January 30, 2012

Balancing Acts

Samuel got RSV a few weeks ago. Despite the mega-expensive Synagis shots and all my caution about exposing his fragile little immune system, he still caught it. All in all, it was a pretty mild strain. It still made for a really long week.

Smiling during a breathing treatment
It started fairly slowly, with a stuffy nose one day, a small cough the next. By the time we were in front of the doctor the third day, he was wheezing and his pulse/ox numbers were back down to pre-surgery levels. They threatened to send us to the hospital to put him on oxygen, but he responded well to a breathing treatment and we were sent home with a nebulizer and a lifetime's supply of Albuterol. Like seriously. Even after round the clock treatments for 7 days, I still have like 2 boxes with 40 vials in each and 5 prescription refills. Disaster planning, Dr. B? I think maybe so.

During those first days of his virus, it was pretty scary. His little chest was so congested and he was so miserable. Some time in the wee hours of Day 4, I was sitting in the living room, holding him upright on my chest so he could try to sleep, listening to him cough and wheeze, and just panicking. I couldn't decide if we should be taking him to the hospital or if he was truly okay to stay at home. I looked at his tiny little face, flushed with sleep and coughing, and I realized I was completely powerless. I couldn't do anything to help him breath. I couldn't give him oxygen, I couldn't breath for him. 

I hadn't felt that helpless since his heart surgeries.

Just about the time I'd made up my mind to wake Travis up and tell him I was going to the hospital, Sam's breathing evened out and he slipped into a deeper sleep, cuddled into my neck. The rattling in his chest was still there, but he was comfortable. He slept until his next breathing treatment, 4 hours later, and I finally relaxed enough to put him back down and go to sleep myself. 

It never got any worse than that night, and now, two weeks later, you can't even tell he was sick. Proving once and again, that babies are the most resilient creatures ever.

Samuel's health has dictated so much of our lives for the past 6 months. Even now, heart repaired, pacemaker plugging along, and cardiology appointments spacing out, his therapy schedule still takes control of at least two days a week. Soon, we will be adding another bi-weekly therapy. Throw in a couple of sick visits to the pediatrician, plus still catching up on vaccines, and our calenders are literally full of appointments for him. 

When our Early Intervention case manager first started talking therapies with us, she was reluctant to add too many at once, cautioning us about how easy it is to get overwhelmed. At the time, I scoffed and thought to myself, "This is my child. I will do whatever it takes to give him what he needs. Bring it on. Load us up."

But now. Well, I understand it. Some weeks, I do feel overwhelmed. When I have to pass on play dates for Luke or have to wait a month to get in to the dentist because my schedule is so limited, it's frustrating. I wanted to go back to work part-time to get a few hours out of the house, but I don't think I can ask my boss to be that flexible right now.We are still plugging away at speech and physical therapy, and yes, we will be adding in a nutritionist to the team in February. Samuel is making really good progress in all areas and I really like these women who come to my house to teach me and Sam new tricks. I don't want to stop, but I don't know how to find the balance yet.

We've seemed to have jumped the hurdle of the heart defect, and now we are smack dab in the middle of learning what it means to have a child with Down Syndrome. I had no idea that an infant with DS = therapy, therapy, therapy! I'm trying so hard to learn more about DS and the new lingo that comes with our new life, but it's a steep learning curve.

Don't get me wrong, I know that Samuel has so many advantages over children who were diagnosed decades ago. I will do every therapy they suggest, buy all the books, pick the brains of the DS families that have gone before me, and try my very best to nurture him during these early years. But it really has taken over my life in so many ways, and I don't know how to make that fair to Luke.

And the pressure of it all to do it right. Gah. It's killing me.

There are numerous blogs out there written by other DS parents. Some are helpful, some are informative, and some are overkill. I've had to delete several from my RSS feed because I simply can't handle the pressure they dish out. I know that all the research out there indicates that the earlier you intervene and actively pursue therapy, the better off the kids are. But my brain just can't cope with all the myriad of ways people take that statement and twist it around. I cannot devote my entire day to researching all the rabbit holes of theory or which top 10 toys will best stimulate him. If playing on the floor with Luke and his old toys isn't enough, then I'm already failing him. And I just can't go there mentally, day after day.

Samuel is a part of our family, but he is not the only member. I want to do everything perfectly for him so badly and I often feel inadequate to that task, but I also want to do right by Luke. And by Travis. And even by myself. 

I don't know if that fact that I'm not willing to go down the uber-neurotic, obsessive DS road makes me a bad parent of a special needs kid or if it just makes me sane. I don't know if I'll ever get an answer to that question, but I obviously need to work on being more at peace with the road I have chosen. I know I can't spend my entire day devoted to discovering the latest and greatest, but I also know I can't spend each day beating myself up over it either.
Something has to give.

January 17, 2012

Dear Luke

Dear Luke,

According to that little widget on the side, you are 2 years, 4 months, and 2 weeks old today.  It's actually your baptismal birthday. Happy two years of being a baptized child of God.

Not exactly your typical milestone kind of day, I know. However, today was a very typical day in the life of Luke at 2 years of age. One that we all just barely survived.

That's what it feels like to me so many of the days during this phase in your life. That instead of enjoying every moment, I'm staring at the clock, mentally calculating the hours left until 8 PM and your bedtime. Part of it is your burgeoning (strong)will and part of it is just the chaos of having two young children at home full time. I love you and your brother very much, and I made the decision to stay at home with you all and I don't regret it.

But Good Lord, it's hard work.

Your little brother caught some kind of RSV-like bug last week and has had your dad and I very worried. He's required breathing treatments every 4-6 hours and lots of holding and vigorous back patting. In fact, I don't think he's been flat on his back for longer than a diaper change since last Thursday night. It's been a long week for all of us, but I feel it's been especially hard on you. He's finally on the mend, but your acting out has just continued to escalate.

Today alone, you were in time out no less than 15 times. For everything from chucking a sippy cup at my head to having a meltdown over not being allowed to chase the garbage truck down the middle of the street. (Which, by the way, you did wearing only a t-shirt, big boy underwear, and sneakers.)

When your uncle was a little boy, we lived on the Gulf Coast of Mississippi. In various grocery store parking lots there are located Home of Grace donation boxes. They are there for people to drop off clothes and shoes for people in need. Kind of like mini-Goodwill stores without any staff. They were little huts with just a hinged door on the top for you to drop your donations into. Your uncle shared the same strong will and tendency towards multiple daily time outs as you do. Well, when he was about your age, it became a family joke that my mom would threaten to drop him off at a Home of Grace box when he was acting out.

Today, I was wishing for a Home of Grace box of my own.

In fact, I'm pretty sure I threatened you with one. To which, if I remember correctly, you just laughed and continued to fling the entire contents of your toy box across the room while I was tethered to your brother's nebulizer.

We are in the midst of potty training and it's the most frustrating thing ever. Which yeah, I know, everyone says. If we leave you completely naked from the waist down, you are like 9 out of 10 on making it to the potty in time. However, if we have left any scrap of material on...a diaper, a pull up, underwear...you will completely forget about the potty. And then I do 2 loads of laundry. Every day.

You eat from (and only from) the four major toddler food groups: Applesauce, Chicken Nuggets, Crackers, and Cookies. Oh and salsa. You love salsa. You can pass the vegetables on your plate to the dog faster than I can stop you, but you'll eat salsa with a spoon. Go figure.

And yet. Yet. You are still completely lovable and adorable. While you've mostly just ignored Sam these past 5 months, all of a sudden you are all about being in his face. You like to pat his head and shake his toys for him to grab. When I ask you if you want to hold him, you smile and immediately lay flat on your back. For some reason, you think that's the way you are supposed to hold him. You want him stacked on top of you like he's a Lego. Even if I prop you up on the couch and place him in your arms, you scoot your butt down until you are horizontal again. It's so funny.

You are finally starting to talk more. You get my attention by yelling, "MA!" and you can ask for a ball or for a cookie. Mostly, the "COOKIE!!"

And dancing! Oh my goodness. I love your dancing. Everything from Elmo's theme song to Veggie Tales to the 80's station on Pandora, as soon as you hear it, you stop whatever you are doing and starting breaking it down. Shoulders heaving, toes tapping, twirling in circles...you've got moves kid.

So as you (finally) lay your sweet head down tonight, I try to let go of the bad and embrace the good of these "terrible two's." Here's to hoping we both survive the next 8 months.

Fingers crossed.

I love you, sweet boy of mine.


Showing Off

January 2, 2012

The Christmas Card That Never Was

Dear Friends, Family, The Internet, etc.,

This year we resolved that we were finally going to join the ranks of friendly, responsible, caring families who send out Christmas cards with a picture of our lovely family for you to place on your fridge so that you may gaze upon our smiling faces as you go back for seconds of eggnog. We were even thinking about going all out and writing a letter. I mean, it's not like we don't like you, or that we mind sharing. Between this blog and Travis' column, it's pretty obvious that we are open about how life's been treating us.

But as is evidenced by that blank space on your fridge...Erm. Well. We never actually got around to sending the card, writing the letter, or even taking a picture. Personally, I'm going to blame it on the picture. Do you have any idea how hard it is to get a family photo with a two year old as part of your family? Well, yes, you probably do. That's why you are smart and start trying for one way back in July, back when you still have a 5 month cushion to get one in.

However, as most of you know, our lives took a pretty drastic turn back in July and now, 6 months later, we are just getting our feet back under us. When I looked through our photo files back in early December, I was dismayed to find a stunning lack of group photos. Plenty of shots of Luke doing crazy things or pitiful pictures of little Sam all hooked up to monitors, but not a single photo that included all of us that I was happy with.

Part of my family came to NC to spend Christmas with us, so I was determined that with extra hands around, we would finally come away with our coveted family photo. As our time together came to a close, I looked through our memory card and realized we still were lacking a fridge-worthy photo. So, I bundled everyone up and herded them out to the dock of the rental house we were staying at, and finally got it. As you can see from below, Luke isn't looking anywhere near the camera, but considering what the outtakes look like from this photo shoot, this is a pretty fabulous shot. Many thanks to my brother for capturing it for us.

So, even though this photo was technically taken after Christmas and photo cards are no longer on sale, thank God for the internet and it's ability to give you excuses to do everything digitally. Without further ado (sorry for all the ado-ing it took to get to this point), our Christmas card for 2011!

2011 was a year for surprises and change.

Between Samuel's birth, his surprising diagnosis, and our world getting turned upside down as we faced a month in the ICU getting his heart fixed and a pacemaker installed, his entrance into our lives has created a huge splash. But, can I just tell you something about my Samuel? Despite (or maybe because of) everything he's been through in his short life, he's the sweetest baby I've ever known. I can't wait to watch this little guy grow up and love on him every step of the way. He's been doing so much better. Between physical therapy and feeding therapy, we've seen him make big changes in the last few months. And we are finally getting to the point where at the end of a doctor's appointment they say, "Alright, see you in a year." YES!

Luke has been changing rapidly in every aspect. When I looked back at photos from last January, I couldn't get over the physical changes. He went from a pudgy toddler rolling around in the snow to this stretched out little boy who goes careening around my back yard yelling at the top of his lungs...for no apparent reason other than just because he can. He's still not talking very much, but his physicality is amazing (and FRUSTRATING). He needs a toddler treadmill to help burn off some his excess energy every day, cause Lord knows, I'm not capable of helping him do it on my own. He can be quite the terror these days, but I love his strong little personality and watching him learn new things.

Travis has undergone huge changes at work this year. They've had almost a complete turn over in their staff this year and he is now the interim senior pastor with a new music director and one veteran secretary holding strong. The congregation will vote in the coming months about making this a permanent position for him. While I struggled at first with him taking on extra responsibilities during these hard years of raising young children, there is no denying the joy that is evident in my husband these days. He is excited about going to work each day, and is full of new ideas and passion for these people and for God's plan for them. We'll continue to work on setting boundaries between work and home, but I'm not as stressed about it as I was before. It's worth going through all of it if at the end the day, the man who comes home is happy and fulfilled by his work.

For me, the past year was full of changes. As the year went along and Samuel was born, my world got smaller and smaller. For the first 2 months of his life, I rarely left the house except for trips to the grocery store or Target. Then it was back and forth between the hospital and home. Now that we are on the other side of the pacemaker, my world is starting to open up again. We venture out to church most Sundays and I'm excited to get back into leading my confirmation group and handbells again. I am able to get to the gym a couple of times a week now and I'm not looking quite so postpartum anymore. I'm excited about getting back to work for at least a few hours a week just to have some adult interaction in my life. I feel like now that Samuel is getting settled down, I can finally start to pick up the rest of my life again. It feels good.

I'm not sure what 2012 will bring for us, but after having survived 2011, I feel like we can probably handle whatever it dishes out. Bring it on, 2012. The Nortons are ready.