Thursday, February 26, 2015

Happy 4th Birthday Tera!!

I can’t even believe I’m writing about the fact that Tera is four.  When she turned one, it was emotional since her first year was so full of unexpected experiences.  Turning two and three were emotional, but not as bad as one.  And now four.  For some reason it just seems so old.  One of my favorite pictures of Tera (there are many) is a professional one from daycare when she was two.  They captured all that is Tera and her little face has the sweetest expression and her eyes are just full of life.  I can’t bring myself to change that picture on my desk at work or in the frame at home because she is so amazingly beautiful in it.  But it also reminds me how little she looks in it and how much she has changed since then.  

Aging children is an emotion I would imagine most parents, maybe more so moms, experience.  It’s a confusing time of trying to appreciate all that they can do as they get older and at the same time trying to hold on to the innocence and dependence of being a baby or toddler.  With Tera we pretty much knew we were going to have another one so even though it was hard at times to come to grips that my first baby was getting bigger and older, I was pretty sure I would get to experience that time again.  Now with Zoey, I find myself struggling with it so much more.

Despite the fact that Tera is still so little, I look at her chubby little hands next to Zoey’s tiny ones and realize how much bigger she is than her baby sister.  I watch her perform simple tasks and motions that at one point she struggled so much with and find it hard to believe there was ever a time when she couldn't do it.  I wondered for so long how old she would be when she would finally start saying funny things and now that she does, it’s hard to remember how anxious I was to hear that first word.  

Tera’s birthday, and I imagine Zoey’s will be too, is a day of mixed emotions.  On the one hand we were finally able to meet our first child.  Despite an easy pregnancy with her, I didn’t particularly enjoy being pregnant and so the end came with a definite wave of relief to be done.  She was an easy, short delivery and before I knew it, I was holding that tiny little stranger in my arms still in disbelief that she was really ours.  But then amidst the excitement and exhaustion of our first hour of parenthood, came the news we had no preparation for.  In one sentence our lives changed forever.  Fear and sadness temporarily pushed aside our happiness.  We didn’t just have a new baby, we had a new diagnosis.  Our tiny little girl was different and would always be different.  

When we shared the news with our family that day, we only shared part of our news while we tried to accept and come to grips the situation.  I felt like a liar as I told people that she was healthy because I didn’t think that was entirely true.  We cried.  A lot.  We were scared and worried and at same time, still very excited and in love with this new little girl.  

Four years later, I can honestly say, that while it’s still a little scary, it’s not nearly as scary as it was that first day.  She has touched so many people and has most definitely changed our lives.  She is not an easy child, but her defiance, fire, tenacity, independence, and strong will are what make her so incredible (and many times are the traits that drive us the most crazy).  

There are still a lot of times I cry.  Not necessarily just because she has Down Syndrome, but because of some of the things it entails.  As I lay my hand on her chest when I’m trying to get her back to sleep at night, I feel the whooshing of the blood through the hole in her heart instead of a steady beat.  I listen to her snore as she breathes through her mouth because her passages are so small and her tonsils are so big.  We worry more about pneumonia, ear infections, sinus infections, digestive issues, and skin problems that are common to kids with DS.  She has orthotics that prevent her from wearing cute shoes and will probably never be even close to as tall as either of her above average height parents.  Her larger than average tongue and low tone make speech more difficult.  

But...she is known everywhere she goes.  The doctors and nurses fawn over her, she delights all her therapists with her energy and accomplishments, she inspires people all around her, her picture brightens the day of people she’s never met, she has an infectious smile, a willingness to do things that are difficult for her, and continues to amaze Tom and I daily (she also challenges us daily but that’s for another post…).  

So what does Tera love right now? She adores her baby sister.  I mean, truly loves her.  She loves her baby dolls, her kitchen, coloring and painting, jumping on her trampoline, reading, puzzles, her new dollhouse, dancing, tea parties, her Star Wars guys, Batman, dress up, and tools.  Her favorite things to watch are: Doc McStuffins, Sofia the First, Phineas and Ferb, How to Train Your Dragon 1 and 2, Gnomeo and Juliet, Monsters Inc, Despicable Me, Little Mermaid, and Lion King.  She still struggles with her colors, but I’m pretty sure I’ve convinced her to love purple.  She loves peanut butter and jelly, meatballs, pasta, waffles, eggs, avocado, cupcakes, popcorn, blueberry greek yogurt, and bananas.  She’s currently in hippotherapy and loves her pony Chance, she does private speech and OT once a week, and is in the literacy program at Gigi’s on Saturday mornings.  And she loves life.  Tera does everything with more energy than I can muster in a whole day.  She loves fiercely, hates when people are upset or hurting, and despite the fact that she challenges every ounce of patience I have on an almost daily basis, I simply cannot imagine my life without that little hellion.

So to you my sweet Tera, on the fourth anniversary of your birth and also of us becoming parents, I want you to know how much we love you.  You make me proud to be your mom and inspire me to be a better person.  I look at the world differently as your mom and it is a better place.  

Tuesday, February 17, 2015

I'm afraid to think about what will happen next...

I don’t really know where to start in describing how we’re dealing with all the sickness that has taken a hold of our household these past few weeks.  I don’t want to recant every single detail, but let’s just say three of us have had strep and the flu, Zoey had (has) a virus that has been going on for three weeks, Tera had an asthma attack and stomach virus, I got strep again, Tera got an ear infection, three of us had pink eye, and we think Zoey may have another virus.  I have most definitely lost count of all the prescriptions we’ve filled, but suffice it to say, if we weren’t already pretty close to our pharmacists before, we might be invited to Thanksgiving dinner next year.  The doctor’s office and all the staff must either think we’re hypochondriacs or carriers of the plague.  We’ve had to cancel more appointments and get togethers than I can ever remember.  

Tom and I now leave the house with a feeling of dread about what we can only assume to be an impending phone call telling us one, or both, of the kids is sick.  I leave work each day with things that need to get done, even if I have no intention of it getting done that night, just in case I have to miss work again (although it usually isn’t a situation that allows me to get work done anyway so I don’t know why I do it).  I make sure every afternoon that I leave that my materials are ready to go for the next day so that sub plans are more easily assembled and so that if I end up running really behind because we have too many medications to administer, at least everything is ready to go when I finally do make it work.  

I’m not sure what the lifespan is on a nebulizer, but I’m waiting for the motor to start smoking any day now from having to do multiple treatments on multiple children multiple times a day.  My mom has become too afraid to ask how everyone is doing although she credited me last week for at least being able to retain my sense of humor through it all.  I told her I either have to laugh or cry (I’ve done both).  

I’m so completely exhausted when I get home because all I do is play catch up at work, I’m constantly trying to get better myself, and the energy it takes to keep track of everything we need to do to keep these two kids from getting sicker is oftentimes quite overwhelming.  Multiple antibiotics a day, vitamins, probiotics, regular medications, who’s getting which nebulizer treatment which day (or doing them back to back), emptying and refilling humidifiers, saline spray, suctioning, and eye drops.  And that’s on top of the normal things we need to do, you know, like feed and bathe them (and ourselves).  And this all takes place between the hours of 5 and 6am and/or 5 and 9pm.  Sleep patterns for both of them have been disrupted which has resulted in all of us getting less sleep at night.  The kids at least get to take naps, Tom and I just drink more coffee.  

This has pretty consistently been a bad time of the year for Tera.  She didn’t start out problem free, her first birthday brought her first case of pneumonia, her second February was filled with sickness, her third February, while more minor than previous years still had its share of issues, and this one hasn’t started out so well either.  I had a feeling all along when she had her longest streak ever of being healthy that it was going to end with a bang, and while it wasn’t pneumonia that ended it, it was strep AND the flu.

And through it all, these two girls are such troopers.  Taking all the medication, sitting through nebulizing treatments, and in general just feeling sick all the time.  And then they both still have all the normal kid stuff to do like learning new things, trying to behave, and they both have therapy sessions.  

This was a super stressful time for us when there was just one of them, but now that there are two of them? And that they both have their own health issues to contend with doesn’t make anything any easier. Each day seems to bring it’s own new complication; a runny nose that wasn’t runny the day before, an increase in the frequency of a cough, a goopy eye, or a general lack of improvement overall for either of them.   

And in the midst of this craziness somehow Zoey turned seven months old and Tera will be four in a week and a half.  My girls are growing faster than I can keep up with and while I’m trying “enjoy these times”, we spend half our time together as a family at the doctor or administering medicine.   But it makes me want to squeeze them even more to know that at least we have this time together.  No matter how miserable any of us may be at any given time, we are so lucky to have them; boogers, coughs, and all….

The doctor has no idea how she hasn't been
more miserable and uncomfortable as a result
of her infection.  This is just one reason why
she's so amazing.  
**Update: since finishing this Zoey has been diagnosed with a bad double ear infection accompanied by a sinus infection that has left her coughing pretty much all day.  I’m looking forward to a great night of little sleep while I listen to my little one’s discomfort.  Why does being a parent have to hurt your heart so much?