Monday, April 3, 2017

My current perspective on World Down Syndrome Day

I started this post 2 weeks ago on World Down Syndrome Day, and as is typical of my life, I’m hoping to finish it today.  There is such a mix of emotions and so many things that I feel differently about now than I did five and six years ago.  On that Tuesday, in most of my classes I did a Q&A with my students about DS.  The conversations all went well, they almost always do, and I know the kids like asking about Tera and learning about her.  I took tons of pictures of Tera and Zoey in their Team Tera shirts and posted all sorts of things on Facebook.  Tom and I ordered dinner and I took time to reflect on our roles as parents of a child with DS.  

But I’m constantly conflicted.  The conflicting part for me is how I feel six years into this adventure.  As I searched through Pinterest a few weeks ago for quotes to share about DS, the majority of them were things that I didn’t know that I quite agreed with.  Of course that changes depending on our struggles at the time, but one of the common themes is feeling lucky about having someone with Down Syndrome in their lives.  Enter conflict.  Do I feel lucky to know someone that has given me insight into a world I formerly knew very little about? Yes.  Do I feel lucky that it has introduced us to so many people we might not otherwise know? Yes.  Do I feel lucky that my perspective has changed on so many things for the better? Yes.  But do I really feel lucky that Tera, and we as a family, have so many struggles? Not as much.  When I look at other kids we know who didn’t take three years to potty train, don’t have sensory struggles, don’t have multiple weekly therapy sessions to learn and practice things that come more naturally to most kids, can go to birthday parties with few issues, haven’t had pneumonia six times (seven times now), aren’t facing the possibility of open heart surgery, don’t have a pulmonologist, endocrinologist, ENT, cardiologist, and gastroenterologist, in addition to an eye doctor, dentist, and a pediatrician who we see more than many family members.  And she has appointments with most of these doctors at least twice a year. We frequently spend days off, long breaks, and summers at doctor appointments because the available times are otherwise during school/work days.   

I read so many parents’ perspectives and I honestly don’t know how much I relate to some of them when they express sentiments like, “I feel bad for parents who don’t have a child with DS”, “DS is the best thing that’s happened to our family”, “I wouldn’t change any part of my child”, and many others.  Here’s where I feel like an outcast in the DS community.  We cried when we got Tera’s diagnosis, and sure, when the shock wore off we accepted it and moved on.  Many of the things I feared that day were unfounded, but so many of the things I didn’t know about are struggles we deal with daily now.  Like her sensory issues, behavior problems, and so many of the health things I didn’t even know I had to worry about.  I’m more proud of Tera and her accomplishments than I could ever possibly express.  I’m proud of her determination, her huge heart, and loving disposition.  And when we celebrate World Down Syndrome Day it is a celebration of Tera and her place in our family and this world.  I use it as a day to try and dispel common misconceptions and stereotypes.  In the past six years, there are at least 1,000 more adolescents that know about their math teacher/advisor’s daughter who has DS and what that does and does not mean.    

But I still feel like after six years, I am often in a tough place mentally and emotionally.  Nobody reading this should pity us.  We are never looking for that and don’t want it.  What we do want and why I share these things is for understanding.  We want everyone else to be as proud of Tera as we are.  But we also want everyone to understand when we are stressed, tired, not good friends, don’t answer emails, texts, and phone calls, are short on patience, pass on invitations, ask that things be held or done at our house, and seemingly spoil our kids, we have our reasons.  Frequently it’s because Tera just functions better at home and we’re too tired to work through that some place else.  Sometimes we try doing something we think might be fun and it’s a disaster.  Sometimes it works out, but we never know which one it will be.  Sometimes large groups of people are no big deal, sometimes we have to leave quickly.  Sometimes even a small family event can be too much and we’re left angry, tired, and upset that we can’t help her.  It can be a little overwhelming to pack to go anywhere and make sure that we have a device that can help distract her, headphones in case it’s too loud, squeeze balls, toys or coloring books in case she needs a break, and that’s just for Tera.  We also have Zoey who is only two and a half and needs her own set of things.  

And so in honor of World Down Syndrome Day (albeit two weeks late), here’s my perspective.  I’m the mom of a beautiful, loving, sweet, caring, determined, smart, independent, funny, and energetic six year old girl who has Down Syndrome.  She is a challenge and it goes without saying that she is worth every second of stress and exhaustion, every tear, and every fear.  We deal with every obstacle that comes our way as a family with a pragmatic viewpoint.  We don’t get optimistic, we try not to be too pessimistic, but things can be challenging.  Do we understand that our situation, every aspect of our lives, could be worse? Without a doubt, every minute of every day.  But we have our challenges and I’m proud of what we’ve made it through.  Currently, both girls have double ear infections and Tera has pneumonia.  They both need an antibiotic twice a day for ten days, two nebulizer treatments before bed, probiotics, and multivitamins.   Zoey also needs her thyroid pill.  Tera also needs allergy medication, a nasal spray, and Motrin for a fever and pain relief for her ears.  While home, she needs her neb treatments every four hours and when she goes back to school she’ll have to use her inhaler.  I’m sure I’m forgetting something.

This is our life.  I can’t say I wouldn’t change it, because things could be easier for them, but this is what we deal with and in spite of our struggles, we love each other and have a pretty damn good life.  

Saturday, March 11, 2017

As World Down Syndrome Day approaches...

Well, we're approaching World Down Syndrome Day and we've got some things going on at Casa de Theodore.  Before I get to the Tera related news let's talk preemie struggles.  Our poor little ZoZo got hit with a nasty virus that just won't let go of her.  And thanks to those damaged little lungs inside that sweet perfect body, it's been a rough seven days.  As a result of a fever and coughing fits that just got worse, I ended up taking her into the ER last Tuesday night.  I suppose as a sign of progress, we actually got sent home and not admitted.  Along with her discharge, she was prescribed a three day course of oral steroids designed to try to prevent her from returning to the ER.  Tom and I typically cringe at the mention of oral steroids as they have, at times, turned our kids into mini rage machines.  But if we wanted to help her get through the virus, it seemed like the best plan.  She actually got through it relatively unscathed, until of course right after the last dose.  The last 24 hours have been a little challenging, but we're hoping the worst is behind us.  Unfortunately, her nights have been uncomfortable for her, full of coughing to near the point of vomiting, and difficult for us to know what she's going through.

As a result of a crazy week at work for Tom and me actually having some sick days still this year, I was home with Zoey for Tuesday, Wednesday, and Thursday.  In that time I got some serious snuggles, some philosophical discussions (from the perspective of a two year old), and a little flashback to my time with her when she finally came home from the hospital.  What these types of times remind me of is, why she's still here.  See, around the age of one Zoey went from being my mild-mannered, go with the flow, easy to please baby, to a dramatic, emotional, feisty, stubborn, tough toddler.  The past year and a half has been challenging as she throws tantrums for little to no reason, she's not thrilled being around new people, she wants what she wants when she wants it and completely on her terms, she is insanely independent, and frequently doesn't handle being told no or what to do, well. And she is very much unlike Tera was at that age (except for the independence).  But in these past few days, I remember those first few days when two different doctors told us that our little 2.5 pound baby fighting for her life was feisty.  It's exactly all these challenging traits that are what kept her with us and despite the frustration that goes along with them, it's what makes her Zoey.  It's what will make her the independent, strong, and successful woman I know she will someday be.  We just have to make it until then...

And now for our big girl.  Over the past six years Tera has seen her cardiologist regularly to check in on the progress of her VSD.  She was born with three holes in her heart.  The biggest, and most concerning, actually closed very quickly.  The ASD closed by the time she was one, and all that remained was the VSD.  For about two years it was just a watch and see what happens.  Then about two years ago he saw that tissue had started forming over the hole, which was not what they wanted.  However, it was only problematic if the tissue formed faster than the hole was closing.

This past Monday she had her yearly checkup.  I had Tom take her, but I had a feeling this one wasn't going to go as well.  And in short, it didn't, for a few reasons.  First, she was not happy about the echo and got very worked up.  Second, were the results. Basically the tissue that has been forming is more of a flap now and it's moving back and forth, which is a new, not so good development.  Also, she has leakage in her aortic valve which is also new and not good.  As of Monday, he was going to confer with his partner, but more than likely plan on a sedated echo in May, and schedule open heart surgery for June or July.

However, after meeting with his partner and reviewing the results, they've decided to wait until next year.  She's not in any danger and it's not affecting her day to day life so they both feel comfortable with waiting.  So as of right now, we'll schedule another echo for a year from now and if the situation is the same or any worse, he will most definitely be doing the surgery.  Since heart problems are such a common occurrence in individuals with DS, it's less likely to resolve, but since it's not a necessity right now, he wants to wait.  We trust his opinion and feel more comfortable knowing he's already sought another opinion.

Needless to say Monday was a rough day, which led to a rough week.  We called our immediate family and friends to let them know and worked through the process of accepting our child was facing open heart surgery.  We had always prepared ourselves for the possibility of surgery, but it's still very difficult to know.  Now that know it's not happening this summer, it's a relief, but at the same time I struggle with having to think about it for another year.

Think what you will about how I view things, but I have to deal with things in my own way.  At this point, it does me no good to think that it might not happen, because then if it does, I will be devastated all over again.  I need to accept that it will happen so that I can think through it.  So if you talk to me about the situation, please don't try to convince me that she still might not need this very serious surgery.  Pessimistic view or not, this is how I  deal, and I've dealt with a lot.

So as World Down Syndrome Day approaches (on March 21st) please consider helping us spread awareness and love.  Share a fact (if you need help, I know plenty), share a story, share a feeling, share an experience, share a change you've gone through since knowing someone with DS, share a picture, or share something that you'd like to know.   But please, celebrate this day with us and our family.  Wear your Team Tera apparel with pride and know that with all your love and support, we'll get through this and anything else.

Friday, February 24, 2017

On our Sixth Anniversary

So many things to think about right now.  First and foremost, Tera’s sixth birthday is on Sunday.  That means so many things to me.  It’s the sixth anniversary of us being parents, the sixth anniversary of our lives changing forever, the sixth anniversary of the news that rocked our lives, and most importantly, the sixth anniversary of one of the most defining events of my life.

Every year so far, Tom and I have decided what to do for Tera’s birthday party. But this year, she made all the big decisions.  She wanted a Batgirl birthday party, a chocolate Batgirl birthday cake (not cupcakes), and she wanted it to be purple and black.  This is just one of the ways that she is showing us how much she has grown in the past year.  She has made amazing growth in kindergarten, is working on many of her behavior issues, and continues to demonstrate capability in her ever increasing independence.  

But despite all the gains, there are still areas that she struggles in.  In the past year we’ve had to admit defeat (in a manner of speaking) when it comes to certain gatherings.  Events with lots of kids (like birthday parties) have proven to be very difficult for her so we’ve had to make the tough call and decline some of them; even in the cases of close friends and family.  She still has meltdowns, but they are less frequent.  And the biggest challenge, for anyone and everyone that works with her, is her ever changing and incredibly difficult to identify sensory needs.  We all know she has them, we all know SOME of her triggers, but no one can quite get a handle on what works best and when.  

Tonight was a perfect example.  Tera’s cousins and grandparents came for dinner and a visit.  It being the end of a school day (and one in which she woke up at 4:45am) meant it wasn’t the most seamless visit, but overall they did fine. However, when it was past her bedtime and everyone had to go, it was all too much and she had a meltdown.  And so as everyone left and I physically restrained Tera as she kicked, screamed, cried, flailed, threw her head back, and generally melted down, we were reminded once again of her struggles.

I finally got her upstairs, changed, and into bed where I just stroked her cheek, brushed her hair from her face, and let her snuggle my arm.  But as I laid there waiting for her to fall asleep, I watched that perfect face, knowing what she had just experienced, with my hand on her swooshing heart and I remembered.  I remembered the first time she was placed in my arms and I showed her to Tom amazed at what we had created.  I remembered the short lived euphoria as an hour later we were delivered the news of her diagnosis.  I felt the swooshing of her heart and remembered once again that yearly cardiologist appointments are still a part of our lives as we wait to learn whether or not she’ll require surgery to close the remaining hole.  I remembered so much of that first day, the anniversary of which we celebrate on Sunday.  And as incredibly lucky as I feel that that heart surgery is a still a possibility not a probability and that it hasn’t been necessary yet, I still think to myself, “why her?” “why us?” And the answer is, because.  

Everyone who knows us know we don’t believe in the “everything happens for a reason”, “it’ll get better”, “you’re only given what you can handle”, and any other platitude that  people use when they want to feel better or make someone else feel better.  If it works for you, great.  In our case, feel free to say, “that’s rough,but my goodness are they beautiful and amazing”.  I’ll tend to agree with you more on that.  

I’m not sure if I’ll get another post in on Sunday, but for tonight I’ll say this.  We’re damn lucky to have these two amazing, beautiful, smart, sassy, feisty, inspiring, funny, strong girls of ours.  They are challenging, exhausting, loving, and worth every second stress that comes along with parenting and loving them.  They have taught me about patience, priorities, life, and love and for that I will forever be grateful to all the trials and tribulations that came after 2/26/11 and 7/14/14.  Happy birthday to my sweet snuggle bug, mommy loves you more than will ever know.  

Wednesday, January 11, 2017

The effect of Tera...

I’ve been trying to get back to this.  I need to get back to this to help me work through so many of the things that go through my head.  I’ve had so many times when I thought, “I need to just sit down and get this out, this would be a great post…” and then I don’t.  I don’t make the time.  But last night I experienced something that I didn’t want to just share as a Facebook post (which is my alternate go-to for sharing good/bad things).  I want to give this the attention that I think it deserves.

Last night we had the opportunity to go to Tera’s PE Night at her school.  It was a 25 minute long session where the kids were able to show their families what they’ve been doing in PE this year.  We didn’t know for sure it was going to work out because Tera already had swim and my car was finally ready so if we were going to do it, it was going to be a packed night.  But I’m so glad we did it.  

When we walked in the building, one of the first adults we encountered was a maintenance woman from the school who immediately greeted Tera by name.  Tera then of course introduced her to Zoey (usually the first words out of her mouth).  The woman commented on how nice it was that she was here for PE night and seemed genuinely happy to see her.  Immediately after Tera was greeted by yet another adult who knew her (she seemed to be another PE teacher).  She told Tera to show us her locker and that she and Zoey could hang their coats in there and then head to the gym.  There was at least one more adult that we met along the way who of course, greeted Tera.  I’m really starting to wonder if there’s an adult in that building that doesn’t know her.  A few weeks ago one of the secretaries recognized her at swim and told me that of course she knows Tera, Tera brings the mail down to the office every day...

Tera showed us down to the gym and the PE teachers introduced themselves and said that the kids should go to their stations and show us what they do there.  We would then rotate stations so that everyone would see all of them.  Two of the three teachers greeted Tera and gave her her instructions.  As we moved through the stations I was able to talk to the two teachers.  Individually, they both commented on how much they love having Tera in class.  They told me how much she loves going to PE (even so much as to say she goes potty super fast just so she can get back to the activity), she loves participating, and that “she is a bright spot” in their day.  They commented on how athletic she is and multiple times said how much of a joy she is to see everyday.  

I cannot even begin to express how much that meant to me.  Trust me when I say I know how much that sweet face can light up a room and also your day.  Her smile can melt your heart and her hugs can change your whole mindset.  And I think these teachers have experienced all of that.  

Then, during one of the rotations Tera’s principal came up to give her a high-five.  Tera responded with, “Hi K!” He then told me that he and Tera have a great time every day and that when she sees him, she always yells, “Hi K!” (his last name is a little tough for kids and one of the funniest parts of Tera’s speech is that she typically forgoes the “Mr” and “Mrs” part of her elders’ names).  Once again, there was another adult in the building who has developed a relationship with her and seems to truly enjoy seeing her (though I’m sure he was a little doubtful when he had to call me during the first week of school to discuss an incident on the bus).  

During one of the rotations her teacher let her use the microphone to announce the next shift and explained that Tera really likes using the microphone to help (shocking).  But as the event came to a close, as happens frequently with Tera, the transition of having to leave was upsetting.  She was also tired.  Tom and I both tried various things to get her going but she was on the verge of a meltdown.  Tom took over while I brought Zoey back to our coats and as she got closer she still struggled.  The one teacher that had greeted us at the door tried to help with the promise of a water bottle, which almost worked, but the she lost it again.  Finally her teachers came back in to clean up and they offered to let her use the microphone one last time to say goodbye.  They didn’t react to her crying or screaming, they simply made the offer and fortunately it was enough to bring her out of it.  She screamed “BYE!” into it, and we headed out.  

While the event only lasted 25 minutes, it left me feeling incredibly proud of Tera and incredibly happy to know that these are the people she gets to spend her day with.  She is in an ideal set up that really seems to be working for her.  She’s in a special education classroom with only four other students.  However, she gets to do circle time, library, PE, lunch, and recess with all the other kindergartners.  She gets the attention she needs in her small class, and the experiences she needs, and the other kids need, in the other areas.  And I can pretty safely say, she has already left her mark on the adults that get to work with her.  I know she can be a handful to work with, but the rewards that come from working with her are immense.