Monday, October 31, 2011

Day 31

Today is my last official "31 for 21" post.  This is bittersweet for me as I won't be racking my brain late at night for ideas when I'm exhausted, but I will also have to start coming up with witty titles again when I attempt to continue my blogging experience. 

Halloween is one of my favorite holidays and I'm always sad when it comes to an end.  I love my Halloween decorations, the scary movies, coming up with clever costumes (which I did not do this year), and the weather of course.  Yes I love the cold, windy, overcast weather that just seems to perfectly capture the Halloween spirit.  I'm also a little sad that this is the end of yet another "1st" for Tera.  I have to say, she was one damn cute Jedi Master, and we were able to get in most of the Halloween experience.  We didn't get to a pumpkin farm like I always want to, but we did get to experience another fantastic carving party held by our second family (and our pumpkins cost $2 each). We didn't go trick or treating, but honestly, that wasn't much in the plan because dragging my 8 month old, perpetually congested and prone to every germ imaginable daughter outside in the 40 degree weather didn't really seem like the best idea.  Oh yeah, and she can't eat candy.  We did get lots of pictures and she was able to visit her Auntie Cathy and her first graders and spent a whole day with her Papou while Yia Yia went back to work for a day. 

It seems as though all of her firsts have been like this.  Each time one comes and goes I feel like I didn't do something I could have or didn't take full advantage of it and then it's gone.  But really, when I take a minute to think about it, anything I might not have done, probably wasn't that important anyway. 

This is one of those lessons I'm constantly learning.  Just yesterday for example I was going to try and get some work done and looked up to see my baby was playing on the floor and I realized, the work would still be there when she went to bed, but that I didn't want my weekend to end without having played with her a little more.  I have definitely had a few times when I just wanted to hold her, or rock her to sleep, or be silly with her and something hasn't gotten done.  But so far the world is still spinning, my house is still standing, and I haven't once regretted spending that time with her.  But I have regretted spending my time doing other things when I could have been with her.  I know this will always be a struggle for me, but it's definitely easier to make the choice of "should" and "want" when I look into those amazing eyes and her face just lights up. 

Thank you again to everyone who has followed me during this amazing journey this month.  I hope you'll continue to read and I of course promise pictures as an incentive...

Sunday, October 30, 2011

Day 30

Only 2 posts left in my first "31 for 21" project and I'm quite proud of myself.

Tonight I've been inspired by my husband, but mostly my brother-in-law.  When looking back on the year 2011, I think we, as a Theodore family, will look back with mixed emotions.  It's been a rough year as a family.  Of course we were overjoyed by the birth of Tera, but obviously that came with the news of the DS diagnosis and also a 7 day stay in the NICU.  We thought that would be the hardest thing we as a family would have to endure, although it was only February and we should have known better...

Last spring Tom's brother started experiencing some pain in his jaw and, long story short, a few months later it was finally discovered that he had a mass in his jaw that regardless of test results, was going to have to come out.  In mid August he finally underwent an almost 20 hour surgery to remove a portion of his jaw and rebuild it with a bone grafted from his leg.  He was kept unconscious for about 4 days and in the hospital for 14.  When he was finally able to come home he was on crutches for the leg surgery, a feeding tube, and a trach tube.  He was also given the official diagnosis all of us had hoped to avoid; the mass was cancerous.  Prior to surgery, his doctors had already decided he would undergo radiation treatment after he had healed to ensure any risk of cancer would be eradicated.  He healed remarkably well and is now entering his 3rd week of radiation.

During his recovery, we were able to bring Tera over to visit him and she was in perfect form each time.  She smiled, rolled, blew bubbles, and was her usual cheerful self.  It was amazing to watch her uncle's face light up when he saw her and we were once again amazed at the effect she is able to have on people.  Her Uncle Mike was one of the very first people to visit us in the hospital and was second only to her Aunt Cathy in holding her.  They were one of the first people we told after her diagnosis and they were there for us every time we needed them in the hospital; to visit, bring us food, help us take care of the dog, and just be there for us.  When Mike was going through his recovery, we tried to make sure we sent him regular pictures of his favorite niece as often as we could and each time we got a grateful reply.  He loves being able to hold her when we visit and I can't wait until she's able to goof around with him because I think the two of them will always have a special bond.  Two people who will have overcome diagnoses that most people dread hearing about.  Two people who will have to work just a little bit harder at some things, and two people who will always be there to make the other one smile. 

Tera and Uncle Mikey during pumpkin carving.

Saturday, October 29, 2011

Day 29

Tonight we are baby-less.  My mom has graciously offered to suffer through baby-sitting Tera overnight.  Or maybe I should say we were gracious enough to let her steal Tera because usually when I pick her up, my mom is the one thanking me for letting her stay. 

When I was pregnant our family was already arguing over who was going to get to watch her when.  My grandma joked that she had better be a good baby or everyone was going to regret offering to baby sit.  Fortunately, that has NOT been the case. Not even close.  She has had her moments in the last 8 months, this afternoon for an hour was one of those times, but for the most part, she's the easiest kid in the world to watch.  She sleeps through the night (most of the time), she wakes up happy, and she can play by herself for periods of time so you're not committed to her every second she's with you.  I do however know for a fact that both grandmas get far less sleep than Tera does when she stays with them because they're both constantly listening to her and checking on her.  But they love every second of it. 

My mom has 3 girls and kind of was hoping for a grandson, but is also obsessed with babies and so it made no real difference when she found out we were having a girl.  She and my step dad figured they already knew what to do with girls so they were just better prepared.  My mother-in-law had 2 boys and was so excited to finally have a little girl.  Since she is a talented seamstress and knitter, Tera has already been on the receiving end of so many hand-made gifts (including her pumpkin hat).  She loves being able to pick out pink things (though she tries to limit it and was the one who bought my skull diaper bag) and puts a bow on Tera's head every time she watches her. 

Then there are the grandpas who are just over the top in love with her.  Their time for fun will definitely be coming in the next months as she is able to do more and more.

Her aunts and uncles are a whole different story.  I have 3 sisters and a sister in law who might have just been obsessed with this baby before she was even born.  Now that she is here, they are the most insane! I don't know that gender would have affected the number of gifts she's already received, but I think being a girl, has given her just a bit of an edge.  And her uncles are just perfectly suited to be the most fun this little girl could experience.  They will also be entering their prime time in her life in the next few months as she becomes more aware of the people around her and can really start playing.  Although she is definitely a soft spot in all their hearts already...

If you couldn't already tell, or didn't know, Tera is one of the luckiest little girls in the world.  She has a family and group of friends who would do anything for her and will always be there for her.  People who have spent time learning about Down Syndrome and supporting us and the resources available to us.  People who have taken an intense interest in her development and growth.

There are times when this journey has been so overwhelming and during those times I try to remember that all those people are there for her, and us, and it makes the stress and worry, that much more bearable.  Thank you to all of you are reading this and to those of you who are and are a part of her family, by blood or not, thank you as always.  We couldn't do it without you. 
The face that started it all...

Friday, October 28, 2011

Day 28

So it's my last Friday blogging for a while.  As I said before, I am going to try and keep this up after October ends, but I'm guessing since Fridays have been the hardest day of the week all month long, I probably won't find the motivation to keep this up on those days. 

Since Tera doesn't go to Montessori on Mondays, I decided to dress her up in her Halloween outfit (yes outfit, not costume) today so her teachers could see it. 


Tomorrow is a big day for Tera because it is her first year carving pumpkins with our "other" family the Kostelancik's.  I'm guessing I'll have many more pictures to share in the next few days so because it's Friday and I'm always tired, and because Tera decided it was play time from 12 am to 1:30 am, I'm posting these two from this morning and calling it a night .



Thursday, October 27, 2011

Day 27

For the most part, the last 26 days' topics have come fairly easily, not every day, but most days.  Today I'm stuck.  So instead of thinking about how things are different from the way I envisioned them, I'm going to focus on what I want for Tera's (and our) future. 

I want Tera to be her own person.  I look back on when I was younger and remember how I wanted to be like everyone else.  It wasn't until I was a little older (and when I started dating Tom) that I felt comfortable really being myself and sharing my interests and hobbies.  I want her to have her own unique interests and hobbies and to never be ashamed or afraid of sharing them with other people.  If she wants to dye her hair blue and style it in a mohawk (I mean again of course), I want her to feel comfortable asking us to do that (I have a hard time imagining we'll say no).  I want her to have lots of friends, but ones that are meaningful to her and important and care for her the same way she'll care for them. 

I want her to try hard in school and always do her best.  If she is treated unfairly or not expected to work up to her potential, I will fight like hell to make sure she is.  And if she misbehaves or is disrespectful, I will be the first person telling her she knows better and dishing out the consequences. 

I want her to have an amazing relationship with her family.  I want her to be insanely close to her aunts and uncles and have a truly unique relationship with her odd parents (our version of god parents; yes we know we're different).  I want her to be excited every time she gets to see her grandparents and know that they would do anything for her. 

I want to take her on shopping trips and get our nails done and have the same amazing relationship with her that I have with my mom.  I want her to share hobbies with her dad and learn how to install stereos and build things and watch movies together. 

I want her to be an athlete in a sport she loves (we'd choose something on ice, but it's not the only thing she can do) and join activities and find something she truly excels at. 

I want her to be able to choose a career, not just a job, that she loves.  I want her to find love and happiness and get married so I can watch her dad walk her down the aisle. 

I want her to be independent and strong and sensitive and caring. 

I know not all of these things will happen, but I also know it won't be because she can't, it will always be her choice. 

Wednesday, October 26, 2011

Day 26

Tera is 8 months old today!!!!

I can't believe it's been 8 months already.  I feel like I've experienced more happiness, sadness, stress, joy, love and worry in this time than I have in all my life.  However, to celebrate, we decided to have her hearing tested.  I know, we really know how to live it up...

Since she was given antibiotics at birth, and one possible side effect of the antibiotics is hearing loss, we need to get her hearing tested about every 6 months.  Also, another bonus to her bonus chromosome is an increased susceptibility to hearing loss.  She passed her newborn hearing screening, and then Lake Forest Hospital sent a letter saying we should get it tested at 4 months because of the antibiotic so I had to take her in for an incredibly inconvenient and pain in the ass hearing test. 

A few months ago her PT suggested we take her into SEDOL (Special Education Dept. of Lake County) to get her hearing tested again.  Since this is where Tera's services will be when she turns three and as long as we stay in Lake County, all the way through high school, she thought it would be a good idea for them to have a baseline assessment and it's free to us.  So after forgetting for a while, I finally made the appointment and today we went. 

I have to say, out of all of the appointments we've had with doctors and specialists, this was one of the appointments I was least concerned about.  Tera's always responded well to us and noises around her so we had no reason for concern.  This test was MUCH easier than the last one.  We sat with her in a room and one of the women called to her and said things and played noises from another room and the other woman read the reactions and expressions on her face to judge if she was hearing them.  She did very well on this part and they were extremely impressed with what she was able to do.  Then they had to do another test in which they transmit sound into her ear and measure how much of an echo it produces in her ear drum to see if there's a blockage or fluid.  Unfortunately, she didn't do as well on this part.  The echo came back as pretty much non existent so it means she either has a blockage or fluid.  They were aware of the fact that she is on medicine right now for her sinus infection and that that could be causing it so we are apparently going back in 3 weeks to get it retested.  At this point, if the same thing happens, we'll probably have to follow up with the ENT again to see what could be causing it. 

The two women administering the test couldn't have been nicer or more impressive in their abilities.  At the very least, if this becomes a regular test she has to take, it will be with another set of people in this journey that I'll be happy to work with. 

The downside to this little adventure today was that due to the fact that every road in Lake County is under construction, and that she had only apparently taken a 30 minute nap and had a wet diaper, the ride home was slightly less than enjoyable.  But we got home, gave her a bottle, and I finally got the snuggle time I so anxiously await each day. 
My little pumpkin :)
I find it funny I take so many pictures when she's in her car seat, but it's the only time she stays still!

Tuesday, October 25, 2011

Day 25

Tera's physical therapist attended a conference this past weekend at Lutheran General called Continuum of Care for Children with Down Syndrome.  She had told us about it a few weeks ago and it really did sound interesting.  The first conference I might have attended in 10 years that would have the MOST impact on me; just not as an educator but as a parent instead.  However, we've had some busy weekends and as much as I want to educate myself on everything I can to help her, the idea of spending 8 hours away from her on the weekend didn't seem like time best spent.  There will be other opportunities...

However, her therapist did attend and took a packet with all the information provided at all the individual seminars for me.  It included all the PowerPoint presentations from each session.  I've only had time to flip through them, but I'm looking forward to seeing if there's any new information I can learn in there. 

What I would like to do is share some of the information/statistics from the conference with everyone seeing as how the whole point of this project is to raise awareness.  So the next time Down Syndrome comes up in conversation, consider yourself armed with information and feel free to pass it along and help spread the awareness.  Some of you may know some of this information already, but some of it seemed less widely known so here it is.

  • Down Syndrome occurs in about 1 in 700 live births
  • More than 60% of those conceived will spontaneously miscarry
  • About 20% are stillborn
  • (more commonly known) the incidence is greater with advanced maternal age
  • (somewhat more commonly known) 80% of children with Down Syndrome are born to women under the age of 35
  • In 1929 the life expectancy for an individual with DS was 9 years.  In 1947 it was 12 years.  Currently it is into the 50's, 60's, and 70's.
One of the big topics floating around the DS community is the upcoming release of a non-invasive blood test to check for Down Syndrome during pregnancy.  There is a lot of talk about how this test is viewed by parents of kids with Down Syndrome because they fear it will result in more terminated pregnancies if people find out prenatally.  An estimated 90% of pregnancies with a prenatal DS diagnosis are terminated each year.  Many current parents of children with DS feel that with the availability of the new blood test, this number will go up.

Personally, I can't imagine my life without Tera.  As I've stated before, the Down Syndrome is obviously a part of her, but I try not to let it define her.  But if I was given the choice when she was born to say, yeah, go ahead and remove that extra chromosome so that I can fully enjoy my child and not have to worry about all the therapies, doctor appointments, wonder how "high functioning" she'll be, if she'll have friends when she goes to school, how she'll interact socially, and how independent she'll be when she's older, I'd probably do it.  Controversial or not, that's how I feel 8 months into this little adventure.  Maybe I'll feel differently in a few years.  But it's hard not to love that face the way it is...

Monday, October 24, 2011

Day 24

It's hard to believe that my first blogging project is in the home stretch.  I've received more positive and encouraging feedback than I ever imagined.  I will admit, some nights have been more difficult than others, but a few people have encouraged me to continue this beyond the 31 days and I do believe I'm going to try.  I like the idea of being able to look back on this time in our lives a few years from now and reflect on how far we've come.  I've always enjoyed and benefited from journaling and I really like looking back and reading what I wrote.  Many times I laugh at how something that seemed so important at the time, seems trivial when I reread it.  I try and reflect and adapt regularly as a teacher and though I know how important and effective it can be, I'm not always good at doing it in my personal life.  I truly hope that I can use this in helping me be a better wife, mom, friend, sister, daughter, and teacher. 

Tera was much better today and we're hoping for an illness free week (or even more if possible).  She's been without fever for over 24 hours and was in much better spirits today with Yia Yia and Papou watching her.  Tomorrow she goes back to school and has 2 therapy appointments so we'll see how the day goes, but I'm guessing she'll be in bed early tomorrow night.

One of the things Tom and I have discussed as her therapies have increased is trying to limit her therapy appointments at home to one a week if possible.  One of the big advantages to her being at Montessori is that they are more than willing to let her therapists do sessions while she is there, but even more importantly, they were excited about it so they could learn what strategies to use with Tera to help her reach her highest potential.  So far it's been working out very well and has alleviated some of the stress at home.  This week however, is a little crazy.  She has PT Tuesday, a hearing test Wednesday, ST Thursday, dinner at my grandma's on Friday, pumpkin carving on Saturday, and hopefully visiting one of her favorite aunts and her 1st grade class on Halloween in her costume! I'm exhausted just thinking about it...But either way I'm so excited about her first Halloween.  I have so many memories of this time of year and Halloween is one of my favorite holidays and I just can't wait to share some of my favorite traditions with her.  But I digress onto another topic and it's getting late and as one of my favorite former students likes to remind me, I'm old.  So it's off to bed I go...

These little feet just constantly remind me of complete innocence and utter perfection.

Sunday, October 23, 2011

Day 23

Ok, it's total cop out day. 

Tera's been sick all weekend.  I think we're past the throwing up point, but she still seems to be running a fever.  She was so subdued today and didn't even get crazy during bath time, so we know she's not feeling herself.  She did however seem to find some solace in sucking on her toes, which seems to be one of her new hobbies. I really do not enjoy having a sick baby, mostly because there's nothing I can do to help her.  I'm really hoping that a relaxing day with Yia Yia and Papou tomorrow helps her recuperate.  Now only five more days until the next weekend...

My poor little girl...

Saturday, October 22, 2011

Day 22

So it turns out I can't do it all.  I need to be reminded of this every once in a while.  Unfortunately for me and Tom, it is not something that typically comes during a moment of calm or even as a gradual realization.  I can at least say I am a person who is aware of their faults.  I'm not necessarily good at overcoming them, but I do recognize them.  In my case, it's not even that I'm a total control freak and I don't trust anyone else to do things (that's a part of it, but not the biggest part).  It's more that I feel bad asking others to do what I feel I should be doing. 

But of course one doesn't realize these things until it's too late.  In my case, it typically happens as the result of a completely innocent event that shouldn't mean anything but for some reason is a trigger to my overburdened mental capacity. 

Yes this happened today, no Tom is not committing me.  At least not yet...It's just that one can be chugging along through life dealing with the obstacles as you come upon them when all of a sudden it seems as though there is no more clear path; the whole thing is obstacles.  My current obstacles include a whole lot of work crap that I don't want to go into, and trying to figure out little Miss Tera.  This is the first time in her short life on this planet, that she's had a fever for over 24 hours and 5 episodes of vomiting.  We've also had, and are currently experiencing, episodes of fussiness which while many of you may think is not that abnormal, is VERY out of the ordinary for her. 

She's overly congested, feverish, and has a somewhat delicate stomach right now and again I go back to, is it a normal virus thing? Or is it a, she has smaller than usual nasal and breathing passages which are overly congested making it even harder for to breathe than someone else? We don't even know for sure what's causing the congestion, or the fever, or the vomiting.  I'm not a hypochondriac by nature, but there's just too many things that could be problematic with her. 

So I do not end today's post with a positive spin.  I will just come out and say Down Syndrome sucks.  I would give anything for her not to have to suffer through this and all the other complications she has and will have to suffer through as well.  I know any other kid could have the same problems without having DS, but right now, all I can say is it sucks.  I don't want my baby to be sick anymore.  I want my happy, smiley, warm but not feverish little girl back. 

A picture to remind me of happier, less pukey times...

Friday, October 21, 2011

Day 21

Friday's have been a bit tough for these posts because it's when I'm the most exhausted.  Today is no exception.  I thought I'd actually be able to catch up on and stay on top of some work today and just stay until I was done, but my dearest little Tera had other plans.  Apparently she thought it would be more fun to get an early start to the weekend so she threw up a few times at school and ran a fever.  Mission accomplished; she got me out of school and got Yia Yia and Papou to pick her up early.  I raced around trying to get my stuff together to get her to a 2:30 doctor appointment to try and figure out why this happened for the 3rd time in about a month. 

Fortunately, I have some pretty great coworkers who helped me out and I was able to gather my stuff, pick her up, get her to the doctor, and...learn nothing.  We saw a pediatrician other than her usual one and I liked him a lot.  He was very thorough and basically admitted that he also didn't understand how she could have three separate episodes of throwing up twice, running a fever, and then 12 hours later being totally fine. 

So far tonight she's kept down a bottle, some cereal and some fruit so we'll see what tomorrow morning brings.  Unfortunately, as I've said before, it's really difficult with her because we don't know if it's a normal thing or a complication due to another issue she has.  We're currently wondering if the vomiting and fever in conjunction with the fact that she seems to have only gained a little less than half a pound in about a month means something related to her heart, so it looks like I'm putting a call into the cardiologist next week. 

In the meantime she's sleeping peacefully and we're looking forward to visiting with Auntie Cassie tomorrow and then the Halloween party at Gigi's on Sunday. 

It also means I have to add Oxy Spray to the grocery list because this kid could be the poster child for stain remover.  She'd be like the Gerber baby for Oxy...

Thursday, October 20, 2011

Day 20

It's been a very long couple of weeks filled with a lot of stress, a lot of exhaustion, a lot of frustration, but also some highlights.  Tera has been rolling; LOTS! We really do have to keep an eye on her (she's already dunked her hand into the dog's water dish) now that she can move in both directions.  This was something we worked with her on for a while trying to get her to keep the right form and feel what it was like to do it.  For a while it really seemed as though she just had no interest, but apparently she's a big fan of it now. 

She also loves this new move we call "planking".  It's not really planking (not in either acceptable definition of holding yourself in the up position of a push up or the laying across or on objects for the puprose of humorous pictures), but when she started doing it, that's what we thought of and it has stuck.  What it really looks like is she is trying to do is fly by rocking back and forth on her stomach with her arms and legs in the air.  It's hilarious to watch and she does it CONSTANTLY! At first we were concerned that her PT was going to tell us it was sign of something she shouldn't be doing, but in fact she says it demonstrates a lot of strength.  That's our weird little kid for you.

But one of the things I'm most excited about is she seems to be really close to sitting.  This has been a hard one for me because I've been really good about not comparing her with other kids, but it seems like this particular milestone was one where I kept seeing or reading about other kids either her age or younger who were able to do it already (both with DS and without).  At the beginnning of this week I didn't notice any difference, but we were also preoocupied with her rolling abilities.  Then last night I put her on the kitchen floor to pet the cat (who was not necessarily a fan of this plan) and I tried putting her hands in front of her to prop her up which usually results in her whining and not only did she not whine, but she was able to hold herself up without sliding forward or sideways! I was so excited I showed her teacher this morning who then worked on it all day with her and then this afternoon she was even more stable than usual without even putting her hands down!

The part I've struggled with throughout all of this though, and this will sound strange I warn you, is that it's sometimes hard for me to hear how great she's doing and how she's hardly delayed at all because so far, in all the things I've read, there hasn't yet been an individual with DS that hasn't been delayed at some point.  In my mind, albeit a mind that is tired and overwhelmed, while I love that she is doing so well right now, I keep waiting for the point when she will be obviously delayed compared to other kids.  I know that sounds like a negative way of thinking, but I see it as trying to be realistic.  There is no cure for DS.  She's not magically going to grow out of it.  We've known all along that the reason we started her Early Intervention when she wasn't significantly delayed was to hopefully avoid, or at least minimize as many delays as possible, so in that respect, she's been incredibly successful.  And I know she'll continue to be successful because all indications so far are that she is strong, and stubborn (that comes from multiple places) and determined.  However, I have to be cognizant of the fact that EI won't prevent all struggles and I just hope I can handle those struggles when they come because my little fighter hasn't given me much practice in the "I just wish she could do this..." category.  Oh well, I guess there are worse things I could be worrying about :) Oh wait, I do...

Wednesday, October 19, 2011

Day 19

Today is an anniversary for me.  One year ago today I had my first and only ultrasound of Tera.  Of course, one of the reasons we were excited about the ultrasound was to find out if she was going to be a Tera.  Tom had felt all along, even before I got pregnant actually, that our first baby would be a girl.  I have to say, for those first four months I really didn't get a feeling either way.  I really didn't have a preference on gender, but if I was being forced to choose, I suppose I kind of hoped it was a girl because I wanted to be able to have the same relationship with my daughter as I have with my mom. 

My doctor, who is kind of old school, only does one ultrasound during the pregnancy unless there is cause for more.  So where most women get one at 8 weeks, I did not.  I had so many people around me that couldn't believe I only got one, but for some reason, it really didn't bother me.  I took the whole day off of work because my ultrasound was in the morning and then my checkup wasn't until the afternoon so I figured I would just enjoy the day.  I was able to sleep in, and then excitedly head into the office to see what exactly it was I was carrying.  When the technician put the wand on my stomach, we could see the baby doing flips and turning and moving like crazy.  Ironically, I had just felt her move for the first time the night before.  He asked if I'd had orange juice that morning because that supposedly makes babies move more.  I had not.  It was so amazing to see how active she was.  Unfortunately, she was so active he was not able to get a great picture of her, but was able to tell us that she was definitely a girl.  We kept staring at the screen wondering what in the world he was seeing, but he was pretty confident; we were going to have a daughter.  I was very excited, Tom was characteristically, well, Tom. 

We left the office and Tom had to go back to work and I began calling family and telling them.  Everyone was so excited.  I had seen my little girl with all the parts she was supposed to have and very active.  She seemed perfectly healthy.  Fast forward 5 months when we got the diagnosis and things started to occur to me. We were told she had 3 holes in her heart, one of which was fairly large and could require surgery.  I just kept thinking, how could that not have been seen on the ultrasound? I started reading about these "soft markers".  Physical traits that can indicate DS, but are not proof of it.  And again I wondered, why couldn't they see any of that?


One of the questions that comes up most often from strangers is, did we know ahead of time? And we say no and sometimes they ask, would you find out if you had to do it all over again, and I say no.  We both went into my pregnancy knowing we were not going to do any testing (I second guessed myself once, but we still decided against it) because it wouldn't change anything. If there was something wrong, we would both, but obviously I more than Tom, be so stressed for the rest of the pregnancy, that I could risk the babies health that way.  In hindsight, I'm still glad we didn't know anything.  I am a very anxious person and it would not have been good for me or the baby.  And ultimately, what I think of most is, I know I would have researched the hell out of it and I would have come across more scary information than reassuring information and probably would have assumed all the worst things that can afflict people with DS, were going to happen to her.  Instead, we had a pretty healthy little girl.  The largest of the holes in her heart that they were worried about, closed on its own before we left the hospital.  She didn't have any GI problems. Her feeding wasn't ideal, but it wasn't critical.  She didn't need supplemental oxygen.  But I would have worried about all of these things had I known before she was born.

We are still in the stages of discussing any future children, but have both already decided we would do testing the second time around. As I said, I wouldn't change how we handled it the first time, but I don't think either one of us can handle not knowing what could happen when we know the possibilities now. 

So one year ago today I wondered what she would be like, and today I still wonder that.  But now I have an idea and that has made me more excited than ever to see what the next stage will bring. 

Tuesday, October 18, 2011

Day 18

I attended a workshop for teachers of ELL students (English Language Learners) today.  This year I am teaching three sections of Algebra 2, one section of Honors Geometry, and one section of ELL Geometry.  It's a small class of eight; they are all Hispanic and all have varying levels of English proficiency and math proficiency so it's a challenge.  I've been to so many different workshops over the past 10 years, some better than others, but this is the first one I've attended since Tera's been born and I have to say I found myself distracted by thoughts of her future education.

I always thought it would be difficult and interesting to be on the other side of the desk one day as a parent instead of a teacher and as it turns out, that day will come quicker than I anticipated it would.  Tera is currently in Early Intervention which is how her therapies are arranged and how she is evaluated.  When she turns three, she'll transition out of Early Intervention and into Early Childhood which means she really will be in school, not just at Montessori which we call school. We will have to meet with a new person to write goals, or an IEP (Individualized Education Plan), for Tera every year that she is in school until she graduates high school.  This is a realm that I am very unfamiliar with in education just because I don't have much experience with it.  I have some knowledge of how it works as a result of having students that have IEP's in my classes, but I have no idea what to expect when it comes time to address Tera's teachers about what we expect from her that year and how we want her to go about doing it. 

Tom and I have always done well in school.  I was always the hard-worker, top of my class, honors and AP classes and he was always the classic, "does not work up to potential" but could still get by with mostly B's.  While I was pregnant we discussed how we would address the academic issue with our child.  As the educator, my view was that I would always expect them to do their best.  If that meant a B or even a C, that was okay as long as I knew they were doing everything to the best of their abilities.

Unlike so many other things, I don't think that has changed.  I now know that I will have to fight to make sure she is where I think she can do her best and then make sure she has all the tools she needs to be the best that she can.  As a teacher I've seen kids mainstreamed or "included" when it seemed like maybe that wasn't in their best interest.  But at some point we'll have to be in that position to decide whether we think she will be more successful in an inclusive setting or a special education setting.  I've read many posts about parents fighting for their kids to be included because they deserved the same opportunities as other students.  And I completely agree with that if it's in their best interest.  Sometimes a student can't get the attention they may need from a regular ed classroom and I don't want Tera to lose out on critical instruction or attention because we're worried about her being "regular".  At that point, we'll make sure she can be "regular" someplace else because I'm not willing to risk her education. 

Now I do have a few years before these decisions have to be made and there's a very good chance I'll change my mind or point of view on this one or more times before she's actually in the situation, but I'd like to think she'll be that great kid that all the other kids want to work with not because she has Down Syndrome, but because she's friendly and funny and hard-working, and completely adorable. 

Monday, October 17, 2011

Day 17

We just had Tera's long awaited ENT (ear/nose/throat) appointment and it was somewhat anti climatic.  I was of course not hoping for more problems, but at the same time I was hoping we would have some answers to some of our concerns.  Basically it sounds like Tera has a bad cold or sinus infection, but he's not sure which one or even if it is that at all.  He suggested a course of antibiotics to see if that helps and as much as Tom and I are against antibiotics without a diagnosis, it seemed as though the past several weeks of her suffering was enough.  It also seems that several of the concerns we have may be related to the cold/infection so we don't really have answers to those questions until we see if the antibiotics work.

One of the things that has been so frustrating and concerning to me is that I never seem to have the right level of concern.  When I feel like something is wrong, I've pretty much been told that it's either normal or doesn't seem like anything serious.  Then when I assume it's something normal or at the very least nothing they can do anything about anyway, it ends up being more serious.  The doctor seemed somewhat surprised that we had waited this long to see anyone but even when I've called about multiple vomiting episodes in a day, they tell me there's nothing they can really do and just watch it and call again if it doesn't improve. 

This is the one part that I'm sure most parents experience; never knowing when to be just the right amount of concerned.  The other complication that we face however, is knowing when it's something that's a "normal" concern and when it's something related to one of the many issues that can be a result of Down Syndrome. 

I know this will be the struggle for a long long time and I know that as a parent I'll never stop worrying or second guessing myself.  I do understand what my parents went through now and I suppose I'll view it as a rite of passage in life.  Some days I'll feel more confident in my decisions and some days I'll question everything I'm doing.  But I know that at the end of the day, she's fed, warm, and loved and on the day she was born they told me those were the most important things so I'll stick with that and consider parenthood a success so far. 

Sunday, October 16, 2011

Day 16

So I remembered my topic from yesterday.  The future.

As Tera was sleeping on my shoulder yesterday morning, I look around her room and remembered how we had thought about and planned all the little details of her room.  We picked one of the cheapest, but highly safety rated, cribs; used hand me down dressers, searched out the perfect bookshelf and bed/dresser system, had a very crafty friend make the curtains, picked out completely gender neutral bedding, Tom refinished the floor, and then we worked on the details.  We chose two of Tom's Star Wars movie posters (ones I had actually bought him) and hung them carefully.  We also custom ordered three character pictures (Princess Leia, Chewbacca, and R2D2) that we found from an artist at the ComiCon.  We even put quite a bit of thought into the specific characters we wanted in her room (while very open minded, I wanted only characters that represented good in there).  We even bought the piece de resistance, a pricey but necessary Wampa Rug.  Then we went through our old belongings in our crawl space and Tom picked out the perfect figures and collectibles that would fit in and I picked out my favorite and most meaningful stuffed animals to include.  We joked all along that we spent more on her rug than on furniture and more time choosing the details than most people would, but that's just how we are.  We thought about how Tom's love all things Star Wars would pass down to her and how we could influence her style of music by choosing our favorite songs and artists and playing them constantly in her room (which we do).  All of this planning went into her future; albeit minor planning, but planning that we enjoyed doing and made us unique and would make her unique.

We met with our financial advisor and picked out life insurance policies and discussed when and how much to contribute to a college fund.  We discussed parenting techniques and what things we would allow and when we would put our collective foot down. 

And then she was born.  And then we were given the news that would change our lives in ways we definitely had NOT planned on.  And one of the first things we thought about was, how this was going to change the future we had talked about for her. It wasn't that we didn't expect that her personality or life choices could change that plan anyway, but we certainly didn't expect that plan to be removed from our hands at so early a stage. 

And so I sat there yesterday and thought about how so many new parents plan their kids' lives carefully only to have that thrown in their face, but then I thought about how our plan was thrown in our face an hour after Tera was born.  I know it shouldn't seem that way, and I don't necessarily think of it that way now, but I definitely did then. 

So many of the moms that post in my forum in the DS community talk about how thoughts of the future are probably the scariest and hardest parts of DS to deal with.  Whether those fears and thoughts are medical, developmental, financial, or something else, the fear of the unknown is debilitating in those first hours, and days, and months.  And even for years I'm guessing.  So we try now to focus on the present, but still those thoughts creep in.  When we talk about our current house or a new house, we have to consider that Tera could be with us for the rest of her life.  We don't know if she will, but we have to plan for that possibility and when we promised her we would always do whatever she needed, that falls under the living situation category as well.  We have to rethink a college fund so that if she doesn't go to college, the money that we have saved for her isn't penalized. 

So many of the things that we thought about have changed, but the idea that she would be her own person, with her own quirks and unique traits, has not.  She has an extra chromosome that makes her different, but she has her own little personality that does also; and that, we did plan on. 

Saturday, October 15, 2011

Day 15

So I've made it until almost the half way mark before cheating.  To be fair, at around 7 am I was rocking Tera in her room as she fell asleep on me, and that doesn't happen often.  She's a good snuggler, but when she's tired, she usually needs room to stretch out.  But this morning she fell asleep on my shoulder and I wasn't about to put her down so I enjoyed my snuggle time.  As this was happening I was looking around her room and thinking and a topic came to mind, but now 14 hours later, I can't remember what it was. 

A little while ago I decided to reorganize some of the pictures we have on our digital frame and I was enjoying watching how much Tera has changed in the past 7 months.  Sooo, here's how I'm cheating: One picture from each of the past months since she's been born.  I know, it's nothing deep or meaningful, but I promise it will be enjoyable :)

Newborn

1 month old

2 months old

3 months old

4 months old
5 months old

6 months old
7 months old (from today with our new flash, love this one!)

Friday, October 14, 2011

Day 14

Note: I know I've written about this topic before and I may again, but it is relevant today.

This has been a baby filled week with not one, but two of my friends/coworkers getting new additions to their family! Both had baby girls and both are doing well. 

I've never felt bitter about any of the people that have had healthy babies in the time since I've had Tera (and I almost deleted that sentence because I really, truly have never felt that and I don't want to plant that idea in anyone's head, but all honesty here).  I also never regret the experience we had with her birth and the days and weeks following.  In fact, just the opposite.  Hearing the news of my friends' new babies has made me miss those first few hours and days with Tera because honestly I've never felt more loved and taken care of and happy in my life.  Of course I can say that now because the truth of everything has had time to set in, but even in those dark hours of crying my eyes out because I didn't know how we would handle everything and trying to accept how our life had changed, I was so happy that she was finally with us. 

Because Tera was the first baby on both sides of our family, everybody was over the top excited about my pregnancy and her impending birth.  And then of course when she was born it seemed like people just came out of the woodwork to see her.  I'm sure it helped that she was born early on a Saturday morning and so people had the weekend, but I know that's not the main reason.  I've always been very close to my family and so I was so excited to be able to share her with them that I couldn't wait until people got there.  The first day was such a day of conflicting emotions because we were so happy she was finally with us, but then we were also dealing with the news of the Down Syndrome on our own because we hadn't told anybody.  I was also going on about 4 hours of sleep and having given birth and all the hormones and emotions that go along with that. 

Then the next day when we decided to tell everyone, we cried so much I thought I couldn't stop at times.  That day was one of the bravest days for Tom because he took on almost all of that on his own.  He let me just be with Tera (who had already been moved to the NICU for the risk of infection) and then bring people in to see her.  In the days that followed I was able to really see, again, one of the reasons why I married him and it was because through all his pain he always put Tera and I first.  He took care of me and my post partum recovery and her just in the way he handled the phone calls and sea of people and keeping track of when we could go back up to see her and when I needed to pump and making sure I drank enough water and ate and slept. 

We both cried so many times that we had to leave her in her little bed, but just being able to hold her and kiss her little head and cheeks was so amazing.  So even now, when I see those pictures of her in the hospital still with her little feeding tube taped to her cheek and the monitors on her feet and chest, I still get nostalgic for the experience of getting to meet her.

Thursday, October 13, 2011

Day 13

Yesteray I happened to mention feeling completely overwhelmed.  Just to be clear, that hasn't changed yet.  However, I was able to spend what I consider quality time with Tera tonight and what power that little girl has over me.

She had speech therapy this afternoon so I had to kind of race to pick her up from school, get her home and give her some of the bottle she missed this afternoon to tide her over through therapy.  She's only seen her ST a few times so far but almost everytime she's been uncharacteristically quiet and today was pretty much the same thing.  In fact, last time, she made almost no sounds and so just to show the therapist what she is in fact capable of, I had to video her making sounds and then email it to her therapist.  She of course made tons of noises yesterday when she had physical therapy, but then today she decided to show her ST how she could roll over.  Perhaps we need to have a conversation with her and explain which skills each therapist would like to see.

Either way, she did well and after feeding her, and eating dinner ourselves she actually seemed to have enough energy to play for a while.  This is not a normal occurence because most of the time she's completey wiped out after a whole day playing at school and then a therapy session.  We've been working for the last several weeks to get her to roll from her tummy to her back and while I know she's done it a few times at home (she starts on her tummy, I look away, look back and she's on her back) and at school where she repeatedly rolls, I've really only witnessed it once, maybe twice. 

Tonight I started out propping her up in her boppy pillow for some support and she played for a while but was able to pull herself up when she started leaning back so I was happy with that.  Then she started getting antsy so we moved to the floor where she decided she was finally going to bless me with an exhibition of her new skills.  She saw a plastic ring that she wanted and rolled over to get it.  Then rolled over again.  And again.  And again! She apparently decided she is ready to roll in both directions and front to back and back to front!

One of the things I've been completely amazed by with her, and I know this is common with most babies, is how fast and how frequently she starts using a new skill once she's able to master it.  Prior to today she's been able to roll all the way over, but hasn't done it anywhere near regularly.  In fact, it was probably still somewhat accidental.  But now that she knows what she can do, there's no stopping her.  So we have a new entry for the baby book: at 7 and a half months, she was able to roll front to back and back to front. And this makes me happy :)

And now I will also include a fact from the NDSS (National Down Syndrome Society) website and their Down Syndrome Fact Sheet.  After all, it is Down Syndrome Awareness Month, it seems likes facts are part of awareness.

Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies is born with Down syndrome.

And I'm including a video today :) This kid gets crazy after a bath so we tried to get some of it...

Wednesday, October 12, 2011

Day 12

There seems to be at least a day or two (or sometimes seven) days of the week when I feel completely overwhelmed.  To be honest, this happened before Tera was born fairly frequently also. But as my wonderful friends at work have tried to encourage me to do, I've said no to more things at work this year and felt less compelled to get certain things done at home.  Sure I probably could have given those things up earlier and eliminated some of that stress, but at the time I felt that while I didn't have kids, it seemed like things I should be doing.  I had already planned on removing some of these activities before Tera was born, but after she was born and we found out about some of the extracurricular activities that came along with her, I had to get rid of even more (this seems to have been my workouts lately). 

So basically now I'm overwhelmed by a lot of the things that new moms are; balancing work, housework, and spending quality time with my husband and daughter.  But then on top of that I've had to add in therapies, doctor appointments, lists of questions for therapists and doctors, and oh yeah, that whole sleeping thing. 

In response to these things, I've tried a new grading system that has eliminated TONS of work for me and is beneficial to my students, asking for more help from my husband who has always offered it, paying people to do things that we just don't have time for, and actually saying no when I can't do something.  And most of the time, this seems to work.  But as I said before, there are always a few days when everything seems to come at me at once and I'm left sitting there wondering how I'm ever going to be able to breathe again. 

I know I will again reach a point where things seem in order and there may even be a moment when I think to myself, "what should I do with this free time?" because in 31 years it's always happened eventually.  The dilemma I face now is, it's ok if I run out of time to wash the floor or I forget to write something down that we need at the store, but it's not ok if I forget to ask one of her doctors a question I've been thinking about for weeks or we never have time to work on her therapy strategies because my new job, my most important job, is making sure that she is always taken care of and during a week like this, that's the part that worries me the most, that it's one of the important things I'm forgetting or not getting done. 

So right now, I'll try and go to bed and watch some mindless television that will hopefully allow me to sleep and not wake up at 2 am because I realized I have an email to send at work or lay there and worry about how I'm going to get my classes to correctly multiply binomials.  I will try and sleep so that I can wake up in the morning to my favorite little face and feel once again that I am capable of all of this. 

Tuesday, October 11, 2011

Day 11

Tom and I have lived in our house for about five and a half years now and we pretty much only know the people that live directly next to us and across from us.  We're not antisocial per se, we just don't go out of our way to meet our neighbors.  We are friendly with the ones next to us, but for the most part, there aren't any other couples our age around us so we just don't have much to bond over.  I've often thought about what it would be like to actually socialize with our neighbors as so many other people I know do, but it just doesn't look like it will happen anytime soon. 

Anyway...As a result of us kind of keeping to ourselves, the fact that I was pregnant and then that we had Tera, wasn't necessarily common knowledge.  Our neighbors to the right of us actually did know because their daughter has dog sat for us on a few occasions and we told her when I was pregnant.  After that her mom and dad congratulated us and we just kind of waited it out.  To make matters more covert, I was pregnant in the winter so it wasn't exactly obvious what with the big coat and the fact that we weren't spending much time outdoors (with the exception of clearing the snow from the biggest snowstorm in history 3 weeks before Tera was born).  Then she was born and it was still a few weeks before we could take her outside (early spring) and then a few people were surprised I had been pregnant at all.  In fact, I don't think our neighbors to the left of us even knew about her until she was about 3 months old.  The other neighbors did see us shortly after she was born and asked the question that I've kind of dreaded when talking to casual acquaintances or new people: "So she's healthy and everything right?" We've never known quite how to answer that.  So when the mom next door asked when she saw us, we said sure, she had a few issues but mostly yes, she was healthy. 

I'm not one for small talk, but even I have to admit, asking if a newborn is healthy is a pretty normal, routine question.  But how did/do we answer it? She spent 7 days in the hospital, but that was due to a close call with an infection; nothing major (in hindsight of course).  She has 2 holes in her heart, but they didn't require medication or surgery so again, not too major (ok, yes but not enough to try and explain).  And then there's the big one: Down Syndrome.  Not a health issue completely, but definitely something of note and so far, we've really not addressed it with anyone outside our family, friends, and coworkers. 

We've discussed it several times, the first probably being after that first neighbor met her, and we both agreed we didn't mention it because we didn't want to have an awkward conversation.  I'm pretty sure when people ask that question, it seems like the right thing to do and few people probably expect anything other than "Yes, of course, the picture of health."  So while we are definitely not ashamed or embarrassed to talk about it, sometimes it just seems that we're saving the other person from the discomfort of the situation.

That being said, it's only a matter of time before people will be able to tell by looking at her.  Which is definitely something I've thought about because I don't want anybody to think we hid the fact that she has Down Syndrome, but I also don't want to make it a central issue. 

The reason this all came up again is because we have an older couple that we are friendly with across the street (I used to order MaryKay from her and Tom has helped them clear their driveway of snow several times).  The woman had actually called us to ask if we had a new baby because she had seen us pushing her in the stroller.  So after several weeks of forgetting and not getting around to it, we finally decided we should be neighborly and walk across the street to introduce her to the neighbors.  They of course gushed over her and we of course said nothing about the Down Syndrome.  And so I began thinking of it again and I think I pretty much feel the same way.  I don't want to have to introduce her, ever, as my daughter Tera who has Down Syndrome.  Instead it will probably be, this is my daughter Tera, and yes I agree, she's pretty freaking adorable. 

Monday, October 10, 2011

Day 10

We had another first today:  Tera's first school pictures.  My mom and grandma think it's hilarious that we call her daycare, school, but she works hard and learns new things there so I think school is a pretty accurate description.  Anyway, they did pictures today; so despite the fact that Tom and I were both off of work and home with her today, we of course took her in to school for her pictures, because how could we pass on that? And, there's no shortage of people in our family who will order them...
Posing for pictures just wore her out...
We had a great weekend as a family and it was even better because it was a 3 day weekend.  Before Tera was born, and before Tom had more vacation time, I was used to spending school holidays at home by myself, but this is soooo much more enjoyable! We took her into school for her pictures, got coffee, stopped at Toys R Us and Babies R Us, came home and I baked cookies while Tera and Tom played, we had some necessary financial discussions, and then we sat down to watch Lion King.

One of the things I always thought about before I got pregnant and then of course when I was pregnant, was how we'd be able to share all the things that Tom and I enjoyed doing as kids with our baby.  However, one thing that continually went through my mind right after we received her diagnosis and during many of the months that followed, was how things would be different from what we imagined. 

During that time and those months, as I met and talked with other parents of kids with Down Syndrome, one of the sentiments most commonly shared was to never forget that she is just our baby first.  The Down Syndrome is a part of her, but it doesn't define her. 

It's definitely been difficult adjusting to many of the things that we've had to think differently about since she's been born.  One of the other things we're also currently dealing with is how to plan for her future financially.  We had planned on setting up her college fund right after she was born, but because we don't know what further education will mean for her, we can't take the chance of tying up her "college fund" in something that she can't use.  We've decided to contact Gigi's to see if this is something that other parents are struggling with and seeing about setting up some type of seminar that can help all of us. 

But as I've said so many times before, and I'll continue to say because it needs to be our focus; is that for right now, we just take it one day at a time.  And for today, that meant sitting with our girl on the couch and watching her eyes just light up at the opening scene of Lion King on Blu Ray and telling her how much her daddy and I loved watching the movie (and still do). And how when she's a little older we'll take her to see it on stage, and despite the fact that many people aren't encouraging their 7 month old to watch tv, I'll proudly say we looked for cartoons to watch with her this morning and we'll finish watching Lion King with her (though it make take several nights). 
She's ready and waiting for Simba to make his appearance.  And playing with Daddy's iPhone...

Sunday, October 9, 2011

Day 9

After Tera was born, a very good friend of mine whose second baby was born VERY premature, gave me some very good advice.  Because her son was born so early, he experienced many developmental delays and she said she spent so much time looking forward to when he would reach his next milestone, that she missed enjoying the time in between them.  She said to just enjoy the time with her and enjoy the milestones whenever they happen.  This was some priceless advice that I've taken to heart.  For the past 7 months, I've really tried to just focus on what she's able to do and not what she should be able to do.  Honestly, it's not been as hard for me as some other parents because all along Tera has been very mildly delayed.  Many of the things that she is considered even somewhat delayed in doing, are things that many babies her age probably aren't doing, they're just not being evaluated by professionals for it. 

Because I haven't focused on what she should be able to do by now, I've really enjoyed just seeing her progress from one stage to the next. In fact, there have been many times when one of her therapists would say, "Well, she really should start working on trying to do..." and then an hour later she would do it.  We've joked that if they're expecting her to be able to do something, that they should just formally request it from her and that would be enough to get her to do it.  Sometimes weeks go by and and I don't necessarily notice anything major and then all of a sudden I realize that she wasn't doing that before.  What's been really fun to watch recently is how intrigued she is by everything around her.  She's so aware of what toys she is playing with and all the other things around her.  She seems to have purpose in what she's doing and she can entertain herself for long stretches of time.  She loves new textures and she absolutely LOVES faces! She has recently discovered that if she sucks on the faces of anybody, she gets big laughs.  Because of course, few people have told her no...

Just a week or two ago we could leave anything on her high chair tray while she was eating and it was safe whereas now everything has to be cleared off or she'll find a way to grab it.  She reaches for glasses and plates and food on the table (and glasses on people's faces), toys on her tray, and anything else close to her little hands.  I can leave toys in her crib and when she wakes up, if there's one within reach, she'll play with it for a while before she finally wants to be picked up. 

There have definitely been some times along the way, and now, where I am somewhat anxious for the next milestone.  I really looked forward to when she would be able to hold her head up consistently, when she'd be able to actually hold onto and play with her toys, and currently, I'm really wanting her to be able to sit up.  But her therapists have been great and really encouraging and they're not worried about her at all so for the time being, we just enjoy our silly, sweet, happy little monster. 

Saturday, October 8, 2011

Day 8

So I'm happy to report that Tera is feeling much better.  I have to laugh when while talking to the on-call pediatrician last night he said we could be in for a long night with her not feeling well.  But as I've said before Tera is pretty much the easiest going baby in the world and so her "long night" was sleeping from 5:45 last night until 6:00 this morning.  She never woke up once.  I of course checked on her about 30 times, but except for moving around in circles and experiencing her usual level of congestion, she slept soundly.  She also woke up with no fever, acting her usual happy self, and as of right now, keeping all her food down.  One more crisis down...

For everyone living in our Chicagoland area, and I'm guessing most of the midwest, I assume you are all experiencing the same warm weather phenomenom.  This reminds of two things; one, that I really enjoy fall weather and am probably one of the few people that does not enjoy this early October heat wave.  Two, that we had the same phenomenon last year on this same weekend.  Last year I was aboout 4 months pregnant at this time, a couple weeks from our first and only ultrasound, and in Michigan.  Once a year for the past few years Tom and I have tried to go back to Western Michigan, our alma mater for a weekend of hockey, relaxation, and nostalgia.  Last year we were doing the same thing and the weather was unseasonably warm and not what I was hoping for when visiting beautiful Michigan in the fall.  The reason I'm thinking about this, besides the weather, is that at that point I had no idea just how much our lives would change. 

We had decided to visit Saugatauk, a pretty little touristy, shopping town in Michigan that we enjoy and were thinking about how we were going to decorate the baby's room.  I had figured maybe we could find some things there that we might be able to buy or at least help us decide, but at that point we still didn't know if we were having a boy or girl.  We had been considering a super hero room, boy or girl, or Star Wars boy or girl, but how we would go with either those depended on the gender.  We were in an artist's shop and found a few unique super hero paintings we liked, but decided we couldn't buy them until we knew for sure what we were having. 

We already knew at that point that our lives would change, but I look back at that time and realize that the possibility of Down Syndrome hadn't really entered our minds.  We are both very realistic people and were never naive enough to think something like that couldn't happent to us and ironically, before I got pregnant we had had conversations about how we both thought we could handle a child with a disability.  It's odd how things like that stay with you.  But unless you have some indication, I would venture to guess most people probably don't really expect anything to be wrong with their baby. 

When I was 11 weeks pregnant, my doctor thought I'd probably be able to hear her heartbeat, but he ended up not being able to.  I was a nervous wreck for the next month until my next appointment.  When I left my next appointment after having heard that little racing heart, I said out loud to my unborn baby that she should never scare me again like that.  When my sister's best friend's baby had to stay in the hospital after she was discharged, I told her to please not do that to me.  Apparently my little girl wasn't a good listener because after being more scared than I ever had been in my life when we received her diagnosis, she ended up in the NICU for 6 days. 

But if I could go back to last October I would tell myself to forget the super hero theme, that we both knew all along that Star Wars would be the theme.  And if I could go back to February 26th around 9:00 am I would tell myself how amazing she's already been and how she would touch lives like we never could have imagined and that the fear wouldn't ever totally go away and that it was okay to be scared and emotional, but that she will always be ok because she will never experience a lack of love.

Friday, October 7, 2011

Day 7

Well things could have gone better this evening.  After picking Tera up from school and getting her home, she proceeded to projectile vomit all over herself.  She seemed to feel better afterwards and after a much needed bath and change of clothes, I fed her some dinner at which point she wasn't quite looking herself.  Admitting defeat, I wiped her down and decided to sit with her for few minutes.  She took this opportunity to then empty her stomach through her mouth and her nose this time, which really seemed to upset her (not surprisingly).  Then my perfect little girl got fussy.  Now I will be the first one to admit I have an incredibly easy baby (all things considered) and so when I say she got fussy, I mean, this is a sign to us that something is definitely wrong.  Trusting my instincts I took her temperature to find it was 100.4.  Something was definitely not right.  Her teachers had said she'd been tired today and had taken longer naps than usual, but the fact that she didn't sleep well last night as a result of some ongoing congestion and that she had physical therapy at school seemed the more likely culprits of her fatigue. 

So after calling my mom (of course that's the first person I call) I call the doctor and ask for him to be paged.  They call back with the typical, "it could be a virus but it's really hard to say and there's not much that can be done so keep an eye on her, etc".  Meanwhile, it's 5:30, she's in just a diaper, and falling asleep on Tom's shoulder.  So we lay her down in her crib where she's been sleeping since (it's currently 8:45pm). 

How again, does this tie into Down Syndrome? It's just another instance of me wondering when does something happen that's just normal kid stuff and when is it a "complication" for lack of a better word due to the Down Syndrome? There have been several instances in the past 7 months when I really want to just give in to the new mom syndrome overworrier, but then in the back of my mind I'm wondering if it's one of the symptoms of her heart condition, or lately, something related to a plethora of things that can be attributed to small passages and canals (sinus, throat, ear, etc.). 

One of our many doctor appointments will be to the ear/nose/throat doctor in a week and when I made the appointment and it was a month and a half away at that point, I thought it wouldn't be a big deal to wait that long.  Now I have a rather lengthy list of questions and concerns for an appointment I thought would be just to have her checked out. 

It's these types of things that make me constantly second guess myself and my instincts about how serious something is.  One of the more fun things she's done is literally woken me up, from the next room with no baby monitor on, because she started choking in her sleep.  I believe she has shaved years off my life with these instances because I literally leap from bed and run to her room to check on her (and no I haven't imagined them, she really is choking in her sleep).  So on the top of my list of things to ask about is sleep apnea which seems to affect an estimated 50% to 75% of kids with Down Syndrome. 

Then there is the congestion.  She is definitely teething so that could be it, but I really do think she may suffer from allergies (as indicated by the rather large bags under her eyes that she was lucky enough to inherit from me).  Does this mean a pediatric allergist is next on our list?

So hasn't thrown up in over 3 hours and she's sleeping comfortably, but until she wakes up and I know she can eat and not throw up again, I'll be stuck wondering if it's another random occurence and not get an explanation or are we looking at another round of the stomach flu which we all just got.  Because of course, a compromised immune system is another bonus from that extra chromosome (well that, and she's at daycare). 

In the meantime, I'll try and get a few things done and maybe go to bed earlier than planned, though it's already 9:00, and just spend my sleep worrying like I know my mom has done for the last 30 years.  A sign that there is something normal about our lives after all.

It's a little blurry but I love it.  She is absolutely her happiest in the morning.

Thursday, October 6, 2011

Day 6

Since Tera has been born, I've found it more and more difficult to stay on top of things.  There is of course the typical absent-mindedness that accompanies most new moms due to lack of sleep and the constant attention demanded by that sweet little baby on top of your already existing responsibilities.  I'd love to blame it on that whole lack of sleep thing, but as many people who know Tera are well aware of, she's an amazing sleeper.  I know that's a scary thing to admit to people who may be reading this and thinking, "and she's complaining about what exactly?" But it's true.  She's been a great sleeper since the day we brought her home from the hospital.  So in my particular case, it's not the lack of sleep that I can blame.  I do however, find the neverending struggle to schedule things, overwhelming at times. 

Tera was receiving physical therapy twice a month, developmental therapy twice a month, and speech therapy once a month.  After her six month review, we increased her physical therapy to once a week, and speech therapy to twice a month.  All along we've planned to do some of her therapies at her daycare which is not only willing to have them, but wanting to learn new things to do with her.  When her therapies increased we figured it would be the perfect time to start having some of them with her teachers.  What we didn't plan on was that most therapists aren't necessarily available for both morning sessions at school and late afternoon sessions for us at home.  So now we're running into all new scheduling dilemmas.  Once upon a time I worked out 6 days a week and competed in a fitness show.  Now I've worked out twice in about six weeks. 

So after all of this it's probably not surprising that I somehow managed to enter the wrong date into my calendar for Tera's speech therapy appointment and thought it was today when it was actually next week.  On the plus side? I got to spend about an hour with my girl, with no therapy, no talk of her next goal or what we need to work on.  It was a great way to spend an hour.

So I have to say that one of the upsides to Down Syndrome, is truly being able to appreciate the little things like normalcy and quality family time.  When all the chaos of the worry about the future, and her health, and therapy appointments, and doctor appointments dies down, I really love just sitting with her on the couch and watching her play with my hands and rub her hands on my face.  I love when it's just Tera time.

Wednesday, October 5, 2011

Day 5

In my ever increasing exposure to sites, blogs, and FB pages about Down Syndrome, I've come across some amazing things.  Some things I've read, I have to say, I don't necessarily agree with.  I don't think I was "chosen" for Tera or that she was "given" to us.  She was created by us and by luck of the statistics, she ended up with 47 chromosomes.  Do I think we handled it better than some other people on this earth could have? Possibly.  But I also don't think anyone knows what they're capable of until they're put in that situation.  I don't think she was lucky to have been born with Down Syndrome or that we were lucky that she was. But I don't think we're unlucky because of it either.  We have an amazing daughter who makes us smile, laugh, and love life in ways we never thought we could and we've met some truly amazing parents and kids that we might never have had the chance to know.  But if given the choice to have her born with it or without it, I can't say that I would choose the difficulties I know we've experienced or the ones I imagine we will in the future.  I know other parents may not agree with me, and maybe when she's older I'll feel differently, but after only 7 months, yes, I wish it was easier. 

However, there are far more pieces I've read that seem to be taken right from my head and my heart.  One of those articles is one I've posted the link to on her FB page, but I'll include it again here. http://parenting.blogs.nytimes.com/2011/10/03/has-down-syndrome-hurt-us/
In this mom's blog, she talks about how she finally shared her birth experience with her daughter who has Down Syndrome.

There are not many days that go by that I don't think about the day she was born and all the events and days that followed and I've often thought about when she's old enough to ask, how I will share with her how that day unfolded.  In fact, I spent so many days in the months following her birth, thinking about that day, that I have written about all the details of that day and the days after in a form that is written to Tera for when she's older.  As I included all the details about when the doctor came in and told us how he suspected Tera had DS and the conversation we had with him, I've wondered if I would ever really feel ready to share it with her, or if I'll just reread it myself in the coming years.  I've also wondered, because at this point I really don't know, how much of it she'll understand. One of the hardest parts I've had to deal with since her diagnosis is the unknown factor of what she'll be able to do.  I don't ever want to think about what she won't be able to do, because so far, she's been able to do anything and everything.  She hasn't reached every milestone yet of course, but there's been nothing to indicate that she won't at some point and when the day and time comes that she is cognizant of the situation, that is exactly what we'll tell her.  When we'd finally had some time to come to grips with what the doctor had shared with us, in typical fashion, Tom and I turned to humor.  We said that our dream of her becoming an all star female goalie wouldn't necessarily change, but that we were unsure that hockey existed in the Special Olympics.  Then we just said she could be the pioneer of the sport!

I feel like I've digressed a few times here, but really each digression was where my thought process was leading so I guess it is what it is.  So read the link; it's wonderful and honest and I agree whole-heartedly with this one.