Thursday, September 29, 2011

31 for 21

In October I will be joining many others in the Down Syndrome community and attempting to write a blog entry every day during the month of October for Down Syndrome Awareness month.  The campaign is 31 for 21 and the idea is to create a new entry every day to help raise awareness for Down Syndrome.  Not every entry has to be about Down Syndrome, but each one should mention the cause.  I will attempt to add the button (not sure how to do that yet) to support the 5th year of the campaign 31 for 21. 

I haven't quite figured out what to say for 31 days (although those who know me will wonder why I'm worried about that), but I do already have plans to discuss this with my kids at school as most, if not all, of my current students are unaware that this particular campaign and awareness month affect me and my family directly.  So I'm mustering up the courage to talk to them about it and will hopefully be able to answer any questions while still keeping my composure. 

I'm guessing not all of my posts will be the most riveting thing ever written, but if anybody could inspire me, it's Tera.  Wish me luck, and bear with me for the next month :)

Thursday, September 15, 2011

Still dealing.

Every time I write a new post, I feel like all I say is how busy things are, but then, for every week for the past 3 weeks, things have been busy!

I'm still struggling with the DS and it seems like I'm struggling with it more now than I was the past few months and I still don't know why.  I guess I'm seeing even more things around me that remind me that our life isn't what I envisioned it being.  And I also think a big part of it is dealing with the stress that goes along with it.  The extra doctor appointments and scheduling therapies when really all I want to do is come home and pick up my baby and feed her, and eat dinner, and put her to bed and then try to finish all the normal things I used to have to do like pay bills, and clean the house, and do the laundry.  But now in addition to those things we have appointments and visits, and reviews, and medication, and a whole bedtime ritual for dealing with congestion and ear wax.  There are definitely times when I realize how our lives have changed just by the addition of a baby (any type of baby) as have our conversations with our friends (who knew how much you could discuss the eating habits of your kids?).  But there are also way too many times when I realize how our lives are different from other people around us because of the DS.

We took Tera in for her 6 month checkup last week and she's doing great.  She's up to 14 lbs and 26 inches.  On the typical chart she's in the 12th percentile for weight and 65th for length (which isn't surprising considering I'm 5'9" and her dad is 6'6") and she's alert and looks great.  But then we got the results of the thryroid screening we had done and it showed her TSH levels were elevated indicating early hypothyroidism. So now she's on Levothyroxin once a day, probably for the rest of her life, and we have to crush the pill up, put it in water and then use a dropper to get her to take it.  Luckily, she's been really great at taking it so far.  But that of course means the addition of another doctor.  This one, an endocrinologist, couldn't get her in until October 27.  We also have an appointment with an ENT the week before. 

I just keep looking at her and I'm so in love with that little face that it makes me want to cry knowing we made something so amazing.  And then I start on the emotional rollercoaster and sometimes it goes up when I think about how lucky we are, and then sometimes it just does this nosedive and flips me upside down to the point where I don't know how to deal with any of it. 

Today my sweet girl is home sick with an upset tummy and I have to say, I've loved being home with her again.  I wish it wasn't because she wasn't feeling well, but getting to spend my time with her this morning and just holding her today was so wonderful.  But tomorrow, it's back to work and school (hopefully) and then it's the weekend which Tom and I look so forward to and not only that, but on Sunday she makes her fashion debut at the Gigi's Playhouse Down with Fashion Show.  She's already been such a hit there, but I can't wait to show her off again :)

Sunday, September 11, 2011

It's the dreaded Sunday night again

As another weekend comes to a close I look back over the past 2 days and wonder where the time went.  This weekend seemed less busy than last weekend, but full of things to do nonetheless.  We got our grocery shopping done on Friday night which while not all that exciting, was definitely much appreciated this morning when we didn't have to do it after our ritualistic trip to Starbucks.  Instead we got to spend a truly enjoyable afternoon visiting my sister in law and still healing brother in law for snackie football Sunday.  I missed most of the game, but had a great time visiting with them and our best friends and their new little girl who we hope, when they're closer in age, will be just as good of friends with Tera as we are with them. 

I haven't been sleeping well for the last month or so and my husband keeps telling me that as long as I'm not sleeping, I might as well get something done on my list.  Well this morning, after getting up with Tera, feeding her, reading to her, playing with her, and putting her back down, I did just that.  I made all my lunch stuff for the week, started the dishwasher and picked up the kitchen.  This alleviated so much stress this afternoon, it was definitely worth feeling tired right now from not trying to go back to bed for some extra sleep that wouldn't have come anyway.  I'm definitely still trying to find my balance of managing taking care of the house, Tera, and myself, but I'll get there.  Eventually...

I used to get major anxiety on Sunday nights and I anticipated this being the case this school year and that it would even possibly be worse since I would not only be returning to work on Monday mornings, but I would be doing it and leaving Tera at the same time.  I have to say, that while I don't enjoy Mondays still, and I always wish I had more time with my family at the end of a weekend, I'm handling it better than I thought I would. 

So that being said, I'm going to say good night and hope that I can maintain what I've established as the motto for myself and the girls at work: "Be positive, not peppy, but positive."

Sunday, September 4, 2011

It strikes again...

The past few weeks have been VERY busy.  To start, my brother-in-law had major surgery on his jaw to remove a tumor.  It was a 22 hour surgery, he was in the hospital for 12 days, and is now recovering safely at home.  Then, I went back to work for the first time in 6 months.  Then our best friend and his wife had their first baby.  Oh yeah, and I had my first real break down in months in regards to the DS.  We went from worrying and thinking about everything that was coming up (the surgery, the baby, and my return to work) to living it.  But at the same time as all of that was going on, we also had to adjust to Tera being at daycare during the day (where she is doing great) and all that goes along with bringing her there (packing bottles and food) and scheduling her therapies while both of us are working.  Needless to say, it's been an incredibly stressful, busy, and emotionally intense few weeks.  I haven't been sleeping and it's not because we have a baby at home. She sleeps great, I just don't.  We've had 2 straight weeks of my husband not being home after work almost any day of those weeks leaving him to deal with all of the hospital visits and family stuff and not being able to see his little girl, and me to handle the unpacking and repacking of her stuff and mine and then my husband and I both collapsing at the end of each night into bed. 

Now it's probably not surprising that in that time with all that we've had going on, that I had some minor emotional issues.  Ok, maybe not so minor.  I've had little sleep and feel like I can never turn my brain off at night and in those times of my life that the things I felt like I had under control, come back not so subtly to remind me that I don't.  So on an otherwise normal day (as normal as it can be lately), I'm sitting at my desk at work during my prep period and looking at the pictures of the most gorgeous little girl on this planet and all of sudden I feel my heart breaking and tears welling up.  I can honestly say from day one of her life, that my daughter is the most beautiful thing to me on this entire planet.  Her face (and the rest of her) bring me so much joy there are times when I feel like my heart will explode with love.  Then are the times when I look at her face, and the DS features seem to stand out to me more than they usually do.  This has never once lessend my love for that face, but it has been a slap in the face to remind me that she has that extra chromosome.  I've come to the conclusion that what seems to happen is that, while I never forget that it's there, most of the time I just accept it as our way of life and don't dwell to much on it.  Then there are other times when it hits me just what it means to us and her and it makes my heart hurt to the point I don't know how to handle it.  That's what happened on Thursday.  In one of my absolute favorite pictures, her features just stood out more than usual and it I almost lost it at work.  I found some ways to cope, made it through the day, and then raced home as soon as I could to see my baby. 

Friday was ok, then Saturday came, and with not much more sleep to go on, it happened again.  This time at least I was at home, my husband was with me, and so was Tera.  I still can't explain what brough it on, but it's mostly the thought of, "why us?".  I typically don't dwell on that sentiment, but in the last few weeks, with everything going on and trying to fit her therapies into our new schedule and the acknowledgement that she is different, I just couldn't deal.  So I cried uncontrollably into my husband's chest, and held my my sweet baby and just kept crying.  Because it's not fair.  But these are the cards we've been dealt and while I know these episodes won't end, I just have to hope that they happen more at home than at work and that Tera is nearby and can remind me that no matter what, we are lucky. 

One of the things that has made this more bearable is that one of my best friends and and an extremely talented photographer, did Tera's 6 month pictures last weekend.  I can't believe it's been six months already and while I can honestly say I don't regret at thing about how I've spent the last 6 months, it's still hard to believe how fast it's gone by.  She's grown so much and accomplished so much and I'm just so very proud of her.  So I'll end this on a happy note and say that we are enjoying this long weekend together as a family and share with all of you just how much she's grown.  I love this little girl more than I will ever be able to express. 

Tera at 8 days old

Tera at 6 months old