Wednesday, March 27, 2013

Guilt and other crap I'm dealing with...

Is there a some sort of biological reason that moms have to feel so much guilt? Isn't childbirth enough? I may be starting to throw my own pity party here so if you want to stop reading, I understand.  

I'm on Spring break right now and after debating back and forth for several weeks, I decided I would take Tera to daycare Monday through Thursday this week.  I did this for several reasons.  One, we pay whether she goes or not so it wasn't going to save me any money.  Two, I really can't get anything done when it's just her and I and this is my only time to catch up and get ahead of any cleaning or projects around the house.  Three, most of the time when it's the two of us, she looks at me as if to say, "So now how do you plan on entertaining me? No ideas? Ok, I'll trash the place."  I love spending time with her of course, I just never know if it's going to be one of those wonderful, amazing days I'll look back on in a few years and reminisce about, or one of the ones that leaves me searching her head for horns and wanting a drink by 11 am.  See here's the thing that some people, not all because I know in this respect she's completely with her typical peers, don't understand:  she does not stop moving or looking for trouble.  I know other parents whose kids are like this, I'm not under the delusion she's the only one.  But I also know a lot more whose kids actually sit once in a while, and even if they don't sit ever either, I know, because I've witnessed it, their kids aren't reaching for every counter top and table top to see what they can reach that they're not supposed to have, they aren't running into the bathroom head first into the tub or pulling all the toilet paper out, they aren't emptying bags of dried cranberries all over the floor, and they're not ripping apart books.  And if you are the parent of a child that does all of this, and perhaps even more, know that you have my sympathies.  

Yesterday morning it took me almost a full hour to get Tera out of the house, just to drop her off at daycare. There was 20 minutes of nebulizing, remembering to give her her thyroid pill, realizing her pill cutter was broken and trying to use a knife unsuccessfully, doing her hair (which is basically a nightmare), getting her dressed, putting her shoes on (with orthotics), and changing her clothes after she had a diaper blowout.  I finally dropped her off at daycare and called Tom almost in tears wondering if it will ever get any easier.  I feel like half our lives are spent fighting with her to do things we need do; like washing her hair, combing her hair, putting her hair up, trimming her nails, getting her dressed, taking her thyroid pill, not throwing food and her cup; sometimes her shoes, teeth brushing and nebulizing can be tricky but not as much as the other stuff.  The other half of the time she's sick (and many of those things overlap with being sick).  I was upset over having had such a difficult start to the day and then I felt so completely guilty for not being able to just suck it up and take care of my kid.  I went to the gym and in between sets I read an article that Tom had sent me called "8 Lessons my Baby with Down Syndrome has Taught Me" and I started to feel a little better.  It put my morning in perspective (especially the part about patience).  I do understand, more than a lot of other parents that I know, what this mom means.  But I also know that as a human, I'm just not capable of always looking at the positives.  Some days it just sucks.  

Like it sucked that Tera ended up throwing up yesterday afternoon at school resulting in me having to go pick her up before I even had a chance to shower (I was in crazed cleaning mode).  It hasn't happened again since then, she has no fever, and she's acting totally fine so who knows what the reason was, but it also meant she couldn't go back to school today.  So I get her home and she proceeds to go into tornado mode and within a half hour of being home had emptied her books, a cabinet, and a drawer onto the floor.  At one particularly weak moment, I cried when she repeatedly did the same thing I had asked her not to do.  This was a sore spot for me at the time because I had just asked her daycare teacher what was holding her back from moving up to the next classroom and it really boils down to following directions.  The direction following is mostly centered around the bathroom for them.  In the next room they potty train and as a result, always have the bathroom door open.  This is a problem when Tera is in there because she's constantly going in and playing around the toilet which can be dangerous if someone doesn't have their eye on her.  So as I'm sitting in our living room, asking her over and over to stop playing with the cord behind the table, I start crying because she can't or won't follow directions and it's holding her back.  It's a hard thing to know that your child isn't capable of something or is and just won't do it.  I do believe in my heart that she is capable of doing what she is supposed to do, but I don't think developmentally in this area she is age appropriate and that hurts to realize.  It was easy for us to work with her on gross motor skills, even speech is something we can practice easily enough, but direction following is something she's working on with all her therapists and it's really hard to practice.  I'm tired of hard.  I want something that's easy.  She used to be a great sleeper and we always said that at least with all her other difficulties, at least she's a great sleeper.  That's not even the case anymore.  Currently she's a pretty good eater and that's about all I've got.  That and her smile can change my whole day.  

So imagine my concern at what today could bring with just the two of us.  She was up to an early start at 5am and I tried to stay positive as Tom left the house wishing me good luck and telling Tera today might be a good day to start saying, "mama".  And you know what? So far, it's been one of the good days.  We played this morning and at one point we had each other laughing so hard I thought she was going to fall over.  I was able to get ready and we went out to the mall so that she could play in the play area and burn some energy since it sucks outside.  This was not the highlight of my day and here's why: for some reason when it's just her and I out in public, I feel incredibly protective of her because I'm always wondering what other parents are thinking.  Do they know she has Down Syndrome? Do they pity her or me? Or do they just see her as another kid? I'd like to think better, but I'm a little too cynical to believe the best in everyone so I just want to cover her and protect her from their curious eyes.  Most of the parents there are sitting on the little benches either talking with someone else or on their phones, but I was following her around everywhere she went mostly so that she didn't get hurt or hurt someone else which failed miserably when I sat down briefly for the first time and she pulled a little boy's hair and made him cry.  But this was exactly what I was trying to prevent because in my head I was concocting all these imaginary conversations this woman would have about the little girl with DS that pulled her son's hair.  I apologized repeatedly for her and the woman genuinely seemed to not mind, but I still felt awful and that was when I just wanted to run with her and leave. It didn't ruin my morning or anything; far from it.  We walked around a little while longer, visited with the sister of one of our friends who works there, and had lunch just the two of us.  A Mommy and Tera sharing a sandwich while she smiled at me lunch and she ended up falling asleep before we got out of the parking lot.  

So it's been a lot of emotions I've experienced over these past few days and I'm supposed to be on vacation! At least for now I need to try and get something done while my my sweet girl sleeps.  

Thursday, March 21, 2013

Happy World Down Syndrome Day!

I would call this World Down Syndrome Day a success.

My students had this written on our back board when
 I came in this morning.
On Tuesday this week I offered my classes an extra credit opportunity.  They could answer four questions about DS and World Down Syndrome Day and turn them in, and for a few additional points, they could do it in a more creative and decorative manner so that it could be displayed in our classroom.  I was overwhelmed by what was turned in.  Some of my students really impressed me with their statements, their creativity, and most importantly, their effort.  In one of my classes we had some time to answer some of the questions they asked and it was a really great conversation.  I know that these kids will walk out of my room at the end of the year knowing so much more than they did when they walked in; in so many ways.  What I'm most proud of them for is my belief that should they encounter someone with DS they will treat them with respect and in many instances if they were to come across some with DS who wasn't being treated well, they would stand up for them.

I also sent out an email to the staff at my school and got such great responses from them as well.  I suggested they ask questions if they didn't know something and that they verify things they thought they knew.  I was so touched by the responses from my coworkers.  Some asked questions, some shared stories with me about individuals they knew that had DS, and some just thanked me for helping to spread awareness.  Even my principal came up to my classroom to ask me to tell him something about DS.

There were endless comments on Tera's picture on Facebook with her sporting her rockin' chromosome tshirt and many more shares of her posts and people's own posts showing their support of DS.  With every new post and fact I was reminded over and over of the good in all the people we care about.

One of the most emotional parts of my day was coming across the Facebook post of our good friends; friends who just happen to be the parents of Tera's best friend.  They bought DS tshirts for everyone in their family (and that's six people) and they were all wearing them today.  They have been amongst Tera's biggest supporters (and she has many) and in the words of my friend's post, "if you don't believe two year olds can be best friends, you have never seen them together". I know I have said it here before, but I simply can't explain how reassuring it is to me that Tera will have a friend and peer who will have to be told Tera has DS and is different because she just won't know anything but the Tera who's always been with her.  Our friends are the kind of parents that you hope your kids' friends have because they teach their kids respect, inclusion, and what a good person should be.

At Tera's daycare, all the teachers posted signs about World Down Syndrome Day around the building and they asked the kids to wear crazy colored socks (check out the reason here).  It was so awesome to see how supportive everyone who takes care of her is (not that we didn't know how great they were before).

My friends wore blue and yellow, my students did their research, our family and friends posted wonderful things about the day and Tera on Facebook, and I was reminded that though we have our difficulties, this is not the end of the world.  Tera will flourish and teach and inspire and will always have more support than she could ever imagine.

Happy World Down Syndrome Day everyone!

Tuesday, March 19, 2013

World Down Syndrome Day-Just two more days...

I haven't devoted as much public time to World Down Syndrome Day this year as I did last year, but it is no less important to me this year.  Last year I attempted a full month of blogging to help promote World Down Syndrome Day and this year I felt it just wasn't a realistic expectation of myself; especially considering how February went in our house.  But this Thursday, just two days away, is in fact, World Down Syndrome Day.  Do you know how you'll celebrate?

This year Tera and I will be wearing our DS tshirts and I have given my students an opportunity for extra credit and a chance to further their knowledge and compassion while hopefully helping to spread awareness for DS.  I have been very open with my students this year, and last year, in regards to Tera's health, complications, successes, and stresses.  They are very understanding and have asked excellent questions along the way.  This year for extra credit, I asked them to answer four questions: why World Down Syndrome Day is celebrated on March 21st, what they have learned about DS this year that they didn't know before, what they'd still like to know, and how their opinion of DS has changed if at all.  I've already had two turned in and I can't wait to see how the rest turn out (they're due on Thursday), but be sure that I will be sharing.

If you are also a teacher, here is a link to a letter from Chris Burke (Corky from Life Goes On) to students.  It's short and I think it helps spread the message.  If you're not a teacher and would still like to help dispel myths and promote awareness, here is the a link to a fact sheet about DS and one about myths and truths.  Looking for other ways to help with awareness? Here are some more links:

Preferred Language Guide

A beautiful video featuring some beautiful people

Another beautiful milestones video

Please consider sharing just one fact about Down Syndrome on Thursday with someone who might not know it, and make it meaningful.  If you read one of the facts or myths and thought to yourself, "Hey, I never knew that!", consider sharing it with someone else.

From her 1st year pictures, but one of my favorites.
There is no cure for Down Syndrome, this campaign is about awareness so that my daughter can hopefully grow up in a society where she is not stared at for anything but her undeniable beauty.  A society where people are not afraid to talk with her, but instead feel lucky to have the opportunity to interact and learn from her.  A society where she is not pitied or looked down upon, but instead where she is held to high standards and expectations and given the chance to reach them.  Please help us and know that you are changing the world one fact at a time.

Sunday, March 17, 2013

Welcome back worry.

I haven't posted in a while because life was pretty normal for us.  Tera was healthy, we were adjusting to our life without the pitter-patter of little furry feet, work was crazy for both us, we were finally getting in somewhat regular workouts, and life was just peachy.

I've had some passing bouts of emotional distress, but nothing out of the ordinary for me.  Not a whole lot has changed I suppose, except for the Tera being healthy part.  We had a pretty good run of two weeks, but as they say, all good things must come to an end.  I don't want to go through all the details of the past two weeks because I'm never as happy with my posts when I do that.  I just felt it was time to get some stuff out, the first of which is, I'm not ready to go through this sick thing again yet.  I mean I will, because I have to, but I don't want to.  I don't want her to have to.  At this point we're pretty sure we're dealing with a sinus infection again, but then Friday the cough kicked in.  We've upped the nebulizers again, trying to keep her nasal passages as lubricated as possible, and basically just hoping for the best but preparing ourselves for otherwise.  My biggest fear right now, other than the potential for pneumonia again, is her becoming more and more resistant to antibiotics.  She spent three straight weeks on an antibiotic the last time; the last two of those weeks on a very strong one.  I just can't fathom putting her on one again already.  And if she's sick again because the last one didn't completely clear up, then I'm not sure where that leaves her.

I'm worried, again, and want so very much for her to just be able to be a "normal" kid for a while.  One who doesn't have to wake up and go sleep every day with a mask attached to her face so she doesn't end up in the hospital again.  It's not the overwhelming worry I feel when she's really sick, but it's creeping in again.

Today my brother-in-law and Tom rearranged some furniture upstairs so that Tera now has our old bedroom furniture in her room.  We gave her more space so she can play in there and now her room looks like a big girl room and just reminds me that she really is getting older.  I see it in so much of what she does and how she acts lately and it's reassuring to see her progressing the way that all kids do and at the same time makes me miss when she was so small and dependent on us.  This is the way that our life should be.  The very normal worries of lamenting a child growing up too fast for a mom to believe.  Not the worries that accompany every cough, runny nose, and watery eyes.

Yesterday after spending the afternoon at Tera's best friends' birthday party and watching the two of them just revel in each other's company, Tom and I came home, relaxed, and talked about some plans for our house and a vacation.  I felt so completely lucky in my life.  My family, my friends, and my life, with all that it encompasses is one that I wouldn't trade.  I would prefer for my baby to not have to suffer through being sick every other week.  I would love that our time could be better spent than at doctor appointments and worrying about what new skill she should be working on.  But every single time that beautiful face smiles that most amazing smile, she melts my heart and I would never risk losing any part of her to make things any different.

So once again, we'll see what the night and the week bring and try and deal with whatever comes our way.

Thursday, March 7, 2013

Goodbye to our sweet kitty

A lot has happened since my "Tera birthday post" and I don't really want to rehash it all again in detail so here are the highlights:

1.  Tera's two year check up went well and she's now finally in the 28th percentile for weight and height (I'm a little doubtful on height just because her endocrinologist does a more exact job and it was lower when he did it).
2.  Her orthotic check also went well and he says she's doing great with them.
3.  Thursday night my sister and her boyfriend flew in for the first time in a year for Tera's birthday party and stayed with us.  They were a huge help and I miss having them around :(
4.  Saturday was Tera's second birthday party and we had about 60 people, good food, and a great time.  It's always a bit incredible to me to see how many people support her and love her.  We are so grateful to everyone who was able to come and share her special day with her and us.
5.  Sunday we spent some more time with Tom's parents who were also in from out of town and also a huge help with everything and then with my sisters and their significant others.
6.  Then came Monday.  

I had scheduled Tera's swallow study for Monday morning at ten and we had to go to Evanston Hospital for it.  It didn't take us too long to get there, but then we had to walk across most of the hospital to get from the garage to Radiology.  If you're not familiar with a swallow study, here's what it entails: they put Tera in what basically looks like a car seat and try to get her to drink from various cups with various types of liquids all containing barium and as she drinks a radiologist takes a video of her and you can see on a monitor where the liquid is going when she's drinking.  As you might imagine, getting a two year old to cooperate with this type of activity can pose a challenge.  It wasn't as bad as I thought it might be, but it wasn't easy to get her to drink when we wanted her to and they didn't get as many shots of the thicker liquids as they wanted to, but there was enough to make a determination.  It turns out that while she's not aspirating every time she drinks (which is good), she is aspirating some times (which is bad).  She did the worst with straws so we need to eliminate using straws and go to just using sippy cups.  We don't have to thicken all her liquids, but when she gets sick and it's harder for her to control things, we need to do it.  Her biggest problem seemed to be residue sitting in her lungs that she just doesn't realize she should clear out by coughing.  As time goes on, the residue collects bacteria and causes pneumonia.  We'll eliminate the straws and try to slow down her eating and drinking and also keep giving her the Pulmicort (nebulizer treatment) twice a day until we see the pulmonologist again at the beginning of April.  

But that wasn't the worst part of our day; that would come when we got home from the test and grocery shopping to what we thought was our cat having died.  We had already made the decision that morning to bring her in that afternoon and have her put to sleep because she had taken such a turn for the worse over the weekend.  Tom made the arrangements to drop Tera off at daycare for an hour and we were going to take her in, but she didn't make it that long.  Tom went up to check on her and thought she had already died, when in fact it just that she was very close.  We agreed he had to take her in immediately and after a lot of tears and my final goodbye to her, he took her in.  When he got there, he pet her for a few minutes and she ended up dying a few minutes later with no intervention.  It was a shitty day from start to finish.  

Tuesday I ended up having a snow day and dropped Tera off at daycare for the morning (until they closed) and while I was able to get some things done, I just couldn't get over how empty our house felt and by the afternoon I had fallen into a funk.  I was adjusting to my sister having to leave again, all the excitement and craziness of the weekend, and mostly to both our pets being gone.  Tom and I have been together for almost 16 years and we've had Feyla for 14 of those years and Jaina for nine of them.  Before I moved out of my mom's house, our family had a dog also so I haven't been without a dog or cat for over twenty years and it just feels so empty to me.  I keep thinking I'm hearing her meow or that I see her out of the corner of my eye.  I know it will get better, but it's still pretty sad for me.  If I had to describe both Monday and Tuesday, and really even Wednesday, it would be sad.  

This would again be one of those times when I think to myself, things have to get better soon don't they?
On the plus side, Tera seems to be healthy, she just finished her last dose of her antibiotic, I have coworkers that never fail to make me laugh and smile, good friends to be sad with me, and a family to support us and help us.