because of the news; she is 13 and she's had a history of kidney problems since she was a kitten and she's really not been herself the past few days, but because I'm not really sure how we're supposed to be able to make this type of decision twice in one year.  Really, twice in six months.  And then my heart just hurts to know our little kitty, our first little furball together, is probably in pain or at the very least, uncomfortable.

I suppose all we can do is try and keep her comfortable and show her that she is loved and then hope for the best.

Monday, November 26, 2012

Update and 21 months!

I've been trying to find the time to post an update to our craziness and today is the first time I've had.  So far, in Tera’s first 21 months of life (yes it’s 21 months today!) she’s had pneumonia three times.  The first time was pretty severe: both lungs and her doctor couldn't believe that she was as happy and seemingly unaffected as she was.  The second time she ended up in the hospital because her breathing was so labored.  This third time was supposed to be the most minor case she’s had, and yet it seems to have lasted the longest and caused the most discomfort, exhaustion, and stress on all of us.  At one point during the past three weeks, for almost a week, Tera was on five different medications: two antibiotics, two nebulizer treatments, and an oral steroid.  These messed with her sleep, her stomach, but worst of all, her temperament.  Our usually happy, easy going girl was whiny, uncomfortable, unhappy, and just generally miserable. 

We thought we had been having a really fun time with all of this, and the three doctor visits and one chest x-ray, but then things got even more exciting when Tom and I both managed to get what we think was food poisoning sometime last Monday.  I ended up having to leave work halfway through the day on Monday, Tom got sick early Tuesday, and we both dragged our still nauseous, tired bodies to work on Tuesday and hoped for the best. 

Fortunately Wednesday we were both off of work and we dropped Tera off at daycare to get some much task-completion time.  I was moving a little slower than usual and still didn't feel 100%, but we managed to get quite a bit done and felt back to ourselves by Thursday morning. 

Unfortunately Tera was not feeling herself by Thursday afternoon still and spent the majority of the her time with the family during Thanksgiving dinner whining, unhappy, and tired.  We put her to bed early and hoped for the best.  While she slept well, the best that I had hoped for turned into her waking up at 4:50am on Friday, but happy.  And that seems to have been the turning point in this whole fiasco.  She had finally finished her oral steroid (which we think was causing the biggest change in her temperament) and she was back to the little girl who made us smile and laugh. 

This is a traditionally very busy weekend for us and our family, but I was able to do a lot that I wanted to.  I finished a lot of chores I've been wanting to get to, we cut down our Christmas tree, put out our Christmas decorations, and finally decorated our tree last night.  And here is where I need to credit my amazing husband.  While I love my house, there are certain things I wish were different; one of these things is our entryway.  Our garage was added after the house was built and so we don’t really have an entryway, we have a front door.  Since I've become obsessed with Pinterest I see all these beautiful entryways that people have decorated for the holidays.  Tom is aware of this desire of mine and has done everything he could this season to make our “front door area” into more of what I've been hoping it could be.  The man is incredibly skilled at being able to takes my hopes and turn them into realities and for that and a thousand other things, I love him so much.

And finally (yes I know this is long but I haven’t been able to write!) my beautiful girl is 21 months today.  I didn't even get a chance to do updates at 20 months so I’m really behind and I don’t even know where to start! 

She is walking all of the time now, pretty much no crawling at all anymore.  She still looks a little wobbly at times, but she is working so hard at it.  She loves being able to walk on her own into the house and down the driveway.  We've been trying as much as we can to let her do the things we know she can independently so most days she walks into the house when she gets home from school by herself, she climbs up the stairs for bath time and bedtime by herself and goes into her room.  She’s getting better at using a fork to feed herself and has done pretty well (prior to the pneumonia) with open cup drinking.  She’s recently added the words “fish” and “cookie” to her signing repertoire and adamantly shakes her head "no" at things she doesn't want (I’m not as thrilled with this development).  She seems to understand more directions (whether she chooses to follow them or not is another story)  and is beginning to imitate a lot more.  And finally one of our favorite new things that she does is bend over and put her hands on her knees and laugh.  It’s like she’s just heard the funniest thing and just can’t contain herself. 

Okay, I think I’m somewhat caught up.  I was hoping to be able to write a “thankful” post this weekend but that didn't happen and despite the past few weeks, I really do feel very thankful for many things.  I’m hoping to share that in the next day or two.  A huge thanks to everyone for sharing thinking about us and Tera these past few weeks.  It makes a huge difference to know that in our most stressful times, we have so many people that care for and love us.  We couldn't do this without you all.   

Saturday, November 17, 2012

Pretty much done with this

And the pneumonia saga continues. We thought she was getting better; then today her coughed sounded worse, but she still seemed better overall.  We went out to the mall earlier this afternoon to run some errands and while waiting outside the kiosk where Tom's watch was being repaired, all of a sudden Tera threw up the contents of three baby food pouches.  This was of course great timing (although I suppose it would have been worse inside a crowded store) and we had to rush to find a bathroom to change her in.  When I finally got her in what was thankfully a large bathroom with a lounge area big enough for her stroller and with some chairs, I took one look at her and didn't even know where to begin.  I finally got her cleaned up, changed (into some clothes that were apparently too small) and we headed home.

We got home, got her inside and her and I were sitting on the couch when it all happened again.  This time, of course it was on me and her and the couch.  We got her clothes off and decided it was time to call the doctor to see if we were going to the hospital.  The on-call doctor basically said that while it wasn't great that she was throwing up, if she wasn't running a fever and her breathing didn't sound labored, it wasn't an emergency but that we should plan on bringing her into sick call tomorrow morning to have them reevaluate her condition.  At that point I felt like it was time I got in the shower and so Tom gave her the two nebulizer treatments and her antibiotics.  By that time she was acting completely fine.  She played, was smiling, and being silly and signed "eat".  We gave her her yogurt and some noodles and while she didn't eat a ton, she ate enough and seemed fine doing it.   Shortly after finishing dinner and Skyping with her aunt, she started getting very tired and we decided that while a little early, given what had already happened, bedtime was probably not a bad idea.

We headed downstairs to try and relax and watch a movie and got about an hour in when we heard her throw up yet again.  We cleaned her up and despite Tom and I being devastated that our sweet little girl is suffering, she calmed down quickly and fell back asleep quickly as well.

After we got to the ER last time she was sick
Let me just state at this point that Tom and I don't even know how to describe how we're feeling.  We're both exhausted from all the stress of this week and a lack of sleep.  We're now also worried and confused as to what's going on with her.  Both of her last two cases of pneumonia started out as a cough for about a week then culminated in a fever spike and hours of throwing up which then led to the diagnosis of pneumonia  and during this last time, a trip to the ER and subsequent 24 hour stay from hell.  This time we think we caught it earlier, but the recovery and the effects from the steroid in her nebulizer treatment have lasted so much longer and now we don't even know if she's getting better.

I'm very certain that the throwing up is a result of her swallowing too much mucous, but I'm not sure if that's a good sign because she's getting it up out of her lungs but then ends up swallowing it, or a bad sign because there is still that much mucous present in her lungs and her coughs still don't seem productive enough to be clearing much.

Just as an informative side note: in Tera's case our theory as to why she's already had three cases of pneumonia is that when she gets a cold or any kind of upper respiratory infection, her low tone prevents her from producing a strong enough cough to clear the gunk out of her lungs and because of her asthma, it makes her more susceptible to these kind of infections which has resulted in her having pneumonia three times in nine months.

So there's our current situation.  We'll see what the rest of the night and tomorrow morning brings.

From Day 2 of her last case of pneumonia at the hospital

Thursday, November 15, 2012

Our week

I’m tired.  This has been a long week and though I've wanted to post a couple times, I just plain ran out of time and/or was too exhausted.  So here’s the recap of our week:

Sunday morning we took Tera into sick call because she developed a nasty sounding cough all of a sudden combined with a fever and not feeling well.  The doctor said it was a cold that was complicating her asthma, not pneumonia yet and we were told to put her back on the Albuterol to help keep her airways clear and that we should follow up with the pediatrician (the longer version of this is that we weren't terribly thrilled with the on-call doctor for many reasons, but anyway).  We debated whether or not to make the appointment but Monday morning she still didn't sound great so I made it for Tuesday night.

Monday night sucked.  She was up at least four times, coughing a lot, completely congested, very restless and when she was actually sleeping, it sounded like a freight train was going through her room when in reality it was her breathing. 

Tuesday we brought her to the doctor and after listening to her lungs and our description, he diagnosed her with her third case of pneumonia since last February.  Really?   This poor child.  We told him that the Albuterol was making her heart race and he switched her to something else.  Then we had to go to pick up the antibiotic and new steroid and by the time we finally got home it was around 7pm.  Then we still had to give both of her breathing treatments, the antibiotic, and get her to bed.  Well that would have been difficult enough given how tired we were, but then the steroid kicked in and she was wide awake.  She didn't end up going to sleep (and this was after almost an hour of trying) until a little after 9pm. 

Wednesday she had a better day at school, seemed to be feeling better but didn't get her treatment until 2pm and we’re supposed to do it every six hours.  Last night we pushed it as long as we could without trying to do it too close to bedtime, but apparently we failed as she was up until 8:30.  Her normal bedtime recently has been around 7pm.   Then when she finally went to sleep, I was able to begin getting some of the things done that I needed to and I finally went to sleep around 10:30. 

I love this time of year, but I've already had to regroup too many times.  As it is I’m writing this at work because I've finally caught up on work stuff, but I can’t get anything done at home.  I always struggle with the holidays, especially now with Tera.  Mostly it’s because I want everything to be special and I want things to be meaningful and that takes time, which I don’t seem to have a lot of.  My family and my husband will say just to take it easy and not over do it and make things simpler this year.  Except that doing these special things is what I enjoy about the holidays so not doing them doesn't help either.  I feel like I’m letting myself down either way and I honestly don’t know how to find a happy medium. 

My goal every year is to try and simplify, ask for help when I can, and try not to wait until the last minute, but that typically doesn't all happen.  I suppose I will once again do my best and through the craziness, try and enjoy myself and my family.  
From this time last year...

Sunday, November 11, 2012

Rough Sunday

Today was a rough day.  Tera was up at 4:45 and we figured out fairly quickly we'd have to take her to sick call  due to a nasty sounding cough, wheezing, and a fever.  Add to that our cat has started peeing in my office.  She's had various kidney issues in the past, but nothing for years.  After a week of some unusual behavior, I noticed the undeniable smell of cat pee and we've had to keep her upstairs since.  We have to take her in this week and we're already worried it's not going to be good news.  And if all that doesn't sound like enough fun, Tom and I are both experiencing incredible back pain.  We had both been looking forward to this weekend because it's the first Sunday in a while we haven't had plans and he hasn't played hockey and instead of a relaxing day at home, we had to take Tera to the doctor, go to Target to fill her Albuterol prescription, and go to Home Depot for a black light to find the cat pee.  That would have been enough but then Tera only took a 30 minute nap.

I won't lie, I was close to tears a few times today.  My little girl has an awful sounding cough that is a result of a cold and complications due to her asthma.  She also seems to be teething on top of the virus and lung issues.  I'm really worried about our cat and feel awful that she might be in pain.  And I'm so exhausted from a lack of sleep due to all of these things.

It's ironic that I just posted how lucky I was feeling and now all of this.  At one point today I was scrolling through some quotes I had found on Pinterest and I decided that instead of posting several of them on Facebook to illustrate my feelings, I would include them as part of my post tonight.  Think of this as a collage of feelings and thoughts that I'm experiencing today.
You never know how strong you are until being strong is the only choice you have.Strong.just a little something I like to sayLol!!....happinessYEP!!Great quote on being a good mother.
This is a little old (almost a year), but it's one of my favorites and I needed a smile tonight...

Tuesday, November 6, 2012

Back from my hiatus

After a month of continuous posting (minus a day or two here and there) I felt I needed to take a break, but mostly it was because we had something going on Thursday, Friday, and Saturday of last week and then Sunday I just ran out of time. 

I was going to post this earlier last week but then I ended up with family guest posts that I wanted to share more.  Last week it struck me once again that we are lucky.  In my readings and in my DS forums, I come across so many things that other children have and go through.  There are conditions and complications that I never even knew existed and when I read about what these kids, and their parents, go through, it always makes me think that Down Syndrome really isn’t that big of a deal for us.  Sure Tera has her problems, but as kids I had strep throat for almost a year and my sister had ear infections for almost a year and my mom dealt with both of us at the same time and still came out alive (though a bit frazzled).  We weren’t what I would consider chronically ill and I don’t think Tera is either, we’re just more aware of it with her because we know her immune system isn’t as strong as a typical child’s might be. 

I will probably always have some times when a pity party for myself, my family, or my daughter (or all three) seems like the most logical way to handle things.   I would venture to guess that most people, even the best at heart, have moments of self-pity.  It’s not always easy for me to see that things could be worse because stress and worry overcome me.  But in the calm moments that eventually come, I can experience clarity and appreciate what I have as a wife and a mom, and even as a sister, a daughter, a friend, a teacher, and everything else that I am. 

In November we celebrate Thanksgiving and though great food and times with family and friends are a major part of it, it really is to give thanks for what we have.  Many people are posting what they are thankful for each day for the month and having just come off a month long commitment to share the stories and experiences that are my life, I think I’ll keep to just sharing when I feel particularly thankful for something. 

On top of everything else I’ve shared, I’m thankful that Tera had such a great day yesterday.  It was the happiest I’ve seen her in a while and her smile and laughter can change your whole day and perspective.   

Wednesday, October 31, 2012

Day 31

And here we are at the end of the 31 For 21 Challenge.  It's not been easy to find the time, or energy, some nights, but it's a challenge for a reason and a good reason at that.  I will of course continue to blog so this is by no means the end of it all, just the daily challenge.  And in closing, I'd like to share one more guest post.  This one is from yet ANOTHER doing aunt and who also happens to be Tera's Odd Mother.  Thank you all for your continued support, I appreciate every comment and "like" on Facebook.  Oh yeah, and Happy Halloween!

I always knew I wanted to be an aunt. Kids are great and often the closest thing I can relate to. Thus, there is nothing better than kids I also happen to be related to. When my sister told me she was pregnant, I, of course, went berserk with excitement. I’m not known for my propriety, so the first question I asked was “Am I going to be the Godmother!?!”  My adoring older sister slyly smiled and pretended to hesitate when she said “yes”. For nine whole months we “patiently” waited for the little darling’s arrival. When I found out it was a girl, it was only fitting. I have three sisters, so girls are just my forte. And so it was settled; this little girl and I were going to have an unbreakable bond for the rest of my life.

I’m not going to pretend I wasn’t completely shocked and dismayed when I heard Tera’s diagnosis. I had already fallen in love with her and it caught me off guard. It hit me hard. It hit us all hard. I never told my sister, but there was something about the day I first met my Sweet Girl that seemed off to me and then it made sense why. The week that followed was filled with sadness...acceptance…and then COMPLETE JOY. The absolute excitement that I eventually felt consumes me to this day. Here we were, presented with this amazing opportunity to take the road less traveled. The things we were going to learn from this already inspiring little girl were endless. But it wasn’t just that. She is my niece. She is my flesh and blood, and all that matters is that she is happy. Period. I will do whatever, whenever, to make sure she stays that way. 

 I am still nearly brought to tears just looking at her. I am 100% wrapped around her perfect little fingers. And since I was selected as her “Odd Mother”, I am responsible for taking notes from her parents. I may dote and entertain, but I also strive to teach and discipline. I don’t take my role for granted. I know what it means to take this seriously. I won’t resign from my role when Tera turns 18. I am there for her for as long as I am around.  

When writing this post, we were asked to answer some pretty tough questions about how Tera has affected our lives. Honestly, the only thing I can think about is that I love that little girl more than I knew was possible. I look forward to every split second I get to spend with her and I get butterflies in my stomach at the anticipation of the next visit. She is amazing in every way and I am blessed to be her aunt and Odd Mother. I look forward to the possibility of her Uncle Jojee and me raising our kids by her side one day.

Tuesday, October 30, 2012

Day 30

As the month is winding down quickly here I had an idea for a post for tonight but I figured that may be a better way to end the month and I got another family submission today.  In hindsight I wish I would have spread them out so that each person had their own post, but I wasn't sure how many I would get.  

I would like to throw out there that if anybody that reads this ever has any interest in doing a guest post, I would absolutely love to have you.  I'm guessing there is a chance that I may get one or two more family responses still and I will share those if I get them, but if anyone else has any type of post they'd like me to share (and it doesn't have to be about Tera), please, please, please let me know.  

This is from Tera's other grandma (yet another one of her adoring fans).

How has Tera's diagnosis changed me or my way of thinking?
 Not sure her "diagnosis" has changed me or my way of thinking but she sure has.  I never thought being a grandparent would have this effect on me.  Whenever I'm around her or even just think about her I can't help but smile. She is amazing.
 What am I most proud of her for so far?
 Just being her.  She is one determined little girl.  Once she gets something she just runs with it. 
What were my initial worries???
 There were so many.  When Tom first called we just sat on the floor and cried.  Then I thought about all the children I had worked with who had Down Syndrome and I was confused.  Would she be as challenged as some of the students I knew or would she be able to get along just fine.  Then we got back home and I laid eyes on her for the first time.  All I can say is that all my initial worries seemed to disappear and I was in love.  I was scared about the physical challenges she was going through and about the challenges her mom and dad were facing but for some reason I felt sure that she would be just fine.
How has she changed the family?
 For one thing she seems to be the first thing we all ask about.  "Have you seen Tera lately?"  "How is Tera doing?" 
The other change is she has brought us all a lot closer.  Tom & Michael have always been close but not like now.  I know Melissa and Cathy were always good friends but not like now.  She seems to be a love magnet and everyone that loves her have opened their hearts to the rest of us.
What do I look forward to in the future?
 So many things.  Right now it's her first word.  It's kind of hard to figure out what her grunts mean even when she is doing so well with her signing.  I look forward to watching her in her school programs. Watching her learn to swim, ride a bike, run, hit a baseball, play guitar with her papou, play video games with her uncle Mikey, baking cookies with me and my daughers-in-law, and so much more.  Mostly I look forward to her having a happy future.  Her being able to do what ever she wants.
Anything else?
 I am so amazed at how Tera lights up my life.  All she has to do is give me one of her smiles and I just melt.  Sorry Tom and Melissa but I'm going to spoil her rotten.

Monday, October 29, 2012

Day 29

So I realized after all the chaos of my broken family this weekend that I never did Tera's 20 month update (not that I haven't shared most of it in the past month anyway), but it's not going to happen tonight so I'll try and do it in the next day or two.

Tonight's post is from another one of Tera's doting aunts.  And again I repeat that she will never lack for love or attention from her family.

How has Tera's diagnosis changed you or your way of thinking?
It has reaffirmed my belief that love is the most wonderful thing in the world and love will get you through anything.  Also I think of other people's feelings and situations much more.  I got so mad at you guys the first day in the hospital when the nurse came in and talked about the "heart issue and test" and you didn't react or tell us anything.  I went in the car and cursed you out.  I had no idea what you guys were going through.

What are you most proud of her so far for?
Her determination in everything she does.

What were your initial thoughts/fears/worries, etc when she was born and you found out she had DS?
I sobbed because I compared her to every other special needs child as a teacher I have encountered.  I thought that all I would see in her was Down Syndrome.  Two days later when I held her again all I saw was a little baby that I loved.  That's all I still see. I now also see special education children differently at work because I  see their families at home who love them just like we love Tera.

Do you think she has changed our family and if so, how?
She has brought everyone closer together. She makes everyone so happy!

What are you most looking forward to in the future?
Watching her learn and discover new things and hopefully spend a lot of time with her.  I want her to visit us and just be nothing but happy.  Also we are going to visit the kitties at Save-A-Pet together, watch WWE and a lot of football while eating salamis and deviled eggs and go to Door County as a family.  I don't even care if we are drinking IPA's when she is old enough.:)

Anything else you'd like to include that you want to share.
I love Tera.

Sunday, October 28, 2012

Day 28

Yes I copped out last night. It was probably the worst afternoon/evening of teething Tera has had yet so that in combination with a visit from Tera's aunt and uncle made for a missed post from me.  And after the afternoon/evening we'd had, it probably wouldn't have been anything worthwhile anyway.

I want to save the guest post response I have in mind for tomorrow because I think Sunday posts sometimes get missed in the Sunday night/Monday morning shuffle and those posts are important to me this month because I want to highlight and give credit to all of Tera's amazing and loving family and biggest supporters.

Yesterday we had the privilege of attending the Gigi's Halloween Party and I'm so glad we were able to make it.  After having to stay home with Tera on Friday I wasn't sure if we'd be able to go but as more time passed the more it seemed evident that her biggest issue still is her teeth we hoped we'd be able to at at least show up for a little while.  All the kids were dressed up, although there was only one Frankenstein, and we were able to catch up with some families we haven't seen in a while and just watch the kids be kids.

This washcloth and Motrin were the only things
providing Tera with any relief the past few days
After that we made the drive out to my sister's to visit one of her two best friends and her husband who were visiting from New York for my sister's birthday and who had never met Tera.  I had been hoping we'd be able to make it over there to see them because her friend isn't in town often and I always enjoy being able to introduce Tera to new people because I feel that she, like every other child with DS, is an ambassador for their community.  I really feel that the more that people can make a connection with an individual with DS, the more likely they are to put aside any misconceptions and really understand what DS means and what it doesn't mean.  I never mind answering people's questions because it means there is one more person who knows the facts and not the myths of DS.

I oftentimes feel that when I'm writing these posts I don't have enough experience to fill 31 days worth of information, but as each day passes we have more and more experience and knowledge of what this means to us.  Right now I know that the slowness with which their teeth come in, and the order that makes it hard to predict and know which ones are coming in, makes it excruciating for my little girl who can normally handle pain and discomfort better than the average adult.  I know that when we're with our family and friends, she is just Tera and nothing more or less.

And I know for tonight, I'm exhausted and done.

Friday, October 26, 2012

Day 26

Another short post:

Today Tera stayed home sick and after a week of on and off fevers, throwing up last weekend, three "off" days at school, general crankiness, and regularly signing "sleep" starting at 6pm most nights for the past two weeks, I finally had to take her to the doctor to find out nothing.  He was as baffled as I was by the symptoms and after ruling out anything respiratory, an ear infection, and a UTI, the only thing we can do is treat her symptoms and keep an eye on her.  

This frustration is about being a parent of any child, not just a special needs child and it shows how our children are children first and special needs after.  It's incredibly difficult to know that your child is uncomfortable and not feeling well and not knowing what to do about it.  To worry that it's something more sinister than just teething but having to wait it out to see if it gets worse or better.  

I'm not worried right now so much as heartbroken that my baby is not feeling well and I can only do so much to help her.  I want my happy, mischievous, energetic girl back.

Thursday, October 25, 2012

Day 25

Tera had a better day at school today, but still a rough night at home.  Our usually energetic, easy going girl is tired, uncomfortable, and just generally not herself.  We will all be happy when this miserable tooth (at least that's our assumption) makes its way through.

Tom and I have been exhausted this week too so I think we're all looking forward to the weekend.  But until then, here's another reflection on Tera.

How has Tera's diagnosis changed you or you way of thinking?

Down Syndrome, What Down Syndrome?

I don't have a clear picture of what I though I would see as I anticipated looking at my granddaughter after I learned of her diagnosis. But I certainly didn't anticipate what I do see now. I guess I initially thought I would somehow see Down Syndrome.  Now I think Down Syndrome, what Down Syndrome?

When Tera and I first make eye contact all I see is her angelic face and that huge "light up my life" smile.  I see a magical twinkle in her eyes and wonder how does she do that? I see a hand reaching out for me to take. And when I pick her up I soon feel that same hand reaching for my mouth and that glee she exhumes when I lightly bit her fingers.  (Yes, she is a little goofy don't forget!) I see that excitement in her face as she takes every step. I see her silly grin as she bangs, strums, or presses her face on my guitar while I'm playing for her. 

All of these visions of her bring me unimaginable joy as I think to myself how special she makes me feel.  And when I take the time to look ahead, I see a future as bright as that incredible smile and then ask myself again, "Down Syndrome, what Down Syndrome?"

 Then Yaya  walks into the room and I'm once again relegated to second fiddle.  

Wednesday, October 24, 2012

Day 24

So here's my interesting Down Syndrome fact for the day:  children with DS tend to get their teeth in late, out of order, and very slowly.  The reason this fact is pertinent today is that teeth seem to be the plague of my daughter's existence this whole week.  Thank goodness for ibuprofen...

Today's post is another collection of responses to my questions.  Enjoy!

Do you think Tera has changed our family and if so, how?

She has definitely changed our family. She has brought more love into the family. When I see her I just have to hold her. I try not to squeeze her too hard, but she is such a good little hugger. She's a constant reminder about what is really important in life - family. Tera has brought so much love into this family, not that it was in short supply before, but now it's even greater. I think that Tera being born into this family has brought more attention to the special needs of kids with DS. We all attend the Gigi's fund raiser. I've told the story to numerous people around the world and they all know someone with DS or someone caring for another with DS. The whole world knows about it, but until it reaches you personally, you never really focus on it. Tera has brought focus to DS in our family.

I think she is special in the sense that she will always be my first grandchild with her extra special qualities and she will need our extra care and love.  From a Mom's perspective she will always be that loving little girl, but having my three girls I can tell you each of you holds a special place in my heart as she will and any other child you may have in the future.

The birth of any child changes a family.  The addition of anyone to a family cannot help but change it.  The important thing is that there is no negative change as a result of Tera's birth and situation.  By that, I mean we are all what we are and always have been with a new situation to negotiate; the same as any new addition.

What are you most looking forward to in the future?

Seeing her get her picture taken every year with or in The Stanley Cup. :) And watching her develop along the way. You know with the parents she has (have I told you how proud I am of her parents?) she will love hockey and she will be competitive in whatever she decides to do.

Watching her grow and reach her milestones, and getting kisses and hugs forever!

Retirement.  But as regards Tera, just seeing how she progresses and interacts with her family and friends.  Also, to see her bitchin' fall away jump shot.  Oh.  And I'm also looking forward to the day when she stops staring at me like that.

More to come tomorrow!

Tuesday, October 23, 2012

Day 23

Today's post is from one of my sisters.  When Tera was born she was one of the few people that I am closest to that we had to tell over the phone about Tera's diagnosis and besides my dad, who was also over the phone, was one of the more difficult things I've had to do.  Calling her at work as a conference call with Tom to tell her I was pregnant, and then calling her that Saturday morning to tell her about Tera's arrival were two of the more exciting moments we've shared as sisters, but that third call was impossibly hard.  What made it hardest is that unlike most everyone else, because she lived out of state, she couldn't see for herself that Tera really would be okay.  She had to wait the longest to see her and hold her and she has been one of her biggest cheerleaders from the very beginning.

I'm so very proud of all my sisters for different reasons, but Lindsay is one that I know Tera will get strength and inspiration from.  She's worked hard for everything she's ever gotten and made it through more than most people should have to experience.  And with all that being said, here are her thoughts on Tera.

I remember when Melissa and Tom called me to tell me the news.  I was outside at work and they were both on the phone and I had no idea what was going on.  Then they said it Melissa was pregnant!  I then of course started screaming (which it was a good thing I was outside) I started telling everyone because I was so excited to become an Aunt.  Then about 8 months later my phone rang very early and it was Melissa and I thought hmmm… this was early and then it clicked she must have delivered my niece!  I remember asking Melissa if she was perfect and she said “pretty much”!  Which I knew she would be.  Not knowing at that time that Melissa and Tom already knew about her diagnosis but didn’t want to say anything right away.  Then a couple days later Melissa called me again and said that she had to tell me something but didn’t want me to worry.  She told me that the Dr told them that Tera had Down Syndrome.  I immediately started crying, trying my hardest not to let Melissa hear it in my voice, I asked if she was going to be ok.  She said yes but she had to stay in the NICU for a little bit but she was ok and she was beautiful.  When you do not know a lot about something and start looking things up about it your fears become much worse (I swear sometimes the Internet is the devil).  I remember reading articles about people with DS are more prone to cancer; heart problems and that they might not be able to function on their own.  I was not only worried for her health because I just wanted her to be healthy and be able to watch her grow without any obstacles but I was worried for Melissa and Tom that they would have to face some challenges in Tera’s life.  Then I started thinking how much this was going to affect the whole family.  Then as time went on and I finally got to meet her I knew this was one amazing little girl she was so small and young but I knew she was going to do some amazing things.  I have so many reasons to be proud of her, I remember being on Skype and her signing for different things and I just couldn’t believe what she was doing and how she was able to communicate and know what she is talking about.  In case you don’t know the dynamic of our family… we have a very interesting family bush.  We have had marriages, children and divorces but we still have been a pretty close bunch.  Never in a million years did I think we could become any closer because again we are a little confusing, then enter Tera!  Not only has she brought the ENTIRE family together she has a very large extended family and fan club here in Charlotte, NC.  I have already been told I may need to rent a venue when she comes down to visit me because she has so many followers and so many people that love, care and support her and they have never met her!  They have never met her parents but the stories and the accomplishments she has already everyone just loves her!  (I might add she already has an arranged marriage with my best friend’s son).  The number one thing I am looking forward to for Tera’s future is what she is going to accomplish and how many great things that she does in her lifetime.  Like I said she has inspired so many people that has never met her and have only seen pictures that the thought of what she can do is just amazing.  Awhile back I was trying to figure out what tattoo I wanted and then it hit me… something for Tera!  Then after speaking with Melissa and Tom my boyfriend and I figured it out.  The Wonder Woman symbol and the DS ribbon.  Josh drew it up and the next day I went and got it done.  It cannot be any more fitting for Tera she is my Wonder Woman and my everything I am proud to show the world how much she means to me.  Whenever someone asks what it is I get to tell them the wonderful story of Tera Melissa.  I wish I could see her more and to see all of her new accomplishments in person but I love I get to Skype with her and at least get to see and talk to her and she will know how much I love her and how proud I am of her.

Monday, October 22, 2012

Day 22

About a week ago I emailed Tera's grandparents and aunts and uncles and asked them several questions related to how Tera has affected and/or changed them.  I'm going to post the responses I've received so far over the next few days and add more as I get them.  Needless to say they all made me tear up in some way or another and I'm excited to share them so everyone knows just how amazing our family is.  Please keep in mind that I asked my family for honesty as it is something that I constantly strive for here.  I have been as honest as possible when describing my fears and emotions and I appreciate that they gave me the same thing.

The first question I asked was how Tera's diagnosis has changed their way of thinking, if at all.
When hearing about our little bundle of joy having special needs I thought about all the people I've seen through the years with Down Syndrome. They always look so happy. Do they know something we don't? Is their difference a blessing in disguise? She is definitely a blessing.

It made me more aware of DS and now that I have had a couple of classes, when given the opportunity I write my papers on the subject.

Frankly, it hasn't.  I'm not sure why.  It could be that I've always truly and seriously considered the possibility that a child of a family member or friend might be born with a challenge and thus to some extent was prepared on some level.  I was more affected by the sadness expressed by everyone else, and greatly proud of the manner in which you and Tom dealt with the situation.  It could also be a result of having grown up with a mentally disabled older son of the people who lived behind us.  He was quite a bit older than the rest of us, didn't have the same condition, but his mental state was like a very young boy.  Pleasant and eager to help.  At the same time, another older of two boys on the other side of the block was also "slow" but not so bad that he couldn't hang with those of us who were a few years younger, though his brother treated him poorly.  Later, a cousin of mine had a child with Down Syndrome.  Nice boy who is now an adult and said to be working and earning.  So, though, like most anyone, I'd prefer that the three of you didn't have this to deal with, Tera's condition makes absolutely no difference to me.

What are you most of her for?
Her ability to sign. And her picking 2 of the best people in the world to have as parents. She really picked well. I'm just sayin'. Also how good she was while sitting in The Stanley Cup getting paparotzied with all the cameras going. She was a trooper.

Probably her walking, but really everything she does she does with so much energy and determination , she amazes me and I am so proud of her.

What were your initial thoughts/fears/worries, etc when she was born and you found out she had DS?
My initial fear was that she was born a Red Wings fan. That would have required major surgery to correct. Down Syndrome? Eh, that's nothing compared to being a Red Wings fan. On a serious note, I just wanted her to be healthy. No worries, just concerns. How can I be worried when she's got the best parents in the world? I knew she would love hockey - everything else is just a distraction.

The possible health issues and the extra pressures it would put on you both as parents.

I was concerned about the severity.  At the risking of offending, as this is an awkward thing, children with Down Syndrome have a distinct look.  It is almost as if they are all of the same family.  But to me, Tera does not "look" as if she is a severe case, if you get what I'm trying to say.  Of course, I was also concerned for you and continue to be so.  Being so much like your mother, I think you definitely get what I'm trying to say here.

So there's a bit of a preview of what I have to share.  I'll share some more of what they had to say, hopefully get a few more responses back, and also share some more overall thoughts and reflections.  Tomorrow I'm very proud to share one of my younger sister's beautifully written reflection.  We are truly lucky to have such phenomenal families and such an amazing support system.

Sunday, October 21, 2012

Day 21

I'm tired.  I'm tired of being tired and I'm tired of having no time.  This month is all about awareness and support of DS, but people need to know it's not all rainbows and smiles all the time.

Tera is now up to four therapies a week and while we try to schedule at least half of them at daycare, it took me almost two weeks last month just to contact her therapists and schedule the sessions.  That doesn't include the actual session taking place and the inevitable cancelling and sometimes rescheduling when she's sick or all the juggling that goes on between Tom and I to make sure one of us is home with her for the ones we do attend.  Please don't read this and think I'm looking for pity because I'm not. Everyone has problems, but this is my way to deal with the stress and so here I am dealing.

Our weeknights are ridiculous some weeks and while I'll admit some of it is brought on by us, I'd like to think  we do deserve to do some things we actually want to do and sometimes those things happen on weeknights. They weren't exactly footloose and fancy free before my damn herniated disk and resulting shoulder pain, but since then I've also had to add in two hour and fifteen minute appointments a week on top of our pre-existing engagements.  The only plus side to those is that they do include a one hour type of massage and that's kind of the only time during the whole week that I'm forced to relax.

Then there are the weekends.  I don't feel like we're over booking so much as all the things we'd like to do and people we'd like to see happen to fall on the same two days.  I've written about my fall bucket list and things I'd like to experience with Tera at this age that I don't want to regret missing out on later, but apparently that also means making ourselves crazy in the process.

This year, like last year, Tom is playing in two hockey leagues.  One he's played in for years which is every other Friday night at 9:40 from September until the end of May.  This used to be more of an inconvenience when we didn't have a child and I wanted to do things on Friday nights, but mostly now I just catch up on housework or grading or TV and go to bed.  He also plays some Sundays up in Kenosha with some guys I work with.  This is an actual competitive league (Friday is mostly rat ice style) and it's only on some Sundays.  The times vary from 3:30 to 8:00 and I mostly don't mind this one it's just that Sunday nights used to be our time to relax.  But he really loves it and that is his way to relax and he deserves to have that time to himself.  It's also one more thing to plan around on the weekends.

Meanwhile I spend more time postponing my to-do list than actually accomplishing everything on it.  The winter is usually a little better because there's no yard work and less outdoor activities, but for now we still have to figure out how to cut the grass every few weeks, when to bring our outside stuff in, when to rake, when to trim the bushes before winter, and various other tasks.

And then at some point on most weekends it all overwhelms me, I have a (usually minor) meltdown, regroup, and I'm somewhat ok.  Then the whole process starts all over again.  It's a tough balance of not being recluses but having all of our housework and projects done, and having a life but a house that looks like a tornado went through it with dirty dishes and dirty clothes.  I don't know that I'll ever figure it out, but I'd like to think I'll get better at handling it (believe it or not I'm better now than I used to be).

And to top it all off, we have a child that does still tend to be more sick than the typical child.  Yesterday we spent a good portion of the day at the zoo, some time with friends last night, actually went to bed at a decent time, but Tera was up multiple times culminating in puking all over me, herself, and our bed at around 7am.  This added in several loads of laundry to the already extensive amount I had to do and then we had a sometimes cranky, kind of lethargic, un-Tera like Tera with a still very delicate stomach to contend with.

Tera had her face painted like a scarecrow at
school on Friday...
Ok I'm done.  I've got it all out, I'm going to look at the pictures we took yesterday of my favorite subject, enjoy my wine, and wait for my husband to come home so we can maybe watch Walking Dead before we fall asleep.

Saturday, October 20, 2012

Day 20

Today we visited Brookfield Zoo for the first time with Tera as a walker; and walk she did.  I'll post some pictures tomorrow because I'm way too tired now.

Unfortunately, this whole week she's been a little off and today there's definitely something wrong.  It might be minor, hard to tell right now, but she's not eating as much (not the end of the world), exhausted (not too surprising considering her napping was off today and she had a lot of stimulation and walking), but also a tad feverish.  We're really hoping it's just teething, which we never really know for sure with her because they come in so incredibly slow that they usually end up coinciding with some sort of sickness.  Hopefully tonight she'll sleep well and until 7:15 again tomorrow which we were lucky enough to experience this morning.

So my salute to DS tonight is while I'm thrilled that she's finally walking, and earlier than the "average" age for  kids with DS, I fear she's fallen victim to yet another virus she can't fight off as well as other kids.  We'll see what tonight brings and maybe tomorrow night I'll have something a little more creative and/or inspiring.

From around this same time last year when she also wasn't feeling well...