Friday, September 27, 2013

Relaxing? Hmmm...

Taking time for myself is not something I'm good at. Well, let me rephrase.  Taking time to for myself to relax is not something I'm good at.  Most of the time if I'm by myself, I'm wondering what I could be getting done at that moment.  See, my life seems to consist of a string of guilty moments.  If I'm doing something productive, I feel guilty about not working out or spending more time with Tera and/or Tom.  If I'm working out, I'm worried about all the things at home that aren't getting done.  When I'm spending time with Tom and Tera I don't feel guilty, but I do wonder when I'm going to get the other stuff done.  This vicious circle is how most of my life goes.  And then there's the times when I'm trying to relax and I feel guilty for not doing all of the previously mentioned things.

Right now is a perfect example.  I should start grading tests because they have to get done at some point and Tom is playing hockey and Tera is sleeping (mostly).  But instead I painted my nails and now I'm writing this post.  I should also try and get to bed so I get an actual full night's sleep.  But if I go to bed now, I'll regret not getting some more things done tonight.

I never feel like there's a good balance between work, my family, and myself.  I know for the sake of my husband and my daughter I should take the time to de-stress, but it's not as easy as it should be, and I know I'm not the only one out there who feels like this.

Next week October starts and with it, my challenge to blog every day for Down Syndrome Awareness Month.  I'll admit, I'm already wondering how I'll find the time when I've brought grading home with me most nights so far this school year.  But it's something that's important to me and part of the reason I started this blog was to be able to get my thoughts out.  I'm still not entirely sure how I'm going to pull this all off, but I'm determined to be a good teacher, a good blogger, a good wife, a good mom, and somehow maintain my sanity.

With the arrival of October comes one of my favorite months and times of the year and also my fall bucket list.  I want to be able to enjoy this season so I'm going to have to figure out how to deal with all of this without losing my mind.  My plan so far includes comfy Sundays with candles lit and time at home with my baby and my husband.  At least one trip to an apple orchard and/or pumpkin farm.  Family pictures, beautiful changing colors, time with my nieces, and maybe a bath or two on the weekends with some time to myself and a good book.

Here's to a good night's sleep, a great weekend, and 31 days of blogging starting next Tuesday!

Sunday, September 22, 2013

Tera- My perfection

I'm feeling sentimental tonight so forgive me when I say that in our daughter, we have created perfection.  If you're not so inclined to indulge in my mushiness you might want to skip tonight's post.  But if you would like to share in the absolute love I feel for my child then by all means, continue reading.  I will admit that today is one of those days when I'm finding it more difficult than usual to face a Monday without my Stink.

I was able to spend Saturday morning with Tera at her swim lesson.  It wasn't her first one ever, but it was her first one since about four months old.  It was 40 minutes of Tera/Mama time and I loved it.  We played outside when we got home, I put her down for her nap, and when she woke up we spent the rest of the day and evening as a family.

This morning Tom let me sleep in while he got up with Tera and when I got up I made Tera pancakes.  I love being able to make her breakfast on the weekend.  I guess in the words of my husband, it makes me feel "motherly".  Tonight's dinner was a crockpot soup recipe so we had Tera "help" us make dinner.  Tom cut up all the vegetables and I moved the crockpot bowl to her little table so she could help us.  She helped me put in the broth, all the cans of tomatoes, and then the onions and peppers.  It's one of those things that I hope she'll remember as she gets older and that I hope helps develop the love of cooking that her dad has.

I had some work to do today so when my mom came over to spend some time with Tera, it worked out well.  Since Tera has had some separation issues lately it worked out that I could be in the same room as they were, but that my mom could play with her while I worked.  It ended up being a great afternoon for both of them.  Tera was able to spend some quality time with her Nani and Nani got some very quality time with her first granddaughter.

We had our soup for dinner and then after dinner we took Tera outside to swing and play on her slide.   I love the pictures I'm able to get outside of Tera because they just turn out so much better.  I also love being able to see her outside because she just loves being there. I was able to do some much needed lawn work yesterday and I absolutely love the way our yard looks when it's just been taken care of.  So I didn't mind being outside with her in the perfectly cool fall air in our beautiful backyard just being a family.

I've never tried to hide the fact that Sundays are difficult for me so when I get to spend some time doing something that makes me so happy it makes it all that much better.  The flip side to that is that it can make the fact that I have to go back to work on Monday that much more difficult.  The last few hours today made it hard to face the fact that tomorrow we'll all go our separate ways.  There is no part of this weekend that I regret except that it's almost over.  I was able to get some really great pictures of my beautiful daughter, I got to go shopping yesterday, I got some stuff done around the house, I got to see my mom, and we didn't have to leave the house today.  It was a beautiful fall day that made me fall in love with our home once again.  I was reminded once again how incredibly lucky I am.

Here are some things about Tera that make it so incredibly easy to love her: she loves life, her smile is contagious (even when she's doing something she shouldn't be), she loves people and will wave to them and smile at them until it's reciprocated, she's determined beyond all belief, she's brave, she can change your whole outlook on life, and she's the most beautiful human being I've ever seen.

Tomorrow I will miss Tera and Tom so much.  Our time as a family just makes me want more.  But I know that we both have jobs and Tera will have quality time with her grandparents.  As hard as it will be to leave her tomorrow, it also gives me something to look forward to next weekend.   Coming soon will be my fall bucket list for this year.  Stay tuned!!!

Friday, September 20, 2013

Check another procedure off the list

Yesterday morning Tom and I dragged ourselves out of bed at 5am (not really any earlier than normal) and put Tera in the car to head down to Evanston Hospital for Tera's endoscopy.  It was questionable at times whether or not she would be healthy enough to be put under, but in the end she managed to hold out and she got it done.

I have to say, I was rather impressed with the setup and the staff at the hospital.  The two times Tera has had tubes put in and had to be put under I opted to take her to Children's Memorial just because I felt more comfortable there if something happened to go wrong.  This time it wasn't an option and so we went to instead.  When we got there the nurse set us up in a room across from the playroom so Tera could play while we waited for them to come and bring her back.  It was a really nice playroom; complete with two kitchen sets, a train set, tons of books, coloring paper, strollers, a wagon, and many more things.  She was completely occupied the whole time we waited.  When they did bring her back to the pre-op room, the anesthesiologist came and talked to us.  He never rushed or hurried through any of her history, asked if we had any concerns, and even ordered a breathing treatment before the procedure just as a precaution.  Then her doctor came to see us and told us she'd be going back shortly.

While she was getting her nebulizer treatment we showed Tera an episode of Sesame Street on my phone.  The anesthesiologist came over to talk to us again and at that point asked what it was she watching so he could open it up on his phone to help distract her when they brought her back.  It was one of the nicest things I've ever had a doctor offer, and it totally worked.  She was back there for about 45 minutes when they came to get me to bring me back to recovery.  When I walked back there two nurses, one pushing a wheelchair and the other one in the wheelchair holding Tera, greeted me.  As they handed my crying girl over to me they explained that she had been calling for "mama" when she woke up.  It both melted and broke my heart.  They had me sit in the wheelchair with her as they took us back to the recovery area.

At that point, the nurse that had been holding her pushed Tera and I in the wheelchair around the recovery area, just trying to help soothe Tera and help her calm down until a person from transportation came to take us back to her room where Tom was waiting.  Once she saw Tom she calmed down a little, but mostly it was my sweet baby looking at pictures of her baby cousins that eventually calmed her down.  I wish I could explain how much she loves those little girls, but it's really something you just have to see.

Anyway, she did fine and they sent us home around 9:45.  I'd like to say the rest of the day went without incident, bu that just wouldn't be Tera-like.  Instead she threw up twice, ran a fever for several hours, almost made us think we would have to take her back to the ER, and then miraculously recovered and exhausted us for the remainder of the evening.

So one more procedure to add to Tera's resume.  In fact speaking of Tera's resume, I have to start working on exactly that; a history of Tera's health since birth for when we meet with her new team when she transitions to Early Childhood in February.  I should probably start that soon.

We should get the results of the biopsy in about 7 to 10 days and hopefully know what's causing her spitting up issues.  In the grand scheme of things it almost doesn't seem worth it for her to have gone through this for what seems to be a fairly minor issue, but I also know my daughter and her history and I'd rather we know what's going on than try to guess in the future.  Besides, she's the toughest kid I know; what's a little biopsy and camera down the throat at two and a half?

Sunday, September 15, 2013

Kind of random Sunday thoughts...

I feel like I don't even know where to begin.  There are lots of emotions and thoughts going on right now and interestingly enough, I'm not overwhelmed by them.  Today, contrary to a lot of people's opinions, was a perfect kind of day for me.  It was rainy and cold and a Sunday which meant I could just feel all cozy and comfortable at home.  I lit all the candles that we own, wore my favorite comfortable slippers all day, changed from one pair of yoga pants into another, and didn't leave the house once.  The biggest downside was that Tera was (is) sick.  Again.  She's been battling what we think are allergies most of this week, but they've been wreaking some havoc on her.  A nasty sounding cough, watery eyes, runny nose, more irritability than usual, and she's been tired and waking up off and on this past week. But then my allergies which are always worst in the fall, have given me a sore and itchy throat so I feel fairly confident that that's the cause.  Probably.  Either way she's not been herself.

Then last night she woke up several times after going to bed and ended up throwing up at around 12:30.  I pretty much got up with her every half hour to hour for the rest of the night and while she almost threw up twice more, fortunately she hasn't again since then.  She has run a fever since then though.  Now, I'm no doctor (though I feel like I'm close to one), but in my experience, allergies don't typically cause vomiting and a fever which leads me to believe we're now dealing with something else.

After getting her back to sleep around 5:30 this morning she ended up sleeping until around 7:45am.  When she did finally wake up again, I dressed her in her comfiest clothes and we started our day.  As these kind of days do tend to be my favorites, simply for the coziness factor, I went about making my house exactly that.

Tom and I have had an ongoing discussion for months about whether we want to stay at our house or if we want to plan to move in a few years.  Today was definitely one of the days when I want to stay. I loved our house today.  It was so completely warm, cozy (can you tell I love to be cozy?), and comfortable that despite the rain, clouds, and my utter exhaustion at having had very little sleep last night, I wanted to be nowhere other than where I was and who I was with.

Tera's disposition doesn't always change when she's sick, but today she was definitely more tired, a little more easily upset, and definitely more clingy; but overall, she wasn't bad .  She took a two hour nap but ended up whining for most of the second half which tells me something was bothering her.  She was hungry most of the day but never knew what she wanted to eat.  She Face-Timed (is that a verb now?) with two of her aunts, my grandma, and her BFF just so we could try and keep her happy and distracted.  And despite having slept late (though not sleeping well last night at all) and  a two hour nap, she was falling asleep by around 7pm.

We watched a few movies today, I got some laundry done, and we got ready for the week.  But as always when Tera gets sick, we try to also prepare for what may end up happening.  Fortunately tomorrow she's with Tom's parents so she'll be well taken care of while we're at work.  The hardest part for this week is that she has her endoscopy scheduled for Thursday and if she's not healthy, she can't be put under.  As Tom and I discussed last week when she was showing symptoms of being sick, our motto seems to be "just wait and see".  So we'll see how the next two days go and then she has an appointment with her pediatrician on Tuesday to get final clearance, or the red light, for the procedure on Thursday.  If she's still feverish and/or throwing up, my guess is that will be a no-go.  If I had to guess right now, based on the lack of symptoms other than the fever and throwing up, I'd say maybe another bladder infection.  But if it's not that, I'm going with the ever popular "virus" diagnosis.

One of the hardest parts when she's sick, other than not knowing what it is and not being able to fix it, is just wanting to hold her all day and all night until she's better.  Several of the times she had to be helped back to sleep last night I rocked her in the rocking chair in her room.  Despite how tired I felt, I really didn't want to put her down.  She could breathe easier when I was holding her and she seemed to sleep so much more soundly in my arms.  I can almost feel her putting her trust in me to make her better; or at least anticipate what's going to go wrong.  There've been four times in the past 24 hours when I've had to finally decide to let her sleep on her own and it's been a difficult decision every time.  And right now, even as I'm typing and my eyes are crossing from looking at the screen and a lack of sleep, I know that the second I hear her really cry tonight, I'll be there to rock her again.

If there's one thing I can try and control when my sweet girl is sick, it's that I will be there to comfort her as much as I possibly can.  I want her to know that mama is always going to be there when she hurts.  I hate more than I can say that my baby has had to endure so much in her short life.  But the amount of love, concern, and support she gets almost brings me to tears each time.  I know that there is no shortage of people who would drop everything to be with her, will call and check on her daily, and who will love her and hope for her health like no one else.

Tom and I finally met with an attorney last week to draw up our wills and also a special needs trust for Tera.  Just the fact that the people we had to name for the various responsibilities came so easily to us is a testament to the friends and family we have.  They never once balked at the possible responsibilities and it makes going through something like that infinitely more easy when we have people whose trust and love we never have to question.

And so I will go to sleep tonight, if only in short intervals, knowing that I love my home; my daughter and husband for making it a home; our family and friends, and my life.  For as difficult as it is, I know endless amounts of love and support.

And since tomorrow is Monday I may not feel quite as gracious as I do tonight, but I am gracious that I have a great friend picking up coffee for me.  I have a feeling I'll need it.

Wednesday, September 11, 2013

Life with a two year old

If I had to describe our life as parents with a two year old, I would say it's an ongoing game.  We win sometimes and she wins sometimes.  Tom and I both occasionally choose to fight some battles that aren't worth fighting, but it really comes down to a game.  Some days I can pick out when I pulled off some particularly good parenting and other days I might as well just wave the white flag because Tera has won.  Our biggest battles lately have been eating, bath time, and hair.  Other smaller battles can include brushing teeth, getting dressed, and going to bed.

Tera has had a difficult time with baths for quite a while now.  She didn't always, but then for some reason they just started getting worse and worse.  We tried all sorts of things to help.  We bought a baby that goes in the tub with her.  I tried holding her in the shower and washing her down to get her in and out quickly.  We tried toys.  We tried letting her play longer and alternately just getting it over with as quickly as possible.  She's not really afraid of the water; she'll usually play for a while with no problem.  But when it comes time to wash her and her hair, it goes downhill quickly. We thought we had been making some progress, but then she had an unfortunate underwater incident in a pool over the summer and since then seems to have taken a few steps back.  Add to that some discomfort after her kidney test and we now have been battling with a child who won't sit in the tub and who hates being washed.

It basically takes all our remaining energy at the end of the day to give her a bath with one of us holding her so she doesn't fall and the other one washing.  Then we do battle while trying to comb her hair.  It's really a very relaxing way to spend an evening.

I wish I could say that we consistently do the right thing and give appropriate consequences when she does something she's not supposed to or that we handle each battle the way we should; with patience and the understanding that she's only two.  But we don't.  The handling of consequences (in her case, usually a short time out), is actually pretty consistent, but then there are times like tonight when she climbed up on top of the kitchen table and just sat there laughing.  And so did we.  The look of pure success on her face when she got up there was just too funny and we were too tired to stop her.

Last week there was one night when I did a pretty good job of remaining patient and calm while trying to get her upstairs, in the bath, and sitting down, and then the next night I was slightly less patient and couldn't actually remember how I was able to stay so calm the night before.  I guess my point is nothing more than the typical ramblings of a mom of a two year old.  And for once, it's really more about Tera being a two year old, then Tera being a two year old with Down Syndrome; and that part, I'm okay with.

Monday, September 2, 2013

Down Syndrome? Oh that's right.

There aren't many weekends when I can say that I was able to see ALL of my sisters and my sweet little nieces twice, but I can this weekend.  Tera got a lot of visiting in and was finally able to break through her apprehension of my sister's boyfriend, which we've been working on every time he visits.  We had planned a visit to the zoo with my sister Lindsay and her boyfriend Josh so Josh could finally see something other than the town in which we live when they come up from North Carolina, but the weather wasn't cooperating so we ended up at the Shedd Aquarium instead.  We got about an hour in before Tera was running out of patience at not being allowed to run free so we decided to head out.  And I have to give Tom credit for being amazing again.  He was the one who decided to head into the city instead of taking our chances with what would have ended up as a miserably wet experience at the zoo.  Not only did he suggest one of the museums or the aquarium, but then figured we could head back up through downtown and part of the North Shore to give Josh more of the "Chicago" experience despite the rapidly declining weather.  So we left the aquarium and headed up Michigan Avenue, cut over to Lake Shore Drive, then over to Sheridan and up through part of Evanston.  A lot of driving to be sure, but at least it was something to do.

And here's where I change gears.  Yesterday we decided that it would be easier to get Tera to nap if we took her for a walk to get her to fall asleep.  Tom went with me for most of it and then headed home as I headed around the block to give her a few extra minutes before I tried to bring her inside.  For some reason, as I walked by myself with her asleep in her stroller, the idea of Down Syndrome hit me.  This happens from time to time for me.  I think about Down Syndrome in some way or another almost every day.  Whether it's the calendar in my classroom, the magnet on my car or in my classroom, a post I see on Facebook, or Tera herself; it crosses my mind probably every day at least once a day.  But it only really hits me every once in a while that it's on my mind because Tera does in fact have Down Syndrome.  I might look at her or think about her and connect the two, but it still only really hits me every once a while that she has a diagnosis.

There are so many aspects of our lives that are affected by DS and it only sometimes hits me as to why.  I'm not actually sure how I feel when I do realize it though.  I guess sometimes I'm sad, sometimes I'm mad, sometimes I wonder why it has to be her, sometimes I'm afraid for how many things are unknown, sometimes I want to cry when I catch people looking at her because I wonder what they're thinking.  

I don't want people to pity her, or us.  I don't know what I want them to think or feel, but I know it's not that.  I know that we came to accept her diagnosis early on, but there are still times when I have to deal with the reality of what DS means.  But even though it's hard to remember what life before DS was, I know that we're still early on in our journey with Tera and that means I don't still always feel comfortable or sure with how I want people to act or react.  I know there are times when I want people to just think she is just like any other typical kid and there are time when I want everyone to know just how incredibly extraordinary she is.

For all my uncertainties, here's what I do know.  I know that Tera can change your day with her smile.  I know that she has probably inspired more people to be better in her two and a half years of life than I have in my eleven years of teaching.  I know that she is braver than almost anyone I've met.  I know that she has made me a good mom and a better person.  I know that she loves with every fiber in her body.  I know that she will comfort you even when she is upset.  I know that she adores her baby cousins and wants nothing more than to be able to hold them.  I know she will grow up to be even more amazing than I can imagine right now and that she will change people.  And I know that I love her more and more every day that I get to spend with her.