Monday, January 1, 2018

Here's to another new year...

Well, here we are on the first day of the New Year and I have so many thoughts and feelings.  As I've gotten older the focus has been less on what exciting plans we have for New Year's Eve and more wonder at what ungodly hour my children will wake us up on New Year's Day.  We hang out with great friends, usually play some goofy card game, snack, and call it a night shortly after the New Year rings in.  Then I wake up New Year's Day and feel like I should experience some sort of enlightenment.  I personally don't care for resolutions, but it's hard not to feel like this day is a new start to cleaner living (mostly because all the excess of the holidays is over), a re-dedication to my workouts, and a hope for a better handle on my mental well-being.

As I look at my TimeHop and Facebook's On This Day, I see all my previous posts from the first day of the new year.  Reflections on what the previous years had brought and curiosity as to what the new year had in store.  When Tera was younger, it was a lot of observations on what she had accomplished and what we were hoping she would soon be able to do.  It was remembering major life events and how, for better or worse, we survived them.

This past year seems to have been one with less excitement, but it wasn't without its struggles.  Tera continues to learn how to navigate her surroundings and has made huge strides.  She has met several of her goals, and had an incredibly successful start to the school year.  Zoey's vocabulary, language, and comprehension have exploded and she is loving and excelling in pre-school.  I had a fantastic summer with them both and it was first one I felt like I was really able to enjoy since they play so much better together and, in general, are more independent.  Zoey is potty trained and Tera is doing great on her new bike.  Most notably, the girls had no overnight hospital stays! We went to a water park for the first time last spring and we went on our first family vacation to Door County.  We were also able to visit our good friends up in Wisconsin over night and they were flower girls in one of my best friends' wedding. Now these things may not seem monumental to most people, but each one presented its own potential obstacles for Tera and us as a family.  Fortunately, overall, they went very well.

When I look at the big picture, as a family this year was a lot better than past years.  But again, not without the standard Theodore girl challenges.  Zoey had five or six ear infections from last January to May.  Tera had pneumonia (number seven) and a double ear infection in the spring and strep throat for Mother's Day.  Zoey got strep throat in August and then again just before Thanksgiving.  She also had pneumonia on Halloween.  Both girls had the stomach flu at different times this fall.  Tera had some chronic skin issues and bad bout with her stomach.  And then to top it all off, Zoey had an infected toe the week before Christmas.  I'm sure there are other viruses and issues that came up in 12 months, but those are the "highlights".

I've been told in the past I shouldn't dwell on the negatives and focus on how things will get better.  I stand by my belief that that doesn't help my ability to cope with life.   Depressing or not, I go into a lot of situations (medical, holiday, etc) with the idea that something can and might go wrong.  If it doesn't great, but if it does, I at least don't feel blindsided by it.  Optimism does very little to help my anxiety and so I go with reality.  When I look to the year ahead, I don't hope that it will be the best year ever.  I know it will be difficult at times.  There will be plenty of times when I will wonder once again how I will manage it all.  How we'll deal with it all.  How I can keep my heart from breaking when I hear those familiar coughs.  How we'll help Tera with her meltdowns and how we'll manage trying to predict and prevent them.

This year brings one exciting experience and one potentially very difficult experience.  In June we, along with my inlaws, will take the girls on a Disney Cruise.  It will bring their first plane ride and then of course, Disney.  And in two days Tom and I will meet with Tera's cardiologist for another echo and he will tell us whether or not she will have open heart surgery.  It's something we've known about for a year, and have prepared for, but I need to have that final decision so I can deal with the idea of handing over my baby to have probably the most crucial surgery of her life.  And so when thinking about what 2018 has to offer, with the exception of vacation, it's hard not to be a little apprehensive.

In past years this is when I start to feel a lot of holiday letdown.  But I've already started de-Christmasing and I still have one more week with my girls.  I'm going to try and make the most of my time with them and deal with every new challenge as it comes, the same way we always do.  In the meantime I'm going to stretch every day, drink more water, exercise six days a week, meditate, write a book, live in the moment, become a vegan, make all my kids clothes....just kidding.  I'll workout, and exist mostly on coffee and wine.

Happy New Year family and friends, we hope it brings you health, happiness, and laughter.

Tuesday, November 21, 2017

The Ghosts of Thanksgiving Pasts...

I love Thanksgiving.  I love the whole weekend.  My husband is an amazing cook who never fails to produce an incredible dinner.  On Friday we cut down our Christmas tree and then we spend the rest of the weekend putting up our Christmas decorations.  It's a nice, long weekend filled with holiday goodness, lots of time with family, and in the best scenarios, relaxation.

But sometimes that doesn't happen.  Since Tera was born, our Thanksgivings have taken a turn for the dramatic (not in any way associated with her birth, just life in general).  One year she had pneumonia and was on steroids.  Damn Prednisolone made for a challenging weekend.  But that was the least of the issues that would plague us.  Four years ago I had, at the time, arguably the worst Thanksgiving weekend when I had a miscarriage.  That Monday I went in for an ultrasound that turned out to be some of the worst news we had ever received.  Tuesday I went in for a procedure, and then I had to deal with the reality of that situation the rest of the weekend.

Her Wrath of Khan transport
We recovered, as much as could have, and eight months later, we had Zoey.  Fast forward to November 2014.  Zoey starts daycare and about one week later, the night before Thanksgiving, she's struggling to breathe.  We take her to the ER, she's diagnosed with RSV and bronchiolitis, and spends the rest of the holiday weekend and the next 5 days (10 total) in the PICU at Lutheran General.  Tom and I miss Thanksgiving with Tera and the rest of our family.  And since I had just returned to work and exhausted my sick time, Tom stayed with her while I went home to take care of Tera and spent another 5 days without my baby.

Oxygen to get her through 
Surprisingly, though traumatized, the next two years were still met by Tom and me with enthusiasm for the holiday season, decorating, and trying to enjoy the holiday weekend as a family.  It's still one of my favorites.  But I will never forget those two incredibly bad, challenging, painful years.

And here we are.  Zoey is running a fever of near 103.  She's started coughing a little more.  And if you weren't aware, she just had pneumonia on Halloween.  There hasn't been nearly enough time to for her to get over that completely.  As I write this, I hear her coughing upstairs.  I know my baby didn't eat any dinner, had rosy cheeks, a hot little body, and just wanted to snuggle with me.  I'm hoping more than anything that this is an ear infection and that antibiotics and some rest will get her ready to participate in the festivities this weekend.  I also know that if this is an ear infection, she's more than likely facing her second set of tubes.

Looking sad, but in the best of hands
And despite this, I want to hold on to my holiday spirit.  I want both my girls healthy for Thanksgiving, I want to see them pick out the tree that will hold our ornaments and make memories.  I want to get extra cuddles, sweet smiles, lots of hugs, beautiful smiles, and a sense of relief from the weekend.

Finally feeling better
Tomorrow I will take Zoey in to sick call and hope for the easy answer.  I will go meet with her teacher and hear how brilliant and sweet our little miracle baby is.  I will hope that come Thursday morning, she is back to her sassy and defiant self and we can go on with our family weekend.  I will try not to think about spending Thanksgiving at Lutheran General and eating our holiday meal in a hospital cafeteria while the meal that Tom started to prepare gets salvaged, but not served.  I will try not to think about the physical heartbreak we once experienced.  I will try to focus on the future, and not the past, but it's not easy.  You never forge those experiences.  They change you as much as you hope they won't.  You try not to dwell, but the reminders are there.

I think one of the reasons I love this holiday so much is it is a reason to focus on what we have to be thankful for.  I have two incredibly strong, resilient, beautiful, smart daughters that show the world what it means to be fighters.  I have an incredible husband that goes out of his way regularly to show me how much he loves me and our girls.  I have the most amazing support system of family and friends that are always there for us.  I have a job I love, a house I love, and a life, that while challenging, I love.

And so a Happy Thanksgiving to everyone.  The Theodore Family wishes you a happy, healthy, enjoyable, restful weekend with your loved ones.
Momma and baby reunited after 5 LONG days 

Friday, November 17, 2017

Honoring our Preemie

It may be typical second child syndrome (or more aptly for parents, second child syndrome guilt), but while Tera gets a whole month and then another day in March for her awareness, Zoey alas is relegated to really only a day.  We have t-shirts proclaiming Team Tera, but for our baby, not so much.  Don't think it hasn't crossed my mind more than once and I don't even have a good answer as to why premature birth awareness oftentimes does play second fiddle to Down Syndrome awareness, but we're only two people that happen to have two very special girls and but not as much time as we might otherwise have. 

And so, I didn't want to leave this to another Facebook post.  I use this as my way to get my most important messages, both to me and to our family and friends, out there and this is important.  Today is World Prematurity Day and this is important because 1 in 10 babies born in the US are born too soon.  According to the March of Dimes, this is the second year in a row that the US preterm birth rate has increased and premature birth is the leading cause of death in children under 5 worldwide. 

The reasons behind preterm birth (typically defined as before 37 weeks) vary greatly.  It can be high blood pressure, gestational diabetes, babies in distress, and so very many other things.  Among them, two of which are placenta previa and vasa previa, both of which I had during my pregnancy with Zoey.  The causes are important, especially when trying to reduce the number of preterm births, but the science isn't what I'm focusing on right now.  I want to focus on, when a baby is born too soon, what that means.  Because ultimately there are two battles here, one is how to prevent preterm births and one is how to treat and handle the babies that are born too soon.  In our case, and in all the cases of the babies out there right now that were born too soon, the cause isn't as important as what happens once they arrive. 

As parents, your lives, and really the lives of the whole families, are turned upside down for days, weeks, months, and years.  The new "normal" of leaving your house to visit your child, the long stretches of time spent in a hospital instead of at home, the worry about how long they'll be there, what it is that's keeping them there, what life will be like when you do finally get to leave, and the wonder and fear of what the rest of their life will bring is constant.  You try not to get your hopes up too early, but all you can do is dream about walking past their room to see them sleeping instead of having to get in a car and spend sometimes insane amounts of time traveling to see your own child. 

But then you worry about when they do come home.  How will you know if something is wrong when they aren't hooked up to a monitor 24 hours a day 7 days a week?  How will you know what to do if something goes wrong? How will you manage the medications, the feedings, the appointments, the therapies, and the general care that goes along with having a newborn?  How do you know? The simple answer is you don't. 

You don't sleep well because NICU babies tend to grunt in their sleep frequently.  It won't matter much because you can't sleep well anyway because you're too worried about watching them breathe.  You make charts and set reminders for medications.  You nurse and pump the best you can because you know it's what's best, but sometimes you just can't because all you can picture is your first time being behind a curtain with 4 other babies in the room with their families while a nurse helps you situate all the wires in a wooden rocking chair with a plastic seat.  Or having to lock yourself inside a private room to do it but knowing the whole time that you're missing out on precious minutes with your reason for pumping in the first place. 

You watch them sleep in their own bed, with their own sheets, in their own clothes, and you constantly flashback to having to change them with your arms in plastic sleeves that went into their incubator so you didn't have to open it and risk their body temperature going down.  You take them in to appointment follow ups and think back to waiting each day for rounds so you could hear the all the doctors and students talk about your child and discuss what the goals were, what the next steps would be, and devise plans to tackle current problems. 

And then they start to get older and people ask if they will outgrow the issues that plagued them as babies and kept sending them back to the hospital.  You answer the best you can, they might or they might not, and try to deal with the current situation.  You go through good stretches that make you wonder if maybe it isn't getting better, and then bad stretches when you wonder how you will keep doing it.  You compare your child to other children, both preemies and not, and wonder simultaneously how you got so lucky and how they got so screwed.  When Zoey had pneumonia a few weeks ago she wanted to know why she couldn't go to school with Tera.  I explained that she was sick and she again asked why.  I responded quickly and dramatically that for some reason this was her lot in life (and her sister's) and proceeded to tear up at the fact that she doesn't deserve this.  Neither of them do.  They shouldn't have to have breathing treatments as a natural part of their day.  They shouldn't both have a pulmonologist, a cardiologist, and and endocrinologist.

I could go on an on about what the life of a preemie looks like, and how in the big picture, we are the lucky ones, because she is here with us.  She's a stubborn, dramatic, smart, creative, funny, strong-willed, independent, typical three old.  She's petite, but strong, sensitive, but defiant, and overall a really typical three old.  She just happened to get a 12 week head start on life weighing in at a mighty 2.5 pounds. 

I know a lot of preemies now.  Too many.  It is a struggle that I don't think anyone should have to endure.  It challenges your belief in yourself and at the fairness of life.  It redefines what is important, and reminds you to appreciate the little things.  If a platitude is running through your head right now, please feel free to not mention it me as I've heard many and not felt any better. 

We are preemie parents.  We don't take coughs lightly  We know hospital visits are not just a thing of the past.  We constantly reflect on that time spent in the hospital and appreciate how far we've all come.  We take each hurdle one at a time and try to remember that for all the struggles, we still have her. 

I struggle a lot at this time of the year.  It is truly one of my favorite things to host Thanksgiving at our house, but this is also the week that I miscarried, and then one year later when we had our sweet baby girl, she went back to the hospital for another 10 day ICU stay and her first Thanksgiving all together.  She missed her first tree cutting, we missed spending the holiday with our big girl and the rest of the family, and then I had to return home to take care of Tera and I didn't see Zoey for another 5 days.  And so on Thanksgiving I have more to be thankful for than I can express ever. 

But if you don't do anything else for Wold Prematurity Day, take some time to be thankful for what you have.  It can be something small or huge.  It can also be just appreciating something or someone a little more than you did before.   Be mindful of what you say to preemie parents (or really everyone) and remember that part of their lives never really goes away.  And if you know a preemie, take a step back and really look to see how far they've come.  They truly are the littlest and mightiest warriors.

Today I honor my littlest spitfire, mommy's pixie, Zoey Theodore Theodore; born on July 14, 2014 at 28 weeks gestation and weighing 2.5 pounds and only 14 inches.  Total NICU stay was 63 days and she came home on Sept. 15th, 2014 weighing 4 lbs 15 oz and just 17 days away from her expected due date. 

Thursday, September 14, 2017

Tonight, I'm not a fan of you Down Syndrome.

Tonight I hate it.  I hate Down Syndrome.  It’s pretty difficult to admit I hate anything that has to do with my children, but I feel very strongly tonight.  

This week Tera brought home a new notebook and an assignment sheet.  The assignment has to do with sight words and it’s from the regular ed classroom she integrates into.  Tom and I were thrilled that she was being challenged to do the same work as the other 1st graders.  Each day there was a different assignment and, had I read it more carefully, I would have planned a little better.  Tonight’s assignment was to write 5 sentences, one for each sight word for this week.  They had to have correct punctuation (1st grade level: capital first letter, spaces, period, etc.)  To modify this for her, I came up with the 5 sentences, intentionally making them as short as humanly possible.  See, I knew this would be a challenge tonight because she had OT from 4:00-5:00, came home, had to take a bath (which in and of itself was a struggle for Tom), eat dinner, and then we had to start the assignment.

Why would I intentionally wait until the latest time possible to do it you ask? Well, we can’t give her a bath too close to bedtime or she gets super wound up (the opposite of what’s “supposed” to happen).  By the time Tom actually got her bathed it was after 6 and since she wakes up around 5am, she goes to bed around 7:30.  She would not have been able to focus as it was since we knew she was hungry.  And we all know as adults how well WE function when we’re hungry…

So we started around 6:30.  She was doing great until about the 4th sentence.  At this point, she did not want to do another one.  We managed to get that one out, but at 5 she’d had enough.  She threw the pen, hit Tom, and then refused to apologize or finish her work.  I took Zoey up to get her ready for bed and Tom took another one for the team and fought the battle.  

In the end she finished the homework, wrote her sorry letter to the friend she hit today (another issue I’m having), but never apologized to Tom.  

So though I’m calmer now, here’s why I hate Down Syndrome today.

I hate that things that might take another 1st grader 10 minutes, might take her closer to 30.  
I hate that she still struggles with writing “b”, “d”, and “s” and apologizes when she gets them wrong.
I hate that she doesn’t know how to control her actions around friends.
I hate that kids don’t want to necessarily play with her because they don’t know how she’ll act.
I hate that Zoey can sleep in underwear at night at age 3, but at age 6, Tera is nowhere close.
I hate that as incredibly proud as I am of what Zoey is accomplishing every day, I’m heartbroken at the thought of Zoey passing her up.
I hate that 2 of her 3 activities are therapies.
I hate that adults, and kids, don’t understand what she’s saying.
I hate that we have to so carefully plan our events so that she’s not overwhelmed and prone to a meltdown.
I hate that I’m in such close contact with her teacher (who we love) because we’re both trying to constantly troubleshoot her behaviors
I hate that she has to wear orthotics.
I hate that she has to have a harness on the bus for her own safety.
I hate that I spend the majority of my waking hours, and many of my “sleeping” hours trying to find new ways to help her overcome the latest obstacle in her day.
I hate that we have to so carefully watch her calorie intake.

I could probably go on, but I’m starting to feel the cathartic effects of getting it all out and I don’t want to reverse the effects.  And so instead, I’ll make mention of what I LOVE about my Tera.

I LOVE her smile.
I LOVE her hugs and kisses.
I LOVE her enthusiasm for life (I’ve seriously never seen a kid so excited by groceries).
I LOVE her ability to love so strongly.
I LOVE that she’s so proud of everything Zoey does, even when she get can’t do it yet herself.
I LOVE her imagination.
I LOVE that she is an incredible big sister with an enormous soft spot for her often stubborn little sister.
I LOVE how her face lights up when she’s doing something she loves.
I LOVE how she’ll stop doing everything to pet Harley Quinn (who incidentally is quite fond of Tera).

This list could also go on forever, but you get the idea.

I love this kid (and of course Zoey) more than I could have ever imagined loving anyone in my entire life.  Which is why on days like today, it makes my heart hurt so much to know I don’t have the answers to the questions on how to help her best.  I research things, I read things, I try things (I’ve recently tried role playing with Wonder Woman and Supergirl to see if that helps her), I worry, I cry, and every day of her life, no matter how difficult, I’m so incredibly proud of everything she has accomplished.  

And if you are lucky enough to be on the receiving end of one of Tera’s fantastic, day changing, perspective altering hugs, you know the power that kid has.  

But shit, I really wish she didn’t have all the other bullshit to deal with….

Thursday, August 10, 2017

The 3rd anniversary of a pretty crazy time

In full disclosure, I started this the week before Zoey’s birthday (about a month ago)...
We’ve hit the 3rd anniversary of a pretty traumatic event: aka Zoey’s birthday.  Pretty much as soon as summer hits, I start remembering all the things I did with Tera and some of the events we had going on during this same time three years ago and as it got closer to the actual date I found myself spacing out and realizing what things are triggers and how seemingly insignificant things can actually be powerful reminders.  

This summer has been really nice.  We were able to take the girls on their first real vacation and when they’re home with me, we spend a lot of our time outside where they play in their pool and on their swingset.  I’ve been able to work out, get some work done, and in general, not feel as though I have something to get done every minute of every day.  

But in between those relaxing, enjoyable times, are the memories.  Last month as I was driving to the grocery store after having dropped the girls at daycare, the particular road I was driving on, at the time of day, with the particular weather, made me flashback to my daily drives to Evanston Hospital.  I would drop Tera off at daycare, then begin my 40 minute commute to see my new baby.  After a little while, the neighborhood of Wilmette began to feel like my own, because I would drive it almost every day and was always thinking about my family in some form or another; who I was leaving behind, who I was getting to see, who was with me, or who might be visiting that day.  

Each day I would pull into the familiar parking garage that at one point a year before I had entered so cautiously because I didn’t know if my truck would fit or how it wound around.  I now knew exactly which floor to go to, and which spots were the best ones for getting in and out.  I would lug my suitcase full of pumping supplies, books, my laptop, and snacks inside ready for my day.  I would walk across the lobby, down the escalator and to the cafe to pick up my morning coffee from the same person every morning.  I would then head toward the maternity ward, take one of the insanely slow elevators up to the ISCU, check in at the front desk, scrub in, and head over to see my baby.  I would catch up with the nurse who had Zoey for the day, hoping it was her head nurse, and see how her night went, if any changes were planned for the day, and settle in to wait for rounds.  The rest of the day was spent holding her hands, and eventually hold her, pumping, eating, hoping to change her, talking to her, and running my hands over her tiny legs, arms, and face.  Around 3pm I would get ready to head out, say my difficult goodbyes, stop and pick up my second coffee of the day, and head back to see my other girl.  For nine weeks we lived two different lives; at home without Zoey and at the hospital without Tera.  

Fast forward three years.  The same child that once needed machines to feed her and breathe for her, refuses help with turning on lights, putting on shoes, getting on the potty, and climbing into and out of the car, and so many more things.  The child that spent 9 weeks in ICU didn’t qualify for Early Intervention, had a brief stint in speech therapy, but whose language is exploding more and more every day.  The child that had been on thyroid medication since her first week of life should now be finished with it.  That little girl who seemed so frail and weak, so dependent on everyone for everything, is now the most stubborn, hard-headed, determined, and independent three year old I know.  

At three years old, Zoey Theodore Theodore (Zoey two times as she likes to say), knows her whole name, her birthday, and how old she is.  She weighs 28 lbs, is 37 inches tall, is potty trained, can count to about 15, can ride her tricycle, can climb out of her crib, just had her first real swim lesson, and starts gymnastics next week.  Some of these things may not seem incredible for a three year old, but most of them impress us.  Either way, considering that she started out at 2.5 lbs, 14 inches long, with transparent skin, a ventilator for nine days, and spent a total of 63 days in the NICU, she’s pretty damn impressive.  

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.